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Dietry advice and suspected PDA

(24 Posts)
decafonly Mon 09-Sep-13 23:16:47

We strongly suspect my 4yr old ds has PDA. We have started out down the camhs route but have been warned that this will be a lengthy and difficult process.

Ds has now started school and what I would describe as PDA behaviour has increased significantly sad

I feel like we should be dong everything we can now and not waiting around for a diagnosis as it feels like he is literally slipping away.

I would like to look more closely at his diet but I am feeling overwhelmed trying to research this online. I have come across GAPs, GFCF and various suggested supplements. Can anyone suggest a good starting point? Is there any recommended professionals that people have seen about this sort of thing? Am I barking up the wrong tree completely?!

Sorry if these are silly questions but we have had a particular bad couple of days, I'm suffering from information overload and the gp etc do not recognise PDA let alone want to discuss options with us

ouryve Tue 10-Sep-13 10:27:52

If he does have PDA, then the demands on him from starting school will have gone through the roof. Lining up. Washing hands when other kids have to wash hands. Carpet time. Lots of demands dictated to him by circumstances.

Has his teacher noted any concerns about his behaviour in school? Is he struggling with or resisting routines, or falling into step with everyone else?

greener2 Tue 10-Sep-13 10:35:17

Message withdrawn at poster's request.

decafonly Tue 10-Sep-13 12:51:26

ouryve The behaviour we think ties in with the PDA description is at its worst in the school setting. I think he is far more relaxed at home - not so many social demands on him, less noise and fewer people. The teacher is also on the receiving end of him lashing out at the moment sad I feel awful but we are talking to each other every day and she is very supportive.

I think with PDA children it can happen either way greener2 some will adapt in school to stay under the radar, so if they are quiet in school then less is asked and expected of them but the explosive behaviours come out at home or its the other way round like we are seeing with my ds.

He can share and seems very sociable with other children until it doesn't go his way. But this could mean literally anything - even the smallest perceived loss of control can trigger. And what sets him off one day might not the next.

I am going to speak to the school nurse and see if they can refer to anyone for dietary advice. My gp was a waste of time and thoroughly unsupportive so I cannot see them referring him as I quote 'he is not ill' hmm

I tried him with some omega 3 liquid at the start of the summer and I think there was some improvement - less on edge in general but DH thinks that might be due to him finishing nursery. I am going to start again with it smile

I will let you know how we get on smile

ouryve Tue 10-Sep-13 13:12:11

What strategies is his CT using to help him deal with transitions and routines?

decafonly Tue 10-Sep-13 13:32:33

there is no real strategy in place at the moment due to him only just starting. They are trying to observe and get to know him which is fair enough but we are so worried about him. Where possible we have discussed avoiding direct commands, treating requests as something fun, asking 'is there anyone that can help me....' and giving warnings and time limits for when certain tasks have to end and something else has to start etc. And I really appreciate how hard this must be with a class full of reception children.

The hardest part is that at times I do not recognise this child as my ds and this only started in the last 6 months. It is heartbreaking to see him tie himself in knots - one minute he is enjoying something and the next he is rubbish at it and can't do it. To witness this total jekyll and hyde of emotions is breath taking and is way beyond the realms of four year old boy behaviour. He recently told me he didnt want to live in his head anymore because its just wrong and so he would like to live in someone elses that isn't naughty and can do things right etc sad

decafonly Tue 10-Sep-13 13:34:30

sorry it's all spilling out today. Funny thing is he is quite a bit more relaxed this afternoon but that in itself is making me feel sad as I wish I knew what I can do to help him feel like this all the time iyswim?

popgoestheweezel Wed 11-Sep-13 09:14:01

My ds has a dx of PDA as well as sensory processing difficulties and a working dx of ADHD. We have found that Behaviour Balance DMG has a very good impact on his behaviour and also used the Brain Food Plan to good effect. The basics on that are cutting out sugar and refined carbs as much as poss and increasing protein- good advice for any child really as no one needs the amount of sugar in the typical diet.The supplements recommended in the Brain Food Plan are igneus Vegepa Omega 3 (if you look on the tinsley house website there is a discount code) and floradix saludynam and kinder vital. They def make a difference. We tried cutting out dairy but that had no effect so haven't kept up with that.
However, a few weeks ago we tried cranial osteopathy and the results of that have been nothing short of miraculous. He has had just two sessions now but we cannot get over the change in him it truly is amazing.

decafonly Wed 11-Sep-13 13:52:36

Thank you pop smile

I have been trawling mn and the net and have come across the urine test done by the place in Sunderland so I am going to do that and see if there is any indication of a problem with dairy or gluten.

I'm having a look at the cranial osteopath options locally now as I am sure someone else at work mentioned it as well.

popgoestheweezel Wed 11-Sep-13 18:50:23

I rang the Osteopathic Clinic for Children in London they gave me a local recommendation.

popgoestheweezel Wed 11-Sep-13 18:50:43 sorry

greener2 Wed 11-Sep-13 19:38:44

Message withdrawn at poster's request.

blueShark Wed 11-Sep-13 20:43:40

DS was one of the most complicate PDA an ABA professional had seen in her career. He has so many brilliant skills and independance age appropriate but demand avoidance and non compliance as a result is his biggest enemy.

We have tried variou diets which calmed him a bit as well as supplements but i have to admit ABA was the best things ever.

My recommendations is whilst you trying to heal from teh inside but some good behavior and educational strategies in place.

DS is an angel at home but devil in school (so far) so all his learning takes place at home.

greener2 Wed 11-Sep-13 21:36:44

Message withdrawn at poster's request.

blueShark Wed 11-Sep-13 21:57:13

The tinsley house diet is an excellent place to start, I do gluten free since ds is gluten intolerant as per the allergy and food intolerance test but even without the test now that he has been on the diet for nearly 2 years, 24h food with gluten turns him into a different person uncomfortable under his skin.
blood tests and organic acid urine test will give you a good guidelines where you have to adjust the diet and supplements you need

blueShark Wed 11-Sep-13 21:58:36

Also most food is adviceble to be organic, colouring free and additives free and preferable cooked from scratch richer in proteins and less carbs

decafonly Wed 11-Sep-13 22:54:28

greener2 this is the urine test I know there is absolutely no point me going to my gp to ask for any kind of test or referral to a dietician etc as I have been told quite bluntly that he is not ill hmm

Thank you to everyone that has posted. Ds had a great morning at school today but it didn't last. We went to visit family this afternoon and it was like he just couldn't keep 'himself' contained all day. His emotions just seemed to start flip flopping - he says no then yes straight away to a question. Then the outbursts and hitting started and this was in response to someone praising him for good behaviour! He was also difficult at bed time tonight.

But he gave me the most fantastic and unprompted cuddle today, just to keep me on my toes and guessing what's coming next!

popgoestheweezel Wed 11-Sep-13 23:03:35

If you want to do the tinsley house thing then follow the brain food plan first as that covers the basics. We tried it but ds could not do the computer based exercises (it just wasn't possible for him to comply because of the PDA) but we did feel that that first bit was very helpful.

popgoestheweezel Wed 11-Sep-13 23:04:25

Sorry, not such a good day for you today decaf.

Ifcatshadthumbs Wed 11-Sep-13 23:05:08

We saw a dietician privately and tbh it was no real help. I have read the GAPS diet and although I thought it was extremely interesting it was way too restrictive. So I have adopted some of the principles of it but basically DS is GF, with as little processed food as possible, no squash just milk or water (occasionally fruit juice), avoid junk food (occasionally fall off the wagon!).

I've also read the Tinsley house guys book (Brain Food Plan) and again have adopted some of his principles (high protein, easy on the carbs)

Supplement wise I give Vegepa (for omega), magnesium, zinc and a general multi vitamin.

I can't say if any one of these methods has made all the difference but I do believe it had helped alongside all the other things we do such as SALT etc and the support he gets at school. I will say in the last year since we've focused on diet etc he has come a long, long way and we do see a difference in his behaviour when his diet slips as it did a bit during the holidays.

I wish we were disciplined enough to do GAPS but I know we would never manage it!

decafonly Wed 11-Sep-13 23:10:32

Thank you pop.

This may be a silly question but how did you approach diet changes as a family? Did you all incorporate the changes ie going gluten or dairy free?

I am quite happy to do it with ds as I know how ill a high carb diet makes me feel but I can see dh being horrified at the lack of bread grin and I have an older child who is a very fussy eater. While I can see how these changes would benefit us all I'm just wondering if trying to make it a whole family change of diet will make things more difficult?

decafonly Thu 12-Sep-13 15:20:23

I have just put my glasses on while looking at the Tinsley house website and realised it is on our doorstep! Before we go off trying anything on our own we have decided to bite the bullet and get an opinion here first.

Thanks again to everyone that has posted smile

blueShark Thu 12-Sep-13 15:45:10

in our household only DC1 is GF, although we als eat GF as its a healthier option for all smile

I have also adopted many bits from the GAPS, I juice every day so we all get lots of fresh fruit and veg, do the chicken stews and eat the bone marrrow, water is our main drink (well wine and beer for mum and dad when kids asleep) and we eat protein rich diet with a bit of carbs.

When starting GF I bought GF bread and pasta and immediately replaced it for DC1, he hasnt complained ever. Of course we slip the diet at birthday parties and a bit of gluten doesnt matter, but this summer when I had run out of supplies I took aborad and he ate gluten for 3 days he was not happy and we were not happy!

Lookslikerain Thu 12-Sep-13 22:06:31

decafonly I saw this thread the other day but didn't have time to post. Pop over to the tinsley house support thread if you've got any questions. We are all following the programme.

Oh, and the cheapest way I've found of buying the omega and vitamin supplements is though amazon subscribe and save. Added bonus that you don't need to remember to order more! Hth.

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