Thursday, August 18, 2011


Patient A:

Symptoms: over a month of diarrhea, skin irritated on his bum to the point of bleeding, inability to tolerate soy drink, inability to tolerate milk, displaying signs of pain over the course of several weeks, and increase in reflux akin to vomiting.
Onset of Symptoms: July 5th, 2011
Diagnosis: UNKNOWN
Course of Treatment: stool sample, blood draw, sweat test for CF***
Previous Course of Treatment: put back on Alimentum specialty soy free and dairy free formula. Will move to almond, rice or coconut milk combined with calcium and vitamin supplements.

Patient B:

Symptoms: lack of appetite, distension of abdomen, pain sending us to the ER Saturday night, continue of diarrhea, continued inability to tolerate milk.
Onset of Symptoms: June 19th, 2010
Diagnosis: UNKNOWN, but positive for high amount of eosinophils in stomach and colon.
Treatment Plan: sweat test for CF***, small bowel barium follow thru, a new medication to stimulate appetite. Depending on the way the tests work out, after 3rd birthday will start gluten free diet on top of the diary free diet.
Previous Course of Treatment: biopsy, colonoscopy, endoscopy, celiac blood test negative, negative for IgE, negative for antigens for celiac, negative for food allergy scratch test, no excess fat or sugar in stool, no excess of sugars that ferment and cause gas in bowels, no reaction to steroids, no reaction to anti-histamine also used for appetite stimulant, uses antacids, used antibiotics to rule out giardia, C dif, and cryptosporidium, been on a diary free soy free diet, and then moved to just dairy free.

***To see an explanation of CF, click here. We did the sweat test today, which is what the pictures are from. Both Kyle and Aiden had on each arm, two metal conductors attached for 5 minutes running an electrical current over an area treated with a chemical. It is designed to stimulate the sweat glands. Then a pre-weighed sterile piece of gauze was placed on the site, wrapped in two layers of saran wrap, then a layer of dinosaur coban, followed by a heat pack taped around both arms. On top of this, the hospital had me cloth them in long pants, a sweatshirt, and then a winter coat. There were two hoods on each child and one pair of socks. We were to take them around and encourage movement for 30 minutes. After the gauze was removed and weighed to make sure we had enough sweat to perform the analysis. We did not have to go thru the test again because they both produced enough sweat. Thank goodness. They are testing for high amounts of sodium chloride in the sweat, which is an indicator of most common mutations of CF. There are several mutations of CF.

It was upsetting to my boys because they were unable to hold their loves or suck their finger/thumb to comfort them during the electrical current. They were restrained and although none of the test is painful, the current does cause a tingling sensation like an appendage falling asleep. We will get the results tomorrow.

P.S. This is Aiden trying to crawl with his arms wrapped, a sweater, and a winter coat. We were only following orders trying to promote movement and sweat. Click to see the face in full effect---and don't feel bad about laughing, we sure did. Disclaimer: no babies were hurt in the making of this post.


Amy said...

Prayers to you and your family!

Mallory said...

Oh my! How do you keep such a good attitude about life with all the health issues you have to deal with with your kids and yourself. You are amazing!

audrey said...

hi! i am an old friend of evan's and just stumbled across your blog recently and i couldn't help commenting - my daughter has eosinophilic esophagitis, and it sounds like your boys may have something similar, called eosinophilic gastroenteritis:

we treat her symptoms with a very restricted diet (no wheat, corn, soy, dairy, eggs, peanut, rice, among other things) and elemental formula. she has been doing so well since we figured out what the problem was. at two years she weighed 19 lbs and would never eat, now at 4 she is in the 25 % for weight and doing really well.

we also had her tested for cf when we were searching for a diagnosis. sorry you have to go through this, i know how tough it can be.

scuz said...

i dont know how you go through all this. DANG! so how serious is this stuff? I mean, of course I know that its crazy serious because its your babies, but what will the outcome be? I worry for these adorable little dudes.