|Sep 25, 2008|
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
|Hey Engi. How's it going?
Sebastian was actually not on Neocate only until mid-late July. However, he has had problems since he was three days old. We have quite a list of food and environmental allergies in my family (all of the cousins in Sebastian's generation have allergies, some extremely severe and ALL multiple). The thing is (you probably already know this) that allergies are passed along a gene - the "allergy gene." If one parent has an allergy - and it doesn't matter WHAt type - a child has a 40 percent chance of developing an allergy (the parent could have a dog allergy, but it would show up in the kid as a, say, shellfish allergy). If both parents have an allergy, the chance jumps to 60 percent. I knew something was wrong with Sebastian right away.
To make a long story short, he was covered in a terrible rash from about two weeks of age on, and he started screaming nonstop at three days of age (and I mean NONSTOP). He didn't sleep. After fighting on my part, we switched to Nuramigen at six weeks of age (had nursed miserably for 3 weeks, then tried Similac, baby got progressively sicker.) He improved quite a bit on Nutramigen, screaming from feeding to feeding only about 50 percent of the time. His face didn't clear, nor did his legs...but everywhere else did. Then we tried ALimentum - he got MUCH better, but then started the diarrhea. Had that for 11 weeks before he was switched to Neocate. Neocate made him extremely constipated, so he was prescribed Lactulose. This was his first major allergic reaction. He had been tested for the top 8 at 10.5 weeks of age because of my family history, but almost all showed (-).
He was skin tested again at 5.5 months and had a HUGE reaction to egg. They cannot tell you for sure if a kid will go into anaphylactic shock or not from an allergen, but the allergist was extremely shocked that a young baby would get a welt like that. S tested (-) for everything else despite severe problems from practically birth. Allergist told us to try Similac since he was (-); I refused but decided to try it (event hough I was bullied) but I tried Alimentum. He got diarrhea and stomach cramps. We went back to Neocate after two days.
We introduced solids at six months with Prevacid. He threw up squash all day and the next. We waited a week and tried avocado; he seemed fine but hated it. Then we tried pears. He did fine. Then he got sick from oatmeal, then bananas, then blueberries, then rice. We had more allergy testing. He tested positive for everything over there in my siggy. Eventually, he could tolerate nothing - even his "safe" foods. We had a scope done. Here were our results (just coping from an old post:
Hi everyone. I am feeling pretty low and confused right now. You have probably read that we are trying to get to the bottom of Sebastian's tummy issues, and it has basically been like searching for a needle in a haystack (too tired to care about cliches). We had a scope and flex sig at the end of June, and we were told that Sebastian has severe reflux (I don't think it is SEVERE, though. I just think he has reflux that we can't get under control! These doctors confuse me.) and that his stomach and intestines are inflamed. We were also told he has four eosinophils in his esophagus and that he has an elevated number of lymphocytes throughout his digestive tract. There was mention of mucus in his duodenum (??). After these results, Sebastian's always-in-hiding GI ordered blood tests for Celiacs disease. The first two came back negative, and today the GI called me (I know! I was shocked, too!) and said that the third test, this serum test, came back with a very low number of cells they were looking for. Normal should have been 19 and above; Sebastian had 12. I really don't know what this means, but the doctor said this means Celiacs. She went as far as to say that I should cancer our allergist appt with Dr. Wood on Tuesday! She said we don't need it now that we have a diagnosis. WHAT? Has she never once looked at his charts? Has she forgotten that my 9.5 month-old child (WHO TOOK FOUR STEP SIN A ROW ON HIS OWN TODAY!!!!) has MANY food allergies and that is off everything but Neocate while his body heals???
She set an appt for us with the Hopkins nutrition clinic for 8/1. She wants me to learn about a gluten-free diet for Bassy.I mean, the kid has an IgE allergy to both wheat and barley, so I wasn't planning on giving him gluten! (or anything, actually!!) The appointment is a good idea, thoug h- what annoys me is she shrugged off my concerns about allergies.
Here is where my confusion sets in.
I feel like our GI doctor is happy to have a diagnosis so she can be done with us. I have had a hard time getting her take us seriously the entire time she has "treated" (ha!) my son, namely because he is tall, round, and thriving. But the kid oviously has problems...he can't eat anything, and his meds are useless. I am not sure he HAS Celiacs. We have absolutely no family history of it, and he has never had gluten.
You know what I think ? I think he has had this inflammation since he was BORN. His food allergies are so severe, and basically, he has never had a break. He reacted to half of what I was eating when I nursed him (had no idea WHAt at the time, though). We put him on Similac...he was a wreck. By this point, his GI tract HAD to be inflamed or compromised. Then came Nutramigen....allergic to it...GI tract harmed again...same with Alimentum (this was significantly worse than Nutramigen). He finally got on Neocate at the very end of January, but almost immediately, he was put on Lactulose for his constipation from it...and he reacted BIG time...more harm to the GI tract. Then came pear and prune juice...same story...acidic or fibrous fruit sinking into sore tissue. Then cam esolids...which has been nothing but one huge nightmare. He had problems from Day 1 with squash....then oatmeal...then rice...then pears/blueberries (although solo pears were fine)...and the worst was bananas at the end of May (you might recall he started with hives, then had diarrhea and round-the-clock vomiting for over a week...then the cycle began again...body was compromised, and I kept tryign solids, half of which he was allergic to. Last week or so, I finally accepted that he was going to tolerate absolutely nothing. He's now on Neocate only and is actually showing improvement after only two days.
What do you ladies think? Do you think my theory could be right? Rissaroo, what do you think about the Celiacs diagnosis?
I remember being scared to post on this board because I didn't think my son was "sick enough" (in the famous words of our docs)...and look at us now. I just want an answer. I want my son to have ONE day where he isn't uncomfortable.
Thanks for reading...if you made it this far without me putting you to sleep!!
AND her eis what we learned from Dr. Wood:
Hi everyone! I just wanted to check in with you from Cloud Nine and give you an update on my little man. We saw Dr. Wood this morning, and honestly, I feel better than I have in 10 months. He is truly wonderful and if any of you need an allergist and can swing a trip out here to Baltimore , IT IS WORTH IT. AND YOU KNOW HOW I FEEL ABOUT HOPKINS IN GENERAL! (And if you don't, please refer to my signature photo and caption).
The appointment started off on a good note - we weren't ignored and kept waiting for HOURS like we have been for every single Hopkins GI appointment we have had. One of the fellows actually walked us back to an exam room and stayed with us for 45 minutes, getting a complete history for both Sebastian and his parents. Then she left and said she was going to discuss it with the doc and that he would be right in. Well,I have heard that before and waited two hours. But not this time! Dr. Wood was in our room within 10 minutes. Here is what he had to say.
He said that Sebastian is an "exceptional young man with a extremely complicated set of allergies." He said Sebastian (based on history) has a combo of IgE allergies (show up on test), non-IgE-mediated allergies (don't show up on test), and oral allergy problems (he reacts to fruits grown on plants whose pollen he is allergic to...hence the banana atrocity). He said that the diagnosis of Celiacs Disease is "completely irrational" and that Sebastian has about a 1 in 1,000 chance of having it. When I told him our stupid GI told me to cancel our appointment with him, he said, "That is ludicrous. That doesn't make a bit of sense to me."
He then told me that the GI's report from when we went to the ER a few weeks back SAID THAT THEY HAD CONCLUDED THAT SEBASTIAN HAD THE FLU. THE FLU?????????????????????????????????????????????????????????????? Does that explain why he is fine 24/7 except for when he vomits a full bottle in the middle of the night? Moron. Thanks for the proof that you absolutely did not take me or my child's health seriously.
He wants to keep Sebastian off of all foods but Neocate until at least October to allow his little body to heal. He then wants to go very slowly with introducing foods, starting with fruits and veggies and avoiding grains (he reacts to all of them that we have tried anyway).
He told us that he can't say 100 percent without testing, but he thinks it is ridiculous that anyone (meaning SEBASTIAN'S GI) to imply that Sebastian has various diseases when it is obvious that his problems are 90% food and 10% reflux (and he thinks that the reflux is induced by food).
He also said that he thinks Sebastian has been miserable since he was four days old because his body has been damaged since then! I TOLD YOU, STUPID GI! My theory was right! Poor little man just kept having problems on top of problems. He then said that Sebastian (this explains the low white blood cell count in his blood and the increased number of lymphocytes in his GI tract) is going to take longer than most kids/people to recover from colds, flus, etc because his immune system has been compromised by these food issues for so long.
He then told me that he sees a 12-year-old boy who could have been a carbon copy of Sebastian when he first started seeing him at age 10 months. That kid is now testing positive ONLY to treenuts and peanuts. NO OTHER ALLERGIES. He thinks with extra care, Sebastian can get here one day.
He then told me that Sebastian is very likely to react to pretty much anything in the environment and that I need to be prepared to, well, accept it. He said that I can't keep him in a complete allergen-free bubble, but I can keep him safe. Dr. Wood also said that he suspects that Sebastian's mysterious hives are very likely the result of airborne exposure to his allergens. For example, when my husband cooks (I do NOT cook, but my husband is awesome), the vapors and particles are released up and Sebastian can very easily breathe them in and react...or they can touch his skin and give him hives. OHHHHHH! That's where they have been coming from!
He told me I can't go through with my idea for a jell-o molded fire truck for Sebastian's first birthday because he thinks Bassy will react. He also nixed the edible flower layer cake idea (so Bassy could pull it apart and throw the pieces everywhere) because he will probably react to the pollen in the flowers. I am going with my last resort, which is to make Sebastian a giant birthday cake out of...legos!! (The huge kind).
What makes me even happier is he told me that since we are putting hardwoods down in our new house (we really are...we didn't hire anyone because we are poor...hence my MIA status), we don't need to find Louise a new home! He said that she is such a tiny part of a huge puzzle. Hooray! I explained that she would be very happy to hear that.
Dr. Wood explained that the rash on his neck and chin that everyone (including all docs) has told me is a drool rash is actually eczema. He also told me to stop using Johnson and Johnson's baby wash because that is what probably caused his eczema breakout the last few days. We had been using an Aveeno eczema oatmeal wash without a single issue, but I stopped using it because I worried the oats may have been contaminated with wheat. I guess this is what he means when he says Bassy will react to everything. Same thing has been happening with sunblock. And again when I let him play (supervised, of course) with a big bowl of popcorn.
I think the biggest relief for us was that someone finally explained his thoughts.
Ok, Engi. That's all for now. Hope it helps a bit!!