Worried about DD

[SuperMumTum]

DD is 8. She's recently been diagnosed with a relatively common autoimmune disease which can be appropriately managed by a change of diet and regular checkups. No medication required. She's taken it well and seems to be improving in her general health with only a few blips - some fainting occasionally and a slightly lowered immune system.

However she seems to have a few other issues and I don't really know what to do. Her performance at school has completely nosedived in the last 2 years, her handwriting is illegible, she has no apparent capacity to learn things by heart any more like spellings and times tables; she doesn't seem to concentrate at all. She doesn't listen, I have to repeat basic instructions over and over again. She never picks up after herself or takes any responsibility for herself (getting dressed on time etc) despite very clear instructions. When she was in reception year (4 years ago) she took to phonics, reading, writing etc really easily and was obviously flying ahead of the class. She's clearly intelligent, can hold a reasonable conversation, understands emotions well, has an almost adult-like conversational style. She knows lots of facts, has appropriate interests, plenty of friends, shows empathy appropriately and can read fine for her age (although misreads very basic words a lot). Now she's struggling to keep afloat at school though, is unable to take anything new on. Has found it impossible to learn to tell the time, her peers whom she could keep up with are now far and away ahead of her in every area.

She's also got some issues with balance (can't ride a bike despite having loads of help and support with this), always tripping up, spills food down herself and on the floor every meal time. She also has a lot of nightmares, can be overly excitable, has anxiety about sleep and bed time and is extremely "touchy", as in she likes touching people a lot, climbs on me, wants to lie on top of me a lot.

I've always wondered what might be the issue but as she was doing fine in general (the teachers just brush it off, they haven't seen the sharp decline that I have) I tried not to worry and after her diagnosis (4 months ago) I thought some of it (concentration, sleep etc) might get better but with the new school year its suddenly become apparent that she's still really struggling in certain areas. Any thoughts? Am I over thinking it? Is DD just not as bright as I once thought? The teachers don't have time to worry about average children who are just about managing to keep up and I can't get to see her paediatric specialist until December

Just a thought, have you looked into Sensory Processing Issues, as all of the things you have mentioned would fall into that category. Your child can be assessed for it and Occupational Therapy can help with it if needed X It is quite a common thing but some children don't get it picked up till later on X

Try not to worry too much, although that's easier said than done. No one can give you a diagnosis on here and I am in no way medically qualified. I did think that some of the things you are concerned about sound like Dyspraxia or developmental co-ordination disorder www.nhs.uk/conditions/developmental-coordination-disorder-dyspraxia/symptoms/
Maybe try taking her to the GP? I hope you get some answers soon

The Inspired Treehouse has a great website and is on Facebook and has a lot of information on it. Good luck x

I have to say reading that, my first thought was something along the lines of dyspraxia. It may be worth raising your concerns with your GP

Assuming coeliac
Four months on gluten free may not be enough yet for complete turnaround.
Symptoms could be coeliac related
Be very careful about cross contamination. Dd s coeliac antibodies took months to go to zero.
December would be good time to review as more time for diet in place new school year bedded in etc.

Depending on where you are, you can self refer to occupational therapy, I’d be concerned too.

Sounds like it could be dyspraxia - my daughter presented with very similar symptoms and was diagnosed aged 8.

I thought dyspraxia or sensory processing disorder too. Ask to speak to the senco at school and express your concerns. They might try to reassure you that everything is fine but should listen and offer advice. To be honest a paediatric appointment in December isn't too bad. We've been waiting nearly a year! If she's working at average level then there's no massive hurry unless her confidence is dropping. Have a look at the dyspraxia foundation website.

Thank you everyone. I guess these are the niggling thoughts I've had for a while. But after spending 6 months taking her back and forth to get her coeliac diagnosis I'm reluctant to put her in front of too many more professionals at the moment. I don't want her to think there's something wrong with her. I think I need to manage my own frustration about her limited capabilities a bit better for now and at parents eve I might ask her new teacher to arrange a senco appointment. I also need to persuade her dad (ex dp) that there's something worth looking into...

The other thing you can do op, is try some of the strategies to help. For listening, try doing a little visual timetable of what needs done and collected so that it’s not you nagging. If she seems exhausted and overloaded, ask if noise bothers her and consider noise cancelling headphones. The wait to see people can be so long anyway you can research online and see what helps.

I don't want her to think there's something wrong with her

Work on a lot of conversations of different is good, different is not wrong, there are lots of different ways to do things, people do things in different ways but achieve good results.

Have you had her eyesight checked? If she can't see properly that would explain the drop in school work and possibly even the bike riding and other distance judging tasks.

in reality, if you went to the GP on your own now and got a referral done for her, it'd be months before you saw anyone. I wouldn't go via the school teacher necessarily, I've had poor results with that and they aren't experts in SEN typically.

It's not about something being wrong, I assume your DD feels bad when you tell her the same thing 4 times and she's ignored you, putting in place better systems to help her organise herself will help you both be more loving to each other, that's what we found anyway.

Has she had her B12 levels checked? I had similar problems processing new information/making anything sink in. With long term low levels there are neurological symptoms. Another is deteriorating eyesight, which meant that I was getting a new prescription every 4-6 months until the cause was found.

oh yes, we were told to check DD's sight too, first, good call.

It takes a very long time to clear the body of Coeliac probably a couple of years rather than just a few months.

The other thing you can do op, is try some of the strategies to help.

Agree with this - you don't need a diagnosis to try some ASD/dispraxia/sensory processing strategies. It might may no difference at all, but if it does, then it gives you a clue as to the possible avenues you want to be exploring, plus makes your (and her) life easier.

Yes eyesight checked recently. Thanks for the advice, I'll look into some strategies to help with school work and at home.

Presumably you have coeliac clinic follow up and repeat bloods soon.
Ask them to check vitamin etc levels
Dont wait for parents eve you can ask for a meeting before..ask their views.
presumably you told school about coeliac already and they taking care over cross contamination?

And take some short 3 minute videos of her doing different things. Now and every month.
This will help you record progress or not.

If you see actual continued regression by December then flag it with paed.

Or it may reassure you the gf diet is helping and she getting back on track. You should not underestimate impact of few years undiagnosed coeliac

Meanwhile look into dyspraxia strategies read "the out of synch child" and be gentle on your dd

If your DD has coeliac, then this can affect the absorption of b12. It's a very simple blood test and would explain most/all symptoms. May be worth asking the GP about this. And once treated the symptoms should be able to be reversed, but it does need to be treated!