Parents of anxious kids/teen support thread(part 4)

[Stilllivinginazoo]

Hi everyone
I cannot believe we are moving onto a fourth thread!
This is open to anyone looking for support or advice with a child or teen who suffers from anxiety
This is a long running thread and we have some popping in and out,some long term and some who just dip in for advice- all of these are just fine!
We understand the challenges of raising anxious children and how small wins matter(to others they're nothing special,and many are rude enough to say so!)and the sheer exhausting all consuming efforts that parenting very anxious children can entail
Only thing we ask is that others are respectful and kind.all situations are unique ,and there's no judgement allowed

runner thanks lovely

So current situation- lil zoo doesn't meet criteria ED...after bit dispute with camhs ed team they agreed weigh next 4 weeks(lost 300g this week as they said try and resume normal activity despite her be very tired

have any of your teens tried EMDR? its been suggested to me but is expensive.

lu9months EMDR has been discussed for DS1 whose primary MH diagnosis is PTSD, but the consensus is he is too young, immature and unstable to be able to engage appropriately with it. Frustrating as it would help. I think it has also been mentioned for Anne's DD. I hope Anne is managing OK as she hasn't posted in a while.

If money is a concern have you considered applying for PIP? It's not easy to get for MH conditions, but is possible. EMDR is available via CAMHS if you can get it that way.

Zoo I'm sorry getting help is such a fight for you. I hope the CBT/dietician/medic to sort sleep materialises and helps. Have you thought about an EHCP for DD2 - that way she could have home tutoring. How are you?

1jump thank you so much for the advice.
We have been told DD will need an educational psychologist report but that there is wait for one so they may not be able to decide echp within time frame if there is a delay as they cant issue ECHP without one
Also frustrated with CAMHS , because I've no idea how she will be ready for CBT without help. Music/ art / animal therapy is a good idea, not sure of our chances of getting it but still don't ask don't get, I have discovered that nothing is freely offered , you have to ask and push for everything.
Everything seems bloody hard work.
DD has just said she is dreading going back to school, she seems fixated on an incident when senco unfairly told her off ( a couple of months ago) and cant get past it.
She says she hates senco, hates SEN area, hates TAs .
I asked if she would like to look round other schools but she doesn't want to do that either. From my perspective school seem supportive and we have good communication with them and DD after struggling with friendships now has a close knit group of friends so changing schools would be risky but its a girls grammar school so can be pressured and not sure if being all girls is a good thing- then again maybe no school is perfect

Zoo, i am so sorry things are so tough for you.
I really struggled to get help for eldest DD who was eventually diagnosed with anorexia but only when she was on brink of hospitalisation. It is so difficult, keep pushing and hang on in there, IBS must be difficult for her to cope with, maybe she doesn't want to eat in case she urgently needs the loo, I really hope she gets the help and support she needs.
Reports or forms are always depressing reading, always worse case scenario, easy to forget the small wins, hold into them.
Sorry you are also having problems with DS , it must be so so exhausting for you.
I think sometimes other DC can kick back if they feel most of the attention and focus is on another DC, but I think if you have one DC with SEN then there might be a higher chance siblings may also have similar problems.
Please try and look after yourself, I hope you have some time to relax this easter and things are calmer and happier without the pressure of school.

Runner, the LA are stringing you along. The timescales aren't optional, they are set in law. If the LA EP can't assess within the timescales the LA must commission an independent one. IPSEA have a model letter you can use to complain. Let the LA know you know they must stick to the timescales even if it means an independent assessment, and if they do break the timescales you will go to Judicial Review. You should ask for DD to be assessed by SALT, OT and psychiatrist &/or CP, too.

Art and music therapy are offered by CAMHS, as are others such as therapeutic story writing and drama or play therapy. Although, as you say, you will have to fight for it. I haven't heard of animal therapy via outpatient CAMHS appts, only CAMHS inpatient/day units or medial wards, however I don't really know much as DS1&3 are allergic. All of them can be included in EHCPs which can guarantee them (if they are in section F as they should be). If CAMHS won't or can't provide the LA must commission independent providers.

Hyper focusing on one negative event is common in those with MH conditions. I often wonder what comes first. DS1 holds a grudge for a very long time, you don't get a second chance with him. I remember Zoo posting her DS is similar.

I would be wary of moving schools at this point without an EHCP. You could be jumping out of the frying pan and into the fire. Staff that don't know DD, in a school DD doesn't know, without support in place from the beginning could set DD up to fail.

It was being in crisis on the brink of hospitalisation that got DS1 the help he has too.

runner fraying at the edges is best way to describe me at mo.i thought hols would help,esp for D's,but alas he cannot let go of how much he hates X,y,z
Been doing walks in the sunshine to boost mood/keep everyone calm and busy.wish I had more energy tho as 2-3 hour jaunts wipe me out somewhat!

Hi my daughter (15) panic attacks accelerated when school returned after the first lockdown and now she is completely agoraphobic. Is anyone on here trying to support a child with this?

Welcome Pick. There are a few posters on here who have found going back to school has triggered or exacerbated their DC's anxiety.

Is DD getting any support?

DS1 hates leaving the house. Not agoraphobia but he find the environment difficult to cope with - people, noise, more unknowns, the weather. It is hard and has become harder in the last year with naturally going out less.

DD started like that but then the agoraphobia happened suddenly in February.

The only support she receives is from a counsellor with 'the cluster' - school counsellor basically ( over zoom) and me paying £70 an hour for EMDR therapist. CAHMS have basically discharged her which I'm dumbfounded about.

I go out with her once a day and try to practice different places and over time that's helped.

I'm now contemplating a private psychiatry assessment as there is absolutely no help forthcoming from CAHMS and the gp seems unable to do anything unless they say so. It's a completely useless system.

pick I've pm you

Complain to CAMHS in writing. Unfortunately those who push for help get better care. If you haven't already, applying for DLA would help with the cost of private appointments.

When else are school doing to help? Is DD Y10 or 11? LAs have a statutory duty to provide education to compulsory school aged pupils who are too unwell to attend school. Also, have you considered applying for an EHCNA? An EHCP is another route to accessing MH therapies.

Like you, we make leaving the house each day non-negotiable, even if it is just in to the garden, if he gets out of the routine it will become even more difficult.

Sorry pick it pinged back unsent
Standard treatment for this is exposure ladder-.have you tried that?

picknmix1984 my ds 16 has had panic attacks over last few weeks ( been diagnosed with depression and anxiety before) and has not made it into vital gcse assessments. have u found EMDR helpful? hes linked in with a psychologist but a year of speaking to him weekly ( privately) hasnt prevented this, though he does find the talking helpful. im sad he might not achieve his potential/aims due to anxiety about exams

Zoo I’m so sorry lovely 💐. I do understand. The more I interact with you, Jump, and others on this board, the more I see such similarities in what our DCs (and us as parents) contend with daily.

Jump thank you for explaining WFH. DS1 has a similar ratio to your DCs - it hovers between 78-83%. The indoor trampoline is starting to drive DH nuts, as DS1 uses it at all hours. I’ve gently mentioned the idea of replacing a fraction of the trampoline use with something else but he won’t budge.

Fingers crossed that DS2 is turning a corner. We both spoke with his GP on Thursday and she said she would put in a “semi-urgent” referral at our hospital. Assistant called back later that day to say they can only add to the waiting list but go to A&E if in crisis. Was told they receive 150-200 referrals per day!

Most CBT are not doing face to face sessions and she wouldn't meet up with them anyway. I'm doing the exposure therapy myself.

Good idea about applying for help but if it's assessed on income I doubt we would qualify ( even though I am on sick leave)

Is it still worth doing?

@lu9months yes EMDR has been found to be as effective as CBT in fact better for kids that can't vocalise their anxiety.

viking
I'm sorry there are super long waits for help there too

Pick none of the support in my pp is income based. It also sounds like emotional literacy support would help.

Lu qualifications and academic achievement are no help if DS can't cope. If DS' MH prevents him sitting exams at the moment he come come back to them in the future. Applying for an EHCP may help this, as they can continue until 25 if necessary.

Viking I am sorry waiting lists aren't any better for you. Do go to A&E if you need to. When we have taken DS1 in the past it has resulted in more help, quicker. Most ED teams aim for 95% WFH, with anything less than 85% being more concerning. I don't know if it is different because exercise is important for a medical condition DS' have, but we were advised not to limit activity. Would DS1 notice if you fortify food or drink supplements?

Zoo

Jump His GP has monitored his weight the last two years, and given general suggestions re: nutrition and supplements. I have tried/snuck in quite a few but with limited success. She ruled out ED based on questionnaire, and last time I contacted her told me I’m doing a great job but at this point would be better served by one of two autism agencies in the city. He’s 18 now so consent is another issue. I realize I didn’t adjust properly to his height so his WFH is actually between 82-84%.

Viking adult ED teams use BMI here. Underweight classed as

Jump thank you for this. I think GP asked about picky eating but I wasn’t sure. I was pickier at his age so my perspective is probably skewed. But I was always normal weight and gradually expanded my diet over the years.
What you are saying is frightening, and my worry is he will resist help. GP in the past has said as long as he’s maintained that is less of a concern than if he is losing.

I’m not clear about what you mean re: a postcode lottery, so I’m guessing that doesn’t apply here. But there is a transition from child/adolescent services to adult services when they turn 18, so am trying to navigate that.

I am sorry Viking, I didn't mean to worry you. The GP is right, obviously losing weight would be a more pressing issue, but that doesn't mean there isn't still a concern. At 18 it wouldn't be uncommon for DS1 to still be growing, in which case maintaining isn't enough.

Transition must be worrying for you with the concern over whether DS will accept help.

Apologies also for using the phrase "a postcode lottery", I meant does access to MH care and the quality of it differ vastly depending on what area you live in?

Jump please don’t apologize- I thank you for bringing it up. I will call a couple of places this week to get more information.

Yes, the consent issue and becoming an adult is stressful. The GP office kindly reminded me that going forward, DS must consent to sharing his medical records with me. His psychologist also told me over a year ago that he will shortly age-out of services and to start preparing for it.

I imagine the quality of health care varies across the country. I live in the largest city so benefit from close proximity to the best services available. However, with wait times as bad as they are, I wonder whether it is currently better elsewhere. In general, I think quality of health care is somewhat consistent for 90% of the population who live in the southern part of the country (where our largest cities are). Unfortunately our Northern/First Nations communities have a poorer quality of life because of inadequate services. The government has incentives and allowances to encourage skilled workers up North (the northern centre of Nunavut is 3,000km away, so it’s a challenge).

Phone call tonight from DS2’s school - school closed for next 14 days. Remote learning for all.

viking I take the sad face as D's doesn't do well with online classes?

My D's is very low weight.we weight him monthly and were given a centile chart.as long as he doesn't drop 2 centiles we just plod in.hes a voracious eater,and he's growing like a weed....