Dr. Harnesberger called me Monday with the resulting consensus from the conference on Friday. Unfortunately Dr. Pohl didn't make it there. LOL They all agreed that it didn't seem reasonable to put Sam on an elemental formula given how much he eats. Nor do we want to keep putting him on steroids. So they decided we should try Singulair for a couple weeks and see if that helps him grow. Apparently it's a new treatment. We'll see what happens. I'm not expecting much in two weeks.
Then today we saw Dr. Gleich again. I wasn't too excited about this appointment, since last time we waited over two hours. The nurse assured me we wouldn't be waiting that long, and she said I could slap her if she was wrong. I told her I would take her up on that. Anyways, I only waited about 40 minutes, and Dr. Gleich was totally enamored by Sam. He kept saying how cute he was and called him a little "Teufel". That means "devil" in German and it is his new nickname, if I can ever remember it. I have to keep asking Pat.
So, Dr. Gleich said he was concerned about Sam's lack of growth and the high number of eosinophils and subsequent inflammation still present, even without any other symptoms. He really wants to clear out the esophagus so it can heal, and then start with a clean slate finding out what foods he can't have. The only way to really do that is with the elemental formula for 4-6 weeks. He said the steroids are like a bandaid, but the elemental formula is like stitches, actually healing the esophagus; 95% of patients have a clean scope after formula. He wants me to try Elecare for a week, just seeing if I can "use my charm" (really??) to get Sam to drink it, not eliminating his other foods yet. See how it goes, and then come back next week. He really overestimates my "charm" on an almost 2 year old.
I don't know. It makes sense, but I know Sam will not drink that stuff. And what do I do about what Harnesberger said? I think I have too many doctors involved. Every one of them says something completely different, and who am I supposed to follow? Dr. Gleich I think knows the most, has the most credentials. Ultimately, it's up to us what we do. I just wish someone would decide for me.
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Hi there. I have just read your posts, and I so understand your frustration. I have an 8 year old son with EE. He was diagnosed at age 3. Until he was 6 1/2, we basically rode the same roller coaster you are on. His symptoms were stomach pain and reflux for a long time and his GI at that time continued to tell us it wasn't a big deal and put him on and off swallowed steroids and systemic steroids. When he was about 6 he started getting a lot worse...stomach, chest and throat pain, feeling as if food was getting stuck, constant regurgitation and throwing up after eating. During those 3 years his eos levels never went below 50 and have gone so high that they were unable to count them per high power field. To have EE they have to be greater than 15 period. So at that time we switched GI's and allergists. He was then on a 5 food elimination diet for a while and his numbers went up, we had him tested again and then we eliminated 13 foods. Again, his numbers increased. His symptoms improved for a while, but then the regurgitation increased again. THe goal is to heal the esophagus and get rid of the eos so that there is no permanent damage. At almost 8 years old, we had to make the decision to put our son on an elemental diet. He is on Neocate Splash. Your allergist is correct, 95% of the children that go on the elemental diet go into remission. The younger the child is the easier it may be. My son gained 13 pounds in 3 months on the liquid. If you have any questions about it, feel free to contact me. You can email me (momwithspecialneedskids@roadrunner.com)or go to my blog eeldkids.blogspot.com.
ReplyDeleteI do want to tell you that from everything I've read on your site, it sounds as if your allergist has the most knowledge about EE. Also, Singulair is no longer used to treat EE. At one time it was thought to help, but research has shown it has no effect on the production of eos. And your allergist is right about the steroids, they are just a bandaid. Typically, if a child with EE is put on steroids they will go into remission, but right after they are taken off, they will relapse. An elimination diet, sometimes eliminating all foods, to detect what foods are the culprits is the only way to truly put your child into remission. Then you can begin food trials, reintroducing foods one at a time, one for several weeks before you introduce another.
I am so sorry you are going through this. I know how frustrating it is and how hard it is to watch your child feeling sick or not grow and not be able to help. Again, please email me if you'd like, I'd also be happy to give you my phone number. Good luck!
First of all, thank you for writing this blog! I can relate with a lot of things you have experienced and it has been nice for me to be able to read other people's experiences since my son was diagnosed almost a year ago. I just began my own blog: http://ahardjob.blogspot.com/ as well. I would love to link our blogs together if you would like and keep each other updated!
ReplyDeleteKim