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At my wits end - what is wrong with my DS???

(45 Posts)

This is a very long story, but I will try to keep it as brief as possible. My DS is 2.5 and since the day he was born, we have been battling against coughs, colds, rashes, diarrhea and general miserable-ness (I know that's not a word).

DS absolutely would not take to breastfeeding (couldn't latch and was generally just very unhappy) so we started him on formula when he was a week old. He became quite ill (diarrhea, vomitting, rash) so we changed his formula again, at the advice of our midwife. This cycle continued until he was 6 weeks only and on his 4th type of formula. He had beem vomitting and had diarrhea all day and into the night and refusing to take a bottle. In the middle of the night we took him to the children's hospital (in Canada) where he was diagnosed with reflux and given a prescription for ranitidine. We were also given a referral to a pediatrican who we saw 3 days later. The pediatricain suspected a cows milk protein intolerance and suggested we try soy formula.

We did so and over the course of the following week, he made a dramatic improvement. I saw his first smile shortly after and I thought the worst of it was over. We had a good few months and then he became ill again (same symptoms) when he was 6 months old. We assumed is was a flu and just rode it out. It happened again when he was 10 months old and we ended up back in the emergency room - he had pneumonia and was severely dehydrated. We almost lost him sad.

Since that time, he has had fairly regular bouts of diarrhea (4-5 times per week, sometimes more), has a permanently runny nose, constant scratching and just prone to being very tender and miserable.

I am at my wits end. He has been taken to emergency, urgent care, the doctor and the 4 different pediatricans numerous times in his short life and no one can figure out what it is. He was on dairy briefly when he turned two as we were told he should outgrow the intolerance between 18 and 24 months. He did amazingly well for 2 months and then the same symptoms returned so the dairy is gone again.

Thank you so much for getting this far. Does this ring any bells for anyone? I don't know what else to do. He always seems to feel like crap and gets sent home from daycare on a regular basis (I have had to leave work early about 20 times already in 2014). Any advice is welcome.

Skivvywoman Fri 08-Aug-14 18:47:26

My mum said I was the exact same when I was a baby up until I was 2 and I'm sure she said I had a yeast infection(It may be the wrong word) but if it didn't clear up I could have been coeliac!

Poor babe hope he gets better soon

StuntNun Fri 08-Aug-14 18:48:49

It could be an undiagnosed allergy. Has an exclusion diet ever been suggested?

Sootgremlin Fri 08-Aug-14 18:49:27

Is there any possibility of generalised allergy testing to see if he has other sensitivities as well as dairy?

I just wanted to give you these flowers OP as that sounds incredibly tough, hope some experienced posters come along and help you shed some light.

Thanks so much everyone. He hasn't had allergy testing yet as the optimal age is 3. DH and I are planning on doing a full allergy screen when he is three, although it isn't covered on our insurance so we will end up paying out approximately $500 for it.

We have tried altering his diet to see if it made any difference but it hasn't. He is addicted to shreddies which made us think maybe it was wheat. We removed wheat for two weeks and the diarrhea continued.

I'm just so frustrated. He is my baby and it kills me that he has spent his entire life feeling crappy. sad

EggInABap Fri 08-Aug-14 18:53:43

I was also going to say possibly coeliac.

I'm at work, but will post when I can. I haven't abandoned the thread.

coeliac? I'll do some reading on that. Thanks!

LairyPoppins Fri 08-Aug-14 18:56:09

I was also wondering about coeliac. It's surprising how many things have gluten in (my best friend has it).

Sorry to hear DS is poorly.

EssexMummy123 Fri 08-Aug-14 18:57:39

50% of those who are dairy intolerant have a soya intolerance, I would switch to oat milk, worth a try.

The paediatric doctors that he's seen - were they specialists in allergies? If not then try and find a paediatric consultant who is.

He was on soy formula until he was 11 months old. He then developed issues with soy as well so we switched him on to rice milk (not formula). He has had rice milk ever since.

None of the pediatricians he has seen have been allergy specialists (to the best of my knowledge). I think I need an appointment with our GP to ask for a referral to an allergy specialist.

Cheeky76890 Fri 08-Aug-14 19:03:46

All gluten - so no wheat, rye, barley, oats. All oats banned, even those they claim to be gluten free as they still make people ill.

StuntNun Fri 08-Aug-14 19:04:31

I wouldn't put too much faith in an allergy screen. They are expensive but not reliable, especially where food intolerances are concerned as there may not be an antibody response. My DS3 is intolerant of eggs, dairy and soy and he has been off them for a while. Some symptoms have improved: his skin, sleep and temperament, but the diarrhoea remains. There is probably damage to his gut lining that will take a long time to heal. To identify a food intolerance you need to eliminate it for four weeks then try a food challenge. Also it can be tricky with processed foods which sneak in milk into frozen chips or soya into jelly.

aintnothinbutagstring Fri 08-Aug-14 19:07:43

So is he on soy dairy alternatives now? My ds doesnt tolerate cows milk (though is much better than he used to be, can have the odd ice cream). Maybe its the soy? We give ds goats milk which he tolerates completely.

Could he be deficient in anything? We find vitamin d and b12 make a particular difference, oh and omega3.

ancientbuchanan Fri 08-Aug-14 19:11:53

I would take put all things with gluten and yeast, first. So eg no yoghourt, no oats, no wheat. Check the contents if everything. You will need to do a lot of home cooking.

And keep to it for at least three weeks, maybe more. It takes the gut a long time to recover.

Then if no improvement take out eggs and egg products.

I would also check your washing powder as although it won't probably be causing the d, it may be exaggerating the itching. We can only use one sort, called Surcare in the UK. Everything.else sends Ds into overdrive. Check your cleaning products too, try to.avoid.silicates. go for old fashioned and additive free wherever possible.

On the yeast front, check what fruits he gets. Yummy ripe fruits can set off allergies. And go for organic.

Ds had something different but with s few if these features, a friend has an equivalent.

Do you live in a city or the country? If in the country, try to avoid being around when crops are sprayed.

Poor him, poor you. V v stressful and tiring.

Whoateallthecheese Fri 08-Aug-14 19:21:32

I was going to suggest coeliac. If you think it might be this, don't take gluten out of the diet - you need to be eating lots of it for the test to show up positive. Check out the Coeliac UK website, lots of helpful information there.

Thank you so much everyone. Doing a rush job at work so won't be able to properly read and reply for a few hours. I really appreciate all of the advice and support though. Thanks!

FelicityBennett Fri 08-Aug-14 19:37:59

Not sure what test have already been done but this may be worth considering?

www.nlm.nih.gov/medlineplus/ency/article/001476.htm

my friends baby is allergic to diary and has an intolerance to soya. he has had allergy testing done at nine months and he was found to be allergic to nuts by a skin prick test. his mum is concerned that he has had a reaction to eggs also.

I really feel for you, there are some lovely people on the health boards that maybe able to help you out more.

I really hope you can get him allergy tested soon.

Maryz Fri 08-Aug-14 19:50:54

I would also say to try and rule out coeliac disease. He should be blood tested asap, and if it comes up positive then a biopsy will be needed.

Whatever you do, please don't remove wheat from his diet until after he has been tested, as it won't show if he isn't eating gluten. I know it seems like a good idea to do diy food limitation, but coeliac is a disease not an intolerance and it is very, very important that it is diagnosed correctly.

And also remember gluten-free doesn't mean wheat-free - there is gluten in a lot of foodstuffs that are wheat free.

Forgettable Fri 08-Aug-14 19:53:52

Hi Annie

What Mary said ^ ^ wrt not excluding til initial bloods taken

Shonajay Fri 08-Aug-14 20:22:53

Have you tried almond milk- my dd transformed on it after being on soy/rice milk for years.

Thank you so much for your help last week. I'm sorry I disappeared. DS woke up Saturday morning and was obviously feeling pretty rough. By Sunday morning we were back at the children's hospital as he was refusing to eat or drink and he had a fever that wouldn't go away. It has been a long, difficult week with him, but we have referrals to a allergy consultant and a paediatric specialist. Hopefully we will have some answers soon.

an allergy consultant.

LizLimone Thu 14-Aug-14 02:02:36

Agree with Maryz re coeliac testing - many undiagnosed coeliacs have lactose intolerance as a result of gluten destroying the villi in their gut so they can no longer process lactose.

Only thing that makes me doubt that is the fact that your DS had symptoms from birth whereas coeliac disease usually only shows up after weaning when gluten is introduced to the diet. The fact that he needed soy formula from birth points to a separate lactose intolerance independent of any coeliac issues.

Good luck - hope you get some answers soon for him.

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