|Aug 18, 2009|
Worried- Johnnie UpdateHi Everyone
It seems like forever since I posted. Johnnies GERD is still the same. He is upright 24/7 and yet he still is aspirating constantly. We finally got in to the lung doc and he referred to a new ENT(the old ENT moved out of the area) so they could both be there for the bronchoscopy, to check for other problems with his airway. We saw the new ENT on Monday and are waiting to hear when the bronch is scheduled. Have only been waiting since last October, so no hurry! Making progress finally. I had to have a melt down because his GI suddenly quit working (yeah) and so all meds and referalls were stopped until we could get into another GI. THANK God and a pissed off nurse at ped office, we got into the new GI instead of waiting until next February. They wouldn't even allow rx for formula and WIC wouldnt consider extending formula because he turned 1 in July without a GI's order.
Ok so now to my pressing issue. Johnnie was allergy tested (RAST) for a few of the most common allergens. He is SEVERLY allergic to milk, eggs, peanuts, and soy. I already knew about the milk allergy because if it touches his skin, he breaks out in welts wherever it touches. If it does that to his skin can you imagine what it would do if he ingested it? We had a scary situation the first time he was in a room with someone who had a bag of peanuts, had to use the epipen. So the other day while we were waiting in the ENT office, he got hungry, so I opened a jar of stage 2 squash. He has had it before with no problems. After 2 bites he started to refuse. I thought he was just being picky so I continued to fight him to eat it. After 1/4 jar I gave up. Within a few minutes he started screaming, then he started breaking out in hives. We were just finishing so we left, still not thinking much about it, just thinking he was cranky and needing a nap. So we get to the parking garage and into the car seat and he starts vomitting, aspirating and severe hives. So then he screamed the rest of the day and refused to drink or eat anything at all. Today he is back to his normal cheerful self.
His food allergies are becoming so severe, im scared to feed him. Does anyone else have this problem? I felt so bad for making him eat it in the first place, but he had never had a problem with it before. He has started refusing even the few foods he has been eating. He wont touch any fruits anymore even pears. I was thinking maybe the fruits aggrevated his reflux but now im not sure. I thought the reflux was horrible- i'm not sure now how I'm going to survive this too!
We have just started feeding therapy with the nutritionist and speech therapist. He refused to swallow anything other than stage 2 foods. If he even got it in his mouth he would gag and vomit, but on the 1st therapy session he ate everything i put in front of him without a single gag. He even chewed it up!!!! So i looked like an idiot because I said he couldnt eat real food. Thanks for letting me vent!
|Aug 19, 2009|
|so sorry you all are having such a tough time. we are kinda hung in the stage 2 zone too. adeline has been refusing some of her old favorites. pears had been great and now we are taking a break. she hit the brakes the other night too on the winter squash. we tested her for allergies and was negative for the 20 things. she got a REALLY bad cold about two weeks ago and we had to cancel her scope. when the cold hit she went on strike with her solids for a week. she threw up everything. i had seen on this sight a couple of weeks ago about the book just take a bite. it is referenced in the back of Beth's reflux book. anyway there is a whole section in there on positioning the child while eating. we are using an orthopedic type chair from the OT which really positions her VERY upright and frees her arms to move. It has made all the difference in the world with feeding her solids!!!!!!!!!!!! The high chair was too confining. just thought i would throw this out about the positioning because it has been a lifesaver for us. She is going to start feeding therapy next week and hopefully we can move on to some new foods.|
|Aug 19, 2009|
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
|Have the GIs done an EDG to rule out any types of EE disorders??? I would start with that first. |
|Aug 19, 2009|
|Aug 19, 2009|
|I have been thinking about you two and wondering how you were doing. I'm sorry that things are going so rough right now. What doesn't kill us only makes us stronger right? I don't have any advice to give you just prayers and hugs for you. You're a great momma so don't beat yourself up. Hang in there. |
|Aug 19, 2009|
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
|I have two friends who's kids have severe food allergies. One broke out in hives all the times. His list of food allergies was unreal. I asked her about it today and she said that the nutritionist was key in helping them figure out a good list of stuff he could have and they just focused on that. Variety was not necessary, just calories and nutrition. She said it didnt take long before it became normal in their house and more importantly once they figured out what foods bothered him and eliminated them, his stomache issues and reflux turned around and he was a new kid. He is 5 now and his allergies are going away one by one and he is doing great. So sorry you have found a new challenge to over come. I was hoping you had crossed the finish line. |
|Aug 20, 2009|
|Thanks everyone, I really appreciate it. I think I am going to press for a more comprehensive allergy test to be done, so maybe I can avoid having to use the epipen on a regular basis. The new ENT wouldnt even consider doing a scratch test because his allergies are so bad, but I know they can do it with a blood draw as well. Thats how they did the last testing.
Would it be a reasonable request to ask the GI if we could do a PH probe while he was already in the hospital for the bronch? Like maybe place it right after they were done. What do you think?
He has gained a few pounds since we started the nexium- does anyone know how weight sensitive it is? I'm thinking it's not strong enough and the acid is tearing him up after he eats later in the day. HMMMM so much to wonder about!|
|Aug 20, 2009|
Jeds mommyYou are a genius! I have never heard of EE before. It all fits- I will definitely be asking the GI to do the endoscopy to check for it. Sorry for the delay in responding I had to look it up. LOL
The part that is driving me nuts is that some of the foods he has been eating are now causing SEVERE anaphalactic reactions. So I don't know if he is just being picky or if it's a new allergy until he has hives and can't breathe. Then I feel like a monster because I worked so hard to get him to eat something that was trying to kill him.
I know we are making progress- I now have specialists (hopefully they wont disappear) who are willing to look for answers and KNOW that we have a real problem. That has taken almost a full year to do.
His social worker is bugging me to have them do the fundo- and I keep telling her that if we can continue to manage without it- that it's really not in his best interest, but all she see's is that without it- he will always have this problem. Am I wrong?
|Aug 20, 2009|
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.
|Wanted to start by saying that Johnnie is one handsome little guy! I'm not on this site very much any more, but I do check in from time to time. My son, who is now 3 1/2, suffers from eosinophilic esophagitis, IgE (immediate type - can be deadly) food allergies: dairy, egg, peanut, soy, reflux, seasonal/environmental allergies, asthma, and contact allergies. We only saw him break out once, when he got into the trash & touched cream cheese. The EE dx, was a long time in coming. They (even a pediatric GI from a very good Children's Hospital) didn't look for it for a long time. I finally pushed because the reflux drugs didn't seem to be helping too much & he was choking on small amts. of food, plus cranky. The ONLY thing that ever helped was switching him to Neocate formula. Some kids, however, have eosinophilic disorders w/o severe symptoms & without IgE food allergies. EE trigger foods are completely different than IgE (possibly anaphalactic) food reactions. My best advice other than getting him scoped with biopsy (by a Dr./hospital) that is very familar with the condition is to visit kidswithfoodallergies.org. You don't have to join (pay) unless you want to post, but you can read everything. I go into the Main forum (covers everything) and also into the forum for kids with eosinophilic disorders. Currently, my son is on Neocate ONLY, while we trial his first 5 foods (all veg./fruits) & then rescope end of Sept. to see if the eosinophil count is high or normal. If it's high, we will lose those foods. Good luck in sorting it all out & getting him to baseline (where you aren't using the Epi all the time, etc.). If you need any more info., feel free to ask me. El||Check with your