THE TEST RESULTS ARE IN - Am I doing the righ thing?

[Mydreamcametrue]

Hello everyone:  I just needed a few days to take a break from thinking about all this, BUT..... I am just so lost right now and really really thinking that Zach does have a Gluten Intolerance.  The more I read, all the red flags are there.

Update:  We started the Soy milk.  The morning after doing it, he actually had a normal poop.  I was so excited.  He even seemed like he was feeling better.  Well that night....  He has an explosive blow out.  It was diareraha (gosh you think i could spell that by now). 

Well this morning he woke up covered in poop as usual.  It actually leaked through his cloths.  It was green and smelly and like liquid.  He has red welps and a rash on his butt.

Today he was back to his whiny self (even though I think some of this might be his personality) (or maybe not, because I have read that a Gluten Intolerance can affect your moods).  So anyway he had another blow out tonight while eating dinner.  It was again very very smelly and it has tons of mucus in it.  He now has a few little red bumps all over his stomach and the rash still on his butt.

So now I am like SH*T..... More freaken confused.  I want to so so bad, to try the Rice milk, but am SO scaired that he will not get enough fat and protein.  I also really really want to try the Gluten Free Diet, but poor thing, I want him to be able to eat.

So anyhow, I am still researching and if this continures, I am stopping the Soy Milk and trying the Gluten Free Diet for him and myself (as I am the same way with my tummy as he is)...  As far as the milk goes, I am hoping he might take the Alimentum formula again and mix strawberry  powder in it to avoid the bad taste.

Just wanted to give you an update.

Wendy

[Lucysmom]

Wendy -

I also really really want to try the Gluten Free Diet, but poor thing, I want him to be able to eat.

Right now, as things are, it does seem like he is eating things.  By this I mean, he puts food in his mouth, chews, and swallows.  However, once it gets into his digestive system, it is clearly NOT being digested properly and he is NOT getting the full nutritional value from the food.  So only once he is not having terrible poos can you really say that he is eating properly and getting enough fat and protein.  I know you feel like he is getting enough now or would be getting less on an elimination diet, but I don't agree with that because of how his food is presently being "processed" in his digestive tract.   

Green, smelly, mucousy, blow out, liquid poos are NOT normal.  He is clearly suffering.  I don't know what else to say as  I have said it all before.  I do hope and pray that you can start him on an elimination diet with the supervision of the dietician as soon as possible. 

[Mom to M&M]

It sounds like his soy intolerance may be even stronger than his milk intolerance? Like Melissa, I would urge you to speak with the dietician again ASAP and get him on a strict elimination diet. I can't blame him for whining - if my stomach was upset and causing other problems, I'd be whiny too. Big hugs to him and you.

[binxyboo]

Hi Wendy,

I would have to whole heartedly agree with everything Melissa said. If the food that is going in his mouth is coming back out as mucous in his diapers, he is not benefiting from it at all and may as well not be eating it. If he had problems with soy before, it seems as though he still does.

It really does sound as though there is something going on with little Zach, and if it is as bad as you describe, at this point I hesitate to give any advice in case I might say the wrong thing and cause him any more distress than he is already in. I feel that at this point, we have discussed everything and given all the advice we can in all the various threads that are running, and it would be counterproductive to keep saying the same things over and over again. I hope you do find a good medical professional to discuss this all with and that little Zach gets some help soon

All the best,
Michelle

[Diegos Mama]

Hi there:

I've been watching your thread here and I've got to be honest with you here.  How can having a child who's clearly not feeling well, having diarrhea, affected with a rash be any better than him not having dairy?

Dairy intolerance is no big deal.  There is a large segment of folks who are dairy free by choice.  Their argument is that humans are not meant to drink another animal's milk.  If you had a wee infant and you were worried about the rice milk not having enough protein I'd get it.  But there's so many options with an older child.

Please, it sounds to me like you're spinning your wheels.  You need to try things one at a time and give them enough time to make conclusive determinations of what's up.  Many children who are intolerant to dairy are also intolerant to soy as was the case with my son.  We were dairy and soy free for TWO YEARS!  And he eats like a champ, is extrememly healthy and eats gobs of protein a thousand other ways.

A dairy free diet is actually a very healthy diet.  I think you're making this into way more than you need to be. 

I also think you need to find a good doctor, that you trust and follow their advice.  You can't keep going around and around lost in indecision, it's unfair to your child.

Pick one thing to try, then give it a go for at least a week, preferably more.  Keep notes, keep a food log, check all labels, become a food Nazi checking every ingredient. IT'S WORTH GETTING TO THE BOTTOM OF!

[Mydreamcametrue]

Thanks everyone, I really appreciate it. 

When things are better with us, I will update everyone.

I will talk to you all soon (I hope).

Wendy & Zach

[Cassie]

Wendy.. PLEASE try him on Rice Milk.  50-80% of kids that are intolerant to dairy are intolerant to soy. 

I have weaned P to Rice Milk (he drinks 12-16oz per day) plus solids.  He is doing great.  I am adding rice protein and flax oil to the rice milk to help with calories and protein.  PLEASE try this for a week.  If things don't get better, then move on to restricting gluten.  If you try to do to many things at once it is going to get too complicated.

PM me if you need to "talk".

[Mom to M&M]

Great idea Cassie - with adding rice protein and flax oil to the rice milk. And I agree - I'd try no dairy and no soy at all for 1-2 weeks (preferably 2). After that, if you need, you can try gluten free. And like Laura said, it's important to find a doctor you like and trust and then stick with a plan to get little Zach better. Hope it all works out and hope to hear good news from you soon, Wendy.

[deb]

Wow, if that happened so soon after soy, then LOSE the soy ASAP!!!!

As for the dairy, it may well be the PROTEIN of the milk, not the LACTOSE, that's not being tolerated. Even the casein in soy cheese can cause problems for those allergic to milk, even if they can tolerate the soy, because the soy cheese is lactose-free but not DAIRY-free.

Dairy-free probiotics: found this by doing a web search: http://www.relfe.com/acidophilus.html

[Mydreamcametrue]

Deb:  Thanks for the link to the dairy free probotics.  I am going to check the Natural Foods store here and see if I can find some.

Once again Zach is sick   He is on another antibotic, they are treating him for pneumonia. 

I know at this point, some of you think I am the worse mother ever.  But trust me, this is the hardest thing I have ever been through in  my life.  I feel like the doctors are not helping me and I feel worthless.

Today we did see a different doctor though and she did actually act like she really though something was going on.  She is going to review all his blood work results and let me know where I should go from there.  She mentioned having him tested for Cystic Fibrios.  I just hope and pray and pray he does not have that

Tom. I am calling the dietician I am working with and going to Rice milk.  The soy obviosly not aggreing with him.  He had diarehha again tonight. 

We are just going to have to make sure he gets fat and protein somewhere else because he is loosing weight.

Wish me the best and I do appreciate all your thoughts and advice.  This is just very hard for me to deal with because I feel like my baby is never well and I would do anything to make him happy and healthy.

Wendy

[katriona]

Wendy, it's obvious that you care so much about your son. I don't think that anyone thinks you're a bad mother. So sorry to hear that Zach is unwell again. Big {{hugs}} for your little guy.

I would encourage you to think hard on the PPs' advice as well -- it all sounds very sensible, and in tried and tested areas such as dietary habits, where there's great precedent set with babies feeling better off dairy and soy, and indeed some people raise their children without these products intentionally, i personally think that aside from the initial leap and dietary modifications, this could be one of the best things you'll ever do for zach.

if switching to rice milk etc. does work, we can all help you find additional means to incorporate fat and protein into zach's diet. and if it doesn't work, well, we know at least that soy and dairy aren't the culprits. it will take a long time for any blood work diagnoses to come back -- please do be firm with your dietician tomorrow and try the switch asap in the meantime.

thinking of you and your LO

katy

[Mydreamcametrue]

Could all this be due to the antibotics that he has been on in the past 2 months?  4 antibotics in 2 mos.  That is when all the diarehha started.  Before that though he was extremely extremely constipated (would cry in pain). 

I am calling the doctors in the morning and switching to Rice Milk.  It can only help from this point.

[katriona]

it's possible wendy; if so, the probiotics will be a great help in restoring his intestinal flora (fauna?).

as you say, switching to rice milk at this point can only help, if only to indicate whether or not he feels better dairy- and soy-free.

good luck! let us know how things go!

[Mom to M&M]

Wendy, you are NOT a bad mother at all. Like Stacy said, you just are confused and not getting the medical help your son needs. That's why we're urging you to perhaps find a new doctor and definitely pick a plan of action and stick with it as Zach is obviously in discomfort. All the antibiotics certainly haven't helped matters but that's more a symptom of the problem, not the cause of it - i.e. he keeps getting infections and needing antibiotics because his immune system isn't fighting off illness properly, perhaps because of a food allergy. So the probiotics will certainly help but I'm still convinced he needs a totally soy and dairy free diet, at least for now. The constipation in the past is also a strong symptom of dairy/soy intolerance. Like others have said, we can help you get Zach protein and fat in other ways and if his tummy is feeling better he will likely eat more food to help him gain weight.

[Mydreamcametrue]

Thanks Karen: 

I want everyone to know that I have taken in all this advice and trust me have thought it over and over (to the point I can't even sleep anymore).  Your advice is not going in one ear and out the other.  I promise.  It just sucks when the doctors tell you "well, you could do this or that". 

I am starting him on Rice Milk today.  There is a great Natural Foods store where I live and I am going today to get the Rice Milk and I have researched adding the rice ptotien to it.

As you all have said, as it stands he is not getting any nutrients anway (fat) so the rice milk can only help.

Just wondering for the ones that do use rice milk, if you add rice protein to it, what brand do you use? 

I have researched MLO Protein and also Naturade Vegetable Protein - Soy Free. 

I really do appreciate you all!  Thanks! Wendy