Pediatric Gastro-intestional Doctor or Maybe Food allergies...or Both???

Hi M.,
I took my daughter to Dr. Jack An with Digestive Health Associates of Texas and he was the most amazing doctor we have ever met. He had superb bedside manner and treated my daughter so well. Plus, he was exactly right in his diagnosis and we had been getting the run around from her pediatrician for a while. Try him - I highly recommend him.
Good luck!
M.

I am assuming the rash is all on his bottom? Anyway, a friend of mine that is a P.A. suggested to me (my baby having open wounds on her hiney from too much poop)to combine CVS brand diaper rash cream (the thick consistency of the cream is what was good about the CVS brand) with a Neosporin type cream...seems like she said to mix one more product, but I can not remember what the 3rd product was...anyway, you will get a thick paste to put all over the babys bum to protect it. I just typed one big run-on sentence! Hope it makes some sense.

Hi M......You have gotten some great advice. I definately know what you are going through. I have a 4 year old little guy with Down Syndrome who was born with some severe intestinal issues (Hirschsprung's Disease). He had a colostomy bag for the first 6 months of his life. When he finally had his reversal surgery done and starting pooping on his own it burned his little bottom to the point of bleeding constantly. We tried everything!!! We finally found something that saved our sanity. It is called Ilex Paste. You can only get it on the internet and it has been more than a life saver. I am not sure why physicians don't recommend this stuff for severe diaper rashes - it is amazing!! It is made by a company called Medcon Labs. On the muscle tone issue. It most certainly can play a huge part of bowel control my son too has hypotonia and is chronically constipated, yet has 6-7 loose diapers a day. The sphincter muscles are not able to keep the stool in appropriately and the lining of the colon doesn't push things through correctly. We have gone to Kendall Brown in Frisco....but our surgeon Dr. Herman is the one he will grow out of it....we can only keep praying. Good Luck!!

I am at a loss regarding what might be causing your son's issues, but I do have a wonderful Pediatric-Gastro doctor. His name is Michael Russo and he works out of Children's in Plano (he is in the new hospital at Legacy and Preston). He has done wonders for my son and I would highly recommend him!

M. -
My daughter had a similar problem where she would get upset stomach and diarrhea and we began to suspect a milk problem - turned out, when we traced back to its beginning, she had a bad case of the stomach flu and it wiped out all the good bacteria in her intestines - the ones that process the last of the food and make it poop out normally. So, we put her on acidophilus and sometimes gave her Lactaid (the milk or the sprinkles on her food if it had milk/cheese in it). The acidophilus helped build up the good "flora" in her intestine - that is what finally did it. The Lactaid just made it easier to tolerate the things she really wanted to eat. I changed the way I was cooking - I was a big casserole type back then - or at least everything involved cheese! This was back when she was 2 and 3 years old. She is now 10 years old and has been eating normally for close to 7 years!!!! (Oh, and the downstairs has been working fine for that long too!) :)
Hope that helps. Sounds like you have been through a lot with his health and his twin's health too. I know how disruptive that can be to normal family stuff, but don't let it get to you. Keep looking until you find a doctor or two that you are THRILLED with and TRUST - it makes walking it out a lot easier.
Blessings,
S. L
Mom of 4, ages 14, 10, 8 and 4
Blessings, S.

Not sure who you went to before...but,I would highly recommend Dr. Ogunmola out of Cook Children's in Ft. Worth as a pedi Gastroenterologist. He is wonderful. Mirilax is typically given for kids that tend to "hold their poop" (encapresis) and become constipated. I have a 5 y/o that does this durig the school year. But yes, it can then cause some diarrhes once things get flowing. I think it's amtter of figuring out the right amount to give, may not need to be everyday. There is a bug going around that causes severe diarrhea. My 2 y/o had it off and on for about a month...first watery stools and a bad diaper rash for the first time in his life. I have talked to several other people who have had the smae with their toddlers. YOu can try yogurt and even a probiotic like "Culterelle" to build back up the normal flora in the intestine. I did that and it seemed to help. Sometimes when a kid gets a bug like this, it becomes hard forhim to digest lactose...in milk. The probiotics will help that. Hope this helps. I am a Pedi Nurse Anesthetist with two boys. JM

I am not sure about the internal problems..but for the rash, I have also tried all those expensive creams that were prescriptions, and had to throw them out b/c nothing worked. Someone recommended Lotrimin antifungal cream. You can find it in the athlete's feet section. Try that at least twice a day after a diaper change and you will see major improvements! So sorry to hear about your little guy.

If it were me personally, not sure this will even help.. but I would probably try increasing his fruit intake... bananas, blue berries..(High in antioxidants, healthy). Hang in there....
C.

Have you done a genetic study on your boys? possible they have a syndrome that explains the weak muscle tone and digestive issues. My oldest boy was diagnosed with Ring 18 due to weak muscle tone (he is 6 yrs & still not walking on own), mental retardation, digestive issues, developmental delays, reflux, droopy eyelids, etc, etc. He would get so constipated so we gave him 1/2 of #1 prunes baby food every morning and that kept him regular. If you go to Chidren's, Dr Anderson is good & Robin Langraff, the PA are very good. They also have a Children's Medical Center in Plano off Legacy. Good luck!

I really like our GI doctor, Dr. Ogunmola. He is with Cook's Children's gastro clinic. He is very serious. He talks fast with lots of information. But he is very well read, cares about my daughter, and helpful. Good luck!

Usually the GI doctors don't actually understand so much about allergies. Also, please make sure they test for celiac disease - your story sounds very similar to this lady's: http://whattofeedyourkids.blogspot.com/2007/12/celiac-glu...

tinyurl: http://tinyurl.com/6e7xg7 (if the above is broken)

Also, please read the link in that blog which points to an excellent article on CD (and don't let docs tell you that the info on the Internet is not right - this is a website by physician's and supported by a large physician organization).

The low muscle tone could have been due to you also being an undiagnosed celiac and not absorbing nutrients while pregnant. This may sound far out, but this is exactly what happened with my kids - older never gained weight well and was born with very little muscle and never got fat. That was due to me not absorbing nutrients properly. And, it was 10 years before my oldest was diagnosed AND his pedi thought he tested for everything that could have caused his stomachaches!

This is a genetic disorder, which is why I suggest that you and your boys might have it. Per the article above, the child had both celiac genes which means a 90%+ chance of developing celiac - that's my younger son, who had the rash issues that your boys do. Even after being on the GF diet for almost 5 years, he will get a rash when he indavertently consumes gluten (it can be very difficult to avoid if you eat out).
So, a child gets one of these genes from each parent. So, make sure that they also do the celiac gene test.

You may think past docs tested for everything, but there are still MANY (way TOO many) docs that think celiac is rare, when it's not at all, per this article:
http://somvweb.som.umaryland.edu/absolutenm/templates/?a=... (it's as common as 1 in 25 for kids with symptoms!)

Someone else mentioned their child had a problem with wheat, in this case you should ALWAYS screen for celiac.

Dairy can also be a huge culprit and this sounds like a whole lot more than lactose intolerance, so it would like be a true dairy allergy to the protein - casein. And, other food allergies are also very, very common in celiac kids because of the damage to the intestines, thus lots of proteins from foods that shouldn't be in the blood are and cause all these symptoms. Thus, any child with lots of food allergies should be screened for celiac.

And finally, to answer your ? on docs - Someone else mentioned John Baker, he is recommended by the DFW celiac group: www.dfwceliac.org, so he should have the sense to screen for this. And, he may be the only one of these docs recommended that will do the celiac testing.

My little girl who will be 4 in August has had the same problems. She has been on Mirilax since she was 2 and I have tried to take her off it a few times with horrible results of severe constipation and an ER visit. She got a virus about a year ago and with it got a yeast infection (red, irritated rash with red little bumps on the inside of her thighs) after the week of antibiotics. I pumped her up with probiotics and yogurt and still it really never went away. I finally got a prescription for cream and it seemed to help a little better. As soon as the red, irritated rash went away a few days later it would appear again. It was painful and she was afraid to have a BM and urinate when it was in full bloom. A month ago, after doing a lot of internet investigation, I finally decided to take dairy out of her diet and see what type of results she would have. (Please keep in mind that for about a year she has been sick off and on with sinus congestion/drainage and ear infections with 4 antibiotic treatments. I thought why now at 3 years old would she be getting ear infections when she never had the problem before?) To date, no yeast infections, no major sinus issues and no ear infection. Last week I started putting a kids probiotics in her morning apple juice and a few days later she got a little irration in the private area again. I look on the bottle of the probiotic - it had milk! I know she does not have an allergy to milk it just appears to be an intolerance. It is hard but no more cheese, milk, sour cream or yogurt. She has been drinking Vanilla and Chocolate Rice Milk and Almond Milk. I told her it was Milk that she used to drink when she was a baby and that it does not make her pink - so far it is working. Best of luck.

Just in case you need a great doctor - we have seen him several times (highly recommended) and he was great.

Nicholas Ogunmola, MD - Gastroenterology/Nutrition
Cook Children's (sorry I do not have his number)

M.,
I am so sorry that your son has had so many difficulties. I don't know what specifically might be wrong with him. But, my daughter has had similar issues all her life. There was a time when she was a baby that she had the worst poop and the worst kind of rashes and ear infections. It took many trips to doctors before a diagnosis could be made. But, we finally got one and were able to deal with her syndrome which was quite rare. That's why there was such difficulty identifying it. She went to a grea Pedi GI at Medical City named Dr. Brown. But, I don't think he's there anymore.

My advice is, don't give up on the GI's. Try to get in with one at Children's Medical Center and rehash everything that's happened with him so far. (I used to have a typed summary of medical issues to just hand to new doctors.) I've always had great experiences with the doctors there. They have such broader experience because it's a world class facility. But, you have to be patient with them when they are dealing with a mystery. Give them time to try this or that and then keep going back and give them feedback so they can narrow in on the cause. My hunch is that this is something more than food allergies.

My son is also 3 1/2 with hypotonia. He also can get this really bad diarreah with really hrrible rash. I don't know about yours but it happens immediately after he poops. Its like it burns him. And it will last for days. I have found that creams etc, do not really seem to help. I have to give him benadryl. Usually 2 doses and it will clear up. It is the only thing that works. Try keeping a log of everything he puts in his mouth and when he gets the reaction. Mine was getting it from Juicy Juice of all things. Another kind of dr. to try would be an immunologist/allergist. We did that before the gastro dr. I am not sure how much the hypotonia is in play with that kind of problem. It really does sound like an allergy to something to me. But hypotonia can cause ALOT of problems you cannot see. Good luck and God bless you and your family.

I am not sure if she was your pedi GI, as there are only 2 female GI's in the area, but I see many of Mona Dave', M.D.'s patients and she is an excellent physician. My other favorite GI is Eric Argao, M.D. at Medical City Dallas. All of my parents rave about him, as do medical health professionals who take their children to see him. Dr. Dave' is located at Presbyterian Plano. I am a pediatric occupational therapist and feeding specialist, and it is important to figure out what is going on with your son's intolerance to various foods. In addition, his low tone is going to affect his stooling pattern. Kiddos with lower tone often have decreased gastric motility and stooling patterns. Are you taking him for therapy anywhere to help strengthen his core and trunk tone?

R. Elkin, MOT, OTR/L, CKT

I treat autistic kids and we tell all our parents to put the kids on a gluten and casein free diet. You can find more info about on www.tacanow.org. Constipation and ear infections are so often related to milk but no doctors tell you this. Just try removing milk for a week to see what happens. I'd also get IgE food tests - this is for food allergies. Then I'd get IgG food sensitivity test. Alletess has one you can get for about $85. With autistic kids, for some just changing the diet and getting rid of yeast causes them to recover. Most aren't that easy but some are. Yeast can be checked with an Organic Acid Test - great plains, metametrix or Genova MAP are the best. LabCorp and Quest aren't really useful.

Hi M.,

I think one of your other post said that you live in Flower Mound - but, if you don't mind driving to Plano we have an amazing Pediatric Gastroenterologist ... Dr. Eric Argau with Digestive Health Associates. They are located at Marsh & Plano Parkway - (West Plano) in the Pediatric Surgery Center. I also have twin boys (6 months) and he has been wonderful. His assistant Jesse is also great - very responsive and helpful with my numerous phone calls and questions. The phone # is ###-###-####. I hope that helps and good luck with everything!
K.

Hi! The very best pediatric gastro doc is Dr John Baker ###-###-####. He has offices in Grapevine, Plano, and Dallas. We have been seeing him on and off for 4.5 years and are continually amazed at his ability to handle situations in a calm and reasonable fashion! I would definitely recommend, given the details in your post, that you see him. He might be able to help with the allergy question.

My son is lactose intolerant if he has cow milk it goes in his mouth and straight out his bottom - literaly. The allergists we used is Dr. Deborah Fawcett with Texas Regional Allergy and Asthma she is in Southlake. She was once a pediatric doc and is awesome with the little ones.

My twins CANNOT do wheat. I thought the diarrhea was due to teething. I was giving motrin, teething tabs, and gel. They were so horribly irritable!! Since I have a problem with wheat, I decided to stop giving it to them. All symptoms cleared up...the diarrhea, diaper rash, irritablility, wheezy breathing. My pedi told me wheat, soy, corn, shellfish, nuts and dairy are all highly allergic foods. Try eliminating them out of his diet and see what happens. Allergy to those foods can greatly impact bowl function and stomach problems(especially wheat). Look up celiac disease. The disease can actually cause a break down of intestine, and leakage into the bloodstream. If you're open to it, my pedi in Frisco ( Dr. Deborah Bain ###-###-####) has a special interest in nutrition. She'd be a great resource to help.

My niece has had horrible problems with her stomach and of course they could not find her problem after sitting there for 7 days.

They "think" it may be Chrone's Disease or IBD, gastritis etc.. all this to say we just looked for alternative health products and came across this website that tells you all about coconut oil and its many benefical uses and how it corrects many stomach problems.

It can be bought a Kroger where they sell the organic cereals, etc.. Bought some and I have had this horrible sore on my leg that will not heal with anything ...have had all kinds of prescription steroid creams, tapes, etc..nothing works and the itching is horrible on it...not to mention it looks horrible too on my anckle. It started from a mosquito bite and was healed on another area by a steroid tape a doctor in Ft. Wayne Indiana gave me... but am now in Texas and they no longer have the records of what he prsecribed.

All this to say, I put on the coconut oil on my sore and there is NO more itching, it does not flake or dryout as it did before and I have great hope the antiful, antibacteria, antivirus properties of coconut oil will eliminate this problem for me.

The coconut oil can be used for cooking and has so many healing properties to include diabetes, IBD, eliminates dandruff when used on head, shingles, arthritis etc... and it only costs about 7.00 at Kroger. It helps with weightloss...yes it is not your typical "fat"...read and educate yourself on why it differs in taste. I actually drink the oil and it does not have taste or consistency of otehr oil that would make me gag...

It is supposed to help clear up stomach problems as you will read on the "success stories" people from all over the world write about.

Hope this helps you... I am merely sharing what I have found and this information is not to be viewed as medical advice.

Take care and I wish you well.

http://www.coconutresearchcenter.org/index.htm

http://www.coconutresearchcenter.org/successstories.htm

Just Google for Coconut Oil and you will find much information on it.

I do not in anyawy financially gain from sharing the above web sites.

Elly

Hi M.,
I noticed someone mentioned Dr. Russo, I had him in the past for my son, and he was wonderful, as a matter of fact, all of the GI doctors at Childrens Medical Center were great!! Go right to the best, and they will tell you were to go from there. Best of luck, I feel your pain, my son had a bowel obstuction at 2 weeks old, and we almost lost him, but they took great care of him, and now he just turned 3. I wish I could just tell you how to fix the problem, but I'm sure they can help. There are so many of them and they work together to figure things out. the main number is ###-###-####. Hope this helps, I know the guessing game is the worst. God Bless.

Hi, M.! I don't know how much I can help, but here's what I know...The only pediatric gastroenterologist with whom I've had personal experience is Dr. Lyn Hunt in Fort Worth. She's part of the Cook Children's Network. Her # is ###-###-####. Her bedside manner is a bit dry for my taste, but she comes highly recommended and we were satisfied what our older daughter needed a pediatric gastroenterologist. I do think that a gastro is the type of doctor your son needs, based on the problems you've described. Has your son been tested for Celiac disease? It's a severe food allergy in which his body would be unable to tolerate gluten. The villi in his small intestine are harmed by gluten and, if left untreated, the villi can become damaged and eventually fail to absorb any nutrients. (It's possible he could have a gluten allergy, but not Celiac disease. In this case, his symptoms may manifest in the same manner, but his villi won't become damaged by gluten.) There are only a few labs in the country who do the PROPER testing to identify whether or not a patient has Celiac disease. It can be hard to diagnose and some tests can yield false negatives and even false positives. That's why it's so important to be certain the testing is specific. (I can get you the information regarding testing, I just don't know it off the top of my head.) Per dictionary.com, Celiac disease is "a hereditary digestive disorder involving intolerance to gluten, usually occurring in young children, characterized by marked abdominal distention, malnutrition, wasting, and the passage of large, fatty, malodorous stools." Here's a web-site that gives you some general information about Celiac disease: http://www.revolutionhealth.com/conditions/digestive/celi.... Please let me know how your little boy is doing. Good luck to you!!!!!

P.S. Probiotics are basically vitamins for the GI tract. Our bodies have good and bad bacteria that can get flushed out of our GI tracts due to antibiotic-related (or any other) diarrhea. Probiotics replace the good bacteria and encourage your GI tract to recolonize any good bacteria that may have been lost. Bottom line - a probiotic may or may not help, but it's not going to hurt anything. Most, if not all, are sold over-the-counter. I would recommend one of the name brands, rather than a generic. You're likely to get more strains of bacteria and they're probably better quality. One with which I'm familiar is Flora-Q. I hope this helps!

Hello M.,

great advice here already. I just wanted to mention that for some reason, doctors are very reluctant to tell you ...It's the MILK!... and about blood testing, well it will come back negative if they're not testing for the right antigen. they know some, but not all. (I guess only God knows them all).

Anyways, to make a long story short. my son was having lots of sinus infections. I told the doctor that I thought it was milk. he kept saying that it was just allergies. even went to the ENT. then on my own I removed all dairy, and voila! about 99% less sinus infections. still gets stuffy nose when he consumes milk and if we are not careful a cold will develop into the ocassional sinus infection. and about wheat... eating gluten free won't be easy but you can do it. it includes wheat, teff, barley, rye, US based oats. I buy Mccann's --Irish oats.

in case the boys or anyone in your household have a birthday coming up... gluten free cakes
www.reallygreatfoods.com

I didn't read all the other responses, so this may be duplicate info: Flower Mound Specialty Foods (on Cross Timbers by the Flower Mound Pharmacy) specializes in Gluten-Free foods.

Also, go to abundant health and speak with Jaime. He can also give you some good info.

Good luck! and keep trying until you get an answer to your problem. oh, and google everthing, if anything it will help you ask more questions =) have a great day! ~C.~

Hi M.,

I've done quite a bit of research into food intolerance issues. Things for you to be aware of:

1. The negative Celiac blood test done on your son is unreliable. My blood test was also normal. I had MASSIVE disease process going on. This is a terrible crisis in GI healthcare, since it gives people like you a false sense of security that you have adequately eliminated that as a culprit. I assure you that you have not. A better option is a STOOL test, through Enterolab in Plano. www.enterolab.com. No doctor referral needed. Order test kit, send in specimen, they email you the results. Easy Easy Easy. Read this article by Dr. Fine to explain why conventional GI doctors miss the boat on this issue time and time again and why the stool test is better. https://www.enterolab.com/StaticPages/EarlyDiagnosis.htm

Here is another interesting article on the issue of the need to revise the conventional diagnosis standards:
http://www.celiac.com/articles/21596/1/Is-it-Time-to-Revi...

2. You can also test for other things, especially casein, through Enterolab. Casein is the protein in dairy. Rashes, in particular, are notoriously connected with dairy. www.enterolab.com. Cannot recommend this lab enough.

3. You can try an elimination diet as a cheaper alternative, but this is (a) difficult to do for a long enough period of time, especially for kids and (b) hard to identify connections, since the whole problem with "hidden" food intolerances is that they are difficult to see and connect to the offending food.

4. Be careful of ANY conventional GI doctor advice on this issue, even if they are from Children's Medical Center and seem to be the "best in the business." Doctors don't study nutrition in med school. Their knowledge is extremely limited, unless they have taken it up as a side hobby. Did you see the cover page article in the Dallas Child Magazine this past spring about the little boy who had major food intolerance issues and his GI physician father was rather "surprised" and "enlightened" by the whole discovery of how much food can actually impact your health? Quite an indictment.

5. You might consider Dr. Deborah Bain, MD in Frisco. She understands the body's massive healing capabilities through proper nutrition. www.healthykidspediatrics.com I am not fond of her blood testing method for food intolerances because it tests for IgE or IgG (I can't remember which), and this is an "antihistamine" response. Hidden food intolerances are not "antihistamine" in nature, so her tests may be misleading. Enterolab tests for IgA, which is an underlying antibody response associated with "hidden" food reactions. However she understands that nutrition is important. You can get the Enterolab test results and then take them to her. Tammy Pon MD is a family practice MD in Plano ###-###-#### (she's listed in the Holistic Networker magazine available at Whole Foods) and I am certain that she uses Enterolab. However, she doesn't take insurance. There are others listed in the Holistic Networker. It's pretty hard to unearth these educated people. When you do find someone competent, very often they do not take insurane.

6. Don't let anyone make you feel your son needs to live that way or "settle" for marginal improvement in health. Get on the internet, keep searching and trying alternative specialists and options. Healing is within your reach. Do the research. There is so much available on the information superhighway!

7. Probiotics are the good bacteria in your gut that help fend off disease and promote good digestion of food. A supplement is a great idea for your son's healing, but you also need to eliminate any offending foods or you are throwing good money after bad. Here is an article on it:
http://articles.mercola.com/sites/articles/archive/2003/1...

Sugar is another culprit in assaulting children's guts, since they eat so much of it. The bad bacteria feed off sugar, making them proliferate, causing on overthrow of the good bacteria.

Some probiotics are not very good. Some are inconvenient because they need to be refrugerated. I like Zymogen brand, which I get at Royal Abrams Pharmacy. I used to break open a capsule and put in apple sauce, until my daughter began swallowing it whole.

8. A great website to educate yourself generally, and arm yourself with questions and knowledge when you do speak to conventional physicians, is www.mercola.com.

Good luck!

For a gastro we use Dr. John Baker ###-###-####, VERY VERY nice!! For allergy and immunology we use Dr. Robert Sugerman ###-###-####. Baker is in Plano and Sugerman is in Frisco and Dallas.

Hope that helps

Hi M.,

Have the doctors ever given you an explanation for the "low muscle tone" they had as babies? Sometimes bowel troubles are a result of muscular problems (its muscles that churn the food through). My nephew has a disorder that affects his muscles, and his first symptom was that his GI tract slowed down, so he had infrequent bowel movements. It took about 5 years to get my nephew diagnosed properly, so I know a little bit about how frustrated you must be. Anyway, I have no idea if something similar is going on with your twins, but I thought I'd mention it. Good luck ... I hope they figure it out soon!

Ugh! I am so sorry you are having to deal with this and the mystery of it all!

I would HIGHLY recommend Betty Murray and Jenny Bair, the owners at Living Well Dallas...www.LivingWellDallas.com. Betty is a certified nutritionist specializing in looking at each individual's case and approaching it in a more natural direction. Jenny has had to go through much testing herself finding she has a digestive disease and is a GREAT resource in terms of how to deal with it. They are wonderful ladies and can help SO much! Definitely try it.

Keep going to the doctors as they can truly help, but they can also sometimes seem to be more focused on treating the symptoms than treating the cause with meds sometimes causing other problems. Betty is the opposite and may be able to help. Below is her bio...

Betty’s focus is on Bio-Individuality; each person is unique. There is no perfect way of eating that works for everybody. Every body has its own chemical makeup and needs. Health is accessible through intuitive eating based on the individual knowing that one person's food may be another's poison.

Betty’s practice also recognizes that a person’s relationship with nutrition and food is affected by other factors that supersede the food. Our relationships, self-esteem, exercise, spirituality and career can be a catalyst for health or imbalance. The more satisfying our life is, the less we'll depend on food to fill a void. This is true life changing holistic nutrition integrated with the best technology nutrition has to offer.

Betty is a board certified Nutritionist and Holistic Health Counselor with the American Association of Drugless Practitioners.

If you are ready to increase your health and vitality, you are invited to schedule a Health Consultation with Betty Murray.