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November 18, 2010
We got to the hospital about 8:30 this morning, and they put some numbing cream on DD's hand where the IV would go. She got to watch Finding Nemo the whole time, so she was happy. :) Then the anesthesiologist came in and told us that the anesthesia they use sometimes has cross-reactivity with egg allergies. GREAT. But that the other option had a lot more side effects, and might cause problems in this specific procedure. So we tested it on her skin first and saw no reaction, and then he put a tiny bit in her IV. Immediately, she got really chatty and happy. lol We waited a bit, and didn't see any reaction, so he gave a little more, and then a little more... and she was out. **added: I found out after the procedure that the anesthesia had both egg AND soy oil in it, so we had a few days of some behavioral/neurological reactions, but nothing too major.
The anesthesiologist made it very clear that he didn't want me in the room during the procedure, but I was adamant that I wanted to stay and that I wouldn't be a distraction. He wasn't very friendly about it, but I held my ground. The GI was much nicer- we had discussed it in advance, and he had no problem with me being in the room. He explained everything as it was coming up on the monitor, and then we talked briefly when he was done.
The GI showed me the lines running up and down her esophagus where the tissue should have been nice and smooth, and told me this was a sign of esophagitis.
All was fine and good (as far as I know) until they started to take the scope out of her throat, and she started gagging and choking and was very obviously struggling for breath for a couple minutes. Her heart rate went pretty low until they gave her some oxygen, and then it went back up. It was incredibly hard to watch, but I made sure to stay quietly in my chair so that I wouldn't distract them from their job of keeping her safe. After the tube was out, she seemed fine, so they continued with the colonoscopy.
Nothing remarkable to report there, except she had a lot of poop in her large intestine still. It wasn't a huge shock to me, because the laxative we had to do the night before took a LONG time to start working, and she still had a bunch of poop this morning before we left. But he insisted that it shouldn't have been there, and said that it was constipation (even though I told him she's pooped about 10 times since Monday) and that we should give a laxative/stool softer daily. He also gave us a prescription for prevacid, an antacid, for the esophagitis. I'm not fully convinced we'll be doing either.
We should get back the results from the biopsies and the digestive enzyme tests in 7-10 days. I'm not making any decisions about any treatments until then.
The anesthesiologist made it very clear that he didn't want me in the room during the procedure, but I was adamant that I wanted to stay and that I wouldn't be a distraction. He wasn't very friendly about it, but I held my ground. The GI was much nicer- we had discussed it in advance, and he had no problem with me being in the room. He explained everything as it was coming up on the monitor, and then we talked briefly when he was done.
The GI showed me the lines running up and down her esophagus where the tissue should have been nice and smooth, and told me this was a sign of esophagitis.
All was fine and good (as far as I know) until they started to take the scope out of her throat, and she started gagging and choking and was very obviously struggling for breath for a couple minutes. Her heart rate went pretty low until they gave her some oxygen, and then it went back up. It was incredibly hard to watch, but I made sure to stay quietly in my chair so that I wouldn't distract them from their job of keeping her safe. After the tube was out, she seemed fine, so they continued with the colonoscopy.
Nothing remarkable to report there, except she had a lot of poop in her large intestine still. It wasn't a huge shock to me, because the laxative we had to do the night before took a LONG time to start working, and she still had a bunch of poop this morning before we left. But he insisted that it shouldn't have been there, and said that it was constipation (even though I told him she's pooped about 10 times since Monday) and that we should give a laxative/stool softer daily. He also gave us a prescription for prevacid, an antacid, for the esophagitis. I'm not fully convinced we'll be doing either.
We should get back the results from the biopsies and the digestive enzyme tests in 7-10 days. I'm not making any decisions about any treatments until then.
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November 30, 2010
As you know, DD had an endoscopy and colonoscopy with biopsies done a couple weeks ago. We got the lab results back last week, and were pretty shocked by the news.
First, the good news- DD's disaccharide/pancreatic enzyme stimulation test came back normal. All enzymes were in the normal range, but her sucrase was right on the bottom edge. That might be something that she needs help with (that's the enzyme that digests sucrose), so we're trying out some digestive enzyme supplements. So far, they've made her kind of crazy and given her a mild rash (which I'm reading is normal when starting enzymes.) We're going to stop for a few days and start again slower, and see if they help with her digestion at all.
Now for the bad news. The biopsies found elevated levels of eosinophils (white blood cells) in her esophagus and digestive track. Eosinophils are normally found in the blood and colon, but should never be in the esophagus. So we have an official diagnosis which falls under the umbrella of EGID - eosinophilic gastrointestinal disorders. At this point we know we're dealing with at least EE (eosinophilic esophagitis) and EC (eosinophilic colitis). Short version of the story is that EGID are a group of chronic, life-long inflammatory diseases with no cure. EE can potentially cause damage to the esophagus to the point that it gets so inflammed and constricted you can no longer eat. Many kids that have EE can't tolerate any solid food, and eat a diet of strictly elemental formula (formula in which all the proteins have been broken down into amino acids, so your body doesn't have to digest them.). Because it doesn't taste all that great, it's often tube fed.
So our treatment options include:
- lots of meds, including steroids to reduce inflammation in the esophagus
- switching her to a diet of elemental formula
- allergen restriction/maintenance
Most doctors recommend a combination of the above treatments. I'm not ok with either of the first 2 at this point, so for now we're sticking with diet restrictions and will do another endoscopy in a few months to see if there are any changes. (I suspect that part of the damage was done while she was eating quinoa, so I'm hoping that keeping her off all grains will allow that to heal a bit.)
We were really hoping to get some answers as to why DD keeps getting new allergies, when she "should" be outgrowing them by now. I guess we got that. :( But I was hoping for something that we could fix, or heal, to get her back to a regular diet... and that hope is lost. We now have to face the real possibility that she will continue to lose foods until she runs out completely, which means that we have no choice but to go to an elemental formula.
My plan right now is to start researching like mad. This disease is somewhat new and increasing rapidly in children, and the research isn't complete. So we really don't know anything concrete except that people aren't expected to grow out of it. We don't have any EGID "specialists" here in Seattle, but our GI seems open to discussion and suggestions, so we'll stick with him for now. There are 4 major EGID clinics in the U.S.- Cincinnati, Philadelphia, Denver, and San Diego. If we feel like we need more expert help in the future, we'll definitely head to one of those... but with our history of horrible doctors, I hate to spend time and money traveling only to find out that the doctor we're assigned to is interested in nothing but prescribing meds.
Anyway.... that's where we're at right now. The diagnosis was really a shock, because she's never had any upper-GI symptoms since she was an infant, so I never looked seriously into these disorders. Oh- EGID tends to run in families, which means that this new babe (due in March 2011) is more likely to have it as well. So another big goal for me is to keep my health and allergies in check. I will be doing monthly blood tests with my midwife to make sure my eosinophils aren't elevated (which would signify an allergic reaction). I'm also going back to a restricted diet, free of dairy/soy/gluten/corn/and possibly eggs. I've had a lot of fun eating whatever I wanted the last few months since DD weaned, but my eczema is back so obviously I'm having some allergy issues as well, and I need to get that under control asap. Plus, I suspect I'll be going on a much more restricted diet once the baby is born, so I need to get back into that mindset.
Oh- here is a website if you want to find out more info about EGID:
There are pages about EE (which is the most common form) and EGID- which describes all the different types of disorders that fall under the EGID umbrella.
**update: I just got the labs back from the hospital, and there was eosinophilic inflammation in her eophagus, colon, AND stomach... so we're actually looking at EE, EC, and EG now (eosinophilic esophagitis, colitis, and gastritis.) sigh. No numbers though on the labs, which I was expecting. Only that the eosophagus was >50, indicating "severe" eosinophilic inflammation.
**update: I just got the labs back from the hospital, and there was eosinophilic inflammation in her eophagus, colon, AND stomach... so we're actually looking at EE, EC, and EG now (eosinophilic esophagitis, colitis, and gastritis.) sigh. No numbers though on the labs, which I was expecting. Only that the eosophagus was >50, indicating "severe" eosinophilic inflammation.
7 comments:
My son was diagnosed with EE 5 years ago at 12 years old. It is a constant battle figuring out what foods he is allergic to. We now know it's: dairy, eggs, legumes (including soy and peanuts), seafood, grains (including rice & corn), tree nuts, and mustard. Trying to find foods he can eat, particularly starches is very challenging. Any ideas would be great.
I'm so sorry to hear about your child's diagnosis. I've been following your blog for a while now as my allergic kid does NAET, too. Have you continued with NAET? We're now on treatment 56 and have seen some nice improvement. One thing you might want to research and ask your doctor about is a medication called LDN--low dose naltrexone. My son is on it as it's suppose to have a homeopathic effect on the body to put the immune system back into balance. It's used in a variety of autoimmune issues including MS, Corhn's, colitis, IBS, and celiac. It's an old drug that can't be patented so it has to get all funding from private research and needs to be made by a compounding pharmacy. Here's more info: http://www.lowdosenaltrexone.org/#How_does_LDN_work
My daughter has been FPIES at 9 months. At that time we introduced foods which were her safe foods. Beetroot, quinoa, pork, banana, spinach, cane sugar, sunflower oil, apple, white potato and Neocate. Now she is 18 months and is down to beetroot, pork, banana, quinoa and Neocate. Always after a food failure she loses weight, doesn't put on any for 3-4 weeks and for up to 7 days after a failure she basically can't swallow as it seems to hurt her throat. Doesn this mean she has EGID or EE? Is that normal for FPIES? Please let me know as we are here very worried as I keep taking her safe foods away. She doesn't get any better, keeps having tiny bruises all over her body which is a sign of malabsorption and also eczema patches.
Sorry to hear that. :(
Yes- trouble swallowing is a huge symptom of EE. I would definitely get her in to see a GI!
Oh, I will definately arrange a GI for her on Monday. Also I read in the post that quinoa might have caused quite a lot of damage. Why would that be? I suspect quinoa for all our troubles as apart from Neocate this is her main source of nutrition. Also if they perform a biopsy would I have to give her something offensive or just keep her as she is?
The reason quinoa was a problem for us was because she was reacting to it. We finally skin tested and got a huge positive for quinoa.
If she's already reacting, you shouldn't have to add anything to her diet before the scope. I added some minor triggers because although I suspected the quinoa, I wasn't positive that she was reacting to it and I wanted to be sure they would find something if there was something to find.
Our son has EE and was diagnosed as failing to thrive during his first year. Since then, we found a specialist, eliminated many foods, started Elecare (like Neocate), and when he went in for a scope, he had NO eosinophils in his esophagus. It CAN be done. We suspect that he's alergic to gluten, and he's still off all forms of dairy, oat, nuts, egg, etc. Food aversions and psychological avoidance has made feeding a challenge, but we are working through those issues slowly. He's now 2 1/2 and as healthy and happy as ever.
J.B.
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