Parents of anxious kids/teens support thread(part three)

[Stilllivinginazoo]

Filling up a second thread,here's a new one to keep that support running!

This thread is a supportive,non judgemental space for those who have anxious children,or care for children with anxiety

You can pop in and just offload,or stick with us and share ideas etc

Caring for an anxious child can feel like it dominates your existence and drains every last drop of energy you have,and the sadness of watching your child's distress can be overwhelming.only those who have lived it truly understand that

We also love to hear successes.it can be hard in real life sharing something you are proud of your child achieving if others do it as standard.we get that and it's good to have somewhere where people are pleased for those little wins

You are no longer alone

Mine are all unravelling in year 8 onwards

Looking back I can use dreaded hindsight to see there were signs before but it's only when it all blew up I noticed.kicking myself for not seeing things sooner with D's,I've accepted now I cannot change what happened or spent my life be mad at myself for not responding sooner.live and learn,pick it up here and now and move forward as best we can

Skip D's has a life is perfect or utter disaster attitude.ive found it really hard to work through any of that with him as it's such black and white thinking.any tips?

Mine broke when she started secondary

I have a psych review tomorrow morning. Not sure what to do. Dd doesn't want to take meds as she feels more herself without them, but off them she is having meltdowns every day. Her highs are higher but her lows are lower. Anxiety is debilitating.
She put the dark thoughts down to the meds which is why she stopped taking them but they Have actually resurfaced.

Anne it's virtually impossible to know what to do for the best isn't it?dd2 getting gut pain on higher dose,reflux worsening and wanting stay in bed without motivation and exhaustion is building.its hard to decide where to draw lines..
Let us know how you get on tomorrow

Good luck tomorrow Anne.

I hoping DDs prescription arrives in the post tomorrow. Supposedly posted on Wednesday

Zoo - dd started to feel a little better on the higher does but got awful gastric pain. The gp made us bring the dose back down as she said that it wasn't an acceptable side effect as dd was bent over in pain. She felt we would be better trying something else.

Anne I hope the review was useful.

Zoo does DS have any emotional literacy provision in the EHCP? He should. DS1&3 both have it in theirs.

To put problems in to perspective we use a 5 point scale that goes with the Zones of Regulation chart. DS rates his problems (real & perceived) on the scale alongside placing himself on the colour that matches his feelings.

We discuss why he thinks that and why we disagree, and whether the behaviour is expected or unexpected. We reflect on what we can do to make the problem smaller, coping strategies (using the tools for that colour) and what we can do differently next time. Usually we end up talking more than DS and sometimes he doesn't listen, but sometimes he argues his reasoning.

The above is exhausting and slow progress, but has helped. At first DS couldn't match emotions to faces, everything was either happy or sad and problems were always a 5 - from his sandwich being cut 'wrong' to a broken arm. Now he knows a wider range of emotions, has rote learnt what faces go with what emotions and can put the emotions in the right colour. When not in the moment he can place a group of problems spread out across the scale - admittedly nothing is ever placed in 1 without prompting, but it is an improvement.

Obviously you can't do this in the midst of a meltdown but if you catch them soon enough it can help deescalate.

Once there is a better grasp of emotions you can behaviour map expected and unexpected behaviour, making chain of how DS1's behaviour makes others feel and how in turn others' reactions to his behaviour influences his emotions and subsequent behaviour.

DH and I (and therapists/tutors) model finding positives in everything. Sometimes, when prompted, DS1 can see them himself even if he doesn't focus on them, other times we have to highlight them. There's a scale for this too that aims to help DC think about the positives without perfectionism, but we don't use it. We model making mistakes, coping with them and learning from them.

We use zones of regulation skip, but not the perceived scale. That sounds useful. Everything is a disaster for dd.

Call with psych this morning wasn't great. As dd doesn't want to take any more meds the psych felt her hands were tied. She wanted dd to try liquid fluoxetine as we could control the dose better but she has a meds phobia so that will never work. I asked if there was anything else - she said an off license anti-psychotic might be a possibility. But dd doesn't want to try anything
She said the school were worried all of her time out would impact her learning and ability to achieve her full potential as she is so bright. dd heard that and felt even more of a failure so then had a huge meltdown and couldn't face going school today. Not helpful really. I hope the cpa meeting next week is better.

Everything being a disaster is a common theme for DC with MH problems &/or ASD. I do wonder which comes first.

Anne, here is the 5 point scale for outing problems in to perspective. DS1 personalised his with photographs of him pulling various angry faces . On the other hand DS3 prefers a black and white version so as not to draw attention. I can't find a link to the black/white/grey thinking scale, if you like I will dig the file out of my emails.

The psych could have been more tactful, DD was bound to react as she did. Perhaps they need this pointing out to them to avoid a reoccurrence in future. I think you should apply for an EHCNA.

DS1 takes Risperidone which isn't licensed for PTSD, but often used successfully. It reduced the number and intensity of flashbacks. Previously we discussed switching to Olanzapine or Aripiprazole to try to get him to a place where he can access EMDR. As DS1 is younger it is easier. He doesn't get a say in what he takes and doesn't know any different because he has always taken meds for medical conditions so they are just added to those.

Link doesn't seem to work. Try again here.

skip I wasn't aware emotional literacy was ment to be in ehcp...
We have TAF on Thursdaywhich will tick camhs off as I'm ment be in chilled anxiety group with dd2 at 2,but meet doesn't start til 130
It's a case trying get highest number of professional together.as it happens we are only catching both girls heads of years.ds school aren't responding emails(think that member staff is off I'll) and camhs have pathetically limited I can do days-considering she is supposedly working full-time from home three slots of 30 minutes over 4weeks it feels like she's deliberately avoiding it as there's going to be a lot of complaints

Dd2 is not coping at all on 50mg sertraline presently.panic attacks are epic,depressions worst ever been,gut pains worsening and aggrevating reflux dreadfully.i said give another week and if things aren't settling we shall have to look at if this is worth the distress.i understand no improvement expected in under 4weeka but impact on her is significant

Camhs told her last week she needs stop avoiding things,which she took badly to heart.she avoids going out alone given she cannot judge speeds cars properly whilst distressed and very busy road to cross at end our street.shes not in school as capacity to sit and concentrate isn't there and she's still in stage would easy lump someone who upset her or start swearing at very least...
School gave been kind,her history teacher asked head year to pass message she's a talented historian and he's certain she can make up the coursework when she's ready and able which was a nice little boost

@Stilllivinginazoo that was nice of the teacher to say that. Missing school seems like such a big thing so I hope that helped her.

My DD went in today for the first time in a week. Just for PE and break as she wanted to see her friends. It was a mistake. PE was an inter house event so she was stuck with girls she didn't know and felt totally isolated. Very bad from the school in my opinion. She felt incredibly low and those intrusive dark thoughts kept going in her head. It's taken most of the day to get her back to her normal low mood. No school tomorrow. But she is at least now talking about doing revision at home, following her timetable.
We saw CAMHS and they are planning on putting her forward for anxiety therapy- hopefully in a couple of weeks.

I'm desperate for the fluoxetine to kick in but we're only on day 2 of it.

five what dosage has she got?(we started25mg which is tolerance check,not therapeutic)

We're on 1.25ml once a day. Very low.

Dd had a brilliant day at school yesterday with her new TA. Went to several lessons. Today she couldn't get out of bed. Exhausted, sad.
She hasn't been to school. We will try again tomorrow.
We have talked about medication again and she has said she is willing to try the anti-psychotic so I will call camhs.

Anne I'm sorry today was hard.yesterday sounds like a huge step,and today's acceptance of new drug is a win too.
Its not easy watching the ups and downs and not being able to make it better,but as they move thru teen years we are here to comfort and support not necessarily fix things

Well DS not happy boy.timetable had another minor change and I spoke inclusion officer regarding lack Englishshe's agreed to ask appropriate staff-previous experience that will get me no where.i need start doing home schooling of some English or when he does get forever placement will be too behind to catch GCSE if seemed appropriate.i had dd2 books and revision books so can work with that I guess,just don't need added stresses

School nurse have booked initial phone chat with me for next week re lil zoo not eat/drink at school and checks they could do.she had bloods at hospital again today to check renal function/blood count etc.was hard get blood out(had drunk very little previous day)and was unhappy sprayed her with numb stuff before had chance say no thanks as she finds that sensation worse than actual tests!

Tough day with dd2.bit shop,lots panic.took some phenergan and had nap pm as sleeps awful-broken and restless
Her dad saw a Percy pig tree in m+s food hall today and bought her it(small real tree with Percy lights and cut out Percy's to put on it)was lovely to see her smile for a bit

Five 5mg OD is a small dose, don't be surprised if there isn't a noticeable difference. Children normally start on 10mg OD or 20mg alternate days. It's so frustrating when schools just don't think. Why they couldn't let you know so you could make an informed decision is beyond me, it would take 2 minutes to email or call.

Anne I am sorry you had pay back yesterday for the brilliant day Tuesday. Fingers crossed DD is still willing to try the anti- psychotic when you get them.

Zoo yes, it should be. In section F. If that isn't, can I check SALT, social skills support, OT including sensory OT alongside some kind of independent living skills support and MH therapeutic provision are all in there at least. Physio if DS has a need for it, including if DS has low muscle tone that is often comorbid with ASD.

When does DD have a medication review? I hope the history teacher gave her a boost.

DS' school sound chaotic! Don't worry too much about if DS isn't ready at 15/16 for GCSEs, the can last until 25.

DS1 has had a terrible 2 days, he couldn't regulate himself or calm down. We ended up using his emergency lorazepam.

The dreaded brown envelope from DWP arrived. My heart sinks when I see one, especially this time because the turnaround time was so quick. For once it was good news. DS1 has been awarded HRC/HRM DLA until 16. A pleasant surprise, I thought we may lose HRM this time.

Good news about the DLA skip :)

DD had another good day yesterday. She was in the whole day with her TA and enjoyed it. She then exploded at home and was up until midnight. This morning she didn't want to go in at all. I managed to convince her to do half a day and then we found the TA is off sick. She crumbled and so can't make today. 2 days this week is good but she now feels like a failure.

I am sorry you are paying for a good day again. The effort of masking takes a huge toll. For now would it be better planning for every other day off, so that DD doesn't feel she's failed? Or everyday but half days?

I have messaged the school to suggest that perhaps half days would be a good idea. We have the cpa meeting on Monday so I dont know if any suggestions might be made there.
I'm really not sure what to say to them at the moment. She is sad, broken and having meltdowns every day. She feels like a failure and like nothing will ever get better. My heart breaks for her. But when she does make it in to school she masks. So its only at home that the anxiety and meltdowns come out....

I hope Monday goes well. Education should be discussed in some form, one would hope someone suggests applying for an EHCNA.

Don't let anyone tell you because the issues only manifest themselves at home that it is a home problem. If school was easier for DD she wouldn't need to mask to the extent she is currently. The meltdowns are a sign of unmet needs.

I mentioned ehcp to psychiatrist last week and she said that in her experience private schools often offer as much as woukd be put in ehcp.
I think I will mention it as one of her wishes - that she wants the people supporting her to understand her needs and perhaps and educational psych assessment may help with that?

[* edited by MNHQ to remove personal info* **]

Not in my experience Anne. You only have to read MN threads to see many independent schools aren't supportive of pupils with SEN, and if they are they often charge. Poor advice from the psychiatrist, educational SEN specialists would advise you otherwise.

Without an EHCP, at best, parents are left paying for support costing £££ which could be used for more or future care. At worst the child misses out on support to the detriment of their MH. DS1's EHCP costs over 100K/yr, and whilst DS3's costs significantly less it is still money we can set aside for additional and future care.

A trained ASD specialist 1:1 without you funding it. SALT, OT, ELSA, social skills support would help someone with ASD. Therapeutic MH support - CAMHS are unlikely to let you know this is possible in case they are tied to providing more support. Touch typing programme if DD uses, or would benefit from using, a laptop as many with ASD do.

As you say, an EP assessment would help. Without a needs assessment you may not know all DD's needs. DS1&3's highlighted hidden needs.

This is so helpful skip.
I think we could ask for SALT and ELSA tbh as she clearly struggles in both areas.

Hi, I've been on the thread before but probably name changed since.

Can I ask for some advice? Dd19 is suffering depression and anxiety. She's meant to be at uni but has been home since October and did nothing since term started. I more or less forced her to self refer for counselling, her gp has prescribed antidepressants a month ago, she says she feels no better. She sleeps all day, is awake at night, so sometimes I only see her for a few hours in the evening. She's been told her best bet is to repeat the year from September, but she's tied into her rental contract. Financially her father and I (divorced) aren't in a situation to support her. She'll not be able to pay for her flat. She says she can't work (no jobs in this tiny town anyway) and can't face signing on. If I try to discuss it she just cries and says it's all hopeless. She won't go anywhere, all she'll do is watch TV with me. My mental health isn't great and I'm struggling to keep myself going, I just don't know what to do to help her.