Food ideas to fatten up failure to thrive toddler (X-posted on toddlers) - Page 2 - Mothering Forums

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#31 of 45 Old 10-17-2007, 02:01 PM
 
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Most domestically grown oats are contaminated with gluten. McCann's is supposed to be OK, but my son reacted to those as well. It depends on the level of sensitivity, I guess. I would forget about oats for awhile, and then trial them to see if they are tolerated.

<>< Alison
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#32 of 45 Old 10-17-2007, 02:22 PM
 
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Most domestically grown oats are contaminated with gluten. McCann's is supposed to be OK, but my son reacted to those as well. It depends on the level of sensitivity, I guess. I would forget about oats for awhile, and then trial them to see if they are tolerated.
It isn't necessarily a gluten reaction to oats, DQ2s (one of the Celiac genes) actually can have reaction to the oat protein. It's a totally separate reaction set. My dh and 4 children can not tolerate oats. It gives them all diarhea and only 1 is CD positive and 1 is CD most probable.
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#33 of 45 Old 10-17-2007, 03:48 PM
 
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Rice noodles are tasty. (just putting in a plug for gluten free)

I still think he has something underlying this all.

Where do you live? Is there a pediatric center that you can go to? Somewhere where there are specialists?

Michelle: wife to J, mom to M (2001), E (2003), C (2005), S (2007) and O! (2009) And someone new in 2011!
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#34 of 45 Old 10-18-2007, 01:01 AM
 
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It's great to hear all your stories! Evan just had his cd test on Monday so we're waiting the results. We had started GF when I realized the DR might want to do more tests if the test was + so we're back on gluten till we hear back. If it is - though, we'll go GF and see what happens. If it's + I think we'll do the test on my 4yo too as he's a huge bread aholic and his poo lately has been less pleasant. Evan has also had a ton of potty accidents lately after being potty learned for 4.5 mos now!

Check your local grovery store too. Our local (hy-vee) has a great gluten free list on their website of all their house brand stuff that is GF. It's a great help and helps my check book too b/c I don't have to spend all my $ at Whole Foods on stuff I could buy there for cheaper. They also have a huge GF recipe list too.

Jennifer, LPN and nursing student, Doula, CPST, and VBAC mama x3 to
AJ (5/03), Evan (12/04), Ilana (11/06), Olivia (2/09), and Unity (8/2012)

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#35 of 45 Old 10-24-2007, 03:12 AM
 
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Because if some of the comments in this thread about cystic fibrosis, I just wanted to say something. CF can never be ruled out completely. Based on the symptoms you have described, it may be worth looking into a little more. I am not sure how your dc was tested, but there are many people who test negative for cf (thru sweat tests) who later learn that they are actually positive via genetic testing. More and more people in the cf world will tell you that the best way to get peace of mind is thru genetic testing via Ambry or Quest. These two labs are the only ones who test for all KNOWN mutations (over 1300!). Even then, there is always the possibility of carrying a gene that has not been identified yet. That is why it can be so important to look at the whole picture (all test results, symptoms, health, etc). CF is a very complex condition and it is not always easy to diagnose. Not everyone with cf will exhibit the same symptoms and there are many who have barely any symptoms at all. It can affect people very differently. Anyway, I hope this is really not the case for your precious child, but I had to say something.....CF most definitley cannot be ruled out completely until full genetic testing has been completed (and that's not even 100% for sure either). I hope you get some answers soon and I wish good health to your child always.
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#36 of 45 Old 10-24-2007, 01:17 PM
 
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I concur with the extra fats - butter, coconut, fish. Does he like smoothies? Learning Factors is a pretty good extra to add into smoothies. I'd make the smoothies with half and half too.

Can you give him some probiotics? Actually, you could even try culturing half and half with kefir grains (it works, trust me) and using that.

Sometimes a person is colonized by intestinal bacteria that just isn't as good at getting out the nutrition in your food. Kefir could help. I would also try giving him (my favorite product for this) Effective Microorganisms liquid. To encourage a better quality of intestial bacteria to compete/replace what he has.

http://www.scdworld.net/category_s/12.htm I don't bother to "activate" it, I just use it straight myself.
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#37 of 45 Old 10-24-2007, 01:43 PM
 
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I understand your fear of taking your child off of his favorite foods because he is really picky. I have an incredibly picky eater, too. He loves sweets, carbs, etc. This summer I was at my wits end about what to do with him. He has bathroom issues, slight behavior issues, was getting headaches, etc.

I took him to the ped and he said he thought DS was getting migraines and I should put him on a migraine med that he would take for the rest of his life. I asked if there was a possibility that it could be food related, he said and I quote, "It probably is food related, but it would be too much work to figure out what food it could be so this will be easier." I didn't like that answer. So I took out all food dyes out of his diet. He has been so much better even just taking dyes out. It has been so hard, though, because he loves to visit his grandparents and eat all sorts of dyed foods (this is when most of the migraines happened too). Behavior issues were related as well.

I also found that the bathroom issues were caused by a milk intolerance. He doesn't really like milk very much, but whenever he does drink a glass, he ends up with diarrhea. He used to drink a lot more milk and I have noticed that since not drinking it very often, he is much better.

Anyway, going back to being picky, my mom always says, "if a child gets hungry enough, they will eat". That is the best advice she ever gave me. He may not eat much for a while, but he will get hungry enough and he will start trying new things. Once you get the gluten out of his system, you may find that he will want other things. Sometimes it is candida yeast in the gut that makes you crave certain foods. It is going to take time and is going to be very trying, but it is going to be worth it to try. Gluten allergies are a big thing. If this is the problem, you are going to be so glad that you tried it. And if it is not, then you will be able to check it off your list and move on to the next possible culprit.

It is hard when you have a child with food intolerances. I have spent so much time worrying and researching what to do to make my DS healthy. It is exhausting, but you keep plugging away. I just figure my DS's health is worth every bit of energy I expel trying to figure out what works. I hope you find out the problem soon.

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#38 of 45 Old 10-24-2007, 03:31 PM - Thread Starter
 
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Originally Posted by tallmomma View Post
Because if some of the comments in this thread about cystic fibrosis, I just wanted to say something. CF can never be ruled out completely. Based on the symptoms you have described, it may be worth looking into a little more. I am not sure how your dc was tested, but there are many people who test negative for cf (thru sweat tests) who later learn that they are actually positive via genetic testing. More and more people in the cf world will tell you that the best way to get peace of mind is thru genetic testing via Ambry or Quest. These two labs are the only ones who test for all KNOWN mutations (over 1300!). Even then, there is always the possibility of carrying a gene that has not been identified yet. That is why it can be so important to look at the whole picture (all test results, symptoms, health, etc). CF is a very complex condition and it is not always easy to diagnose. Not everyone with cf will exhibit the same symptoms and there are many who have barely any symptoms at all. It can affect people very differently. Anyway, I hope this is really not the case for your precious child, but I had to say something.....CF most definitley cannot be ruled out completely until full genetic testing has been completed (and that's not even 100% for sure either). I hope you get some answers soon and I wish good health to your child always.

Well, I've got to say I have lost all faith in the medical world. Not only have they been completely unable to figure out what is wrong with my son, now I find out that all the testing he had done (and the stress it caused all of us) was basically for nothing because they can't rule anything out completely. My husband works in a lab (testing water and soil samples) and has told me many times that tests aren't foolproof (lots of false negatives, human error...) and our son could still have any of the disorders they supposedly ruled out, but I just chalked that up to him being his normal pessimitic self. But...now it looks like he was right. Our pediatrician guaranteed us that the diseases and disorders he was tested for were definitely ruled out. Sometimes I feel like no one is taking this seriously enough. What is it going to take to get some straight answers??? Argh!!!
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#39 of 45 Old 10-24-2007, 03:53 PM
 
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I feel your pain. It took us 3 1/2 years to get a dx of CD for our son. I had taken him to different doctors and would go through periods of giving up and just doing what I could to make him better.

In the end I was on the right track, I was just missing the connection (I knew bread upset him, some crackers, but not the oat cereal at first, I didn't get it b/c not all gluten/ wheat foods were always giving him the problem).

We did not follow through with complete biopsy for this son he was too sick. I firmly believe if we had not gotten a doctor to know what was going on with him he would be dead right now. His metabolic tests indicated muscle wasting and his heart developed some problems -- muscle wasting could mean he was using up his heart muscle. No doctor told me about the tests indicating muscle wasating, I read all of his labs, looked up each test, and had some wise help from a gluten free forum community - braintalk, then neurotalk, and now glutenfreeandbeyond.

It is unfortunate that medical doctors are not equiped with all the answers - mystery diagnosis is one of the first shows to really show that patients must be their own advocates for treatment.

I recently went through the ringer for my 4th child to be tested and the doctors failed to test him properly. The lead researcher in pediatric CD no less!!! I thought going to the best was the best for my son, oh, how wrong I was. The guy didn't do the standard CD panel!!! It's his panel, he pioneered it!!! I am so mad, still mad about this (it happened in July).

So, I am doing what I always do, I'm doing what makes my child well. I have 2 children on a 100% (or as close as you can get) GF diet, one of them is on a restricted DF diet until his gut heals and hopefully he will be able to tolerate dairy again.

The CD tests are highly inaccurate, I knew this going in, but I also knew that the combination of tests including metabolic panels would show me something. I didn't get anything I asked for. I did find out that when the drug exist to "cure" CD then the tests will become more accurate b/c funds will be made available to research better tests. OMG straight from a Fellow at the Celiac Disease Research Center in Baltimore.

I'm done with docs. I know what's wrong. There are a few good ones out there, but not many. I've learned over the years to use them for what I need done, like tests. I really am still very hurt and angry that this doc did not do the tests I asked for and tried to tell me my ins would not cover it -- bah, the insurance paid for all of our family to be tested. It was a line of bull.

I'm sorry you can't find out what is wrong. Take a break from it. It's the only way I coped. Pray, you will find someone that knows how to help your child.
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#40 of 45 Old 10-24-2007, 05:35 PM - Thread Starter
 
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We did not follow through with complete biopsy for this son he was too sick. I firmly believe if we had not gotten a doctor to know what was going on with him he would be dead right now. His metabolic tests indicated muscle wasting and his heart developed some problems -- muscle wasting could mean he was using up his heart muscle. No doctor told me about the tests indicating muscle wasating, I read all of his labs, looked up each test, and had some wise help from a gluten free forum community - braintalk, then neurotalk, and now glutenfreeandbeyond.

Ok this scares me immensely. What tests do I ask for to test for muscle wasting?? My son's energy levels have decreased in the past few weeks. He has big bags around his eyes even though he is sleeping as much as always. His cheeks are sunken in. He is asking to go to bed some days at 5:00 or 6:00 instead of his normal 7:30. He looks awful. If he gets any thinner he will disappear. I am calling the pediatrician tomorrow to book an appointment for next week and am making a big list of things to discuss with him. I have started tracking every calorie and fat gram that goes into his body to prove he should be gaining weight based on what he is eating. I already know his protein is more than adequate because he gets a fair bit of dairy. I am having his CD test redone, though will likely try a gluten free diet even if it is negative. I want all his organ functions and bloodcounts redone. What else?????????????????????????????
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#41 of 45 Old 10-24-2007, 05:53 PM
 
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Creatine
A full metabolic panel - albumin, prealbumin, creatine, and a few others. It shows how the body is absorbing nutrients, creatine is specific to muscle wasting as in the body is not absorbing food and uses it's own muscle for fuel. I have forgotten if that is a H or L level that indicates that.
I believe the others in the panel might be iron, vit K and vit D -- which my son was fine on all 3, but the other tests showed he was starving to death.
I didn't learn all this over night. IT took some months. It also took my posting his results on braintalk and having other moms who have btdt take a look and advise me what to go search.

But Creatine freaked me out the most. It was the most telling tests I have in my hands aside from the CD panel which points toward CD.

I think the point at which I began my last hope searching was when I took a photo of my then 3 yr old and 1 yr old in the bath tub, she was so healthy looking and he was emaciated. It was very clear at that point he was sick and I needed to find the answers.

I happened to be in a new pedis office for my dd, who needed eye surgery. I had to take them all w me for her pre op appt. The doc noticed ds2 and he was banging his head on the wall. I told her some of what was going on and she asked if I would bring him back with his records, I did and she looked everything over, listened to me and said either CF or CD. We did the CD tests first and they came back negative. She was really stumped.

What she didn't know was that I was learning he needed a complete panel. And the more I read the more I knew this was it. So I took him to a Pedi GI, who did the complete panel and the 2 docs together ordered the metabolic work ups, the vitamin work ups, etc. It was 2 1/2 months from the time Pedi said CD, to the time we actually got the right tests done. Turns out ds2 is IGA deficient which skews all the Celiac tests but 1 (then, there are 2 on the IGG now). Pedi would have no reason to know this fluke. The IGA total serum test is dependent on the lab that does it. DS2's levels were so low they could not registar an IGA based CD test, but on that first lab his levels appeared normal.

He was already DF and GF changed his life within a week. The way it all happened was so "fate" like.

The only reason this doc had CD on her radar is that she has a patient whos parent is Celiac and the patient is GF due to symptoms alone, no testing. If it were not for that, this new pedi might have missed it too.

I think trying an elimination diet might be helpful at this point. I was just about to do one when the Pedi said CD. She saved me the trouble. It's hard, but I don't see any other way to know if it is a food or something else.
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#42 of 45 Old 10-24-2007, 07:58 PM
 
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http://www.westonaprice.org/children/picky-eaters.html

Maybe that page will give you some ideas. I do suggest trying to get him to eat lots of good fats like organic butter, coconut oil, flax seed oil, good quality fatty meats and then push veggies with butter and fruit smoothies with fats added. We try to avoid grains in this house. The only grains we eat here is oatmeal with lots of butter.

HTH. Good luck with everything.

ps. kids with asthma/allergies are known to be smaller than kids without those conditions
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#43 of 45 Old 10-26-2007, 12:24 AM
 
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first off

secondly, are you nursing your newborn?

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Originally Posted by tylerdylan View Post
Luckily he is home now with me as I am on maternity leave for a year and is rarely sick now.
just a thought, have you thought about feeding your ds breastmilk to help him get through this time until you figure something out (maybe pump)? make sure you take gluten out of your diet before you pump for ds. you could add your milk to a variety of foods (i.e. smoothies, etc.). as you know, breastmilk is very high in calories and fats - just what your son needs.
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#44 of 45 Old 10-26-2007, 03:27 AM
 
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I feel like I've told this story a dozen times on MDC, but my son gained almost no weight from 4-9 mos, and I went off gluten and he gained 2 pounds in a few days. He is still on the small side, but I couldn't believe what a huge difference it made. If it were me, I think I'd take him off immediately to see what a difference it made. I don't buy the celiac testing...I just don't think we know enough or that it's very accurate. I know it's so scary when your child is not growing. Good luck!
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#45 of 45 Old 11-21-2007, 07:21 PM
 
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Just came across this thread and was wondering how your little one is doing. Any updates?
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