6 year old really struggling .. desperate for help or positive outcome stories!

[GlitterBall91]

Hi everyone,
sorry this is pretty long but I’ll try to condense it!

My 6 year old has always had her own little quirks and preferences for things but over the last year everything has completely spiralled and gotten out of hand.

This will be rambly as I’m not very eloquent with how to word it im sorry !

She has a coeliac diagnosis and won’t go near anyone after they have eaten in case they have touched gluten. This means at school she won’t play with anyone and so has no friends, she stays on her own out of the way at all break times and becomes very distressed whenever anyone including family goes near her after eating; she then lashes out because she is scared - despite having been told by her dietician and her paediatrician that gluten can only cause ill effects if ingested.

She is terrified of using the toilet in case it blocks. It doesn’t matter which toilet, it could be any other than ours at home. Subsequently we are experiencing school refusal because she’s scared she will need the toilet when there. She becomes hysterical every time we try to leave the house fo go anywhere in case she needs the toilet while we are out. She’s started to refuse to eat or drink at school and if we are due to go out anywhere in case she needs the toilet.
when we are out and when she is at school she absolutely will not go. I’ve tried encouragement, reward charts.. I even told her if she gets to the bottom of her reward chart I’ll take us to Lapland next Christmas !

She “confesses” to things that haven’t happened. She will say to me “mummy I just licked the bottom of my shoe” - even though it didn’t happen ! I’ll say sweetheart no you didn’t.. I’m sat next to you and then she says “but what if I did?” And becomes distressed in case she did !!?

i know this all sounds absolutely mad I just don’t know how to help her 😭😭😭
ive taken her to the GP and she will be referred to MH services but they’ve said the waiting lists are months to years long.
we are at the end of our tether, I’m desperate for her to be happy again. She is always so full of sadness and fear and worry 😭😭😭 she’s only 6 😭

has anyone else’s child recovered from these kinds of fears and anxieties ??
how did you help them ?

thank you for reading

Oh poor thing!
I don’t have any experience with this but have you tried to go through the school psychologist too? Could the school have a private toilet gr her- the disabled one?
Have you tried having play dates at home with anyone from school?
perhaps get a mindfulness book for kids where they write down fears/hopes etc and go through it each night with her?
Lastly, is there any way you could afford a couple of private sessions?
Im sorry, this sounds really difficult for all of you.

Thank you so much Pammela for your reply.
the school she goes to is only tiny and they have no pastoral support available for situations such as this- I have asked for help and they did offer her to use the staff toilet etc but she still completely refused.

i actually ordered a mindfulness journal type thing last night after seeing an advert on social media!

Im on stat mat pay at the moment as have a 5 week old and my OH earns minimum wage so private would be a struggle but I think we will have to look at what we can do going forward as you’re right, it may be our only hope 😢

thank you

I'm so sorry this sounds awful. I don't have any real advice, but look up 'pure O', a firm of OCD. It made me think of this as soon as I read your post. Hopefully, some kind folk will be along with some advice.

That sounds very much like intrusive thoughts/ocd, she needs to be seen by a specialist as soon as possible as she is very young

Oh poor love. That sounds really tough for her. I don’t have any direct experience with coeliac disease but I do have a child under CAMHS and the wait is loooong.

Have you looked at any of the coeliac charities / support groups? Also Guts UK is very good. They may be of some use or at least point you in the right direction https://gutscharity.org.uk/

Best of luck

I would approach your gp and request a referral to camhs, meanwhile speak to school about Ed psych, and if she has a consultant at the hospital try going through them - she needs help to deal with her medical condition which has caused these issues but might be best for a general assessment as she may have an unrelated condition for example

I thought OCD too, esp the confessions bit. There’s a good parents helpline on Young Minds website, and OCD Action/OCD Uk are very helpful. Don’t look for positive stories OP, look for answers.

Sorry to hear this, the school will have an inclusion partner and a link educational psychologist. Book a meeting with the school Senco and ask for a referral to both, as she is now refusing school you may want to ask who else they are flagging her to for missed education (possibly education access) this is on the basis you are in the UK.
The wait times are criminal but school do have resources they can outsource if you push for them.

Dd7 is similar although not quite so severe but then she doesn't have coeliac to contend with. She is phobic about herself or her family becoming ill and worried about touching things that she thinks will make her poorly and then putting her fingers in her mouth. Her extreme anxiety dictates everything for her and us most of the time. We've accessed a couple of low lever services which don't touch the sides. It's really difficult to explain to someone how much her struggles affect her unless they see her in person. We are slowly accepting that she likely has ASD and are attempting to get a (2nd) CAMHS referral which we know will take years and not actually help anyway. No real advice but a whole heap of solidarity!

hi OP, this sounds really tough.

Research is beginning to propose OCD as a subtype of ASD:

https://www.sciencedirect.com/science/article/abs/pii/S0165178122001123

It also sounds like your DD is struggling with relationships and social communication. Perhaps you could make a GP appointment to discuss possible ASD assessment?

Good luck

Thanks so much for your replies everyone.

GP has referred to CAMHS and also has written to her consultant who she’s under for her coeliac to see if there is any support available their end. I am just waiting to hear back.

im just looking at what private support is available as we are so desperate I think it will be a case of pay now and worry about how later 😖

i will also contact the OCD charities ! I do think OCD too which is what I suggested to the GP when we saw her.

Im going to email the school now also to re-request support from them! They’re not forthcoming but I’ll keep pushing

This sounds very much like OCD. My sister has OCD that she has therapy and medication for. I believe there was a triggering event for her, which I won't state here, and perhaps your daughter's was her coeliac diagnosis? She is in her late 30s now, but it started when she was about 11 or 12. She went without any professional support for many years. I think you need to seek a referral as soon as possible.

This sounds so difficult for you and your DD. It might be worth looking up PANS/PANDAS as a possibility if the change came on suddenly. I hope your DD can get the help and support she needs soon

I'm a play therapist (and teacher). I would try to get her so intervention. If you can pay privately for a play therapist or even better, creative psychotherapist, I would do that. Meanwhile your own relationship is key in terms of secure attachment. You will be supported by a PT also, they will guide you I terms of responding to your daughter at these times. It is mostly acknowledging her feelings.etc.

DD1 had a phase of taking things to heart that were said at school and getting very anxious- about the time she was starting school. She was super bright for her age but obviously didn't have the maturity to put things into context. For example, a teacher said at school that they must always wash their hands and about germs. She would come home with sore red hands as she had washed her hands so much but had not dried them properly.

While I second the advice to see a private specialist if possible, this book which we worked through together helped DD1 pretty much get over it.

What to do When You Worry Too Much

DD2 was a baby also when this was all happening and I think the arrival of her little sister was related to the anxiety she was experiencing.

thank you, I have just bought the book that you have recommended, emailed the school and am on live chat with someone from Young Minds.

Books are great. Another one I'd recommend is 'The little squirrel who worried' No need to frame this one as anything other than a story to read together. Best of luck.

I'm really glad you are right on this OP; ok so none of us can diagnose, but so many parents I've come across in support groups etc go straight to denial with "your child might be ill with insert condition xyz, but mine isn't and if she is I will get it sorted out in a few days". 5 years later ...

If it is OCD then catching it so young can make all the difference. But regardless of what "it" is, you are doing all the right things. Keep digging, don't be put off and don't be fobbed off (CAMHS fought me for 2 years to stop my DD being referred to specialist services - OCD is an expensive condition and they wanted her to have something cheaper).

Thank you!
I have a meeting with the school SENCO on Friday so hopefully they might be able to offer some support!