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Panic! I think DS is in the midst of an autisic regression

(91 Posts)
sadminster Mon 13-Jul-09 09:37:45

DS is 2.9 being assessed for a severe language delay, has a number of 'autistic traits' but he seems to be getting worse very quickly.

A month ago I have video of him grinning, turning to us and pointing out an aeroplane flying over, dancing, laughing, patting his baby sister (saying 'gentle') & laughing when she burped. Now he is withdrawn, more aggressive, looks ill & tired, everything as to be coaxed out of him, only language is labelling. He suddenly has eczema and horrible stinking loose stools. His concentration is definitely worse.

Anyone got any idea what I should do?

saintlydamemrsturnip Mon 13-Jul-09 09:45:31

I would look at doing something about his stools tbh. The most obvious (and easiest) thing to do would be to experiment with going gluten and/or casein free (in fact in our case we're not casein free, but switching to goats milk made a huge difference, and in ds3's case seemed to stop the beginning of a slide).

The autism research unit in Sunderland can run a test which will give some indication as to whether a gluten and or casein free diet is likely to help.

staryeyed Mon 13-Jul-09 09:51:21

I would go to a doctor and check if he has an underlying illness or allergy/intolerance. Has there been any major changes or traumas recently these can sometimes make children regress?

Does he have any sort of intervention or input? Have you been told about what is available in your area for Speech delay? Have you thought about dietary intervention- ie cutting out gluten and dairy?- some parents find it helps. You may also want to consider supplementing/ biomedical intervention. If you do decide to do either of these things I would say get some professional advice about making sure its done safely.

DS is 4 and has ASD I find he sometimes goes through phases of regressing and sometimes makes huge leaps in progress.

cyberseraphim Mon 13-Jul-09 09:55:51

It's a very complex area - I have videos of DS1 looking and behaving in a much more NT way than he did at a later age. coming up to 3 is a very difficult age too as the gap can seem enormous with NT peers who are speeding ahead (at least that's how it seemed to me at the time). We were standing still whilst others were moving forward rapidly. However now at 5, we don't make comparisons with peers but he has made huge progress on his own terms. If he is ill that will make things seem a lot worse too. Try to note down (but not too obsessively) what his behaviour/communication is like.

TotalChaos Mon 13-Jul-09 11:20:22

agree with the other ladies. would first off start with GP, and would also cut back on cow's milk. DS's stools used to be dreadful - he has a weird milk addiction/intolerance thing going on - up to 4 pints a day at it's worst. When DS had a severe language delay, he was far more "with it" at just before 2 than he was at 3 - I have always wondered whether the difficulty with language comprehension may have made him shut himself off......

reducedfatkettlechip Mon 13-Jul-09 20:34:30

Oh this has brought back memories of ds at the same age. I totally understand how terrifying it can be. I would agree that diet is the first thing to look at, especially gluten, casein, aspartame and MSG. Try giving EFA fish oil supplements and a multi vitamin if you aren't already.

In his case, we discovered that aspartame (in his sugar free squash) was having a major effect on him - I think it had built up over time and once removed from his diet, he transformed within weeks. Now we have pretty normal eye contact, pointing and lots of good communication even though his speech is still very behind.

Keep some notes of what's happening but try and stay calm, I remember being so scared and stressed I could hardly think straight but he is so much better a year on, it's hard to remember the horrible weeks where he had constant tantrus and wouldn't make eye contact with us at all.

jabberwocky Mon 13-Jul-09 20:44:36

Check into yeast as well. A candida infection could be part of what's going on and the sooner you clear his gut the better things will be. I would also start giving cod liver oil for vitamin A&D, mega Omega-3's and probiotics.

So sorry this is happening

sadminster Mon 13-Jul-09 21:39:14

we've made appointment with GP - his ears are bright red & he doesn't like them being touched, has had awful diarrhoea for 2 weeks & eczema has flared up.

We had already sent off for the Sunderland stuff but I'm starting him on caesin free tomorrow (I was dairy free until my teens because of eczema) & will be reducing then cutting out gluten.

He's only having A/C/D vitamin drops atm but he's happily taking them & omega 3 oil (don't think it's a very high quality on though) - I've seen people recommend Eskimo, is it very 'fishy'?

He doesn't have much dairy - mainly drinks apple juice (half a small carton a day) or water, he's still breastfeeding a lot ---> I'm already dairy free but not gluten free as yet.

jabberwocky what do you do about yeast (& how can you tell if it is a problem)?

saintlydamemrsturnip Mon 13-Jul-09 21:49:42

Red ears common in this sort of scenario.

Your GP may not be a lot of use - this is usually a bit beyond them.

Agree about getting rid of aspartame. And I'd watch out for MSG too.

Yeast is hard to deal with. Cut out sugar - we used saccromyces which is a non colonising yeast to get rid of candida and to my surprise it worked very well. It actually sorted ds1's gut problems - I wasn't expecting it too.

Have a look at treating autism as well. Their forum is helpful.

jg3kids Mon 13-Jul-09 21:51:08

i agree with all of the above.
There's so much you could try but it's knowing where to start. IMHO I would read 'gut and psychology syndrome' by natasha campbell macbride if I were you. Then I'd join the yahoo discussion group about biomed called ABE (find them at www. autismbiomedicaleurope.com no spaces)

Good luck
x

saintlydamemrsturnip Mon 13-Jul-09 22:01:15

oh yes gut and psychology syndrome a very good book. (ABE is the treating autism forum - jg has just called it by its correct name so don't spend hours looking for the one I mentioned).

jabberwocky Mon 13-Jul-09 22:12:11

Yes, thankfully the gut/brain/immune triad is starting to be recognized as a real problem.

Yeast, yes very difficult. I would start with saintlydame's advice. there is a medication,the name escapes me, but since most doctors won't recognize that it's an issue it's hard to get a prescription for it iykwim.

What are everyone's thoughts on kicking up the vitamin C as well?

lingle Mon 13-Jul-09 22:53:07

absolutely no useful advice but have been thinking of you.

saintlydamemrsturnip Tue 14-Jul-09 09:43:03

I was trying to remember the medication name as well. There are two - both kill candida. But can I remember the name? No - mind blank.

jg3kids Tue 14-Jul-09 13:38:32

diflucan is one and nystatin is another?

saintlydamemrsturnip Tue 14-Jul-09 14:44:25

that's it! nystatin is usually used.

jabberwocky Tue 14-Jul-09 15:09:08

That's it! I'm hoping to get ds1 on one of them whenever we finally get our referral sorted to the GI specialist.

How are things going sadminster?

sadminster Wed 15-Jul-09 18:06:31

Thanks everyone - not brilliant tbh.

We've gone cold turkey on GFCF - though tbh I'm not sure I'm doing it right (I have a cereal that is gluten free & vegan (no milk products on ingredients) but doesn't say caesin free - so ds shouldn't have it?). No major changes though - behaviour the same, nappies just as awful. He looks dreadful

He's taking the oil & vitamins too - I'm reluctant to add anything else at the moment because his diet is so limited & if something tastes odd to him he'll never have another go at it.

God it is so hard - we've had a pretty crappy time, yesterday was the anniversary of the death/birth of our other little boy - I don't feel equipped to deal with this too but I guess I just have to get on with it.

I feel angry & I lost it (well pushed him away sharply) today - he has been horrible - and I felt like a total shit afterwards. Combine it with dd2 who rarely sleeps - and when she does ds wakes her up by shrieking.

Spent 2 hours with HV today (she's lovely), sorting out all the referrals - portage, CDC, SALT, seeing GP on Monday. We're also waiting for dates for a BIBIC assessment. Our SALT is intimating that getting him talking isn't going to be easy because of his auditory inattention. BIBIC have recommended a sound therapy (? like AIT) that I've never heard of.

My family say I'm neglecting the two dds & life doesn't revolve around ds ... pile on the guilt.

DH works a really long day & I don't get to talk to him even, it's hard to get on the computer. My friends all have older (brilliant, perfect) kids & I am so isolated. I find it incredibly difficult being on my own with him all day (more guilt). We've arranged for him to have one day a week with a CM (he has a great time there) for the sake of my sanity.

I've been doing forced choices games with him as per salt recommendation & all it does is make him really angry with me - ditto music games & action songs. AAAARRRRGGGGHHHH.

lou031205 Wed 15-Jul-09 18:12:51

sadminster <<hug>> I've heard that sometimes it gets worse before it gets better.

You are not neglecting your two DDs. If you can make things easier for DS, then life will be easier for your DDs. Family can find it the hardest to accept things.

jabberwocky Wed 15-Jul-09 19:07:39

sadminster, this is such a difficult road but you need to really congratulate yourself for being so pro-active so soon. This will be invaluable to your little ds. It can take some time to see results from the diet. Ds1 was unusual in that he reacted positively to casein-free in a week but it usually takes a little longer.

I break open pro-biotic capsules and add the powder to ds1's juice. He knows it's in there now (he;s almost 6) but it doesn't change the taste. That can really help the gut since you can't give him yogurt.

Keep posting. There's always someone hear to talk, lend support or just listen to a rant. It can be difficult and heartbreaking at times and we have all had days where we lost it and felt that we couldn't cope but then you find the ability to take a deep breath and some inner strength appears and you are able to go on.

jabberwocky Wed 15-Jul-09 19:08:54

Oh, I had meant to add on a practical note, be careful about substituting too much rice products (ex. rice milk) in case he is sensitive to carbohydrates.

saintlydamemrsturnip Wed 15-Jul-09 22:11:11

sadminster I agree with jabberwocky. It can get worse before it gets better, but ime if you are going to see a change it will come quickly. (And you have all the signs going on that make your ds a good candidate for the diet).

Your family do not sound helpful. Often they aren't. Do you know anyone else in the same situation locally? They can be worth their weight in gold. Your dd's will be fine. I have just had ds1's siblings school reports - both have had their lives dominated by severe autism and both are doing well academically - but also (and this is the bit I was really pleased with) doing well socially. DS2 is apparently a role model for his peers - reliable and with a quircky sense of humour. I suspect some of that comes from having ds1 as a brother. At the moment ds needs the world (or at least you) to revolve around him, which is fine.

"He's taking the oil & vitamins too - I'm reluctant to add anything else at the moment because his diet is so limited & if something tastes odd to him he'll never have another go at it."

Agree with this, you can lose foods quickly that way. But it's also good not to change too many things at once or you lose track of what is and isn't working.

Oh have you seen Derrick MacFabe's video. His work on probiotics/gut bacteria is really interesting - he's also very approachable and a really lovely guy - very helpful. For us getting the probiotics right really helped.

good luck, keep posting, and I'm so sorry to hear about your other little boy It sounds as if you have really been through the mill.

Oh I;ve just reread your message and seen you don't have anyone nearby. Where are you (roughly)? Maybe we can find you someone to hook up with. I really need to start a SN friendship noticeboard don't I.....

TotalChaos Wed 15-Jul-09 22:20:26

Sorry to hear you lost your son.

Sadminster, I'm not as experienced as the other ladies, but certainly what I've read suggests with gf/cf things get worse (I think it's like withdrawal symptoms) before they get better. Sorry your family are being unhelpful, families can tend to be in denial and imply you are fussing over nothing. Improving your little boy's communication is very important, it's unfair that they are moaning about you spending too much time focusing on him.

Sometimes it helps spending time with adults without children/with grown up children - my monthly wimmin's book group was an absolute lifeline to me at times, no awful proud parent chit-chat.

saintlydamemrsturnip Wed 15-Jul-09 22:55:56

Oh I should add I could fill a book with some family & (ex) friend comments grin. Everyone has an opinion in the early days.

jabberwocky Thu 16-Jul-09 02:49:27

sadminster, I did not mean to neglect adding my deepest sympathy towards the loss of your son

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