Underweight, failure to thrive, anemia

[dhero2]

Our son is 12 years old and has had a complicated medical history thus far. He is currently diagnosed with a seizure disorder, failure to thrive, anemia, severe constipation and a possible mitochondrial disease.  His current height and weight are 4'7 and 64lbs.  From birth he has had a "milk sensitivity" (this is what the Ped. GI dr. said), whenever he drinks too much milk and/or eats too much ice cream, yogurt, etc. he gets blood in his stools and sometimes mucus.  It also aggravates the constipation issue.  He currently takes Colace (100mg.-1x/day) and Dulcolax (10mg./1x/day and on weekends it increases to 20mg./10mg am and 10mg pm).  He is also on Keppra and Lamictal for seizure control.  His other meds include Albuterol, Rhinocort, and Allegra.
We are concerned with our son's weight and, of course, other medical problems.  However, the GI doc. says we are doing a good job.  He was diagnosed with anemia, failure to thrive and severe constipation in Sept. '07.  In July '07, he weighed 69 lbs. and has not gotten back to baseline.  He was on Topamax last summer and his neurologist and GI docs feel this is where the anemia, failure to thrive and constipation issues came from.  Although his hematocrit levels have come up significantly (he is now at 40) his iron level has not (currently a 7 at last check - Sept. '08); he is a very poor eater; has food sensitivity issues (does not like any foods that soft, or a "mushy" consistency i.e., applesauce, oatmeal and the like).  The Nutrionisit we saw tried him on several different supplements Pediasure, Boost, Ensure, etc. all to no avail.  He hated them--vomiting, gagging, he just couldn't stand the taste.  He doesn't eat many vegetables, but will eat salad, carrots and corn.  He likes only expensive meats, filet mignon, steak, no burgers, no hot dogs, eats chicken, turkey, no cold cuts at all, eats only peanut butter no jelly, can't have milkshakes because of the sensitivity issue and refuses to have the Carnation Instant Breakfast.
We're at our wits end and don't know what to feed this child.  We are concerned as he will be 13 in March and don't see much progress with weight gain or getting back to his  baseline.  How long should this be let go?  Meaning, we are concerned that his weight is not up, his blood levels still show low iron, but we're being told we're doing a good job with him.  Yes he has gained weight but he is by far the smallest child in his class and the children say things all the time.  The Ped. GI doc mentioned tube feeding at one point but it has not been mentioned again.
Any suggestions would be very helpful.  Thank you!

[webcrystal]

You haven't posted for awhile so I don't know if you problem is resolved but....

Just curious if they tested your son for either Celiacs or a Wheat allergy? (also for endocrine disorder or pituitary tumors).

My son (when he was about two) had slipped from 50% percentile on height to off the charts (like below 5 ot 3%).  He also had weeping eczema.  He was undergoing authorization for growth hormone therapy when we took him off wheat for his eczema. At some point he had an EGD which was neg. (supposedly) for Celiacs disease but did show some inflamation in his esophagus (but apparently the inflamation wasn't important .. uh yea right) ...anyway.. after taking him off wheat he started to grow (rapidly since he was young).  It was like a godsend for him.  Today he's back up to around 50% for height (but now he's chunky go figure ;)  ... also it is common to have malabsorption issues, growth problems and anemia with Celiacs. (other symptoms are diarrhea (alt.constipation), stomach aches, blistery rash (commonly knees, elbows), and foul smelling stools).  Because the disease damages the intestines almost all celiacs cannot consume milk or milk products.  It is a pretty underdiagnosed disease especially if you don't present with what they feel are classic symptoms.)

anyway my point is that IMO (and I am NOT a doctor) is that you might try a gluten free / casein free diet (it shouldn't hurt as you don't really NEED wheat regardless of what (some) doctors say = many people eat gluten free and are just fine). (gluten is wheat/barley/rye and casein is found in dairy products - wheat also irritates the stomach and so can milk if he has problems breaking down the proteins).  also - no offense but your nutritionist is not very well informed -- there are nutritional supplemental drinks that are not milked based (all you mentioned are) - they gave my son a non-milked based product as he has a milk allergy.  For fiber there are drinks add ins (like those little packets you add to water) that contain fiber - different flavors like lemonade etc. (just remember when adding fiber in start slow or you'll get him backed up also you may not be able to give if he's taking Colace (laxative,etc).  they are usually used for dieting but you are looking for the fiber aspects.

For trying to put weight on ... you said he doesn't like applesauce but will he eat apples (or other fruits)? They typically have a lot of fiber esp. if they have edible skin.  For apples you might try a variety .. and if he doesn't like the "insides" see if he'll eat the skins with a bit of the inside (I do when I peel my kids apples).  The skins have most of the nutrients. and it's pretty crisp (criper if colder so might want to put in fridge).
A good source of fat and nutrients is avocado (but it's mushy)... does he eat sauces like spaghetti sauce? you some times can bury vegetable into other foods without them recognizing it.  Also recognize that many vegetables do not need to be cooked - although they are traditionally. Like yellow crooked necked squash and zucchini (you can slice like cucumber and dip in italian dressing if need be if he likes).
There are other "milks" rather than cow or soy.  Almond, oatmeal (good on cereal), and rice.  You can even make at home if there are no stores close to get commercial grade.  Another type of milk you can try is goats milk as the proteins in that are closer to human type milk and might be easier to digest (but I'd go with the plant based ones myself).  If he does like milkshakes you can try to make a protein drink using a rice based protein (body builders use them)- you can even use rice protein to sneak into other foods.like in scrambled eggs or pancakes (use a gluten free recipe).
I also echo other that mention digestive enzymes they may help.  
Also if he can swallow pills you can try to have him take Omega-3/6/9 they are essential fatty acids that he may be deficient in.  If he can't take pills they have liquid forms.  If he can't have milk make sure he gets a good source of calcium like broccoli and spinach (eat them raw if mush is a factor). Salmon and sardines are excellent sources also. Nuts and olives are an excellent source of (good) fats and can help put some weight on. Almonds are said to be good for the stomach.  I personally like walnuts and pecans.

If you do try gluten free you have to be diligent since wheat is in many things even hidden (bread, soup thickeners, flavors).  

also I'm assuming he takes a vitamin? there are gummy vitamins, pills, liquid, and some by one vendor that come in capsule form but can be mixed in food easily because they are superfine powers.

Anyway I'm writing a book lol.. if you want to try it or want information on finding some of the things I mentioned please feel free to email me and I'll email you back.

I hope he gets better...

[enzymelover]

    There is no way to force a child to eat the way you want them to, when medical issues such as your sons is the problem. Only someone who has dealt with Sensory Integration Disorder problems, or lived with a child with a hormonal or allergy-caused food sensitivity can really understand the scope of this problem and the frustration and worry it can cause.
I've been there.

Intestinal healing is primary to fixing this problem. My son's nutritionist ordered a gastrointestinal function test, which reveals specific bacterial imbalances, parasites, fungal growth, the presence of drug-resistant genes, fatty acid imbalances, inflammation, microbes, immune factors, and fecal pH.
She also ran both urine and serum amino acid tests, which showed my son's specific nutritional deficiencies, and an organic acids test, which shows possible neurotransmitter imbalances, oxidative damage, fungal growth, detoxification problems, etc. Oh, and also an IgG Food Antibodies test, which showed us what my son's immune system was reacting to, and to what degree. Among other things, mustard came up as an allergen for him, which I never would have guessed.
So, I have a lot of information in my hands about my son's inner workings, and a treatment outline for his problems. This is very empowering to a worried parent!

You might ask your nutritionist, about these tests, or find another nutritionist who knows how to read them and explain them to you. Not every lab does these particularly sensitive tests. (Mine were done by Metametrix, plus I also had another Naturopathic Doctor run tests through the Great Plains Lab).

I highly recommend these tests. (and of course, digestive enzymes)!

Best Wishes,

Enzy

[dhero2]

Thank you Enzy for all your compassion and comments.  The other comments regarding "forcing" a child to eat is unwarranted - I believe.  Walk a mile in my shoes and then do not judge or assume I haven't done my job as a mother.
Unfortunately, I have not had the time as of yet to get the book you suggested. However, will be doing so soon.  Our son just had an endoscopy and colonoscopy and we are awaiting official results.  The initial results were blood found in the stomach and an enlarged vein with no known origin.  The GI specialist said unfortunately this leads to more questions instead of answers that we were hoping for-duh.  It's very frustrating!  He has lost more weight-now 62 lbs. and will be 13 in March. We took him to Cleveland Clinic where they tested him for "everything under the sun" regarding neurogenetic/neurometabolic disorders.  The doc there also suggested we take him to an endocrinologist--yet another specialist. To evaluate his poor growth.  Hopefully we will have answers to all these mysteries.
Just wanted to thank you for your helpful information.

[enzymelover]

DO NOT GIVE YOUR SON SOY MILK, OR SOY ANYTHING. SOY CAUSES GUT DAMAGE.  MY SON"S ENDOCRINE SYSTEM HAS BEEN DAMAGED BY SOY. HE IS NOT UNIQUE. EVERYONE IS AT RISK.

I apologize for the outburst. This is the one thing I am passionate about (food-wise). My son was constipated for years. He was on soy infant formula, then soy milk, then soy protein "meats". He was diagnosed with soy allergy by age eight. We took him off all soy, but his health continued to deteriorate. I went online and learned the truth about soy. He was so ill. I took him to an endocrinologist. He had stopped growing and was cold all the time. He had an MRI.
Now he has hypothyroidism, adrenal insufficiency, and a pituitary cyst. Again, he is not unique.  Read  The Whole Soy Story  by Kaayla T. Daniel, PhD, CCN.  My son's nutritional deficiencies, endocrine maladies, and behavioral changes are all explained in this book.
Soy acts like a drug. Researchers have coined the term "Developmental Estrogenization Syndrome" to describe the increased susceptibility to hormonal diseases and the altered behavior patterns in children, from the ingestion of soy. The marketing of soy infant formula should be banned.

I used to be a proponent of soy products, until my son was injured and I began to uncover the truth. Children especially should never, ever be given soy products. Soy is a dangerous "food".

If your son is eating turkey, chicken, steak and peanut butter,(which can also cause problems, by the way), he is getting enough protein. It sounds like he needs digestive enzymes, and probiotics.  My son also developed the "picky eater" food sensitivity issues, and these products healed his intestinal tract. He will be 13 in Nov. and is only 4'5". He was extremely thin before the enzymes and other nutritional treatments. He is gaining weight rapidly. (A little too rapidly. I hope this isn't another hormone problem).

Please check out the enzyme book I mentioned in my previous post. It explains how and why enzymes can benefit your son, and it has other important digestive health information. Enzymes are effective in controlling allergies too.
Oh, and Slippery Elm is completely safe and very healing to the digestive tract. My mother healed her diverticulitis with it. Ask about it at your health food store. It's wonderful stuff, if you can get your son to take it.

I wish you well.

Enzy

[Renee Radenberg]

His weight is just below the 5th percentile and his height is on the 10th percentile for his age. Suggest making ‘milkshakes’ out of soy ice cream and soy milk blended together or soy smoothies (soy yogurt, soy milk and frozen fruit). All soy products are milk free because they come from plant and not animal source, however, he will get additional calories and protein for weight gain. Use chocolate or vanilla favored soy products so there is not so much 'soy' favor and it will taste like a real milkshake / smoothies. Has your doctor tried 'Benefiber' for his constipation? It is natural, dissolves in the food, and has proved to be gentler on the colon. It is a good sign that the Hematocrit is going up. That means his Iron stores are improving. He is eating foods to increase Iron - steak, chicken, turkey, and salad. Suggest added raw spinach, dried fruits, and nuts to the salad to increase iron. Beans are an excellent source of iron and can be added to salad or eaten in soups, as a spread, mixed with pasta / rice (not too much rice due to it constipates), in tacos, etc. He should drinks orange juice at meals or have a vitamin C food source (citrus fruits & juices, strawberries, cantaloupe, watermelon, tomatoes, broccoli, pepper, kale, sweet potato, & white potato) at meals to help absorb the iron in the body. Let him have peanut butter sandwich without the jelly. He is getting protein that way and calories which is great. Hoped this helped you.

[Kwalk014]

The following is a list of iron rich foods that could help with the anemia.

lean red meats, including beef, pork, lamb
greens, including collard greens, kale, mustard greens, spinach, and turnip greens
vegetables, including broccoli, swiss chard, asparagus, parsley, watercress, brussel sprouts
chicken and turkey
nuts
egg yolks
dried fruits, such as raisins, prunes, dates and apricots

Chicken is not that expensive and peanut butter is calorie dense so give him more of that to get his weight up.

If his problem is as serious as it sounds, maybe you shouldn't cater so much as to what he likes and strongly encourage him to eat foods that will get his weight up. It sounds like his low weight stems more from a lack of eating, aside from the problems associated with milk sensitivity.

Most kids are picky eaters. It's the parents job to step in and encourage (force?) a healthy diet. Try mixing in foods that he doesn't like with foods that he does that will drown out the taste of the others.

[dhero2]

Sorry I took so long to respond.  Thank you so much for your input.  No the GI doc nor nutrionist did any testing for fungal or bacterial overgrowth.

[enzymelover]

Your nutritionist suggested Boost and Ensure? They're milk products and your son sounds like he has an allergy to milk protein. Undigested milk protein is damaging to the intestinal tract.
Please check out this book  Enzymes for Digestive Health and Nutritional Wealth by Karen DeFelice. I bought it online. This book helped my son recover from his digestive problems. Whatever your son's condition is, he needs a digestive enzyme, something like the Peptizyde or Zyme Prime, talked about in this book to help his body break down and properly absorb the proteins from his food, and the food sensitivity issues will disappear. Enzymes are little miracles.  You simply must read this book. There is so much info about intestinal healing, I really wish people would hand this book to their doctors.

I would find a new nutritionist too, by the way.
Did your nutritionist do any testing for fungal or bacterial overgrowth?

Hope this helps.

Enzy