Parents and carers of anxious kids/teens(part5)

[Stilllivinginazoo]

Hi guys
Just spotted we have filled another thread!
I started part 1 during the journey with my sons escalating anxiety
This thread is a non judgemental place to support each other
As parents and carers we recognise how hard,stressful,and often lonely,this unseen battle can be.others dismissing small wins as the norm for most etc
Please feel free to offload here,share your small wins,take the support and comfort this thread brings

Zoo I'm sorry to hear the continence appointment wasn't as productive as you'd hoped. And also about DS's school situation. I'm glad the Easter break isn't far away now.

Zoo sorry the continence service appointment wasn’t helpful. I would really push for them to offer some support rather than just pass to CAMHS. DS’s amended EHCP for next year should have been finalised by today.

Runner good luck with the art therapy and OT. Once tribunal is over consider a LGO complaint. They can order payments for the costs and distress of e.g.them failing to provide education. We got a couple of thousand for a much shorter time period than you.

I'm glad the Easter break isn't far away now.

Me too, Muddling.

Sorry about dd hair runner.
And continence appointment zoo. How frustrating. School sounds awful. Out of the frying pan springs to mind.

Dd has had a good week but today she mentioned her dark thoughts have returned. She is a week off her period so I think we can be confident of pmt / pmdd. Doesnt really help for the next week while we have greater risk. I have an appointment on Friday with the school to discuss her short term needs. Not sure what to ask for tbh but I am paying a lot of money for her to be there only 1/3 of the time so it would be nice if they came up with some solutions.

I contacted our school of choice for next year AGAIN(4TH time).they emailed offering a video call tom to discuss any potential placement,which at least gives us hope!
Leap from what I can see plans just been amended moving goals from year 11 to end post 16(independence,socialising etc)and not named a place at this time

Zoo I hope the school offer a place. I got my days muddled when I posted last night, it was a long day and every day is running in to one the last week, the EHCP must be amended with next year’s placement by today. Have the LA issued a finalised plan? If so, you may need to appeal, so don’t let the right of appeal lapse. If they haven’t issued a final plan yet push them to as they as frustrating your right of appeal - after the call tomorrow when you know where you stand with the placement consider threatening judicial review.

Tiktok sorry DD found yesterday difficult after a good spell. Would DD try the pill to see if it helps?

Tiktok DD2 has been taking the pill for about a year and a half for different reasons to your DD (DD2 had bad period pain and fainting and hates the feelings of having a period rather than mood).

Initially started on the usual 3 weeks on, 1 week off regime but continued to be really faint during the break so our GP switched DD2 to 9 week continuous cycle followed by 7 day withdrawal bleed. It's been a godsend for DD - we can plan around week 10 and her bleeding and pain is no worse than on a shorter cycle. She doesn't seem to have any side effects either.

Apologies Tiktok - re-read my post which went somewhat off topic to your DD's situation. I think I was trying to say that if the pill proved helpful in avoiding hormone fluctuations, then current thinking is that a much longer cycle of 9 weeks is fine. Apparently the 3 weeks on/1 week off regime was introduced to mimic womens' normal cycles because it was thought (by men no doubt) that women would prefer to have a monthly bleed!

My DD17 was prescribed 10mg of fluoxetine 4 weeks ago, this week if was increased to 20mg. Since it was increased her mood has significantly dropped and she's back to self harming and talking about not wanting to be alive anymore.
Is this a side effect? Do we need to ride it out or do her meds need changing?
Any help appreciated

@cantthinkofabetterusername a side effect of SSRI medication, particularly in teens/young adults, can be an increase in suicidal thoughts. This will be detailed in the leaflet. I’m no expert but I would contact whoever prescribed the meds. It might be that a change of meds is required. My DD initially did well on fluoxetine for anxiety but didn’t tolerate an increase well at all, really increased anxiety.

cantthinkofabetterusername, Roxie’s advice to contact the prescriber is good. Sometimes a change is necessary and sometimes you can persevere though as things do often get worse before they improve.

Muddling must have been a man! DD’s EHCP for next year should have been finalised, too.

We had a camhs appointment this morning and the prescriber was there. She said it's a side effect of the medication and to give it a couple more weeks and if no improvement they'll look at changing it

@can't think each time Ssri's are increased, suicidal thoughts can reoccur temporarily.
I was speaking to a prescriber about this the other day. He says he adds Amitriptyline in for a short period or Quetipine to help get through this stage more quickly.
DS needs to change his, but we will wait until the summer holidays and I was questioning this guy how to do it safely.

@Cantonet do you know how long it lasts?

can't DD suffered dreadful depression after starting SSRI,which has returned at intervals even after she gave up.this doesn't make me anti med though.not everyone reacts the same and they are a useful tool for many.i hope you can get the balance right.x

Well video call was ok.they don't have capacity to offer a levels this year given 59%of intake to post 16 cone from the school and they're not at that level.theyve said from social and emotional viewpoint they're a good fit and have suggested it maybe wise to talk to D's about doing more GCSE (he will only have English and possibly his functional skill maths) whilst bolstering his self esteem/resilience on hope they can help him over two years reach a point accessing a small college to do a level English should he still wish to at that point.he will be leaving there full functioning at life skills etc,which he currently has minimal and I feel this is a good idea.theyve pointed out too his journey to GCSE is unusual given missed huge chunks of school and has achieved an 8its clearly his natural ability subject but this means he's not had to work hard and the step up of difficulty to a level might run him off course given he's not had to work hard before,whereas if he tackles lesser capable GCSE he will learn skills to tackle this
He's devastated no English for 2years,his one true love,and uncertain about other things but the school are now in two week Easter hols and have suggested we talk at length and if he's willing to give it a go we can talk again at the start of next term.theyve made it very clear if he's not fully on board it won't happen though.so I need to be clear with him what's expected and what's on the table
Overall im not too disappointed,I think it's a sensible option

Dd ended up calling the crisis team today, they told her to go to a&e and they'd come and see her. Well after 5 hours sitting in a&e they decided as she'd had a camhs appointment today they wouldn't see her!! Even the a&e doctor was outraged. Wouldn't be so bad if it wasn't them that told her to go down. I'm furious

Thanks runner and leap. Gp won't prescribe pill as she has only just started new ADs. Psychiatrist is going to contact him and ask him to reconsider.

Spoke to school today. They told me they couldn't provide end of term report due to her poor attendance. I said that's even more reason why I need it. I want to know what she has missed and where she is tracking. I've also asked if the fees we are paying can be used more creatively because currently I am paying for morning TA that we aren't using :/

Can't- darker thoughts can be a side effect. If it gets too bad call crisis line

Leap DD's amended EHCP for Sept was issued a few weeks ago adding one thing to section B and naming post-16 setting. I was thrown when they issued final early and without consultation as a meeting is planned between us, LA and post-16 to amend and add OT recommendation if any and SaLT (LA already have report and have attached in appendices but not included specifically). To be fair LA would still have had to issue prior to our meeting to hit 31st March deadline. Post-16 setting asked LA of implications and LA replied that amendments can be made following the meeting. Unfortunately OT assessment was cancelled and rearranged due to illness so meeting has been pushed back.

I am happy that post-16 setting has been agreed and DD2 is nervously looking forward to starting there. It is going to be challenging and exhausting for her but feels like a positive step. GCSE's are coming up and access arrangements are in place. I am aware that DD has been extremely fortunate to be re do this year with very kind and dedicated tutors.

Tiktok how long ago did DD start the antidepressants? The psychiatrist can prescribe.

cantthinkofabetterunsername most find things start to improve within 2-4 weeks, but for some it’s up to 6 weeks.

Muddling the EHCP can’t be finalised without you being consulted, the LA must issue a draft and give 15 days for you to make representations. Don’t let the right of appeal lapse in case the LA don’t amend again to add in SALT and OT. If a need has been added to B corresponding provision should have been added to F.

Zoo I am glad the call went well. Even if the school were offering A levels this year, the school’s point of A levels being too much for DS at the moment is valid. More level 2 qualifications would help DS, as without a sustained period of studying a range of GCSEs this year he would likely struggle with A levels. EHCPs last until 25 (or a recent ruling means 26 in some circumstances) so DS can do A levels afterwards. Will DS sit both lit and lang this year? If not, what about the other one? There’s also courses on e.g. Future Learn DS could look at. Or ask about functional skills level 3 in addition to the provision at school as a way of bridging the gap until A level.

If the LA haven’t issued an amended EHCP yet you need to threaten Judicial Review so when you know what placement you want you can appeal straight away. Otherwise if you wait to push the LA for a finalised EHCP until you know what you want you risk not having enough time for a hearing before September.

Leap - she started 3 weeks ago. I mentioned pmdd to the soychiatrist and she defaulted to pmt? She said she could not prescribe for them.

I had a call from social worker today following last hospital visit. She explained early help a lot better than the last lady where I declined the support. She suggested a TAF meeting - can anyone help me understand a bit more about that? And she was very surprised when I said all camhs intervention was still virtual and not face to face. Dd hasn't seen anyone in person other than when in hospital. She engages much better that way.

Thanks leap. That is really helpful

@Can't I'm sorry I didn't reply earlier to your SSRI query. I think the suicidal ideation is fairly short lived when you change the dose, but I'm not a clinician unfortunately . DS took quite a while to stabilise on his medication 3-4 months or more. Around 15% of patients take longer to respond than normal apparently.

DS has finished his mocks here.
I know he got a 9 in English and a 7 in Music ( exam was the first day back after missing months of school). No idea of what the rest are & no idea where he will be going to school next year 🤦🏼‍♀️.

Though I do realise how privileged i am on this thread as I'm aware that many of you would give your eye teeth for your child to be back in full time education.
And also to say there is hope along the way that things will get better, along with some setbacks of course.

Hi everyone-

Just sitting in psychiatrist’s office waiting for DS13’s appointment to finish. Started sertraline last month. Has missed a huge chunk of school year and I don’t see how new school in September will be positive change.

So sorry for everyone’s continued struggles- I read the last couple of pages of this thread and can surmise this is my tribe. We relate on many levels.
Zoo - DS school journey thus far mirrors our own in many ways. I hope he has managed to move on from missing his favourite subject. And fingers crossed DD’s health issue gets treated effectively .

1leap hope things are ok in your household

Hi Viking
I was only thinking if you yesterday!

Sorry I've been missing in action
Covid has reached zoo house and it's been very hard

I'm sorry you're ill @Zoo.
How are you all feeling?
It must be very hard to carry on when your family need you so much & you have no respite.

@Viking hopefully the Sertraline will help your Ds feel better within a few weeks.
Is he changing schools next year?