Help diagnose my son

[TheOnlyPurpleLlama]

Okay, so I know as a general rule you shouldn't turn to the internet for medical assistance. But, we have gone through the correct channels. We've been laughed at numerous times, and after 8 months of fighting we have referrals. But they're slow, and I'm not 100% they're in the right direction. I'd like to hear your ideas, suggestions and similar stories (I'm really really hoping there are some).

So: DS. He's just turned 1. The majority of his symptoms are gastro-intestinal, and we believe he has numerous allergies/intolerances. I can count on 2 hands the number of normal poos he's had since weaning.

He was BF for 6 months, and then we switched to formula when I went back to work. We stair-cased his intake, and he developed numerous ear infections over this time.

We switched him to oat milk, and the ear infections have stopped. So, we're thinking potential milk protein allergy.

When he eats eggs, he develops a rash where touched and his poos turn dark green (also did when I ate them when BF). Again, we suspect allergy.

We also think he may have an issue with gluten/wheat; when consumed, his develops acne on his face.

We've taken him off wheat, eggs, and milk and have seen some improvements in his poos.

However, we are still getting a lot of loose poos (like paste, and an ochre colour) - and some of them have orangey flakes in. We know he's not having carrot/tomato (as there is a family history of fructose problems too).

We can get perfectly normal poos and then 2 hours later, weird loose poos.

He also developed a hernia in his groin 2 weeks ago.

Could any of these be linked in some way / has anyone encountered similar?

Thanks if you read this far

I have a question for you. Did you take antibiotics while pregnant and/or did your boy take them since he was born.
DS2 had very similar problem to what you describe. At 4 month he was diagnosed with reflux and at 8 with food allergies no eggs/poultry, no dairy, no wheat.
Later he also developed a severe penicillin allergy, cat allergy and lately asthma.
Both me and him were heavily prescribed antibiotics. him because of all the vomit going into his ears and lungs, me for continuous infections.
I believe all these antibiotics severely damaged my son's micro biome and we are now working on replenishing it.
His allergies go better around age 3 and he can now have milk, eggs, wheat without being affected whereas before he would projectile vomit even through his nostrils.

He never had an hernia, so I think this must be looked at. Is he constipated? At some point my son was, even with daily poos and as the gastro put it, constipated does;t mean you are not pooing but that you not emptying your bowels.

When he was little, I had these horrible poos, so smelly I had to change the sheets even without stains.

Push for referral to see a gastroenterologist and allergist .

Increase his greens, including prebiotic such as leeks, onions, asparagus and opt for whole grains, so wholemeal bread (but make sure it says wholemeal flour in the ingredients and not wheat flour and bran ) and brown rice , oats. If you are avoiding wheat, spelt flour is easy to use. I can give you recipe to bake your own bread. \

Got to go to the school run (australia) , bye

Thank you so much @KingIrving.

Yes, he has. For his five back-to-back ear infections. He then had 48 hours of vomiting and explosive diarrhoea. It was so acidic it stripped his skin on contact.

I’ll push for a gastro appointment. So far we have a dietician, allergy clinic and paed. surgery appt but no dates for any of them.

It sounds like it could be the antibiotics. I’m so pleased your son is doing better, and it gives me a lot of hope for the future!

I bought some spelt flour earlier so will try some bread - it’s so hard to make/find vegan, gluten free bread.

(No point of reference)
Could you get probiotics into him?

I have a kid with allergies and it took until he was 2 years old to diagnose them all.

The ones he is anaphylactic to are fine, after all that's a pretty sudden and obvious response.
The moderate allergies that gave him stomach cramps, green acidic pops, rashes and eczema are so much harder to figure out!

Be wary if soya.
Then the obvious ones such as nuts.

I had to strip back my sons diet SO many times to figure out what was causing the issues .
The problem is with moderate allergies that affect the gut, they can take several days (if not weeks) to give them problems.
So you think you've introduced a new food with no problems so try another and another then 4 weeks in they are symptomatic and you have absolutely no idea which food has caused it 😭

@fuzzyfozzy we have considered - tad wary when he’s so small (and without medical guidance!)

@WhatAnAbsolutePenis oh wow, that sounds like a nightmare. I’m lucky none of them are severe. We haven’t crossed into nuts yet. Now he pretty much lives on chicken, white fish, pasta, pesto, peas and brocolli. Poor child!

Soya often accompanies cow protein allergy.

It's something I've always done after antibiotics
But they do baby ones
www.mamanatural.com/probiotics-for-infants/
But obviously do your own research

Thanks Jynxa - we've been trying to avoid soya, but it's in so many products!

I'll check those out fuzzy. I didn't know they did baby ones, I'd assumed we'd have to mess around with dosing down adult ones! Will deffo try some.

Hi, people mentioning problems with the microbiome made me think about reading some research recently on FMT and how effective it is. Not saying this is what the problem is or the solution as i am not a specialist, but thought i would mention so you could look into it if interested. I feel for you and your son and hope he gets better soon!

Ahh interesting lay - I'd never even heard of that (had to Google, almost wish I didn't... ) I'll read up on it.

We do have a referral to the allergy clinic Judge - there's a 3+ month waiting list . I'm also conscious that the skin prick test potentially won't show allergies if they're non IgE... I feel it might be a very long road to diagnosis!

There are a ton of books on the micro biome and gut and while you wait, you could also watch this course from the University of boulder California, especially the interview with doctors and neonatologist at the end of each week.
www.coursera.org/learn/microbiome it is free unless you want a certificate and the video lessons are not long. Or just watch the interviews. You don't have the follow the order to access videos.
I wish it had existed when my son was younger.
There are many probiotic food. Borrow some books on fermentation at your local library and prepare some sauerkraut or other pickled veggies.

When we last saw a specialist here in australia after he developed a sudden cat allergy, she was very dismissive and basically told me it is his immune system and there is nothing you can do. Shortly after, asthma appeared out of the blue.
That was three years ago. I am now working on his immune system by increasing bacterias , not too much but a glass of kombucha one day, a tablespoon of sauerkraut or picked cucumber (home made, not supermarket as they are sterilised) the other, a miso soup, .... and every time giving roasted onion, asparagus and so on.

A note for the spelt bread. It is not gluten free, but has lower gluten content. Mix half the weight of the flour with water , so 500 gr flour, 250 ml water, a pinch of salt, yeast, 1 or 2 tablespoon of olive oil (because of lower gluten, you need the oil to give elasticity) , mix, make a ball, cut lines on top with sharp knife, put aside covered with a were tea towel until double in size and oven force fan + top 210.
It will be a hard bread, but hard is good for jaw muscle and you use more saliva which help digest.

Be careful when buying gluten free products because the gluten free flour has usually milk powder in it.

I would strongly suggest probiotics (optibac make them for babies). Sounds like he really needs them especially after so many antibiotics.

Thanks @KingIrving, I will watch.

I'm so so angry that we have been completely dismissed numerous times by various GPs at the same surgery. We saw 5 until I found one who believed me and was willing to refer.

I've also ordered some asparagus for him - and will start learning how to pickle stuff!

Thanks for the tips on the spelt flour. Annoyingly, we found one brand of GF bread which doesn't contain egg white powder. Guess which one brand of GF bread he doesn't like..?!

Thanks @restingbemusedface; I'll google. The episode after the last round was awful. He then got another ear infection and we were prescribed even more. I refused .

Most types of pesto have cheese - look out for that.

Your poor DS and poor you as well

Whereabouts are you based and can you afford to go private? I would suggest seeing a paediatric gastroenterologist ASAP and I can suggest one in London if that would be helpful (haven’t used myself but recommended by others).

Also now you’ve had the referrals you can call the clinics and beg ask them to bring the appointments forward, ask if they have a list of people to call in case of cancellations, for example, and if necessary you can ask the GP who made the referral to send a follow to request for you to be seen more quickly.

We’ve seen a paediatrician for reflux and gastro issues. She ordered blood tests to check various things including coeliac. So you might get some tests and possible answers when you see the paed.

There is good advice online if you look at the Allergy UK website and Facebook groups for CMPA and other allergies. I’m not an expert but i would suggest that you do a food and symptom diary (if you’re not doing one already) which will be really helpful to share with the specialists and dietician when you eventually get to see them.

Also Biogaia probiotics are especially for babies and they are good, they’re the once that we use and lots of people recommend (I’m on a FB group for breastfeeding babies with CMPA).

You are probably already doing this, but a really detailed food/ symptom diary is vital. It will clarify things prior to your appointments.

X post.

This assumes you are breastfeeding but should still be helpful
dilanandme.com/2018/02/04/when-symptoms-havent-gone-breastfeeding-with-cmpa/

My advice would be to do and prepare your own food and stay clear of highly processed food, even healthy type.

Bake your own seeds crackers it is so easy www.bite.co.nz/recipe/11727/Seed-crackers-gluten-and-dairy-free/ or www.taste.com.au/recipes/healthy-seed-crackers/e5e63200-85da-4b2a-9437-3da0e3c43f46 .

Or your own bread , crepes here a vegan gluten free minimalistbaker.com/5-ingredient-buckwheat-crepes/

Chickpea flour is great for zucchini muffin. There are so many vegan website for recipes without eggs and dairy.

Try to boil the fish instead of putting a batter and fry it (cod filets are nice boiled) and put a bit of olive oil and a sprinkle of parsley on top. Avoid processed meat and just put a good quality steak in a pan with olive oil, rosemary and crystal salt.

It is a vicious circle. You lack, good bacteria , your immune system is weaker, you get more infection, you receive more antibiotics and you are back to square one and it only gets worse and worse.

I have an important piece of advice concerning pro and pre biotics. You can swallow as many pills as you like but if you don;t change the diet, those bacteria will die in no time and no change will last. Take the probiotics, preferably home made, you get far more species, and then you MUST feed those bacteria. Rolled oats, green bananas, cold rice and cold pasta, the green bit of the leeks (roasted in oven is one of the nicest thing to eat, every guest in my house goes banana over it : buy whole leeks, not just the white part, Wash and cut into stripes, dry in a tea towel, put in a big bowl, add olive oil, a bit of smoked paprika or smoke liquid, mixed herbs, crystal salt and mix with your hand. Put in an oven tray in a thin layer, each stripe separated from the other and bake in the oven and repeat until all cooked) , every kind of green with strong fibre.
Do some seaweed crackers by roasting the inexpensive nori sheets from the Asian section at supermarket. I do them more or less this way super quick, easy and cheap but your kitchen will stink!

Add onions, garlic to your dishes and be generous with fresh herbs. For snacks, let him have blueberries, apple and pear with the peel.

Without the diet, you have just wasted money on probiotics. It is like planting seeds in your garden and then putting a big black plastic sheet on top and never adding water or allowing sunshine. . Nothing will grow. Even if you add fertiliser .

You don't need big quantities. One tablespoon a day of any probiotic food is enough and not even every day and double that for the probiotics food. And then a nice mediterranean diet for the whole family.

Some companies can analyse the DNA of the species you have and it gives your an idea of the health of your gut. in UK, you can get a list for 75 pounds with them britishgut.org/faq/ they won't tell you if it bad or good, You will receive a bacterial profile of your sample and a general overview of how your profile compares to that of others in the project. What we are not able provide is medical advice, such as how you should change your diet or what microbes you might be lacking. We are ethically and legally prohibited from giving such advice as a research laboratory " but you can find out that yourself or enrol the help of a naturopath or dietician who specialised in gut health..

Like everything in the medical world, there is a gap between research and discoveries and change in medical protocol. but with internet the access to knowledge is infinite and if you stick to medical papers, your research is valid. Pubmed is a good starting point

But you don;t want to start playing the witch doctor and for that reason, sticking to food and not pills is a safe choice. There is still so much we don't know about the bacteria species and you can do harm by overdoing, especially in a toddler or baby. There are many books on the gut, read them, but caution.

A tiny piece of roquefort (sheep milk) has millions of bacteria. A miso soup ditto. Food that existed 100 years ago and that you can reproduce in your kitchen without an engineering degree.
There is no way I can transform corn kernels into a doritos, no matter how long I try.

As my last word, I repeat CAUTION.