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Original poster

possible asd diagnosis and recurring diahorea?

33 replies

helewele · 06/01/2008 20:25

Hi there,

my lo has just turned 2, and is in the process of being diagnosed with an asd. the problem at the moment is she seems to have recurring diahorea, every 4 to 6 weeks, which has been going on since she was about 7 months (been to docs loads about this, but they think I'm a crazy mama as it is!!). the latest bout has been going on since fri morn, and now her wee bot is raw! I can't seem to get it to clear up, and she goes nuts whenever I try to clean her bot, or put barrier cream on it.

would anyone have any ideas as to what I could do to help clear this up and help the soreness at the moment, I'm really at the end on my rope on this one!

any comments or advice would be greatly welcomed!

OP posts:
twocutedarlings · 06/01/2008 20:47

Hi helewele, Has your GP tested a sample atall? to check and see if she maybe has an infection, i know that bowel problem and ASD can often come hand in hand. With my DD it turned out that she was lactose intolerant have you tryed cuting all diary from her diet for a short time?.

The cream we used was Metainium (sp?) which definatley helped. But tbh the best thing we found was leaving her nappy off as much as possible (with a mop bucket at the ready lol).

sphil · 06/01/2008 20:53

We had the same thing with DS2 (now 5). It was particularly bad when he was between 1 and 2, but continued intermittently until we sought the advice of a nutritionist who specialises in ASD. His view is that it's caused by an immature immune system which causes the body to overreact to things that it is even slightly sensitive to. The body then produces more water in an attempt to flush the irritant out, which results in diarrohea.

Is your DD allergic or intolerant to any foods? Dairy intolerance can be a particular problem. We've had to remove a wide range of foods from DS2's diet but he is a highly allergic child (asthma and eczema as well).

Original poster
helewele · 06/01/2008 21:02

Thanks for the replies!

GP took sample some months ago, but everything came back normal, and as he has given me the same advice over and over (and made me feel like I was a real pain) I haven't been in a while. tried cutting dairy from her diet, and have tried cutting gluten too, but diahorea still comes! I've also tried making a food diary, but there don't seem to be any triggers - she eats a reasonably healthy diet, and I restrict sweets and stuff like that. Can't leave her without a nappy as she has sensory issues with her skin, and scratches until she bleeds. Just read this back, and it sounds so negative! just don't know what else to try! how would I get in touch with a nutritionist who specialises in asd?

OP posts:
Peachy · 06/01/2008 21:06

Agree with 2cute, i personally don't think its a coincidence that ds2 can eat anything and ds1 and ds2 (both ASD) have casein intolerances (a milk protein)- bowel issues a sign of that.

Have you spoken to yurt RE the Sunderland tests? Might be an idea (food intolerance for ASD type thing).

Casein intolerance isn't the same as lactose intolerance- foods that are OK for that (eg goats milk) stillc asue reactions in me (yep I also ahve the wonderful gene!)

A food elimination diary is really the only way to do it if you suspect intolerances, GP tests notoriously unreliable

Original poster
helewele · 06/01/2008 21:12

not talked to anyone on here before, this is my 1st post

I really worry about eliminating food groups with no outside help though - I feel like she is still only a wee baby! what are the chances of getting help from a nutritionist or dietician on the NHS? my gp doesn't seem to have a notion, and her paeds referals all went through my HV (who has now moved and left a useless idiot in her place!) just want to do the best for her, but really don't know what that is . . .

OP posts:
twocutedarlings · 06/01/2008 21:19

would she maybe wear a pair of Knickers? or maybe a larger sized nappy?

sphil · 06/01/2008 21:22

Our nutritionist is private - but excellent. Expensive though, especially at first. He does everything by telephone - a battery of tests first (urine and saliva) and then regular consultations. After a year of his regime (diet and supplements) DS2's bowels are pretty normal (they'd improved hugely in a couple of months).His eczema has almost cleared and his asthma is hardly a problem any more. I can give you his e-mail if you use the MN CAT facility (Contact a Talker) - or do others think it's OK for me to post it publicly on here?

Original poster
helewele · 06/01/2008 21:24

hey 2cute,

sounds like an idea, I have some pants for her, so will try think I'm going to have to go back to GP thou, this can't keep going on with no intervention! there must be something to stop her being so ill, and losing so much weight!

thanks for your replies xx

OP posts:
twocutedarlings · 06/01/2008 21:25

Im trying to think of a way that you might be able to help her bum to heal.

Does the diahorea have the same smell all the time, sorry if this sounds odd, But with a diary intolerance it often has the same smell if you know what i mean . Not just a normal diahorea smell.

I really hope that this makes sence as i realise how odd it may sound

Original poster
helewele · 06/01/2008 21:29

hi sphil,

would be great to get a nutritionist, but I really couldn't afford it. struggling to make ends meet as it is! had to buy so much when the play therapist came. begining to think an asd diagnosis and all the things that go with it is going to cost a small fortune!

OP posts:
Original poster
helewele · 06/01/2008 21:32

2cute,

I know what you mean! I think it smells sort of sweet and sickly (tmi!!) it is always the same smell - and it stinks the whole house out no matter how quicky she is changed and the nappy is put outside!

OP posts:
sphil · 06/01/2008 21:47

You could try BIBIC (www.bibic.org.uk). They have a nutritionist there who is good with ASD dietary stuff. Because it's a charity you can apply for a bursary to meet the cost of your appointments.

Original poster
helewele · 06/01/2008 21:51

thanks sphil,

will def check it out!

OP posts:
twocutedarlings · 06/01/2008 21:56

The same smell all the time is what make me think that it is definatley something in her diet. When you did cut out diary how long did you give it?

Original poster
helewele · 06/01/2008 22:02

just 2 weeks, but the diahorea came back when she was off dairy products (middle of 2nd week)

how long should I try dairy free for? she eats a lot of cheese and yogurt and has milk on her cereal and a bottle before she goes to bed, so what should I substitute this with? I don't like the idea of soya milk, and I tried goats milk on the advice of another GP, but she wouldn't touch it!

OP posts:
twocutedarlings · 06/01/2008 22:23

I would have thought that 2 week would have been enough tbh, but the thing is they sneak milk in so many things that you may not have noticed, i remember being amazed to find milk in sauages.

We did replace most things with soya products as it work for DD there is also rice milk you could try, however there are others here that will be able to help you further.

I think you need to ask your GP for a referal to nutritionist or dietician as your DD is losing weight then im sure your GP would want her to see by a specialist.

sphil · 07/01/2008 09:58

DS2 drinks rice milk. I think you're right to be cautious of soya - DS2 was on soya milk from 4 months until he was 3 and has now developed a sensitivity to soya as well, though he can tolerate small amounts.

I'm not sure whether two weeks would have been enough - sometimes you can get reactions for a while as the gut clears itself. But you definitely need to talk to an expert (and I'm sorry to say this, but in my experience, nutritionists who aren't experienced in the autistic field have been fairly useless).

Peachy · 07/01/2008 12:53

Ah i was going to say the same as Sphil- ine saw hos[ital dieticians first but the BIBIC Nutritionist (Karen) is by far the best and we have a prt bursary, full ones are available.

Tiggiwinkle · 07/01/2008 13:27

MY DS5 with AS has just been diagnosed with coeliac disease. (DS1 is also a coeliac and amost certainly AS too). There does seem to be a link between the two conditions. However, do NOT cut out gluten before you have her tested for coeliac as they cannot do the tests unless you still have gluten in your diet.
Have a look at the coliac society website and see what you think. The first step is a simple blood test which your GP can arrange.

Tiggiwinkle · 07/01/2008 13:31

www.coeliac.co.uk

Original poster
helewele · 07/01/2008 13:44

thanks for all the replies

I checked out the BIBIC website and asked them for some info, but as we live in Northern Ireland, I don't think we'll have much joy in that direction.

This may sound a little dense, but if it was a definate food allergy would she not have diahorea all the time iyswim? especially as she has gluten and dairy in her diet every day.

I am starting to get really concerned about the weightloss though. Weighed her this am, and she has lost 11lbs since mid october (33lb down to 22lbs) and she is quite tall for her age (compared to others at toddler group etc). Don't really know what to do as my GP already thinks I am crazy because I insited on a paeds referal at 18 months, and just won't listen to my concerns! (sorry, rant over )

OP posts:
aquariusmum · 07/01/2008 13:54

My ASD DS has had what I can only describe as irritable bowel syndrome pretty much since birth - diorrhea, lots of wind, explosive poos, sometimes constipation - almost never just a normal poo in fact. This was in stark contrast to my NF daughter. We got his stool tested - nothing . We tried gluten free, it worked for a while but not long term. Milk also doesn't seem to be the issue. The only thing I have found that works is a very good probiotic which I order on the web from America called ThreeLac. It copes with bowel problems especially candida/yeast type issues. When I started dissolving this in his bottle of juice every morning, it was incredible as for the first time ever he did NORMAL POOS! It doesn't always work, and too much fruit or junk still sends his bowels a bit mad, but I am convinced it is helping by binding him up a bit. I take it myself too sometimes and it's all natural. It is expensive though, but I could send you a box next time I order Helewele as I think I am a due a "buy one get one free"? If of interest, let me know and we can email about address etc?

Tiggiwinkle · 07/01/2008 14:06

helewele-No the diarrhea certainly does not need to be there all the time. My DSs both rarely had it! My older ds was ony diagnosed after suffering from anaemia. Coeliac Disease certainly causes loss of weight; it may or may not cause bowel problems. I would definitely ask for a test.

Peachy · 07/01/2008 14:14

If its dairy, there can often be a 'limit' which if you ex ceed causes the reactions (this is what happens with me especially- although it worsens in PG so I'm dairy free atm).
I would definitely recommend the probiotics; BIBIC suggested the holland and Barrett chewable ones for kids (she said the dosage was fine for adults and kids), and theya re quite cheap. We also take H&B Flax seed oil as part of the BIBIC regimen.

BIBIC do some outreach stuff, not sure if they cover NI though. But I bet they'd be able to suggest somewhere nearer you with the same ethos if they can't help.

Graciefer · 07/01/2008 16:40

DS1 has also had diorreha/explosive bm's for his entire life (he is 5 in Feb and ASD).

We have approached this so many times you wouldn't believe, for years his GP insisted it was 'toddler diorehha'. His Pead took it slightly more seriously and he has been given many tests (allergies etc).

He has been completely CF for around 3 years as although he doesn't have an allergy he most certainly has an intolerance to casein. This doesn't stop his bowel problems, but they are a lot worse should he get hold of a milk product.

We have seen dietician twice and to be honest, both times were a waste of time. DS1 has an extremely self limited diet, made worse by having to be CF. He has constant trouble with his iron levels, again made hard by his self limited diet.

We have also tried digestive enzymes for a couple of months, this didn't help him either.

Recently we have been giving him a fibre supplement which we put in his juice, this seems to help intermittently, which I guess is better than nothing.

His bm's make toilet training an absolute impossibility, it also means he is often sore and in pain as they burn him. Every time we have an appointment with his Paed/school doctor etc, we always labour the point that our main concern is with his bm's, however it does seem that the medical profession has now given up on finding a solution for him.