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May 04, 2009
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.
Eric at age 3
This is not to scare anyone. Some already know our story. But, because the 3rd week in May is National Eosinophilic Awareness Week, I would like to share our experience. We did not come upon our son's diagnoses the easy way. It was a very long journey. The second week after Eric was born he began to projectile vomit every bottle. After switching formulas, bottle types, etc. to no avail, we headed up to our local Children's Hospital. They never looked into a possible milk allergy. They actually preformed an unnecessary surgery (for pyloric stenosis). After returning home, we realized he was still vomiting, but now had terrible diarrehea. He cried non-stop (the crying actually lasted for 17 mths. 24/7). After again returning to the hospital in desparation, they switched his formula to Nutramagin. This stopped the diarrehea & big spit-ups, but not the crying. I thought once we started solids we would see a big improvement. We did not. More crying, some rashes. We took him to a good GI Dr. who prescribed Prevacid & said it was ok to put him on a toddler soy formula. He does the first scope (only 3 eosinophils, yes) & some other tests for reflux. More crying & now eczema on the face and inner elbows. I took him to the pediatrican, who promptly told me the eczema was from a virus or the sun (or maybe he was abducted by aliens). Finally, I took him to the first allergist who scolded me for bringing him in. "Eczema is a problem all by itself, it doesn't always mean food allergy," he said. "You should take him to a dermatologist." He did a few scratch tests because I would leave without them being done. Positive to milk, egg, soy, & peanut. I leave feeling like I'm going to die. Peanut allergies kill, I think. So, we return home once again & I remove all traces of these foods from his diet. I have to order Neocate now, because I'm not sure he will get the nutrition he needs. Fast forward to 2 1/2 years of age. He has developed asthma & seasonal allergies, just like dear old dad. And, auntie, grandpa, cousins, etc. How charming. But, I can't expand his foods. He seems to choke on tiny little pieces of food. He doesn't really seems to want to eat. My daughters never did this. Something is still wrong (gut instincts yelling now). I push the GI Dr. into doing another scope. This time there are 36 eosinophils in his esophagus. Here it is: an official dx of EE. Not good. Not good at all. We do patch testing at the Children's Hospital. Remove 4 more foods (rice, peaches, corn, potatoes). These were all NEGATIVE on the scratch/RAST tests, because EE triggers can be completely different from IgE allergies. Delayed allergies vs. immediate allergies. Another scope this Feb.: 72 eosinophils. WTH? As of this week, Eric does not eat. We had to put him on an elemental diet (Neocate only). He is drinking enough bottles, but if he stops he will need a tube. He asks for juice, bananas, & his favorite EnjoyLife cookies. In six weeks we will rescope. If it's clear we will start trialing foods one at a time. This is an ugly disorder. Currently, there is no cure & it is not outgrown. If you have read this far, thanks. Although it is much rarer than reflux, the two are still confused sometimes in the beginning. I learned everything the hard way. Ellen
May 04, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Sorry to hear he is still having a tough time.(((hugs))) Has he tried any swallowed steroid therapy yet? It may be worth a try if the next scope is not improved.
May 04, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Ellen thanks for sharing your story again. I know that I am pretty familiar w/ all of it but some of the things I had forgotten. I am hoping we aren't on our way to this dx. Although the stories sound similar. Good luck with the next scope.
May 04, 2009
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
(((hugs))) I am so sorry that Eric is going through this! I hope that he's able to eat at least a few things soon. It seems to me that EE is becoming more and more common. I wonder why? Hopefully there will be some breakthrough soon that will improve things for people with EE. Are you hanging in there? Is there a support group where you live?
May 04, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
So sorry that things have been so difficult. I hope you can find some relief soon.
May 04, 2009
mommato3
Thanks for all the knowledge!! As we are all traveling along the reflux journey, it is important that we explore all options when diagnosing and treating our children. It is very unfortunate that most doctors overlook these critical things. As I wrote in a previous post about the doctor who wants to do a fundo on my five month old. You ladies have given me the knowledge where I feel confident and empowered enough to say no, get other opinions, and leave no stone unturned. Thank you!! I will continue to pray that you will find many foods Eric can eat.
May 04, 2009
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Thanks, Ellen, for sharing your story -- although I know that it is an abbreviated one, and doesn't reveal the tremendous emotional burden you've been shouldering for long. I know there have been time when you just wanted to make it all go away, and there will no doubt be more of those in the future, but the strength of your character and your love are clear. May the future hold more light than darkness for your entire family...
May 05, 2009
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 all for the very kind words & just for letting me get that out! It has been a bad week with no food at all for my poor son. I know we have years ahead of us just to see if we can get any safe foods. I also fear for my 10 year-old daughter who shows some alarming signs of an eos. disorder (there is a 60% increase in risk for a sibling). Jessicalynn-no swallowed steriods, but we will have to keep that in mind depending on the scope results. Rissaroo-support groups on-line only (kidswithfoodallergies). Lorenzomama-beautifully put, thank you & glad your guy is doing better. Ellen
May 05, 2009
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Photobucket
So sorry that they found EVEN MORE esinophils with this last scope. you have been through so much with him. i'm so glad that you found a daignosi for Eric, but so very sad that it has to be so rough for all of you. i hope he can start eating soon enough and that once you start re introducing foods, he will be able to tolerate them. :) Take care. -Sarah
May 06, 2009
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 Sarah - I know you can understand how frustrating/sad it is when their medical issues continue on and on. El
Check with your
doctor first!