Autism and co-morbids

[Libbeth]

Looking to hear from parents of children with numerous immune system problems ontop of their asd, ESPECIALLY severe excema, asthma and bowel problems.

Also anyone whos child sufers from frequent infections, and has suffered regression due to viral infection, ie: chicken pox/herpes virus (varcinella).

 

My son is 4 and suffers from numerous problems, all of the above, and has ASD.

 

He recently contracted a secondary infection to his already infected excema which turned out to be the herpes virus, and a very severe case coverig his whole body in open sores and blisters. He has had chicken pox twice as a baby, both times pretty bad attacks (he got the blisters even under his eyelids), but didnt seem to develop an immunity to the virus naturally. Hence this occuring.

 

He was admitted to hospital for several days and given 4 lots of antibiotics via IV.On the second day I noticed a dramatic change in his personality and he had to be sedated due to violent temper tantrums and the fact he was ripping at his skin far worse than usual. Since he came out he has regressed to the stage he was at at 18 months, with a rare window of his "4 year old personality" coming through, this was after he had improved so much and was talking and interacting much better.

He is now impossible to reason with, screams and cries constantly, seems confused and basically just wild.

 

Brandon had a severe reaction to his infant innoculations, (DPT's) and afterwards suffered from convulsions, developed excema which is now horrific, asthma, bowel problems and constant feverish spells often leading to seizures.

 

he was diagnoses as autistic last year, and although improved very well with speech and social development, he has now slid back to worse than ever.

 

I know something happened when he was in hospital, but I have no idea why and would really appreciate any opinions, especially from those whose children have a similar history.

 

Thanks all,

 

Libs

[Zemanski]

I don't know a lot about this but Dot suffered immediate reaction to an antibiotic given for whooping cough at 14 months

 

She was coping fine with the whooping cough but the doctor insisted she had a secondary infection, I disagreed and tried to hold out but finally agreed under pressure (antibiotics are not good for children and they do not work on viral infections like whooping cough or chicken pox)

 

within 2 hours she was screaming and had terrible diarrhea - I rang the doctor (insisted on talking to one I trusted) who confirmed it was a reaction and I stopped the antibiotic.

 

She got over the whooping cough fine but had severe diarrhea for over a year and has had bowel problems ever since (has just been referred again). She stopped eating and went back on the breast alone; ended up seeing all sorts of consultants and dieticians, on failure to thrive list as she lost so much weight and stopped growing completely .....

 

fortunately it didn't trigger any other response - she is severely dyslexic but otherwise NT.

 

one thing that did help stop the diarrhea was yacult - she loved it only as long as she needed it.

 

Zemanski

[Libbeth]

Thats exactly it - Brandon suffered awful bowel problems after the antibiotics, and when I asked why they were treating a herpes infection with anti b's they said it was because it was infected.

 

He also LIVES on them actimel drinks, loves em, but they dont seem to help much.

 

I dont think these kids can handle antibiotics, jeez they have to build up their own antibodies, they certainly need to be free to do that.

 

Thing is they have you on the guilt trip, you see your child ill and struggling and often agree to anything youre told will help. Its a horrible dilemma, and not a nice position to be put in at all.

[oracle]

It took me a while to realise that after antibiotics Matthew would go down with Cyclical Vomiting Syndrome and was so severe that we usually ended up in A&E with him to be rehydrated. Now I give him nothing unless I have to. Even Calpol leaves it's mark on him. I will not have any medicines with artificial sweetners as they make him ill to.

 

Matthew also has excema and it gets worse when he is feeling low. My eldest has asthma and also both have bowel problems.

 

Every childhood illness that Matthew and David have ever had has lasted far longer than with other children. David would always end off in hospital with a throat infection, which alway went spetic. He also had a collapsed lung aged 6 and has had various other problems. Matthew ended up in A&E with Chicken Pox as it invaded his nasal passages which still bleed to this day. He was very ill with slapped cheek syndrome but other kids in his class were just a bit off colour.

 

I often wonder when the experts will catch on to this?

 

Carole

[call me jaded]

Libbeth I can so relate to what you have written. My son managed to get chickenpox at three months. My GP was astonished, a baby normally carries the mother's immunity for six months or so.

 

Constant colds, ear infections which never cleared up. Diarrhea always. When we got a new school nurse she told me to keep him off until he'd passed normal BM for a couple of days. She was surprised when I said he'd never be at school if we waited for that to happen. The vomiting that went in cycles (though we never had it diagnosed as such). Failure to thrive - he dropped off the bottom of the chart. The violence was the last straw.

 

The good news is you can do something about this. It sounds like the ABs have allowed the wrong kind of bacteria to grow in the GI tract - candida albicans or clostridia are two of the culprits. This is the cause of the current agression, IMHO. It's a common problem which we only had to deal with once with a course of probiotics.

 

The thing that really helped is the gluten free, casein free diet. Look up the Sunderland Protocol and browse the diet threads here. There is a very active forum called GFCFKids at yahoo groups and it is really worth lurking there. You'll pick up so much knowledge.

 

We have been doing this diet for 3 years + and this last year my son has had only two days off school sick. Beautifully formed BMs (these things matter), no aggression, dimples on his bum, no longer withdrawn, regulates his body temperature well, sleeps well. So many more positives, can't think of them all.

 

It does seem pretty hard to do at first, but it quickly becomes second nature. I save the hassle of reading lists of ingredients by buying organic and cooking most things from scratch. Have never found a reasonable bread substitute so don't do much of that.

 

Of course he didn't eat anything for three whole days when we started (and I wasn't sure who was going to crack first) and had a prolonged withdrawal period (three months) but we really haven't looked back. The diet, fish oils, vitamin and mineral supplements have all contributed.

 

Best of all he is back with us, part of our family.

[pim]

Hi,

can I ask you a question, call me jaded.

 

I've started the CF part of the diet but have not gone completely GF. I'm doing that slowly. But what sort of withdrawal symptons did your ds have? I started 2 months ago. My ds in the last week has become so hyperactive. His concentration has gone and he has become very aggressive. I feel like stopping it all. I started the diet ds had bad diarrohea, which when i think about it only started in the last 6 months. But it drove me crazy as he didn't manage to get to the toilet on time.

 

I'd appreciate any advice.

 

pim

[call me jaded]

I think you will probably get this aggression and hyperactivity as long as there is any gluten at all in the diet. That's certainly the way it is with my son. I would recommend that you try to do this as soon as possible.

 

Withdrawal for us was prolonged: very lethargic, irritable and difficult to engage. For a while it felt we were going backwards and about 6 weeks in I was ready to give up. I re-read everything and found Lisa Lewis and the Sunderland protocol both very useful at this stage in confirming we were doing the right thing.

 

This is no quick fix, but does pay dividends in the end.

[pim]

thanks for your message.

 

I'm still in two minds. Ds was never hyperactive or this aggressive before so I feel bad playing with his food. I'm going to try and see a dietician to help me through this.

 

I wonder as in ds case I think his ASD was hereditary, whether the diet will have any effect.

 

 

pim

[call me jaded]

Yes, you are withdrawing the source of opioids, so he's not going to be happy. It's like anything addictive. The fact that you are getting a reaction is encouraging, although you may not feel it right now. I've read many parents' stories. A week to 10 days totally GFCF is almost always enough to see whether it's going to work for you. So I'd say try it for two weeks.

 

The autism/gastro link is pretty well established right across the spectrum. My son was certainly autistic from birth, not a regressive case at all (though I don't think vaccination helped him).

[Infojunkie]

If it's any help to those of you considering the GFCF diet I have documented my experience and views here.

 

I was a complete sceptic on the subject of the diet 18 months ago.

 

For those who don't know me, I am an adult with ASD and as anti-cure as they come. I'm still anti-cure, but I have had severe bowel problems and immune system problems my whole life so tried the diet out of desperation. (btw from my history my ASD is probably genetic and my son is on the spectrum too).

 

I went GFCF almost overnight about 15 months ago. To my complete amazement I got really, really ill within a few days of starting the diet! Unbelievable diarrohea, mood swings, rashes, cravings for gluten and milk etc. I stuck with it though. I took me about 6 months to really start getting the diet right as I had to go a long way beyond GFCF (this may be because I am older - before I panic all you parents ). I am now GFCF, Aspartame free, MSG free, DGA free, egg free, corn free, low sals (i.e. no fruit except pears and careful with spices and a few veg such as peppers), rapeseed oil free and tomato free (unless I have forgotten anything). I do an awful lot of cooking, it is quite expensive and it is very hard work.

 

BUT

I have a normally functioning stomach for the first time in my life AND I hardly catch any bugs. When I do I shake them off easily without the ear infections, chest infections and every other kind of infections I had before. Much as I hate to admit it, I am also better organised and understand some social stuff a LITTLE bit better than before.

 

It may not be right for everyone, but I would recommend trying it. Ignore the (many many) people, websites and groups who will try to get you to buy in to all kinds of fanciful philosophies and dodgy quasi-scientific theories. The Sunderland Protocol is a reputable place to start, after that "Hear all, trust nothing" (Rule 190 of the Ferengi Rules of Acquisition - Star trek). I would suggest trusting your instincts and your child as to what is working. I would also suggest concentrating on improving bowel functioning and immune system health since these are much easier to assess objectively (and then any behavioural improvements are an added bonus). But don't expect overnight miracles and it certainly isn't a cure.

 

I am about to try my son who is 6 (with his consent and co-operation) on the straightforward GFCF version. We'll see how it goes.