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School avoidance 12 yr dd with nausea retching etc

(93 Posts)
cestlavielife Thu 11-Oct-12 23:01:05

Dd 12 has had dizziness and nausea since June missed last half term of school. On and off in summer possibly vestibular neuronitis but not recovered. ENT and paed suggest psych issues. Referred to CAMHS but seems they fighting between hospital based cams and local team where we finally got apps for some family issues (separated moved from fami,y home with dc 2008) contact has been difficult with ex with mh issues and bullying behaviours .

Dd doesn't wish to see dad. So doesn't.

Got her to school a few days; tutor was helpful, send her in once she here she fine .
But since last Friday she is retching, says is more dizzy, pallid, slumped literally can't get her up. Tutor says drag her to school .she needs to be here. The medical reports don't justify her absence because they don't say she is too ill for school. They say lack of recovery may be due to psychological symptoms. But even if psychological her symptoms are "real "

I really don't know how much to push shout scream drag physically or if that is the wrong way ?
Cajoling doesn't work

Threatening " if you don't go you gong to fail the year " just causes more anxiety.(school is not a lea school so not same level of pastoral care or support it would seem....

If can get appt with CAMHS what can they do and what can they write to justify her absence from school ?
If is anxiety (she loves school, no issues it makes no sense... ) then is still "genuine" reason. ?

Don't know what to do really...

Alonglongway Fri 12-Oct-12 21:19:13

been through a couple of years of this with similar age DD

To answer your questions:

child needs to be able to cope with school - all the dragging and cajoling won't help. We did loads of that on the school's advice and it just made things worse

"if you don't go you are going to fail the year" - well when they are really anxious they can't see beyond the moment, so failing the year means nothing except maybe an extended horizon of misery

My DD was diagnosed with anxiety and has been receiving CBT from a specialised CAMHS clinic - has gone very well and she is coming on leaps and bounds. But I had already taken her out of mainstream school by the time we got to CAMHS and so I don't know if the CBT would have been enough to get her back.

I didn't go down the road of trying to categorise it as genuine illness. I never understood it well enough myself and I always thought the school saw it as weak parenting so I just didn't try to argue that.

Sorry...not sure I've helped. Happy to discuss on DM if there's anything you want to talk about. I do know how stressful and isolating this is

cestlavielife Sat 13-Oct-12 21:04:54

Tks. . This has been five months since June. . Idea of couple years is a bit ugh...will pm you.

HappyStreet Tue 16-Oct-12 16:50:27

My daughter has been suffering from anxiety and panic attacks since May 2012. She has had it before and the trigger seems to be that she cannot cope with feeling ill in front of people and having to tell someone that she is not feeling very well. My daughter started with a heavy cold and felt sick at school. She was uncomfortable telling the teacher and school nurse who was not very sympathetic and didn't seem to notice that she was there! My daughter is very sensitive and this reaction had a lasting effect with her and from this she developed anxiety and panic attacks about going back to school in case she felt ill again. She hasn't been to school since May due to her anxiety and panic attacks and initially it was a nightmare. It seemed to take forever to get any help and this made me anxious which made my daughter even more anxious. We seemed to be going around in a vicious circle and family life was a nightmare. I didn't know how to cope, whatever I did or said was wrong and ended in us shouting at each other. I was always pushing her and trying to make her see sense which I now know is completely the wrong way to go about anxiety. We were eventually referred to CAHM's by our doctor and who have been brilliant. She is now having CBT which she loves as it gives her the chance to talk to someone who really understands how she feels and between them they have worked out the route cause of her anxiety and are now trying to help her deal with her feelings which will hopefully help her in the future if this was to return again. The ironic thing is she also loves school and really misses her friends (she hasn't seen anyone since May). She has a home tutor who is brilliant and who next term is going to help reintergrate her back into school. This will take very small steps at first until her confidence returns and she could even go backwards for a time but I am confident that she will get back with the help of CAHM's and her home tutor.

It is very frustrating as a parent, you don't know where to turn and you feel so alone but at the same time you have to try and stay calm and understanding. It has been one of the more stressful times of my life but now I feel that she has gained lots of confidence and the pressure is off me and my daughter and we are now functioning as a family again.

I wanted to post you this message to give you some hope. I hope your daughter is feeling a little better. Don't push her as I did with mine as it only makes them worse and get some help from your doctor and a referral to CAHM's. In my opinion schools need more understanding about children with anxiety and should not be making you get her into school as this will put pressure on her and make her condition worse.

cestlavielife Tue 16-Oct-12 23:19:02

Tks happy. It is good to know others have been thru similar. It has been a big step for me to accept that this won't be solved soon and yes I am now resigned to this being something that could take all this term to resolve . Or settle. Or something...

Had first assessment with CAMHS today and was helpful but they not yet decided next steps I think will discuss with paed. I asked about cbt for her, hopefully they will come up with a plan. But there is a good reintegration officer n the lea who Ispooke to andnwas v helpful he can organise tutors (is up to ten hpurs per week apparently ) or refer as day pupil to hospital school (but there is a wait list ) and liaise with school.... I am still pissed off with school attitude...

Paed following up referral for MRI and to physio for vestibular exercises for the dizziness....

Onwards and upwards....

HappyStreet Thu 18-Oct-12 09:21:02

It took a while for us to get any structured support set up but you will get there. I think that was half the problem in our case. We didn't know whether we were coming or going and the longer it went on the more anxious we all became and this fed my my daughters anxiety until she became really depressed. I know what you mean about school. Our school seems to have backed right off now that we have CAHM's. We can't get in touch with anyone at the moment. It's so frustrating!

Just wanted to post to offer some support.

As a family we've experienced school issues with two of our DCs. The first time the transition to secondary triggered General Anxiety Disorder and Emetophobia in DC 1. We intially followed all 'professional' advice in terms of strategy. Our DC had 96% attendance in year 7 even though he was a wreck, spent large chunks of his day with the school nurse in the medical room, suffered multiple panic attacks every day, had disrupted sleep most nights and not surprisingly was becoming increasingly depressed. We allowed this to continue because we were constantly told by teachers, SENCOs, GPs and educational psychologists that the only way for our child to get better was to be supported in school. Then one day we realised this was actually ridiculous and no adult with similar symptoms would be in work, yet here we were epecting our 12 year old to cope with levels of stress few adults ever experience. We took him out of school the next day.

When we finally got an appointment at CAMHs, ( I rang and pleaded for advice if not an appointment) we were quickly refered to a psychiatrist as the psychiatric nurses realised we had already exhausted every therapy: CBT, hypnotherapy, relaxation techniques, classical music, exercise, distraction techniques etc. So basically after 18 months of hell DC got what he had actually needed all along: medication. Within three months we had our son back. Within six he was back at school. He has never looked back - academically, socially, everything. He has just gone away to uni and although it's early days, he is coping well. He still takes meds, although there have been periods where he hasn't needed them.

When I look back I understand the reluctance to medicate the under 18s and I think as a parent you want to exhaust all other possible options first, but when I think about the level of his suffering in the 18 months prior to the drugs I honestly wish he could have taken the damn meds sooner. When a child has no life, when they can barely function, the negligible risks of meds are put in perspective.

I just wanted to add our experience for anyone who is at the end of their tether with 'talking therapies' or battling to keep a seriously distressed child in school because it is the accepted wisdom that 'once a child is taken out of school you will never get them back.' Trust your instincts. You know your child better than anyone else. Children need to be well before they can be, in any capacity, successful in school. Oh and in my opinion medication shouldn't always have to be the last resort.

Good luck to everyone who is battling with these issues or similar at the moment.

cestlavielife Fri 19-Oct-12 00:05:16

Followed up with psychotherapist who assessed , she not willing to give a diagnosis or label just yet. will need to set up some sessions with her .

Dd still complaining of Physical symptoms dizziness etc and not able to do much at home. If was just school linked anxiety would be ok ? Or now it all so entrenched and mixed up eg guilt at. Not going to school ?

My work have agreed I can work from home In the mornings, in office in the afternoons which will ease my stress levels ! For one month then review .

I am still finding it hard to get my head around fact this likely will take months to resolve... Some part wants to say oh after half term she will go back and all will be fine.., but seems unlikely.

So first option to try is after half term likely to be local small tutor group For kids not at school... three times per week held in local school there is another year eight pupil attends and try and get her back doing some English and maths at least... See how the physical symptoms manifest... See if some Cbt will help...

Emphatic I would not be opposed to drugs... But we still have MRI outstanding before going down that route.

HappyStreet Sun 21-Oct-12 20:54:27

Don't worry. The first time my daughter had anxiety we were taking her backwards and forwards to the doctors and hospital for blood tests constantly It originally started with swine flu and nausea in Year 6. We still don't know at what point the swine flu became anxiety but it took 3 months just to find out that there was actually nothing physically wrong. It was from this moment that we could actually start treating her for anxiety and got CAHM's involved! It took 6 months to get her back into school full time.

This time around however, it started in Year 9 with a heavy cold and feeling sick and had similar symptoms to the swine flu. This triggored all the feelings of anxiety and panic. We couldn't believe it! It has been much more stressful this time around. She is very hormonal, gets really depressed and is paranoid everytime she feels ill. It has affected our family life and certain family members just can't get their heads around the fact that she is mentally ill. They think she is just being silly and should pull herself together. This really gets me annoyed as it makes the situation much worse.

We have just had a nightmare week as she has had a cold and her period has started and she just cannot cope feeling ill in front of people. I have had to cancel her tutor twice, her CBT sessions twice and hopefully tomorrow she is going to get back to doing some school work. CAHM's are going to try and reintergrate her back into school next term so thats going to be so stressful for everyone! Can't say I'm looking forward to it but at least it's a start and we have to start somewhere.

Hang on in there things will start to get better but it is hard and I do have an idea how you are feeling. I have felt ill this week with stress but at least the holiday is coming up.

cestlavielife Mon 22-Oct-12 16:22:08

yes at least half term next week means less pressure...bu a recognition she has lost half a term!!!
have meeting at school this week and meeting with reintegration officer tomorrow see how she feels about the tutor group...

hope your dd is back to felling ok and working, happy.

mindfulmum Wed 24-Oct-12 22:13:56

Message withdrawn at poster's request.

cestlavielife Thu 25-Oct-12 16:26:08

tks mindfulmum.
we had a meeting today at school with teacher and SENCOtype person and school were v keen on drag her here at all costs...i said i would bring dd tomorrow to talk to the SENCOtype person.

also school said that so far the medical reports/letters dont say specifically "she cannot atend school" tho have said "she is having trouble attending school" so from their pov she is unauthorised absence! however as you say i am sure we can sort out the paperwork... they have to complete their evaluation forms for her for the term and so far obviously they cannot fill n anything. if was appendicis/broken leg of course they would be fine but throw in somehting MH and they dont know how to handle it?

i called psych again to follow up and they said they thought we "were talking to the paed as it was medical not psychological" (aagghghg) and that dd "didnt want to see us". pushed from pillar to post... i said no, she needs to be assessed properly - they have a new child psych on board n november so happy to give her dd as case number one it seems... so hopefully this will happen.

i will take on baord what you say about other provision - it is there and on offer; dragging her to school doesnt feel right; she is a clever girl and needs help to make that decision to want to go to school and to be able to cope physically /emotionally - persuading her to get to small group with only one or two other children is a much easier step to push... dumping her at school in hope they will care for her is risky...

HappyStreet Sun 28-Oct-12 10:18:31

This is really useful advise. It always takes such a long time to get the help you need with this and by the time you get that help you've been through so much stress and turmoil. I'm sure that if you could get the right help right at the beginning and schools had a better understanding it would prevent your child developing a deeper case of anxiety and depression. I don't know whether it's right for schools to be saying that the child "must be made to get to school no matter what" as this only adds to the situation and puts so much pressure on the child and in our case appeared to deepen my daughters anxiety.

We have currently got a tutor for 5 hours a week and my daughter has therapy for an hour and a half a week. Next term they are going to try and get her into school for the first time since May. This is going to be very stressful for my daughter but the only thing is that she really wants to be back in school so I suppose she has to start somewhere. They are going to take her somewhere very quiet to start with where she will not see anyone but can get used to being back in school and then she will have a friend to come and sit with her and very slowly they are hoping to reintroduce her back to the class environment. She is a bright girl and wants to be back with her friends desperately but faced with any pressure and she crumbles. As parents we don't get our hopes up anymore as we have had so many lows with this situation that we have been left feeling numb. We have been offered a therapy session with CAMH's and a family liason person to help us as a family as at the moment we are really struggling with various aspects of her anxiety and the roller coaster ride that comes with it.

We have also decided that our daughters life may not take the route we had expected so that has taken some pressure off. It is good to hear about your daughters experience and I hope she is happy and successful in all she wants to do.

TeenProbsSolved Wed 31-Oct-12 15:40:13

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cestlavielife Wed 31-Oct-12 18:29:37

right now she wont go anywhere eg wont come out trick or treating even tho she wanted to. v pale grey dizzy.
is interesting that symptoms might point to control issue yet at same time v physical, which could be a serious mh illness.
will update after MRI on tuesday which presumably will show nothing physiological.

mindfulmum Thu 01-Nov-12 10:31:33

Message withdrawn at poster's request.

mindfulmum Thu 01-Nov-12 10:41:32

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mindfulmum Thu 01-Nov-12 10:46:00

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HappyStreet Sat 03-Nov-12 10:41:44

I sense we have some similarities between our dd's situations although you are still going through the initial stages and I wish you all the luck. My dd used to love going to her grandparents for sleepovers but because they know about her situation she wont go anywhere near them now which is causing so much trouble between us. I have tried explaining the situation to them but they just don't "get it" which is starting to really frustrate me. If they could just back off and accept that this is the way things are for now it would take the pressure off my dd but it just gets bigger. Many times we have arranged to do something which my dd has been looking forward to but when it comes to doing it she backs off at the very last minute which can be so frustrating but you have to try and keep cool and be understanding which is really hard. I hope everything goes well for you on Tuesday. We also have a "big" week next week. Up until now CAHM's have home visited my dd for her CBT but next week they want her to go to them. I just know this wont happen as she just wont go to any appointments anywhere - I can't even get her in the car. She goes into her bedroom, wont talk, looks pale and dark under her eyes and is very clammy. Her whole mood changes - she almost becomes another girl. Usually she is very happy, friendly and loving. Afterwards when she has failed to do something she either wants constant reassurance and love or she is very angry, constantly cries and lashes out. Anyway good luck for next week and remember you're not alone even though it may feel like it.

mindfulmum Sun 04-Nov-12 11:04:44

Message withdrawn at poster's request.

JuliaScurr Sun 04-Nov-12 11:13:23

youngminds.org were very helpful with my anxious school refusing dd. Def. agree - do not push, cajole, trick - home ed if necessary until she's better. Dd fully cured by changing to primary wi th Head who understood psychology and based whole approach on dd always having an escape route

Oncebubbly Tue 06-Nov-12 13:56:40

Hi I have just found this site and found it most helpful reading your experiences. My 12yr old suffered pain and dizziness amongst other things and has not been full time in school for over a year subsequently not going at all now since the start of s2. Diagnose anxiety but I feel this stems from various illness and peer pressures since having swine flu and appendicitus. Anyway I have togowith anxiety. Very little help getting work from school. Very little support altogether. Do those of you who have tutors have this organised thro school or have you sought tutor privately. I am at the end of my tether because for the last twelve months during term times I have spent nearly every day putting pressure on and trying to convince d to go to school. I am exhausted and she is very low. Not sure where to turn now. Child welfare officer involved, ed phyc. Youth worker physiologist to help pain management also. My main concern is getting her some education and helping her cope. What do u think is the best way forward. R u in England or Scotland?

cestlavielife Tue 06-Nov-12 14:46:22

I am in england and when i rang LEA they put me onto the "reintegration officer" who is in charge of all young people not attendng school for whatever reason and needing some form of tuition.

ask if there is such a person where you are? is a separate post to th EWO. we have now visited the tutor group and hoepfully wil start next week see how many hors she manages - dd still dizzy nausea, had mri today and seeing ENT consultant next week for results .

still awaiting individual psych appts to assess how much is anxiety -dd says no it is physical ... tho she lacks motivation to do school work i am hoping tutor group will get that back..

there is a good link from another thread which gives best practice -
Access to education for children and young people with medical needs
https://www.education.gov.uk/publications/eOrderingDownload/DFES-0732-2001.pdf

JuliaScurr Tue 06-Nov-12 15:49:57

your LEA should offer home tutor
I say 'should' - good luck
keep up using correct stage/level materials from library until you can find a good school
recovery is the priority - academic stuff can catch up

HappyStreet Wed 07-Nov-12 19:21:44

I have come to the conclusion that the LEA and CAMH's that we have are offering an excellent service compared to what some of you out there are getting. Initially it seemed to take forever to get any help for my dd but once the doctor and school had referred us to CAMH's this seemed to automatically kick start home tutoring and I haven't really had to chase anything up! They have both been brilliant and this has taken the pressure off us as a family. CAMH's have even been on home visits and given my daughter CBT at home which has been invaluable to her slow recovery. I feel really sorry for anyone out there who is struggling to get this help - it must be so hard for you.

roundabout1 Thu 22-Nov-12 22:26:05

cest - I remember you from the child health posts. My dd has been suffering post viral fatigue type illness since Jan & I have dizziness & vestibular neuronitis. I hope you dont mind me giving my experience. The nausea, dizziness, looking poorly I relate to & it really does knock your confidence. I know on line dizzy friends who have had great trouble getting a proper dizzy diagnosis as the symptoms are so vague & similar to those caused by anxiety. Not all dizziness is even diagnosed after balance tests either, there seems to be a lack of understanding medically. The ENT's I saw were useless. I get very anxious about going into situations where I can't easily get out of. I don't work & to be honest I don't think I would be able to, not just because of the problems the dizziness causes but because of the panic that sets in when I feel really bad & I'm not somewhere I feel safe - usually home. I really feel for your dd & your family. I became dizzy 5 years ago & this has had a huge effect on our family life despite it not being a really serious condition as such. I hope you don't mind me interrupting your thread.

cestlavielife Sun 25-Nov-12 23:56:35

Hi round I appreciate you sharing your experience.

There has been some development in that dd had an MRI which showed a structural anomaly. While this has been there all along, my research show it can be linked with developing issues like epilepsy (hence why not dizziness and nausea) "in the second decade of life".

So we now waiting on neurologist referral.

Tutor group is going well tho she often feels sick. and dizzy.
School seem to be ok with idea of her going in even to attend just one lesson. But we need to be sure that they accept symptoms are real.

Have you found any thing eg meds that help ?

roundabout1 Mon 26-Nov-12 13:24:49

cest - how does your dd cope with tv & lights? Probably not relevant but I struggle with lots of people in the room, lights, movement etc. It's as if the brain is overloaded with all this info & uses it all to help balance & judge distances etc. Wondering if there is a sort of sensory overload for her on top of her symptoms & anxiety too. For me Christmas is really hard because of decorations up etc, at home even strings of Christmas cards hung up takes me days to tolerate without it making me feel bad. For that reason going into my dd's primary school is really hard with all the displays around. Just a thought.

cestlavielife Mon 26-Nov-12 16:01:26

dunno really - but good point to look out for.
this morning it was no partiuclar reason - she woke up felt awful, dizzy, nausea couldnt get dresssed and out to her tutor group.

Oncebubbly Sun 02-Dec-12 21:44:45

Hi again. Thanks for advice. I have a meeting soon with LEA. I can relate to each one of you and only wish I could meet you all. This situation is a nightmare for us as a family. dd not been at school at all this year. Hardly any work but she seems to be feeling better. Only worry is now that she will become ill again on returning to school. Trying for a couple of hours tomorrow. Let me know if any of you find a miracle cure!

roundabout1 Mon 03-Dec-12 19:32:38

oncebubbly - good luck for your dd tomorrow & with the meeting. I hope they find a way to makes things easier for your dd.
I am feeling at the end of my tether with school etc & our problem is just the amount of time off, my dd is there 61% (averaged over last school yr & this one) I really feel for you all with bigger problems than me, ours feels bad enough.

HappyStreet Tue 04-Dec-12 19:43:42

My dd is still making slow progress but at least there is some progress. She hasn't been to school since May 2012. CAMH's and the home tutor have decided that going straight into the school environment from home tutoring would be too much for her so they have decided to work in the local libruary which moves her away from her "safe" environment and when she feels ready they will slowly intergrate back to the learning centre in school for short periods. Her confidence is definately returning but I am still aware that if she is pushed she can easily be knocked back down so I have to be very careful how I phrase things. She gets tired so easily and is very hormonal and mixed with anxiety and panic attacks the result can be so draining for all of us. She is definately stronger though so there is light at the end of the tunnel. I feel thoroughly drained from this whole experience and really feel for anyone out there who is struggling to get any kind of help.

cestlavielife Wed 05-Dec-12 11:34:04

yes it is tiring happy...hope school are supportive?
we see a private neuro saturday on my insurance...dd with lots of headaches.
school apparently dont understand how she can attend a small tutor group but not school? surely it isnt hard..if you feeling sick and dizzy you might be able to get to a small class with v supportive teacher; as opposed to running round school up three flights of stairs with 20 class mates ?

exp just had a go at me as i am apparently causing all the problems and "doing it all wrong" and i should never have taken her to the small group; if she can go there she can go to school; bla bla bla .... and they might expel her from the school !!! (for being ill????) and it will of course be all my fault.

welll...worst that can happen is they do that...there are other schools....

roundabout1 Wed 05-Dec-12 12:49:36

happy - glad your dd continues to make progress & her confidence is slowly returning.

cest - that is a terrible attitude for them to take. Good luck with it though.My dd's school is a small primary school & I feel really let down by their attitude. There are about 10 members of staff (some part time) so not many & you would think it would be easy communication wise but no & the heads attitude in my opinion stinks. Like you say if worst comes to the worst there are other schools but it shouldn't come to that over illness surely. The most obvious things to me school dont understand - how a 10 minute run round in the playground can be ok but 45 mins of a PE lesson with a teacher dd is scared of isn't, how dd can be well enough to do a tiny bit of work at home but not attend school for a full day & how dd can cope in her classroom using one computer but gets headaches & feels sick after ICT with 20 pc screens in one room which they shut the blinds & turn the lights off. It is screamingly obvious to me those differences & those of your dd & for them not to understand shows such a lack of compassion & understanding. I have spoke to the paediatricians secretary regarding schools attitude in particular the head not recognising the paeds diagnosis as an actual diagnosis as it is too vague. She was really annoyed & has brought forward dd's appointment to next week so will see what happens then. Sorry for hijacking the threda but needed a theraputic moan.

cestlavielife Wed 05-Dec-12 13:58:20

helps to know not just us ....but grrr

HappyStreet Sat 22-Dec-12 12:01:31

Had a horrendous couple of weeks. Thanks goodness it's the Christmas hols. Happy Christmas everyone. Hope you all have a good break.

roundabout1 Sun 06-Jan-13 21:27:28

How is everyone? We have had a rubbish Christmas but none of it due to dd & now everything is back to normal, & am dreading school. Dd doesn't seem that bothered - yet but I am dreading the meetings, the battling & feeling that no one is on our side.

HappyStreet Mon 07-Jan-13 19:27:58

We have had a rubbish Christmas as well! Everything was going so well and then my dd starting having difficulties with her home tutor and she wasn't able to have CBT for 4 weeks with CAMH's. She has spent Christmas and New Year depressed, crying inconsolably and to add to everything her friends have started backing off. So yes I am feeling depressed today as well. I have to arrange school meetings, sort out the home tutor, who my dd is not getting along with at the moment and have found out that the therapist from CAMH's (who my dd loves) is leaving. Great start! The home tutor also told me very kindly before Christmas that she doesn't think my dd will ever go back to school. I am numb from everything that has happended over the past month as I really believed she would be back in school for short periods this term. School is so slow in replying to anything, although her form teacher did come and see us just before Christmas but apart from that we never hear anything from them. Grrrrr trying to stay calm but it's SO frustrating. Sorry I seem to ramble more than everyone else. Hope I'm not boring you all.

Mynewmoniker Mon 07-Jan-13 20:16:38

I work in a school and I'm learning a lot from this thread. I have been trying to do the best for what are called 'school refusers' and am suprised how little support and information there is from our LEA. I was suprised by the term 'school refuser' as it seemed to me the kids aren't refusing school itself but are depressed and anxious. As a professional wanting advice from CAMHS it takes ages to get any response. I am trying to work hand in hand to do the best for the student and am aware that the teachers are under stress to get students to produce work and keep up with the curriculum. I realise I was as unskilled as parents but am eager to learn best practice. Thank you all.

Sorry if this is a littled muddled but I'm in a bit of a rush as I type this.

roundabout1 Tue 08-Jan-13 14:51:42

happystreet - I'm sorry things are going so badly your end. It all sounds very frustrating & makes our problems seems minute in comparison. Did the tutor explain why they didn't think your dd would ever get back into school? To have that hope dashed must be hard ((hugs)) to you.
Well today has gone ok so far, well overall. Dd was in floods of tears, making herself retch this morning with anxiety regarding going back to school. The retching is a new one, before it was just feeling sick but just before schools broke up she did it & I didnt send her in despite being ok half an hour before as I was feeling rough anyway & thought it could be a bug, but she was fine an hour after. Since then whenever very anxious/upset she does it & its increased the anxiety as now worries about being sick at school whereas before was generally worried about feeling ill at school. We are waiting for a chronic fatigue referral to be made by our gp, still waiting since early December & have been warned it may take a good while to get an appointment through anyway, so very frustrating that they haven't even done the initial referral yet. Have spoke to school who since having an albeit possible cfs diagnosis do seem to be being more helpful & sympathetic. So cautiously optimistic here, dd will just do 2 hours in a morning every day that she can get in so at least it takes the pressure off dd a bit.

HappyStreet Wed 09-Jan-13 16:54:12

That sounds so much like my dd's symptoms. When she was first diagonosed with anxiety in Year 6 at Primary School she used to wretch every morning. I had to get her into school holding a plastic bowl each morning and then it would suddenly go away. She was so afraid of being sick in front of people. CAMH's have now found that her core fears are being sick in public, people's perceptions of her and high expectations of herself. If she feels unwell at all I still cannot get her to go anywhere but I have seen an overall improvement in her confidence through CBT and she still has a positive outlook about getting back to school. Her main problem seems to be the feeling of embarrassment about having anxiety and facing up to people she knows. Once she has conquered this I think she will be well on the road to recovery. But that's easier said than done.

Oncebubbly Mon 28-Jan-13 22:55:20

Hi all. I have discovered thro lots of research on line that my dd has been suffering from abdominal migraine for over 4years. She has become anxious because of this. Her attacks can come every week and include so many different symptoms including nausea and dizziness. Phsyc even said dizziness was a panic attack but I have never believed this. Please be aware of this when you think your dd is just refusing school. We sometimes thought she just didn't want to go but it has gone on so long and since I was told she was anxious I have been pushing her to go to school. We have had fights, the whole family falling out. Life has been so bad for year and half. She has lost her hobbies, first two years of high school and her friends. She has been depressed and angry and I feel so bad that we didn't diagnose correctly. With children with nausea tummy pains dizziness unlike of light and noise sore ears tiredness and other stuff please google abdominal migraine and check this out. I wouldn't wish what we have been through on anyone. She is now taking pizotifen daily and her pains have stopped it is wonderful. I now need to help her rebuild her life. X

HappyStreet Sun 03-Feb-13 19:06:34

Hi again. Just wanted to let you know that my dd has turned a corner since Christmas, has regained her confidence and is a different girl. She has made a 12 week plan to get back into school and can now go out socially with the family without any problems. We still have some way to go and she has some massive steps still to take but the future looks bright. Thanks to CAMHS and their patience, the dark, depressive cloud has gone and she is looking to the future positively.

cestlavielife Mon 04-Feb-13 12:16:59

once: tks for that ; i am not sure it applies as dd is never "well" in between more severe episodes... we going down neuologist route as she has visual field loss which could be linked with her abnormal mri and maybe raised/poorly flowing CSF who know...neurologist appt is in march.

mean time she is going to try going to a single art class at school see how it goes. the small group lessons are going well tho she sometimes feels unwell headache nausea dizzy there and has to leave. now they have four in the group (up to ten hours per week over three days)

happystreet - that is good news hope the recovery continues smile

HappyStreet Sun 17-Feb-13 08:57:52

Just so that anyone suffering with anxiety can see there is light at the end of a very dark tunnel. My dd managed to get into school last week and have a meeting with her Head of Year after 9 long months, which was nerve wracking for me let alone my dd. I'm not boasting but after a very long, dark road there is hope. She has found the courage to change her home tutoring sessions from the local library to the school library after half term. Very small steps, loads of patience and praise are key to success with my dd's anxiety.

roundabout1 Tue 19-Feb-13 16:50:46

once - my dd had episodes of what we thought was abdominal migraine from reception onwards, didn't happen often enough or see a pattern to have a definite diagnosis. As a family nearly every member suffers from some sort of migraine, a lot of dd's recent symptoms could be contributed to migraine (although not all) although dr's seem to be leaning towards a CFS diagnosis now. I wonder if there is an element of both though as supermarket lights & so many things that bother me & my headaches seem to bother her too.

roundabout1 Tue 19-Feb-13 16:53:28

once - forgot to say am so pleased that things are going well now she is on meds

happy - thats great news that your dd has turned a corner, it must be a huge relief to have your old dd back.

HappyStreet Sun 16-Jun-13 19:41:32

I haven't posted anything recently as my dd's anxiety has got worse again and she is now suffering with depression. She is struggling to get into school again and we are having to change home tutor to someone who is more positive and enthusiastic. I feel I've two different daughters at the moment one who appears happy and loving when not faced with anything to do with school and socialising and another who cannot face life outside her bedroom and looks totally depressed when having to cope with her school phobia and anxiety. Nightmare which never seems to be ending!

loveliesbleeding1 Thu 18-Jul-13 09:59:29

Hi happy street going through a similar thing with my dd at the moment, and have been since november,we are waiting for another cahms referal as the first one was turned down due to it being"a non mental health issue" unbelievable! Just really to ket you know you are not alone in this, its an endless grind, and I also feel my daughter is 2 completely different people I wish you and your dd all the very best. (Wish I had an answer to all this)x

HappyStreet Thu 18-Jul-13 20:29:30

Thanks. Always good to know you're not alone as not everyone understands this very difficult situation. My dd has gone from a girl who was positive she would get back to school with some help, to a girl who is depressed, alone and doesn't know where to turn. We have talked and talked and talked, argued, argued and argued, cried, cried and cried and feel we have come a vicious circle in 15 months. We have now decided to send my dd to a very small learning unit for teenagers with anxiety where she will hopefully gain back her confidence, get some education, make friends with people who understand what she is going through and at some point she will get back on track with her life. I had never heard of anxiety and school refusal before and I would probably have had the same attitude as many others that these are just teenagers being awkward and rebellious, but that is far from the truth and this can certainly be a complicated mental health problem that needs specialist help and support for all the family from schools and CAMHS.

loveliesbleeding1 Thu 18-Jul-13 21:22:47

I really hope they can provide your daughter with what she needs, I have also been through the teachers saying drag her in, that just doesnt work , does it? The one time I did literally force her to go, she was so hysterical they told me to bring her back home (thanks school) we have no smaller schools near us, only ones that deal with behavioural problems which dd doesnt have, she also loves learning and teacher describes her as very intelligent, so I feel your frustration!!! I hope you both have an easier autumn term

HappyStreet Sat 20-Jul-13 09:31:39

I really feel for you and your dd Lovelies. Anxiety is such a complicated thing to deal with and you wonder if you're doing the right thing even with help from the professionals. Sometimes I wonder if the pressure from all these people adds to the problem and yet you need the help to get you through it! It does seem that help for children with anxiety is a bit of a lottery to the area where you live. We were lucky enough to get help and support from our doctor, CAMHS, home tutoring and school but without this sounding ungrateful it's not always been the right person giving that support which can have a negative effect on the child and subsequently sending the child into a deeper state of anxiety. This seems to have happened in our case. My dd responds to someone gentle and understanding rather than someone "pushy" and yet she needs someone confident to get her to overcome her fears. Very confusing! All I can say is take it in "very" small steps and don't force her to do anything it will only make her worse. Try taking her to school reception and sitting there for a while and then go home, then when she gets used to doing that see what she feels comfortable with. Hope you get things sorted. If you need to talk at any time I will keep an eye on this thread.

loveliesbleeding1 Mon 22-Jul-13 19:33:16

Thank you very much happy, I understand what you mean, dd has a real anxiety about letting people down, so if somebody from school even looks disappointed in her she has an instant fear of them, I am just going to try another couple of terms and then may home educate although she would have no reason to go out at all then, so it's really hard to know what to do.just hope cahms will take her on this time, unfortunately she cannot stand the school counsellor but thats the only time she will go into school now,so about 2 hrs last week in school, sooo glad its the hols coming up.I will have my dd back then iyswim, will also keep checking in, if you need a shoulder!

HappyStreet Thu 25-Jul-13 18:46:38

Thank goodness the holidays are her! We get our anxious children back for a few weeks. After 15 months of an emotional roller coaster we finally have some hope for our dd. She has been given a place at a small unit set up by our council for teenagers with anxiety. It's an ideal environment for her to learn 5 core subjects, have group therapy sessions and go out and about to gain confidence. It all seems too good to be true after all we've been through. The only down side is that socially it's very limiting and my dd is finding it very difficult to keep in touch with her school friends. However, we feel a huge weight lifted from our shoulders as without this I really don't know what my dd prospects would have been. The more effort we were putting in over the past couple of months the more my dd was pushing back and resenting school and her therapy sessions. She was drifting into a deeper depression and it was all very worrying. She has already paid a visit and I'm not saying we aren't going to have some wobbles before she gets some confidence back but she seemed happy at the idea of starting there in September. Although I'm still nervous that the same thing could happen here and she refuses to go, but I'm hoping that she realises this is a good chance to restart her life in a small, friendly environment with people who understand and care. We have been so lucky and I really feel for anyone out there who isn't able to get the same care we have. Happy holidays.

loveliesbleeding1 Wed 31-Jul-13 14:11:45

That is so good to hear, so pleased your dd is feeling more positive about the idea of going back to her education, we now have a cahms appt, after pleading for help.The woman sounded shocked that I was so delighted that dd had been accepted, but I feel that somebody is actually listening now, I don't know how it will go of course but at least things are pushing forward now.Happy holidays to you too.

loveliesbleeding1 Thu 01-Aug-13 19:19:37

*camhs

HappyStreet Sat 03-Aug-13 09:34:01

That's really good news lovelies, you will both need all the help and support you can get. I hope you and your dd have a relaxing holiday.

loveliesbleeding1 Tue 13-Aug-13 19:45:14

Hi happystreet, quick update! Had our camhs appt today and they have agreed to help us, we could be entitled to 5 hours home tuition a week, which sounds zilch, but is better than nothing.Also dd will be starting some cbt so things are looking up at last.hope your dd is enjoying her hols, and still looking forward to her new school.

HappyStreet Sat 24-Aug-13 14:04:28

Hi Lovelies. That's great news. I hope your dd starts to feel less anxious now the pressure's off and the CBT will hopefully help her understand her anxiety and overcome it slowly. I'm interested to see how you get on so please keep in touch. It's been great the last six weeks not having to think about anxiety. Now the holiday is coming to an end I can feel the pressure returning. My dd is becoming anxious of her new start in September and the prospect of her anxiety and all that comes with it returning. I'm SO worried about her education. This is such a good opportunity for her but if she doesn't feel able to even get there again she is going down a very slippery slope and she won't get any qualifications which is unbelievable when she's so bright and such a lovely girl. Anyway keeping everything crossed again that all goes well and we can start a new, positive chapter.

loveliesbleeding1 Mon 26-Aug-13 14:31:18

Hi happy thanks for the reply, dd also getting nervous, I cant even say the word school aloud at the moment, or she gives me a very loud sshhhhh.of course I will keep in touch,sending my very best to you both.please let me know how she gets on.

HappyStreet Thu 29-Aug-13 18:17:51

Sorry but I'm in need of a rant. After 4 "anxiety" free weeks I can feel the tension building again. My dd has been in one of those frustrating moods again where she wont speak, come out of her room and looks depressed.
Not sure what to say or do. Carrying on as if everything is normal but can feel my stress levels rising already!

loveliesbleeding1 Fri 30-Aug-13 11:50:02

Yep exactly the same this end.dd is currently downstairs with her resilience worker(who she has actually bonded with), who has just informed me that as dd will now be seeing camhs, she (rw)wont be coming back to see dd.my stomach is now in knots for the first time in ages, and dd is no longer speaking.what can we do?im so sorry this is going on.do you have any idea if dd is going to try her new school, are you able to go with her for the first day? Oh and feel free to rant anytime, I just did didnt I? Sorry prob the last thing you want to hear me going on!!

HappyStreet Fri 30-Aug-13 13:43:22

It's great to have someone to rant with and I know exactly what you're going through. My dd got on so well with her original psychotherapist from CAMH'S but she left. She doesn't "bond" at all well with her present one, she wont open up at the sessions and comes out in tears. It's a nightmare and only seems to be making the situation worse. I don't want to put you off though as you definitely need their help and support and I'm sure your dd will be OK. My dd said she needs time to get settled in as she's very nervous and is worried that people are expecting her just to go and manage full days straight away. So no I don't think initially she is going to get there (nightmare). She can't understand why I get so tense and "shouty" as she puts it after 18 months!!! And yet if I try and reason with her she goes into a deep depression. I just don't know how I'm supposed to react. Whatever I say to try and help she twists to suit her, which is infuriating. I'm trying to back off and think it doesn't matter but it's always a weight on your shoulders. Sorry it seems so negative. I live in hope that at some point in the next couple of months there is some light at the end of a very stressful tunnel.

loveliesbleeding1 Fri 30-Aug-13 22:13:07

Is there any way your dd could start off going in for any length of time?even if 5 minutes?I have made a deal with myself that I am not going to freak out about it any more, but thats easy to say with 6 days of hols left.it just seems to be a life of appointments, schools, counsellers, teachers and none of them communicate with each other!!school counseller is hopeless and puts the pressure on when I have told her that makes dd worse, she gave her loads to do over the hols, my dd wont even go out, and she wants her to go to the local shop, and talk to someone new every day, yep thats going to happen.dont worry you wont put me off, you never know we both may be much happier in a few weeks, fingers crossed.here whenever you need a good shout.

Can I join in here? We have a very similar situation with my 12yo DD who hasn't been in school much since mid-Nov 2012. We were referred to CAMHS in Jan and eventually started seeing a psychologist at the end of June. The stress with school has been awful, and I am dreading next week. It's been so nice not having to worry about it over the summer holidays. Dd started on fluoxetine 2 weeks ago so hoping things will start to change soon.

loveliesbleeding1 Sat 31-Aug-13 12:18:36

Hi blessthismess, so sorry you are going through this, have you got a plan in place for next week?as you can see, you are not alone.

Not much of a plan, except take her in ( she goes to the Student Support Centre in the school) and see what we can get her to agree to do. Sometimes she will walk up to SSC and come right back, sometimes she will stay 5 or 10 or 30 mins, sometimes we can't get her to leave Reception. Wondering what difference the medication will make.

loveliesbleeding1 Sat 31-Aug-13 23:37:30

Sounds like my dd, the amount of times I have sat in reception with her I couldnt count, I have no idea about medication as we arent that far along,I really hope they help your dd.Its so hard, isnt it? Hope you dont mind me asking bless but has seeing a psychologist helped at all? Just asking as we are waiting to see one at the moment through camhs.

HappyStreet Sun 01-Sep-13 10:24:09

I know what you mean Lovelies about going here, there and everywhere. It's exhausting fitting everything around your normal life. We're very lucky now everything is based within her new school environment. I've had a calm conversation with my dd and like you say Lovelies she will take it in small steps at first until the anxiety has calmed down and then increase her time as she feels more confident and I'm going to have to accept this (which is easy when things are going well!). It makes me wonder if the number of people involved in the beginning stages of anxiety and all the talking and pushing makes the poor child worse. When I listen to my dd talk she makes more sense sometimes than the therapist! We have gone through so many plans of steps. Initially if she had "bonded" with her home tutor I think she may have got back into school as she was so positive and wanted to be there. In our experience the relationship between child, home tutor and therapist is vital for a positive result. We haven't gone down the medication route. I think my dd needs to work out how to control her anxiety for her to get on with her life just in case it comes back somewhere down the line. For some reason I don't like the idea of her taking pills at such an early age. Anxiety is so complicated but it's good to have someone to talk to. Good luck to you both. At least you know you're not alone.X

loveliesbleeding1 Sun 01-Sep-13 12:07:17

Ah what a good girl, you must be so pleased that she has talked to you, thats half the problem isnt it, when they just "shut down".I do worry terribly about my dd's future, and as you say I just want her to learn how to control the anxiety which in her mind had destroyed her life.i feel at fault sometimes as I used to pressure her so much as I didnt realize how awful it was for her in those first stages, I honestly thought she was being a difficuilt pre-teen, its not so much a learning curve as a learning mountain!!always here too, take care x

The psychologist has been really good, lovelies. She has established a really good relationship with my DD and although DD hasn't spoken to the psych, she feels comfortable with her and likes her which is a massive win! She has set goals for the therapy and the next step is to break down the goals into manageable small steps. I wouldn't have wanted to use medication ideally but DD cannot talk to anybody outside our immediate family me, her dad and her sister) plus a couple of friends her age. She even has stopped talking to my Dad who she used to be completely comfortable with. She has suffered with this since the age of 4 and we have exhausted every other path.

HappyStreet Tue 03-Sep-13 09:13:37

I really feel for you Bless. Things must be really difficult for you all to have had to deal with this for so long. My dd started with it when she was 10 and that was bad enough! I know medication works for some and I can totally understand why you have gone down that route after so long. I will be interested to see if it helps your dd so keep in touch. My dd stopped talking and seeing her grandparents and some of her immediate family last year but she seems to have overcome her fear of seeing them now which is a great relief. It was such a strain on family life and caused SO much upset. We have therapy today and I know my dd is dreading it. I just hope she comes away feeling positive which will set her up well for when she starts her new school next week. Crossing everything again. Bye for now.

Oncebubbly Tue 03-Sep-13 10:07:39

Hello again. I wrote on this thread some time ago and was surprised today to see it ongoing. I have still got the exact same problems as all of you with my dd now 14 years. Has struggled with getting into class since oct 2011. Not really had much education in all that time. We have applied to small school for kids who cannot get into school for whatever reason but school is so small not sure if she will get in as there is a waiting list! We have helped build up her confidence again and she has been successful with some out of school voluntary work but friends are now few. Wilts reading your messages I thought it would be good if the 4 girls could communicate with each other. Not sure of your dd ages or if they would be up for this but I thing they could benefit from it if they gave it a try although it may be slow to take off. Anyone have any thoughts on this. My do has no one to talk to about her anxiety except me. She has also been depressed for obvious reasons but the help we have sought has not really been any good. I'm not sure where I go from here.

The return to school has gone better than I expected. She delayed like mad on Weds morning but wasn't in tears or refusing to get up. DH took her up to school at about 11am and then followed about 20 mins negotiation in reception about what she would or wouldn't do, with DD mostly in 'freeze' mode. At the beginning of break a friend came and met her and in the end she agreed to go up to Student Support to spend break time with her friends, and then see whether she felt comfortable staying to do any work. She stayed about an hour :-)

Today she went in without any fuss (though late again) and stayed an hour, and said it was ok.

Tomorrow morning we have a meeting with psychologist, SENCO, and speech therapist to make plans.

Once bubbly, I will ask my DD what she thinks about being in touch with others who feel the same way. She is 12.

HappyStreet Thu 05-Sep-13 20:56:50

Well done your DD Bless! Hope she continues with these steps as it's something she can build on and gain confidence from. Just don't be disappointed if she has a "blip". I really hope this is a turning point for you. My DD starts next Tuesday and I must say she is really positive and the happiest I've seen her in ages at the moment.

Once Bubbly, my dd is 15 and has lost most of her friends through anxiety. At the moment though she is gearing herself up to going to her new school so when she has settled in I will ask what she thinks about communicating with your dd.

loveliesbleeding1 Fri 06-Sep-13 09:49:55

oncebubbly, thats a great idea for them to talk, I am just trying to get dd to talk to other children at the moment and she really struggles, she has just turned 12, so once she is a bit more settled I will see how she feels about contact, thank you for suggesting.my dd managed to go In with her resilience worker yest and pick up a timetable, and then home.i am really proud of her as she was very very anxious about doing it.
blessthismess thats wonderful, you must be so pleased, hope everything goes to plan!
happystreetso glad your dd is feeling positive now, and lovely to hear shes feeling happy again, hope all goes well next week.

drummersma Fri 06-Sep-13 11:35:37

We've just run into this, literally this week. DD1 had a never-before, out-of-the-blue panic attack sitting her first GCSE in summer. She took all subsequent exams in a separate room and achieved outstanding results, in spite of her anxieties. She has become increasingly withdrawn since June and has been referred to CAMHS. The school (highly-rated local academy) has her on their gifted register. This week, when she should have started sixth form, she had a massive panic attack and couldn't leave her room. We haven't made it beyond the school entrance since. Did she get any support from school or the SENCo? Instead, I got a call from the principal basically informing us that if she isn't back in school by next Friday then she will be taken off the register and kicked out "in her best interests". Just felt so betrayed. DD1 WANTS to carry on working at home until she can get back into school but the principal is blanking all our efforts to get syllabus info from the teachers.
It's a nightmare - and because she is post-16 there doesn't seem to be anything we can do about it.

loveliesbleeding1 Fri 06-Sep-13 13:29:40

drummersma could you possibly ask your gp to sign your dd off school for a while? This seems very unfair for the principal to be acting like this, your daughter is ill at the moment.maybe a note would give credence to just how your dd is suffering, I wouldnt wish anxiety or panic attacks on anybody, they are just awful.

HappyStreet Sat 14-Sep-13 14:24:59

How things can change in a week. My dd started off so well (perhaps too well). She managed to attend a meeting on Monday at her new small school for years 10 and 11 teenagers with anxiety and said she would spend the next morning there. She managed all day! She said she enjoyed it and has made a friend. However since Tuesday she has become a different girl. She hasn't been out since and has completely shut down. She won't open up to me, has lost all the confidence she gained over the summer. I can't believe where my lovely daughter and friend has gone again. I don't know how to communicate with her and feel as though we have gone right back to how she was 18 months ago! How on earth do we turn their brains around. She has no chance in life if she carries on like this. I'm so worried. I know it's early days but this has gone on so long now I thought things would have turned a corner by now. Feeling so sad again. She was so happy during the holidays and now she's in her bedroom and won't talk.

Oncebubbly Tue 17-Sep-13 22:29:34

Happy street maybe going for a whole day was too much. This has happened to my dd before. Have you checked with school to see if anything happened on Tuesday. We have had so many ups and downs and dd not been at school much for nearly two years. She is now year 10 and she desperately wants to get back but is finding it so hard. Maybe giving your dd a little time and make sure she knows you are there when she is ready to talk. My dd always felt she had let me and her teachers and herself down if she failed to achieve the goal she had set herself. Her goal was too high. I feel much the same as you sound very sad. Where do we go from here and how do I help her. What will she do after school. We just need to keep strong. What I have discovered is that you need to shout and pester to get help. I try and make sure she has things to do outwith school. She has recently started horse riding and helping at stables. We go shopping regularly and treat ourselves. When she gets angry with her situation (brought on by anxiety) i start a play fight with her and we now regularly do this and we end up laughing. Another thing is our dog has been a godsend for her over the past two years. At one time she was her only friend. She has just been to see me with a twitter comment she has seen. A physcologist asked a class how heavy a glass of water was. They all guessed different weights and she said to the class that it didn't matter what it weighed. The fact was if you held the glass for a few seconds it wouldn't affect you. If you held it for half an hour it would begin to feel heavy and if you held it for a day your arm would begin to feel numb and you would start to feel horrible. She said you need to put it down and this is how she explained anxiety. You need to put your problems down sometime and rest. I am only now beginning to understand the feelings of anxiety. Dd does not like busy places I.e classroom or shops. This is because her brain is constantly scanning for danger and she cannot cope with this where there are a lot of people. CBT deals with this sort of thing. I have been trying to get dd CBT for the past year since we got her abdominal migraines under control. I Am still pushing. I do hope things improve for you. Keep us informed.

Oncebubbly Wed 18-Sep-13 07:48:20

Just realised I rambled on a bit too much last night. Apologies. I just want to speak to you all because our problems are all so similar!!

loveliesbleeding1 Fri 20-Sep-13 09:17:18

Im sorry happy,I know you were pinning your hopes on dds new school, I hope this is just a blip,my dd is thesame at the mo, we havent been into school at all this term, she has started to wear all black clothes now and Is really down.i wish to god I had an answer to all this,oncebubbly that is such a good analogy, and I completely understand the dog relationship, as my dd is exactly the same with our old girl, she calls her her best friend, its unbelievable how similar our girls all are.

HappyStreet Mon 23-Sep-13 19:11:43

Thanks for listening to me rambling. I'm sorry you are going through this too but it's good to have someone to ramble to. My dd had a personality transplant last Sunday and she managed to get into her new school every morning last week. She was on such a high over the weekend. It's been brilliant! However, this morning she felt sick (the anxiety makes her stomach churn and as a result makes her feel sick) and I know from experience once she feels sick there's no chance of her going out of the house (she has a fear of people seeing her being sick). So, she's spent today depressed, anxious and alone. If only she could keep up the small steps it would give me some hope. The ups and downs with anxiety are incredible. How are things with everyone else? So sorry Lovelies. Has your daughter had any CBT yet? Has she got a home tutor?

Floralnomad Mon 23-Sep-13 19:36:14

Hi can I join in here as I have similar issues . My daughter is 14 and has just gone into yr10 , she has CFS and has been out of full time education since the start of yr8 . She is currently under the health needs for education service and has a home tutor . Although her CFS is still present most of our main issues now are anxiety about change including school attendance . This term we agreed she would go into the health needs school 2 afternoons (1.5hrs) a week ,we have done this so far but on each occasion have had panic attacks /stress , we have been asked to go for a review in October and I know they will push for more attendance at school and less of the tutor . I'm not prepared to shift from the current arrangement at the moment but did say to my husband tonight that I can see a time when I will have to de register and HE for the sake of all our sanity . We already plan to de register at the end of yr 11 and do A levels at home , I had hoped that she could have stayed in the system prior to that . My DD has minimal contact with old friends and may well be interested in getting in touch with others in a similar position , she too is overly attached to the dog ! Sorry for the length of this post .

Notquitegrownup Mon 23-Sep-13 20:05:45

Wow. Just came across this thread and wanted to send support to all of you lovely ladies, and your children. My Godson was diagnosed with CFS aged 13 after a nasty dose of flu having been a madly sporty, fun loving, academic lad. He went through 5 years of what you are describing here - the school refusing, dizziness, anxiety . . .

His (private) school were fortunately supportive and allowed him to negotiate a timetable around how he was feeling. They encouraged him to go in but didn't force it. With some home tutoring he muddled through 5 GCSEs and 2 A levels - just enough to get to Uni, though it was always touch and go whether he would get into school enough to complete the courses. Just wanted to let you know that there is hope: the day he went to Uni his symptoms pretty much disappeared and he recently graduated with a high 2.1 and a lovely girlfriend too - they have just got engaged.

Thinking of you all as you go through this very tough route and hoping that his story can offer you a bit of hope.

(Oh, just one more thing to add. He loved playing the guitar, and that was a real rock during the darker times. It was something he could practice, in his room, alone, and did so for hours on end.)

HappyStreet Tue 24-Sep-13 09:10:31

Oh thanks for such a positive message. It's great to hear a success story. It gives us hope for the future. At the moment I feel as though we're stuck in a hole and can't get out! It's such a vicious circle.

loveliesbleeding1 Thu 26-Sep-13 20:56:03

Hi happy dd starts cbt on monday, so im crossing fingers!! We have had a camhs consultant referal for the home tutoring, so hopefully that should start soon too.your dd did so,so well to do all those mornings!a whole week, you must be so proud,has she gone back again the rest of this week?.
floralnomad school are always pushing us for more attendance too, last week we had a meeting with year head.she told us "management" want dd on a half day timetable within the next few weeks, I nearly laughed in her face! Just remember attendance is their job, you know what your own child is capable of, hang in there!.
notquitegrownupsuch a reassuring post, thank you so much.my dd has just asked for a guitar for xmas, she told me some of the rock stars she likes had anxiety when they were younger, so I think she feels like they have something in common.
Thinking of you all.

HappyStreet Sun 06-Oct-13 19:18:18

Hi everyone. How are you all? Hope things are a little brighter or you've got some positives out of the last couple of weeks. My dd has at last got some of her "old self" back. She is more positive about going to her school and managed a whole week of mornings again last week. She came out "buzzing" on Thursday (they only do 4 days a week). Hope the CBT went well with your dd Lovelies. It didn't take long for us to get a tutor once CAMH's got involved so hope this is the case for you. My dd is so much more happier now that she hasn't got someone on her back, trying to get her back into school. She's making more progress now she's being left to her own devices than she was when school were involved pushing her to do this, that and the other and doesn't feel like she's a "naughty girl" who isn't attending school. We still have problems don't get me wrong, but she is happy at the moment and that makes such a difference.

cestlavielife Tue 08-Oct-13 13:46:49

hi all, DD was eventually diagnosed by neuro with chronic migraine disorder. she taking migraine preventative proponalol and it is heloping a little.
headache clinic v much of opinion the symptoms part of a chirnic migraine ie nausea dizziiness headaches etc and is about managing them...that it can go on during teen eyars but hopefully will resolve somewhat. she gets benefit from the fore head menthol stick.

she started at the hospital school as outpatient and has been managing three to four days per week - usually i take her but she mananges bus home, ususally with another girl from the hospital school. so much better than a year ago!

her pvs school made it clear they could not handle child who pitched up as and when (in their words) so trying to get place at local community secondary (which v good and of course is "full"), application going in on socio-medical grounds. fingers crossed she can get a place and gradually transfer...

HappyStreet Sat 19-Oct-13 11:25:51

Hi all. How's everyone doing? Nice to hear from you again cestlavielife. Sounds like your dd's school was as sympathetic as all of ours but at least you have a diagnosis now and your daughter sounds to be getting some life back. Hope you're successful with your dd's new school. My dd managed to go on a team building trip this week which was amazing! Unfortunately she was ill the next 2 days and couldn't manage to go to school but she's doing much better and I'm trying not to get stressed when she has negative days. How are you doing Loveliesbleeding1? Has your dd had her CBT yet? Hope it went well and you now have your home tutor.

Oncebubbly Thu 07-Nov-13 22:24:24

Hi. Wondered how you were all getting on. We are a little better in that dd is happier. Still not in class though. Also we are in Scotland and we don't get tutor. Sounds like you all do. Tell me how often does your DC get CBT and tutor.

HappyStreet Sun 17-Nov-13 11:22:25

Hi All. Hope everyone's OK. We've had a really good term so far and my DD is enjoying her new school and its small, friendly environment. She's managing all morning now (4 days a week) and her next step is to try a whole day, which if she takes slowly and only one day a week at first, is a manageable goal. She's less anxious now on a morning but still suffers dreadfully with her nerves. It's not just a case of us leaving the house, we have to go through the ritual of breathing methods and going to the loo several times before we get into the car. She's making great progress though and at last we have some hope for the future. Glad things are happier for you Oncebubbly. We had a home tutor for 5 hours a week and CBT once a week at the beginning and then as she improved once a month . We live in Yorkshire and have been looked after really well by the health service and council. I consider us to be very lucky.

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