My Friend's Grandson Is in the Children's Hospital... Doctors Are Dumbfounded.

We will keep the little one and family in out prayers!!

The Waisman Center in Madison has a wonderful metabolic doctor, Dr Rice I think his name is.They tested my daughter for certain Metabolic diseases and found out that she had a Carnitine deficiency, she is a happy healthy 15 yr old today! Certain metabolic diseases cause vomiting and weight loss and failure to thrive...its worth checking into...good luck and prayers!

Have they tested thyroid levels or had a genetics doctor look at him?

I am guessing this has been checked, but...my son had a similar (though not as severe) issue where he would eat plenty, but lose weight and he had a Carnitine (a protein that helps your body process the fats you take in) deficiency. Other than that, medically I am not much help, but it seems to me that you are looking for ways to help (and feeling helpless not knowing what to do.) I spent a couple of days at a Children's Hospital with my daughter this summer, (and I thank God it wasn't more like so many families have to deal with!) but I was wondering if you had thought of putting together a care package for the parents (books, games, playing cards, gift cards to local restaurants, lotions, maybe a toy or blankie for the little guy, anything to make them feel more "normal.") The hospital we stayed at was great, but I can imagine it can be a very lonely and difficult place even without the added stress and fear of your baby being sick. I am sure the parents (and your friend) would appreciate knowing you care and that they are not alone. Just a thought!

Hi S R -- I have no experience with a problem like this, but if I were the parents I would definitely get a second opinion. I'd go on line and see what children's facilities are most highly rated and get him to the nearest one. (My personal rule of thumb is "When in doubt, go to the Mayo Clinic, although I don't know if infant issues are among their specialties. They are excellent about getting you in promptly.)

L.

Have they ruled out celiac disease? I'm sorry for you. You're in my prayers.
C.

Hello,

I'm sorry to hear about this. I don't have a guess at a diagnosis, but I can give you the name of a Naturopathy Doctor who works with "complicated diagnosis" at Children's Hospital. Her name is Dr. Amy Johnson-Grass, and her private practice is Health Foundations, which is just a stone's throw from Children's. I have seen her in the past, and I know that she has partnered with Children's many times. I would get her involved. People at Children's should know who she is, but don't be shy about contacting her directly.

Here is an article talking about Dr. Johnson-Grass's work with Children's Hospital:
http://www.bastyr.edu/academic/profiles/people/ajohnson-g...

And here is the link to her clinic:
http://www.dramyjohnsongrass.com/healthfoundations.htm

Have they tested for diabetes?

Has he been tested for Celiac disease or gluten intolerance? one in 133 people have Celiac disease. One of the symptoms in children is that they do not gain weight, even though they are eating and appearing otherwise healthy. With Celiac disease the body is unable to absorb vitamins and minerals properly. It's worth asking about.

My 7 mos old is experiencing a similar problem. He is 7 mos and only weighs 11 pounds 11 ounces. The only clue the docs have seen is that a couple of tests came back low on CO2 and something else that gave them the idea he may not be processing his food right so he is not getting all the nutrients out of it. He also eats all the time and is a very happy baby. Nothing overtly appears to be wrong. We spoke with a dietician and she said he is getting way more calories than he even should need so that is not a problem. Currently I have appointments scheduled with a gastroenterologist and with a metabolic specialist. Several tests have gone out that have not come back yet and these are testing for Celiac disease and other gastric issues. Until something changes my doctor and the dietician said to just feed him until he refuses at each feeding. My recommendation to your friend is to make sure that the right specialist has been consulted such as the gastroenterologist and metabolic specialist that we will be consulting with. And also make sure that all the docs involved are pediatric/newborn specialists because babies insides are so much different than at any other stage of growth. We learned that fact because my son has a heart murmur diagnosed at 4 mos of age and the pediatric cardiologist mentioned that a regular cardiologist would think there was tons of things wrong by looking at the chest x-ray but that because he works with children he knows that the x-ray was normal. Anyway, I hope this gives your friend some ideas to check on.

My husband works for Children's Hospital and I asked him if he had any ideas. He says it depends on what tests they have run so far. But he suggested they do a CT scan of his intestinal area to see if he has maybe a short bowel. He was wondering if maybe the food is just going right through him and he is not absorbing it. Just a shot in the dark. I hope they figure it out!

Have they checked his stools for consistency and smell? I mean, do they smell like baby poops or do they smell like milk or formula? Are they fatty or greasy? These things could help tell if food is being digested properly, if there are sufficient enzymes and bile produced and available. There can also be problems with absorption, or the dangerous necrotic bowel syndrome. Make them recheck the CF diagnosis. Does the baby taste salty when you kiss it? Don't hesitate to talk to other doctors and hospitals. Ask them to consult with UW Madison children's, boston, mayo, and chicago and other hospitals and specialists. The best thing they can do is be the best advocate for their baby they can be! Some people just accept whatever doctors say, but the squeaky wheel gets the grease. As a medical student, I have witnessed this many times. Don't give up and move quickly as this is serious! I wish I was farther along in my training to help more... Please let us know how it progresses!

I was wondering if the child has ever been tested for Cystic Fibrosis. I know that is one of the side effects of that disease. My son was the same way after he was born. He was an eating machine but kept losing weight and then we found out with his newborn screening that he had CF and ever since he was put on the medications and physical therapy he is doing awesome and has no trouble gaining weight.

While tests are being done to discover why the wieght loss, Ypou may request breast milk from a milk bank.

http://www.hmbana.org/
http://nationalmilkbank.org/

Have they checked for Celiac disease?

Is he breast fed or bottle fed? He could have a food allergy or a food intolerance/sensitivity. Anything mom eats, he also gets, and if he's drinking soy formula, soy is a very, very common food intolerance.

It sounds like his body is unable to process or take out of the food what his body needs, so that his body is more or less "malnourished." A low BUN score will cause malnutrition because the body gets insufficient dietary protein (yet you state he had a lot of kidney work already done; does that include GFR and creainine tests?). There's also severe weight loss if a person has a magnesium deficiency.

Inborn Error of Metabolism (taken from Wikipedia):
I strongly urge the mother to visit this page of Wikipedia and look at the information it has on (Congenital) Metabolism problems. At the bottom of the page, there are six (6) different charts that categorize metabolic problems. THIS would be where I would look for clues.

Failure to Thrive (taken from Wikipedia):
The physiologic basis for failure to thrive (FTT) of any etiology is inadequate nutrition.
Growth failure is due to an acute or chronic disorder that interferes with nutrient intake, absorption, metabolism, or excretion or that increases energy requirements. Illness of any organ system can be a cause.
Most children with nonorganic FTT manifest growth failure before age 1 yr and many by age 6 mo. Weight is the most sensitive indicator of nutritional status. Testing: Extensive laboratory tests are usually nonproductive. If a thorough history or physical examination does not indicate a particular cause, most experts recommend limiting screening tests to a CBC with differential, an ESR, BUN or serum creatinine level, urinalysis (including ability to concentrate and acidify), urine culture, and examination of the stool for pH, reducing substances, odor, color, consistency, and fat content. Consider malabsorption conditions, such as coeliac disease. Depending on prevalence of specific disorders in the community, blood lead level, HIV, or TB testing may be warranted.

I pray there are able to discover what the little one has.

Please, please check out info about celiac disease. It unfortunately is somewhat hard to diagnose in children. But check out the website. www.celiac.com Basically it means that your child is unable to absorb the nutrients from food, (malabsorption and malnutrition). So no matter how much they eat - they can't or won't gain weight. The symptoms are numerous!! One of the symptoms is gas!! But the solution is simple - a gluten/wheat free diet!!

I know that it sounds awful - but children on a gluten free diet are healthy, growing and gaining weight!

We'll keep him and his family in our prayers!

You said he is pooping, is he pooping more than seems usual? My neice pooped at least 15 times a day from birth. It got to the point where she would begin pooping before she even finished the bottle. Was told there was nothing wrong with her until she turned 18 months old. She was finally diagnosed with cystic fibrosis. She was not able to retain the nutrients from her formula, it passed right through her. I hope this is not the case with your friends grandson, but it sounds like a possibility.

Hi! My cousin was like that. It was really scary, and they eventually classified him failure to thrive--yikes! He had passed all of the initial infant screening that they do in CO to catch genetic problems, but it turns out that the test for Cystic Fibrosis isn't always as conclusive as another that they can do. They tested him for both Celiac's Disease and Cystic Fibrosis, and the second test showed that he was positive for CF. It can affect your digestion because the fluids in your pancreas that allow you to dump digestive enzymes into your stomach get so thick that the enzymes can't make it through, so you are not able to digest foods properly to absorb the nutrients/fats, etc. I know it is a long shot, but they missed it with him, and it sounds similar.

What about pyloric stenosis? Not sure if that's it as I think it's pretty common and would think Children's would figure it out- but my son was diagnosed with it at about 8 weeks... (though not sure if your friend's grandson is spitting up at all?) It was a brief procedure and he was a new child from the moment he had surgery).

Good luck!

Sometimes high calcium levels can indicate a parathyroid condition. I wish this family well and hope the doctors get to the bottom of the problem quickly!

as sad as this may sound, is there a 'failure to thrive' issue?
if mom and dad for some reason dont or cant take care of baby's emotional needs, babies can develop a failure to thrive. babies physically NEED to be held, snuggled, loved, etc... and if for some reasons thats not being done, they will stop growing and lose weight out of depression.

im not saying that this is anyone's fault... if there is a postpartum issue with mom, if mom and dads relationship is somehow suffering, if they are working very hard and not able to be home often... and when they are they are just tired... these are all common and yet can cause baby to feel worried and fail to thrive.
i have no idea how you would know this or figure it out with the doctors.

i pray for this baby as well... and the family involved. whatever the situation, it is scary when a baby seems to have no reason for the health issue.

Do they have pets? Her grandson may have contracted a parasite due to a family cat/dog. After reading how he's alert but losing weight, it makes me wonder about tapeworm or other parasites you can pick up from pets/farm animals.

Due to his high calcium, have they looked at his kidneys/liver/pancreas? I have a dear friend who's 2 month old is going in for kidney surgery because he's high in calcium and not processing things the way he should. Have they done an ultrasound of his organs?

Also, have they looked into food allergies? Another friend's daughter doesn't process lactose well, and did even worse on soy based formulas. Her daughter is now on a prescribed formula, but she's doing so much better.

I hope you and your friend find the answers to your question, and know I'm praying for you. :) Let us know how things turn out! :)