Connective Tissue Disease

[smallworld]

Hi All,

My asd son, aged 5 has today been finally referred to a specialist after I showed our GP the huge scabs (sorry!) he has developed on his arms on holiday. He also had terrible skin chafing where any clothing touched his body in the sea. We thought the scabs may have begun as mozzie bites but he didn't itch. Not unusual I know, he's had chicken pox really badly in March and that didn't bother him much either. He has been left with lots of scars (unusual according to GP) and this combined with his double-jointedness and some spheroids/molluscoid pseudo tumours (not sure which) has meant that I convinced GP to refer to a rheumatologist rather than skin doc.

Ages ago someone suggested to me that there may be a link between this sort of autoimmune disorder and autism. Is this right ?

Doc said that even if he has this condition they couldn't do anything, but wouldn't you rather know ?

 

wac

[smallworld]

Hi all,

I'm getting the impression that no-one has experience of this in connection with asd. Am trying to get genned up before we see this specialist as I'm told he can be very rude/dismissive/ignorant !!

Am really looking forward to meeting him !

 

wac

[CarerQuie]

I've not heard of this particular link but that doesn't mean it doesn't exist.I'll ask around.Sorry I can't be more helpful.xx

[smallworld]

I'd appreciate that thanks, CarerQuie.

You know what'll happen, we'll finally get an appt. and all signs of this will have miraculously disappeared. Leaving me looking like neurotic mother as per. Ah well, nothing new there !

 

wac

[call me jaded]

My son has arthritic joints on hands and feet and I'm pretty sure it's connected to the immune system dysfunction he was suffering. We have made great progress by taking gluten and casein out of the diet and stuffing him with anti-oxidants (cranberry juice for eg). He is now hardly ever ill - he didn't get a single cold over the winter. When he was small it was one cold after the other and never really recovering from any of them, followed by bouts of vomiting, now also gone.

 

The diet's not really that hard once you have found 10 or so basic dishes, although the first week's shop was a nightmare and my boy took a long time to show real benefit (3 months for gluten to come out of his system). We've been doing it 3 years.

[big mamma]

Hi Wac,

 

When my daughter's skin rash appears I always take pictures of it so I can show the doctors because

 

a) she won't let anyone examine her and

 

you can bet your bottom dollar her skin will be like porcelain on the day of her appointment !

 

Also have your pictures developed in different stores otherwise the assistants think you've got some strange obssession with spotty body parts !!

Edited June 10, 2005 by big mamma

[Kathryn]

Hi Waccoe,

 

I've read somewhere too about possible connection between lax joints and ASD. My daughter is about to have (yet another!) blood test - this time for rheumatoid arthritis. She suffers painful joints all the time.

 

A friend of mine has hypermobility syndrome (also known as ehlers - danlos syndrome and fragile collagen syndrome): she is in constant pain and almost crippled, but it has less severe manifestations too: like double jointedness e.g. you can bend your fingers back the wrong way, (which my daughter can do), and contort your limbs easily (many ballet dancers and acrobats have it, apparently). My daughter is convinced she has this - I suppose there could be an outside possibility.

 

Not sure if this has anything to do with your original post, but it's an interesting link which I'm looking into.

 

I hope you find the cause of your son's condition, good luck with the specialist.

 

K

[smallworld]

Hi all,

thanks for all your very useful replies (and thanks Valiant for the pm, have been busy reading pubmed)

Only today I caught a glimpse of his arm (he's never still !) and thought about taking a pic to show the specialist. I wish I'd done this last year when he had inexplicable (to GP) rash that was never investigated.

I have to admit I keep looking into GF/CF diet and shying away. Am thinking I can't avoid tackling this for much longer, I can see how it makes sense having read a lot around this subject.

But Kathryn, your post rings all the bells. I am still v. flexible despite being 40+ ,totally unfit, short and round ! I also had big problems with skin healing as a kid and still have problem skin now ( I think we are on same planet here !) Despite this my skin where it's clear does same velvety texture as my son (am not wanting a place in the next Dove commercial, aagggh, the thought !)

I have just had my hands x-rayed cos doc thought rheumatoid arthritis. Results show some inflammation but thinks just early osteo arthur. (ie. put up with it)

Will do more investigating, methinks auto-immune disease is the key here.

thanks again, you're a knowledgeable lot !

 

wac

[Kathryn]

Waccoe, if you come up with anything in the course of your investigations, let me know.

 

My daughter won't rest until she's found a physical cause for her symptoms. We think a lot of it is due to depression as I've said on another thread, but I'd hate to think we were missing something else, hence all the tests.

[oracle]

I am on the autism UK mailing list. The guy who now runs the list Seth, is quite convinced that there is an auto immune link with ASD. In fact many often on the list believe this to. There are parents on the Home ed list who have also made the connection. For example ASD and ME appear to go hand in hand. Also for what it's worth there are many Mum's who have ASD children and while they do not have an ASD themselves they suffer from thyroid disease. Myself being one of those Mum's and when I mentioned it on another list there were another 10 Mum's who all posted back that they have thyroid disease to.

 

Interesting because it leads me to look at the vaccines that they are given which are meant to be protecting their system, but which I now feel may well cripple their auto immune systems. I am not trying to stir the pot here and I do not mean the MMR.

 

Carole

[Clarkie]

Dropping in on a thread here before I go to bed - I have Rheumatoid Arthritis and Systemic Lupus Erythramatosus (SLE) (RA dx when I was 24 and SLE dx when I was 3 months pregnant with my oldest son) - rare to have both diseases but I don't do anything by half. Please push for blood tests as the simplest of blood tests (ESR) will show if there is infection/inflammation. Both RA and SLE are auto immune diseases and can be dx with blood tests - I have had this for a long time so for once, and it may be just the once, I know what I'm on about (ask me what day it is and I probably couldn't tell you). The only down side to RA blood tests are - you can actually have RA without having a Rheumatoid Factor but with SLE you have to have antiDNA and antiANA antibodies to dx the disease. SLE is fairly rare in boys/men 9:1 ratio - I take weekly immunosuppresants (oral chemo basically) and many painkillers - which work wonders - I know, more drugs - but I don't do pain! Don't let the consultants fob you off - go in armed with as many questions as poss. I have no idea if there is any connection with ASD/Asp and wish I could be of more help in that department but I am a complete novice. The only other possible suggestion would be psoriosis (probably spelt wrong) - that can cause scabs / skin chafing. Do let us know how you get on. Good Luck.

[smallworld]

Thanks for that Carole,

I totally agree with your post. My mum has hypothyroidism and several other quite rare disorders to do with lipids/cholesterol and blood clotting plus raynaud's disease. My father has some rare form of arthritis similar to rheumatoid (but with a much longer word he tells me !)

I, myself had the thyroid test done after my second pregnancy cos I had all the symptoms (still do ) but the test came back normal.

I started all this investigating when my third child ( the one referred ) was dx as I am convinced there is something else going on. I am not obsessed with finding a cure but with knowing why.

Will keep you posted,

 

wac

[oracle]

Well Wac thank you because although I have a goitre and two large cysts that have now moved my windpipe slightly out of place, ALL of my tests keep coming back normal for my thyroid. That said a group I joined keep telling me that 'normal' does not really exist. Well we know that anyway being Mum's with ASD children. But their point is it's what is normal for you and I and because my tests are always the same then it's difficult getting them to listen.

 

I don't suppose you would like to pm me with your symptoms and we can swap notes here?

 

Carole

[geekgirl]

Hi! I read this thread with great interest and would like to know more about the link between autistic spectrum disorders and physical symptoms.

 

I am 22 years old and suspect that I have Asperger's Syndrome, and am currently preparing a portfolio to take to show my GP in order to seek a diagnosis. I can relate to many of the symptoms described here and in other posts: flat feet, being very flexible, unusual sleeping patterns and tiredness, hips that make my feet point inwards, muscle cramps, aching joints (especially my knees). I have been to see several specialists about the aching knees, and even had an MRI scan - but this showed absolutely nothing - so the best diagnosis I got was that it was "something to do with the soft tissue". Also, I think my mum suffers from hypothyroidism (I know she was tested but I can't remember if she told me the results).

 

In particular, can anyone provide good sources for any of this information e.g. medical journals, books published by accredited authors etc. I would like to be able to back up my case with credible facts, as I have been told seeking a diagnosis as an adult can be difficult. Also, would anyone object if I print out a copy of this discussion to take along with me?

 

Thanks

[call me jaded]

The problem with the autoimmune link is that you have to tiptoe around the MMR question. The average GP believes the MRR/autism connection has been discredited. Won't go into that discussion right now, I've been stirring enough on here.

 

Theresa Binstock has summarised a lot of the research here:

 

http://www.autismwebsite.com/ari/dan/scien...foundations.htm

 

The Vijay Singh stuff is interesting but that's about the dreaded MMR.

 

In my own family virtually all have hayfever, lots of them have allergies, eczema, rheumatoid arthritis, diabetes, my husband's family have coeliac/stomach cancer. Three of the six of us are off gluten and dairy. So numerous immune dysfunction indicators there.

 

You could search both The Lancet and the BMJ and see what comes up.

[elaine1]

wow i have an under active thyroid myself and think i had the condition when carrying tom although nothing wa s done about dr just said i was low in iron and kept giving me tablets. I once remember having both kids in the bath i put my head on the side and fell asleep, i was so exhausted.

 

horrible condition!

[oracle]

One of mine had the MMR while the other did not because I seen what happened to the eldest after he had the MMR (He was almost 3 when he had it so you can actually 'see' the difference then) Having said that Matthew (who did not have the MMR) has just as many allergies as David and he has the aching knees, nice to know he is not alone because I often spend hours massaging his knees for him. He also has cramps and of course his Cyclical Vomiting Syndrome and he has always had bowel problems, which are often attributed to the MMR. Paul Shattock and I have had the odd discussion or two about that one. David is also now having bowel problems so is it the MMR or an autism thing in general?

 

My own 'gut' feeling is that for my two their first vaccines did the business because they probably both have a faulty gene handed down from me. Then again I had the rubella jab so does it pass that way? Will we ever know or be sure.

 

There I did not tiptoe round the MMR just got right to the point. But I am always left with more questions than answers.

 

Carole

Edited June 19, 2005 by carole

[smallworld]

Hi,

the more I read about auto-immune disorders, the more I can make a connection in our family.

Good for you Carole in biting the bullett and mentioning MMR. My eldest two had both jabs but I was reluctant with my youngest (already dx asd) and 'declined' the booster.Got plagued with postcards for a while but eventually had to see doc on unrelated matter and when quizzed and declined again to have booster, doc just said that's OK. That speaks volumes to me, given other parents' tales of harassment from HV and docs.

My main concern is that the consultant we see might have little knowledge of asd kids. Am wondering, should I tell his paed consultant that we have been referred ?

I haven't made my mind up re the MMR issue( as opposed to the mercury issue)

But I know that my son has a regressive form of autism, a perfect example occured last week when his LSA said he didin't know what a horse was. I know that he knew all common animals and the sound they make at two years old. I am searching for the cause of his regression because it doesn't fit the typical kanners type asd. (ie.from birth)

There has to be some 'cause' to this regressive 'effect' in my opinion, and in my family I think some form of auto-immune disorder is the key. I'm the only child with hypermobile abilities, and the only one with autistic (and hypermobile) children

I think this topic could run and run !

 

wac

[bramblebrae]

Hi there very interesting discussion. My son almost 6yo with ASD has recurring diaorrhea it has been a few months now but every month or 2 it pops up again for about a week then goes he's missed so much school because of it but they've agreed now its not a stomach bug he can pass on so he can go to school anyway his diet is pitiful so it may just be that. the main thing I wanted to speak abou tthough was his skin he has very easily marked skin and the slightest knock results in a very large but very short lived bump eg he banged his head 2 mins later huge lump appeared very red too about 30mins later flat again though still slight redness also if playing rugh and tumble etc with him then look at skin after it is very bright pink you can see hand print marks clearly on areas that havent been held much other areas are just pink all over this too fades very quickly. Recently however he got infected with molluscum a contagious skin infection which is harmless but apperently alot of kids get it especially from swimming it come up in little spots on trunk and arms and the internet says it can last upto 2-3 years he had a little skin tag next to one of these spots and together they became infected so I took him to doc who gave some cream he said the other spots can be squeezed gently in bath so core white bit comes out and it might help them clear quiker cause at this point he'd had them over 6 mths and my niece who had them had cleared up within this time, anyway the point is every single one of the spots has become infected at one time or another some turning really nasty looking and from everthing I read it just shouldn't happen, has anyones kids had molluscum if so was there an usual reaction at all.

It just feels like there is something 'different' about his skin somehow but I've insisted on blood tests in the past which have showed up nothing for stuff like anemia because of his poor appetite etc and I don't want to ask for more tests and put him through needles again etc for no good reason.

 

Lorraine

[smallworld]

Hi Lorraine,

My son had molluscum for about year when he was 3ish, when they finally cleared he got another similar rash that lasted 3 or 4 months, then when that went he got a huge verruca on his toe !

We had the same thing with his skin becoming easily infected and easily bruised or marked. At the moment he looks like he needs shin-pads on with his short trousers for school.

 

wac

[Kathryn]

My daughter bruises easily too, she has remarked on this herself. She always has them on her legs and there is no obvious cause. She also complains of rashes when she goes out in the sun, although I can't say I've noticed anything.