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Dec 10, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
mommy2max&lucy
Hi. I have been wanting to ask you a few questions about Max. Forgive me if you mentioned any of this in a previous post - my brain is shot! Since Max also has the e.e. & this is new for us, I was wondering: 1. Does he also have asthma? 2. What is his typical diet now? 3. How often does he have endoscopes to check the e.e.? 4. Where do you all go for this condition? 5. Is he on reflux meds? 6. Does he have deadly food allergies as well? 7. How do you manage school/bus if he is in school (or how do you plan to)? 8. Lastly, does severe allergy condition run in your families? I hope I'm not questioning you to death, but I feel more overwhelmed with this diagnoses than all of it because there is no chance they will outgrow it (from what I'm told). It's a lot to cope with, don't you think? Thanks for any info. Ellen
Dec 10, 2008
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Hi Ellen! I don't mind the questions...I had most of those same questions when we were diagnosed. I can only go based upon our experiences, but I feel like we are living in a different world than 3 years ago when he was diagnosed (at 12 months). Before Max was diagnosed, he was sick constantly, in and out of the hospital and just downright miserable. Now, he is a healthy, active, "normal" 4.5 year old...I would have never believed it was possible a few years ago. I just want to put that out there first because I know how it feels...the hopelessness, the pity, feeling overwhelmed...we experienced it all...and there is a light at the end of the tunnel! To answer your questions...(1.) He does have asthma. It was very severe for awhile...a cold always resulted in a hospital stay. We have been using Advair via a spacer for 1 year and it is a miracle drug in my mind. He has never had a flare while on it. (2.) He has a huge diet (compared to most EE kiddos). We took him off of everything but Elecare for 8 weeks to heal him. Then we started with fruits b/c we had a feeling they were safe. We took it very slowly and had some set-backs along the way...such as peanut butter which caused a bad flare for a week. He also can pass foods now (such as rice) that a year ago he did horrible with. He eats everything but seafood, nuts, milk, turkey, lamb, soy and chicken. I should say that he doesn't present typically...he passed wheat and beef immediately and failed turkey, rice and lamb. This is complete opposite of the food introduction diet they suggest. (3.) We used to scope every few months (3-4) but now scope about once or twice a year. I try and combine scopes with other procedures now such as his sinus surgery, etc. Luckily, Max usually presents with symptoms such as horrible behavior or stomach pain within a week or two of trying a new food so we don't ever need to scope. My philosophy is that if he is unbearable to live with because of the behavior a food is causing, I don't care what the scope says, because he isn't staying on the food. (4.) We go to CHOP (Dr. Liacouras for GI). We changed from their allergy department because we were having major issues getting in for asthma flares. We now see a local allergist that did he training under Dr. Brown at CHOP so it is like getting the best of both worlds...a CHOP doc with the CHOP scheduling nightmare. I did like their EE clinic, though, when we were using it. Now, we just schedule our scopes through Dr. Liacouras' nurse. (5.) He takes Pepcid on an as needed basis. He also takes Tums daily...but that is more for the calcium since he doesn't have a good calcium source. (6.) He is highly allergic to milk. (7.) He goes to daycare and has been going since he was an infant. We found a daycare that really works with us. We also never hid the fact he had issues from Max. We taught him to say "I am allergic to milk" and "I can only eat my food" at a very young age. I strongly believe that the more honest and open you are with them the better. You can't always be there with them. He goes to birthday parties and immediately tells the adults he has allergies. Obviously, we also tell them when we drop him off, but I am trying hard to make Max be in charge of his own condition...to the extent possible. He packs his own lunch bag with snacks for parties and we keep "safe" special treats in the freezer at school for parties, etc. If Max knows they are having cupcakes at lunch, he will ask his teacher to take one of his snacks out for him. His school has really worked with him too on helping him become empowered to know what he can eat and not eat. (8.) My husband has a shellfish allergy he developed as an adult...that's about it for allergies. Our daughter (18 months) has a mild milk intolerance (just can't have whole milk, but can tolerate milk in cheese and baked stuff). It was terrifying to think of having another child because I was so worried about going through this again, but once Max was healthy (or healthier, I should say!), we realized tha t even if our second child had his same issues, it wasn't the end of the world. I actually didn't believe our pediatrician when she suggested allergies as a reason for Max's "colic" the first few months because we really didn't have a strong family history. I am so sorry you are going through all this. Here is my email address if you ever want to talk more - pattiforte at msn . com. Where do you live? Where do you receive care currently? - Patti
Dec 10, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Thank you so very much for all your help. I am glad to hear that things got better for you all in a lot of ways. I know exactly what you mean about how hard it was in the beginning. We had non-stop crying/screaming for the first 17 mths. of his life. When we discovered his food allergies (scratch test results anyway) & cut those foods, plus introduced Neocate, he got a little happier. As a matter of fact, he is quite the ham now. He only gets miserable if his eyes are bad (allergic conjuctivitis/atopic dermatitis), his nose is really bothering him, or if he is sick. He is about to start on preventative asthma meds. I'm glad to hear how it worked for Max, because we have had hospitalizations too. It freaks me out when he goes from a cold to hardly breathing in about 36 hours. ASTHMA bites!!!! We live at the Jersey shore (near Ocean City) and we are currently going through CHOP's e.e. dept. He has an apt. this Fri. for patch testing & I am so hoping he doesn't get sick. But, his older sister has a cold, so it's anybody's guess. I'm wiping things down like a complete lunatic. I will definately write down your e-mail address for further contact. I appreciate that. Ellen
Dec 10, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
P.S. Where do you live?
Dec 10, 2008
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Hi Ellen! Good luck on Friday! We also did patch testing...during one of the hottest spells of the summer...it was a nightmare. The winter should be sooo much easier. We didn't have a ton of success with the patch testing...Max came up positive to foods that we know are fine and it didn't pick up on ones he is very allergic to. But, others have had great success with it. We live in Limerick, PA - west of King of Prussia. But, my husband and his entire family is from Pleasantville/Absecon area. We are down in OC all summer long...what a small world! Are you a member of APFED? If not, I would highly recommend joining. I also highly recommend their patient conferences each summer...it was an incredible experience being around others with the same issues as well as providing a wealth of information.
Dec 11, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Thanks again. I'm not a member, but I'll look into it. Maybe we'll bump into each other on the beach : ) Take Care, Ellen
Check with your
doctor first!