alopecia in 13 year old - how long to go bald?

[cestlavielife]

loss started with small patch sept 2008, increased gradually and now in freefall- about 40-50% gone.

in patches

pics here asieslavidacestlavie.blogspot.com/2010/01/hair-today-gone-tomorrow.html

have dernovate steroid cream from dermatologist but it seems to be accelerating the loss if anything!!

anyone with experience - if gone this far will he go bald? when? how long does it take?

(he has autism and his sister has coeliac - in case any link...)

Sorry, have no experience of alopecia. But I do have experience with a child who 'looks different', and I'm sure you're doing everything you can to remind him that it's what's inside that counts!

oh gosh, there is a link with celiac!
Try getting him off gluten, don't know any other way. Search for alopecia, gluten (rather than celiac) to find out more.

I don't think any creams/potions will do anything if he is affected from the inside.

(my ds is gluten intolerant, there are loads of symptoms linked to gluten, the diet might even help his autism, no guarantees, but worth a try?)

link

I've heard of a lot of people who have alopecia when they have undiagnosed coeliac disease.

There are a few childrens alopecia support groups who would be able to advise more on timings - a friend of mine has an 8 year old who lost all her hair a few years ago and is still looking for a reason why.

Hi,

Namechanged for this as I am stupidly sensitive about my hairloss.

I'm afraid it is just entirely unpredictable. The loss could stop now, or it could speed up, or slow down. There might be future episodes of hairloss or it might be a one-off. It might start to grow back quickly or slowly, or sadly not at all.

The unpredictability of it is one of the real difficulties of living with it.

I had my first episode at about your son's age; lost lots of hair (easily as bad as his). In all, that first episode was a couple of years from start to end. I had one or two serious future episodes. Then from about age 16 it more or less left me alone for about 15 years(small patches coming and going but nothing too bad). Then a few serious episodes. Currently moderate episodes come and go.

I have found that dermovate does help. But remember the hair regrowth cycle is very slow, so there is a big time lag for results. If possible try to concentrate on ways of coping, rather than on waiting for the cure.

Dermovate, a steriod, helps only some, and is much less effective than steriods taken orally. But even orally, steriods only help some sufferers. And of course doctors are less willing to prescibe oral steriods to children than to adults, bcs of side-effects.

They have apparently identified the gene implicated in alopecia, so perhaps a cure is down the line somewhere.

I think a crucial thing is how badly your son is upset by it. People vary so much in this respect. I hope very much that his distress isn't too great.

he eats 99 per cent gluten free since his sister is 100 per cent on GF diet. maybe that 1 per cent?

he is not bothered by it as such - tks to his autism and learning difficulties...

will keep up the dernovate trial and wait and see...

It could be that on top of gluten he is still deficient in some minerals/vits. 3 years after we started the diet I had my ds hair tested and even though our dr said that once on the diet he would be absorbing OK, the result showed that he was not.
Hair testing is done privately, but not that expensive and you even get a discount for 2 so u could do both children.
My ds was Zn, Mg deficient and also had too much copper, we had to fine-tune the vits, as multivit was not good for him.
2 places for hair testing, biolab & foresight, it's done by post, no needles!
To be honest, if he is deficient in something, no steroid will make up for it.

Just curious, how long since you dropped gluten did his hair start falling out? Coz my ds got worse for about a year after we stopped gluten, after which he started getting better, then better still once we got the vits sorted.

btw, foresight do a discount for under 16s, not sure about biolab.

Alopecia is an autoimmune desease. Steriods are effective, albeit in a limited way, for this condition, just as they are effective for a range of other autoimmune conditions.

I'm sure that supplements are of value to hair-health overall, of course, and that they may be particularly helpful for someone who has had absorprion problems. But they do not cure the autoimmune condition.

I really would advise against being too sceptical of the mainstream treatment. Because the condition is so stressful for sufferers, and because the effective treatments are so very far from perfect, this is an area where huge numbers of alternative treaments are marketed, and (believe me, from a lifetime of preoccupation on this subject), there are very many false trails offered by private specialists of one sort or another.

Autoimmune conditions are strongly linked to gluten and often respond to the diet - unless left for too long when they tend to be irreversible.
It's all in the mainstream medicine, but you can save yourself the hassle of appointments and needles by doing some supporting test that are not (yet) available on NHS.

did biolab tests long time ago - they suggested zinc i think, cant remember really...

he has been GF (nearly) for many years - so there is no new diet or anything i can pin point... big changes in famiy situation in 2008 - 2009 has been relatively calm ...

dd's gastro did say he should have coeliac screen but dermo wasnt willing to ask for it - however, maybe next time at review.

(i didnt push as we had already had to wait one hour and blood tests are a bit of a no - no for ds after last one in sept 09 (for genetics) which left him traumatised!

=- he had a coeliac screen years ago which was negative. dd was diagnosed 2004 so family has been largely GF since then (ie 100 per cent for her and 99 per cent for him)

had taken out most gluten from diet before that eg cut out pasta etc as he had gastro issues

the whole autoimmune thing is interesting...dermo did say that yes you can get propensity to autoimmune in the genes so while dd is coeliac, ds has developed alopecia...

nothing specific to trigger, he has been largely healthy - eg no viruses/flu this year etc...has always had gastro issuse and many tests done previously (all negative) but maybe gastro issues are also neuro related. who knows.
he takes probiotics daily.

the alopecia is a new thing for him and me - bit of a surprise!!

and one which can happen to anyone therefore not necessssarily linked to his autism etc issues.

but- maybe an autoimmune link (still awaiting genetics results so who knows maybe something will come up which shows a link).

will research - the coeliac is easily understandable (reacting to external substance ie gluten); while the body's decision to turn on itself ie the hair is more bizarre....

Ay ds was diagnosed gluten sensitive by a neurologist , he had no obvious gut symptoms but he had major malabsorption. After that I stopped worrying myself about tests and proofs and now concentrate on getting him better. Gluten sensitivity is very hard to prove with test as it can have various symptoms, not necessarily gut related, my ds had a genetic test, but if your dd is celaic then it's quite possible that there is a genetic susceptibility.
If your ds was Zn deficient, then he might still be now (Zn can't be stored in the body and needs to be in constant supply). Also the balance b/w Zn/CU has to be right, otherwise too much copper can be unhealthy.
If you want to understand gluten-autoimmune link, the best book I came across is called Dangerous Grains by Braly/Hogan (I got it from the library).