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

Zoo it’s a struggle either way, I guess. DS2 perked up when I told him but that is because the bare minimum is accomplished (if anything).
It is so good that your DS is a voracious eater. I felt DS1 had a good appetite up until mid teens. Then I started noticing he was hardly gaining anything as he was growing. Up until then his bmi was consistently around 20th percentile. Basically he’d grow but struggle to gain with it. He manages most days to eat 2,000 calories. I don’t know. I was a skinny reed into my late 20s but still had healthy bmi despite people always commenting I was too skinny. I have a medium, not small frame which may have explained it?
I hope you had a nice Easter .

I also think there's a difference between DC who are underweight and struggling with their nutritional intake, feeding behaviours and health in general compared to someone who is otherwise well, physically and psychologically, eats a varied and plentiful diet and is putting on weight/maintaining their curve but is still underweight.

DN is on the cusp of being underweight, but he eats well, doesn't have any medical conditions or deficiencies, and importantly he's happy.

Whereas DS1&3 are underweight. They are slowly putting on weight and growing but it takes a lot of effort to carry on that way. They eat a lot because they have to because of a medical condition, have overnight feeds, but their diets are structured and somewhat restricted even though they eat a fair range of foods. Their views and thoughts about food aren't typical. Things like eating painfully slowly, food touching, mixed together, eating in a set order, deconstructing sandwiches, needing to know the menu plan... If allowed they would bargain and negotiate every meal and snack. Given the choice DS1 would never eat anything, ever.

Viking I hope online learning is as painless as possible for you and DS2. Thank you for sharing, it is interesting to hear of the differences and similarities between healthcare systems.

Jump thank you for acknowledging this. It must be very difficult with DS1 and DS3’s unique challenges. You are quite amazing and I admire your strength.

jump every insight into you life shows how much work you put in with your family.some days it stands out even more to me than others.you are amazing juggling and holding everyone afloat here too.we appreciate every word❤️

Not one of our best days.took dd2 to be weigh/height check as part camhs reviewwe knew weight gain was going to be significant as comfort eats/has no sense being full is often hungry despite eating mountainous volumes.last weigh in Nov 2019 9st 4(a fairly big drop as anxiety had seen her eating normal size portions for first time in her life) she's 11st 9 today and devestated and angry

How is DD2 today Zoo? I'm sorry she was so distraught. As an adult I struggle with comfort eating so as a teen girl alongside the focus on her sister's eating it must feel impossible for DD2.

Thank you Viking and Zoo, I just do what I need to, as you all do too. There's no other choice really, is there? I am lucky, DH is hands on and we have secured a level of support for DS1&3 that many fight years for, sometimes unsuccessfully.

Zoo you are rather remarkable yourself - managing 3 DC with differing needs alone. It must be especially difficult balancing DD3's eating (or lack of!) alongside DD2.

Having an appropriate level of support is crucial, isn’t it? I imagine the work involved to reach this point was incredibly challenging Jump.
Thank you again for mentioning ARFID. I believe this is the route I need to go down as I read more about it and how common it is in autism. It is making more and more sense.

Zoo - I agree, you are exceptional handling 3 DC with different challenges on your own. You both have my utmost respect.

It is, Viking. Before DS1 had the support he now has he was on the verge of a CAMHS inpatient admission at the age of 6. Had he been older or without medical needs complicating what unit he could be admitted to he would have been. Now he is stable-ish. The last year has highlighted how much we normally rely on respite.

We only have the support we have because we fought for it and enforced DS' rights when necessary - multiple threats of judicial review, a pre action letter and a LGO complaint upheld. DS3 almost certainly wouldn't have an EHCP or social care provision.

I hope you can find someone who listens to your concerns. If professionals listened to begin with they would save everyone time, energy and ultimately money. You have a lot to cope with yourself.

Dear All

I’m sorry to hear about all the difficulties you are having but glad to be back to be able to be amongst people with similar experiences.

My DD1 who is 14 is waiting for ASD assessment and I’m always in two minds as to whether to go ahead. Just when I think things are better they go wrong again. She started a new school which she really wanted to go to but it’s performing arts half the time so this is putting a lot of pressure on her (not to mention that she started in Jan so suddenly had to go from getting herself ready to go to school to doing everything online). So she did really well although there were quite a few meltdowns and I must have sent 10,000 emails!!! She actually manages to eat breakfast before she goes some days and she eats lunch too (at least a few bites anyway!) which is major progress because she has emetophobia so never used to eat before or during school.

Like many of you, we have had some serious eating issues in the last year and I’d love to hear some people’s advice and shared experiences. She used to be at the top end of a healthy BMI and she does lots of dancing. She was wearing size 10-12. Then someone at her old school made a comment and she decided to lose weight so she ate virtually nothing for 6 weeks and shrank before our eyes. I managed to stop the weight loss before she got underweight and hereby hangs the problem. As others have found, a normal BMI (albeit only just) means it’s very hard to get any help. She has days when she only eats 500 calories (and that’s only because tell her she has to) and then other days when she literally eats everything then has a huge meltdown that she is fat and has no self-control (she’s size 6). There’s a definite ASD aspect to all this too. If conditions are not as she planned then she may not eat at all. If we go to buy ingredients and one is not there then the whole plan in thrown out. She has Easter Eggs in the house and because she is currently on 500 a day (although agreed 800 as she has a dance class later) she can’t bear them to even be in the house and wants to throw them all away. Sometimes she’s fine for days and sometimes the meltdowns can go on for hours and hours. The GP is sympathetic but struggling to get CAMHS onboard. DD1 hasn’t had her period since last May and I can’t see how she’ll get it back when she still has several days a week when she is starving herself. She does have some days when she eats very healthily and adequate intake but it’s not the norm.

I’d be very grateful to hear other people’s ideas.

Thanks

bigbus i get great advice about lil zoo eating issues from the teen eating disorders board.theyre very helpful and kind.i would add,based on what they say she needs intervention as 500 Cal's a day isn't enough even for her body to do basic functions of digestion and breathing etc...lil zoo hovers around 1000 (she doesn't count,but I was told by ED board)and has lost almost a kg in two weeks.

Big I second Zoo's suggestion of posting on the teen ED thread.

Have a look at the junior Marsipan criteria. DD is hitting amber/red with her calorie intake. I wouldn't be surprised if other areas are red or amber either. Do you have a HR or BP monitor?

DD isn't eating enough, even 800 is still worryingly low. Starving and then eating a lot leaves DD at risk of refeeding syndrome. Eating a lot after starvation can be dangerous. Do you think there is an element of exercise compulsion too?

On a day DD has eaten very little and perhaps also meets other red criteria I would phone the GP, tell them she is hitting the red alerts on the Marsipan guidance and ask if her intake and obs are OK - the answer should be no and the Gp should arrive for you to be seen urgently or send you to A&E. Others on the teen ED thread have had success doing this. If it doesn't get you anywhere go to A&E with a printout of the guidelines. The guidance specifically states "the most medically unstable patients can have a normal weight".

It certainly sounds like DD needs an ASD assessment.

Zoo has DD had obs done as well as weight?

jump yes.shes got high b.p every time do sit to stand one.they ask she's anxious.she says no.attempts at ECG have been hit and miss for same reason.blood sugar was ok

bigbus Your experience sounds very similar to what I went through with my eldest DD, as you say camhs dont want to help, even if they are only eating 300-500 calories a day, no periods for months and obvious red flags and distress over food, until they are seriously below healthy bmi.
We also struggled to get help, went at least once a month to GP., we were finally referred through school nurse who referred to early help who then referred to CAHMS so ask school if they can refer to school nurse or early help as another route to try get to cahms. keep pushing and good luck, its makes me so angry its so hard to get help.
Do get a ASC assessment too, it was never considered for my eldest , who is academically bright and a perfect pupil -never caused a stir, but now my youngest DD is waiting for a asc assessment it makes me think that my oldest DD may also be on the spectrum as there are similarities

academically bright and a perfect pupil -never caused a stir

Runner you have described DD2. High achiever, quiet, compliant people pleaser. What others don't see is the anxiety and masking that so often go hand in hand.

1jump, yes sounds very similar, dd1 definitely a people pleaser

academically bright and a perfect pupil-never caused a stir D's and lil zoo to a T....
Dd2 also,but she has to work for her grades,more effortless with the other two

Thanks everyone for your replies. I’ve seen the ED services criteria and the only one she even remotely fits into is the 500 calorie thing and the problem is that’s not everyday. She did it for 3 days and now she’s on 1400 but there will also be days when she eats probably 5000! When she’s on 500 she’s totally obsessive and won’t even drink diet Fanta because it’s 10 cals per glass and Diet Coke is 1 cal. But on binge days she eats a lot. The GP has asked for some more bloods and an ECG and is going to try to refer her again. I think we might try to find the money to pay for an ASD assessment because we’ll wait forever here, particularly as (like many of your DCs) she’s never a problem at school! Obviously I know there’s a lot of masking and camouflaging going on but schools often seem to think we’re just fussy parents. Sometimes I’d like to film a meltdown and show them but obviously I wouldn’t do that to DD1!

Thanks so much for all the advice. I’ll head over to the ED pages too as suggested.

I have reported the above post.its inappropriate to use this thread for any purpose/gain

@Stilllivinginazoo @MNHQ Apologies, it wasn't my intention to cause upset. I thought it was a good opportunity for other parents like myself to get some support. I'll have a look at the guidelines.

[quote RachelBfB]**@Stilllivinginazoo* @MNHQ* Apologies, it wasn't my intention to cause upset. I thought it was a good opportunity for other parents like myself to get some support. I'll have a look at the guidelines.[/quote]
Unfortunately I can't respond as the original poster because sadly I don't seem to be able to log in using my original account.

I didn't see the post, but I imagine you can't log in because you have been banned, Rachel, especially as it sounds like you were advertising your company.

Is it bedtime yet?

Hi all

How are things? Are the holidays easier or more difficult?

bigbus both are difficult,in different ways!D's needs the structure,so it's difficult to jig him along without the it's a school day,it's the law that's why you have to do X,y,z kind of approach.dd2 finds holidays calmer.shes been revving back up past few days to near unbearable levels of snapping at meshe "should be" doing assessments this week in a levels if at school,cept she's not keeping up (motivation is harder at home and the work needs the classroom discussions really to make it easier).her sleeps awful and she has got some super unhelpful bad habits which she is refusing to accept are suchit's her 17th birthday tom and I've bought her a white noise and night light machine in hope I can turn off internet and the sounds will help as she does often fall asleep listening to similar.sges got it into her head if she stays awake til she's utterly exhausted she won't then be able to wake in night panicking.great but I still make her get up at 730/8 and she in foulest of tempers as tired.i will not bend on that one though.she currently gating me as I've decided she needs to be moving too,and as NHS website says minimum hour a day that the target.walking or cycling(exercise bike) or mix of the tow.im evil apparently

@Stilllivinginazoo it sounds very complicated and exhausting! I don’t know how you do it. I had a look at the ED pages. Its very scary. DD1 had a wobble yesterday but today she ate well. Then I get worried she’ll gain weight - not because I don’t want her to but because if she does she’ll lose it and most probably refuse to leave the house or eat until she gets back to the lowest weight we have agreed on. I would love to have a day without any conversations about food or weight!

bigbusI don't know how I do it either tbh.i know she will eat hummus,heaps of veg and a pitta plus fruit at teatime.ive started taking her shops to choose stuff in hope that'll kick start her appetite.she ate pork with stuffing we got from Asda in a sandwich yesterday (only eats cold fpod)she eats sweets/crisps etc if wants them so I at a loss what to do next.ED team said she didn't meet criteria,buy agreed as has dizzy spells to moniter few weeks.they reviewing tomorrow (teams meet)
I'm really tired all the time at mo.likr bone crushingly have to sleep tired.think it's age related hormones