hmm I'm not sure if this is the right place for my question, but everyone here seems very knowledgeable so I'll give it a go!

My 10mth old babies are FTT, and had severe diarrhea from birth (which has improved a lot from ~7mths). They've had quite a lot of testing done, all of which have been negative/normal. We recently had some stool tests - I happened to see their dietitian a few days ago so I asked if she had the results. She was very cagey on the results and would only say that there were excess levels of protein in my DD's stool test (even getting that info was like pulling teeth), and that I'd have to discuss it with their Paed (who I'm not seeing for over a week - I'm impatient and hate not knowing stuff!).

While I'm biding time waiting to see the Paed again, I wondered if anyone has some idea what she was referring to (the excess protein levels)?
Thanks for any suggestions

The waiting is always the worst isn't it

Not an expert but thought I'd reply I thought excess protein had to do with milk allergy? I've had 2 our of 3 with milk allergy with the other symptoms you described.

Hope someone else can come along and help you out

...

Ok....we are currently going through this ourselves.

My DD (at 4 months, now 5 months) had a stool sample taken on the 24th April to test for protein in her poo, I understand they grow the test for a little while.....anyway her paed rang me about 10 days later to say hers came back at a whopping 31, he said this was the 2nd highest he had ever seen, the highest was 82 !!! oomg2.gif Normal is less than 1.5 but majority of babies come back between 3 and 6 (this is what our paed told me). The test is called the fecal alpha-1-antitrypsin.

Basically we were told (in layman's terms) that the reuslts meant that DD has "leaky guts" and it can be caused by a number of reasons, our paed listed ulcerative colitis, celiac disease and cow milk protein allergy. For US (well, DD) he was pretty confident that it is a cows milk protein (CMP) allergy/intolerance, due to symptoms and the fact that DS2 also had a CMP allergy/intolerance but it was less severe (he never reacted to my breast milk) and it was also not picked up until 9 months of age.

We saw our paed today and next week I am going to redo DD's stool test as she has now been solely on Neocate for 4 weeks and he thinks that will make a big difference to the test results. Our paed generally goes straight to Pepti Jnr or Neocate and does not go down the soy path as if it is a protein intolerance then soy is pretty similar to CMP and a lot of kids are intolerant to both.

Oh, and I have to add after being fed (partially) via nasal gastric tube for the past month (she wouldn't drink Neocate) ......we are now tube free, in 4 weeks she has come an awful long way !! I am so excited

This has just been our experience and my interpretations, so I would be interested to hear what your paed says and what happens, where are you located (we are in Bris). It would be great to hear how you go next with the paed.

I'll let you know what our next stool test comes in at when we get the results.

Good Luck.

ETA - I just had a look and you are in Brisbane, who is your paed ?? Also if you want to know the results ring and ask, I am sure they will only be too happy to help.
Feel free to PM me, I am away for the next few days but will be back early next week.

OK, excess protein in the stools is a sign of inflammation in the bowels. Many things can cause this, including a virus or food allergies/intolerances etc etc etc.

Given your post, I'm thinking there's probably some food allergies and/or intolerances going on.

My boys levels vary between 15 and 47, for no apparent reason (they live on elemental formula only).

Karla - do you mind me asking....how come your boys sit so high with their results ? Sorry, hope you don't mind me asking, just curios. What does your paed say about the high results.

Thanks a lot for your replies, very interesting!

So it can either mean something, or nothing. Aren't tests ANNOYING, lol.

Fantastic rundown of the test thanks Lesley! From the bit of Googling I've done (if it wasn't for Dr Google half the family would still have issues I swear) I also guessed CMP intolerance or Coeliacs. My two are BF, and at ~4mths I started eliminating things from my diet. Removing dairy resulted in slightly improved poos, but when I removed soy their horrific poos and chronic vomiting really reduced - However their weight gain never improved. Must admit that the only thing I failed to eliminate was gluten/wheat (I have to eat *something*!).
They had the RAST tests for soy/dairy which were negative.

In the last month my DS has finally started to put on weight and is creeping onto the growth chart for the first time, as I'm adding oils etc to their solids. After advice from our dietitian I've reintroduced dairy for the calories, and they're handling it pretty well (my DS can only have small amounts before having diarrhea, DD is better). My DD is still hovering off the bottom of the chart. I'm convinced something is wrong, I wish my DH agreed!
Interestingly, I started having milk again two weeks ago, after avoiding it for months - and have had all manner of health issues ever since. Now I'm wondering if I have some issues with dairy too...
How wonderful that your DD is tube free after a few weeks! Sounds like she's thriving now, I bet you're VERY relieved. The whole "FTT" label is pretty demoralizing. Yes we're also in Bris - I've been seeing Dr Scott Burgess (just getting in to see a Paed was a whole drama in itself). I'd definitely like to know how you go with the next round of testing, hopefully it's all good news.

Karla, good point about the result being affected by ANY inflammation of the bowel - I really want to know what the Paed thinks, argh!

Thanks again for the comments - has given me more things to Google until our appointment

OneMore - The Gastro's aren't sure, but as they are gaining weight, they are holding off on doing a Sigmoidoscopy. One current thought/theory is because we know they are allergic to everything (environmental allergies as well as food and drug allergies), they are having gut/bowel reactions to the dust and pollen etc particles that they ingest through the air, sucking their hands and toys etc.

...

Hi again, we are just back from DD's baptism (it was in Tasmania at her great grandparents church) I am glad to be home, but I swear I am over the vomit (reflux) she would have vomited (or spilled as the Dr's like to call it) on all of her relatives, brisbane airport, hobart airport, the hotel, both the planes (you get the idea ), I am over the smell of Neocate. We are supposed to start solids tomorrow which I am a little nervous about, fingers crossed it all goes fine. I am really hoping it helps to stop (or at least cut down) the "spills".

We have been through this all before with DS2 (the CMP allergy....not the reflux) but he didn't show major symptoms until about 9 months of age and therefore was a bit older and was ok when he started solids.....DD is obviously a lot more sensitive.

Shimmershine - I guess the specialist is talking about a prescription formula ?? Did they mention Pepti Jnr or Neocate Advance ?? My DS2 was on Pepti Jnr to start and then developed an intolerance to that so we went to Neocate Advance until 2.5 due to CMP allergy, Neocate is an elemental formula, all the ingredients are broken down to their simplest form so they are easier for the body to digest. It tastes and smells gross, but you do get used to it . When do you see the paed ?

Karla - Wow, that is really tough with being allergic to everything. I guess the good thing is that they are gaining weight. Do they think the allergy thing is something that they will eventually grow out of (or are they not really sure), so they are totally fed with prescription formula (I remember reading that they are even allergic to Neocate), no solids at all ? can I ask what happened when you introduced solids ie rice cereal or the "basic" introductory solids. You poor thing, you have an awful lot on your plate.

Levity - Yeah, we left hospital 4 weeks ago and DD was drinking between 0-20mls of each of her bottles and is now drinking at least 100ml (sometimes 160ml) of every bottle, she doesn't look quite so little (thin) which is great. It was hard work with the pump and the NG tube and I really feel for people that have to use them long term. We were sure that the tube would have been in for a few months but she excelled herself and put on 600gm in a month so paed said it could come out, I was especially excited as it was her baptism on Sunday and she was tube free (not that I would of minded if it had to stay in). Fingers crossed this month continues with the weight gain as I really don't want to go backwards. When do you see the paed next ?

ETA Will get the next stool test done on Thursday as I won't have to drag three kids with me then !

I thought I'd bump this to see how Levity and Shimmershime are going ??

we have redone our stool test today and I will be interested to see the results as DD has lost weight even being on sole Neocate (ohh, and she has tried plain rice cereal, potato and zucchini), so this past week has been crazy, she has started on motilium (to try and empty her stomach faster), polycose (to add calories), 1.25 strength neocate and is also booked in for a barium swallow. Fingers crossed it all sorts itself out soon.

...

hi guys, alex's alpha-1-antitrypsin levels sit over 100. they reakon after about 50 they cant read more into it anyways, just know its bad. Alex presents as allergic to everything (shes on button fed elemental feeds only, and water) and yet scopes and biospies of her gut are normal.

the major cause of increased protien in the stool is to my knowledge, malabsorbtion. where the gut tract, bowel isnt absorbing the nutrients properly. it is caused by allergy, leaky gut syndrome, lots of causes. some worse than others. Alex is unknown lol.

good luck. its a relief in ways to see so many of us around. was begining to think i was on my own

Karla - have you looked at allergy elimination? We did it with DD for eczema and it was successful. We used a Naturopath at Jindalee. I am taking DS there now for his "allergic reflux" bowel issues.

i was also in this situation. My DS was FTT with chronic diarrhoea and was found to have excess protein. He had a malabsorption issue caused by a bug called Giardia. It is a bug normally picked up from contaminated water or another person. Three days of antibiotics was all it took to kill the bug. Having it at 7 months when the diarrhoea started would have saved me months of issues but the gp kept telling me, it's just viral. Over time the level of protein lowered and while DS is still under the lines at 2 he is only 400gms off now. We used pediasure formula which is meant to be good for weight loss as long as there is no allergies which after a gastroscope was ruled out for us. Hope everyone else has some success!

Wow, there are a few of us out there !!

Shimmershine - we haven't done anything else yet (bar blood and stool tests and diet), we see a paed gastro in July and have a barium swallow booked for Tuesday (depending on results might get to see paed gastro earlier). How is your DD going on the Polycose ?? Can I ask is how much you are giving her and how often ?? I have cut out all Polycose for the past 2 days and DD's horrific...bleeding/weeping nappy rash is clearing up ! So I think the Polycose was to blame We want to up her formula to 1.25 strength but her gut is just too sensitive. One day she will have diarrhea and then next she will be constipated (a new concept for me my first child that hasn't done a poo at least once a day).

Hope your DD is feeling better and fingers crossed her weight is good too. I wouldn't introduce Neocate unless I really had to it really is foul stuff.

Shimmershine, it will be very interesting to see how you progress through the further investigations! Good on you for avoiding weighs - I've done the same

OneMore? I hope the solids go well - it's a nerve wracking time I sympathise with the vomiting - my first two were shocking vomiters, it's awful (although we didn't have to deal with Neocate vomit, urgh!). And wow, 600gm in one month is incredible, it's a huge shame those gains didn't continue How stressful for you all - I really hope the polycose, fortified neocate etc makes a difference. OUCH to the nappy rash!
Good luck for your barium swallow test tomorrow.

lexi11, poor Alex What's the long term outlook for her? Do you periodically retry foods etc?

kim76 how interesting your cause was giardia! Such a 'simple' fix.

We had a follow up with our Paed - he was non-committal on the stool tests, and wants to wait a few weeks and continue on our calorie boosted diet before doing anything further or retesting because they'd both put on weight (my DS is doing well now, however my DD is still failing to put on weight). So, no real news from us! Just biding time until our next checkup in a few weeks. I would like to redo the stool tests, and do more testing for coeliac's too - I'm really not happy with my DD's progress.

my dd1 has leaky gut syndrome we have been trying to get it udnder controll for over a year now it was originally found when she has a poo test(extra protines were found) and was diagnosed after she had a test for leaky gut (i cant remember what the drink stuff was called tooo many tests) it takes around 6hrs she is also cmspi wheat, yeast,egg, lactose,glutimate and surcrose intolerant i have been told once we get the leaky gut under controll her intolerances should die down fingers crossed. her main sourse of food is neocate which is hard for a 2yo that wants to eat everything

i hope youe lil bub is ok and it gets sorted soon for you

...