Posted By Posting
Mar 09, 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 is 3 tomorrow - plus, no good news
I can't believe it has been nearly 3 years since Eric was born. Life was good for exactly 2 weeks, then the projectile vomiting started. This lead us to unnecessary surgery, countless clueless doctors, & eventually to one of the worst diagnoses of all: eosinophilic esophagitis. There is no chance of the child growing out of it & the only fix is removing many or all foods. After receiving the diagnoses last summer (he had 36 eos. in the esophagus), we started going to Children's Hospital in Phila. for guidence. Just a few months back we had to remove rice, peaches, potatoes, & corn (tested positive through patch testing that looks for delayed allergic reactions). This is in addition to the nuts, diary, eggs, soy, beef, fish, & citrus that we already had to avoid. Even so, he lastest scope with biopsy showed 70 eos. I think we are looking at removing wheat plus??? (bare minimum) to removing all foods. Never in a million years did I expect to be facing such a bleak future with my child. If you could say a prayer for him, I would greatly appreciate it. I hope all/most of your children are in a better place. Either way, it is a tough road when your child has medical issues. If only all this cr*p didn't exist!! Ellen
Mar 09, 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
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Hi Ellen! wow! that is such a long hard road to go down. I thought quinn had it bad with not being able to have sugar or starch. Poor lil guy! I hope that with the removal of all the foods that cause triggers, his little body can heal and develop immunities to all that it cannot tolerate now. That would be the hope in removing all foods at this time anyway i would imagine. Thank you for updating! -Sarah
Mar 09, 2009
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
(((hugs))). You're one of the strongest mommies I know. Like Sarah said, maybe removing all food temporarily will give him a chance to heal. I can't imagine what hell you and most of all Eric are going through. I think of you often and will continue to keep you in my prayers.
Mar 09, 2009
mely
Amalia 11/1/06, Silent reflux- Weaned off prevacid in the summer- back on again 15mg. Back on lactaid. Atalia- 6/17/08 DX with GERD and colic at 9 days of age. Appears to have mild MSPI. Upper GI. On Prevacid 22.5mg. Successful transition to whole milk! Eats everything!
Pic. Amalia and Atalia having fun at home.
I am so sorry Ellen. As you know, you and your little one are in my prayers. I thank God that you found a group of doctors who can help Eric. I can't imagine keeping your little one from eating...I'm sure you already belong to a support group- boy would I need one!! I pray God gives you the strength He gave Job- in the midst of his loss of all his children, his wealth and his health- he said "Naked I came to this Earth, naked I will leave. The Lord gives, the Lord takes away, blessed be the name of the Lord. " and "I know that my Redeemer lives and at last He will take His stand on the Earth." I don't know why God is allowing little Eric to go through this, but know for sure He cares and is there in the midst of it all.
Mar 09, 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.
((HUGS)) Ellen, I know this has been such a hard road for you and Eric, and your whole family, and feeling at a loss for hope for the future must be incredibly painful. I think of you two often, and will say a little pray each time I do....
Mar 09, 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.
My prayers are with you. I can't think of a harder task than trying to nourish your child with so many restrictions. I hope that he outgrows some of the allergies and that you find the strength and hope to deal with this. ((HUGS))
Mar 09, 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
We had to go on nothing but formula for over 3 months to give A's allergies and gut a rest. It isn't for for anyone over 1 and especially when they are used to eating stuff. I hope this works for him. I will say that A got somewhat better then. The problem is that it isn't something that can be a long term solution for most of these kids. I really hope that Eric gets better soon. It is so weird to read your story about how Eric was when he was born. It sounds so familar. Unfortunately, he is 3 and still dealing with this. My prayers are with you and Eric. -Amanda
Mar 10, 2009
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Ellen, I am so sorry that he still has Eos :( How frustrating and sad for you and Eric. You've come this far, and have done a wonderful job figuring things out to this point. Perhaps going off food for some time might help, but I can't imagine how difficult it will be. But I really don't believe Eric's future will be bleak, not with you as his mommy. It may be a difficult future, with lots of unknowns, but his happiness is not dependent on this one aspect of his life. If he is surrounded by love and acceptance, he can come through this. I know you have had a very hard time with him since his birth, but I bet you are so much more knowledgable, and patient, and compassionate, and empathetic because of it, whether you feel it or not. I know you are. And because of it, you are a better mother, and will be a better mother in the years to come. I've always believed that those who struggle in life have a greater appreciation for it. Hang in there, Mama. I will say a prayer for Eric, but I know you got his back ;) ((HUGS))
Mar 10, 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.
I just finished baking his cake (Cherrybrook allergy-free) & the icing tastes like fish (mixed with canola oil instead of butter - YUK). Even so, this will probably be his last cake (made of flour & sugar anyway). I wanted to thank you all for your kind words of encouragement and prayers. I know we will have to do what we have to do; I just wish it wasn't so. I think I'm more afraid of that feeding tube then anything else. I could do it for a year or so, but not indefinately. If having no foods makes him happier & feel better, it would be worth it. Thanks again & I hope all of your little ones are doing well. Ellen
Mar 10, 2009
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Hi Ellen! Sorry to hear Eric isn't doing well. I can relate to the pain you are going through. I wanted to mention that there are other alternatives to wheat flour for cakes...one year we used barley flour, another year we found something else. We also have done slushies (with crushed ice) and an ice castle "cake" in place of a cake when Max was not on food...you can find substitutes. If you make it something special, then it doesn't matter what it is made out of. Check out www.apfed.org...they have an entire section on how to make celebrations special without food. I hope that going food-only will allow Eric's gut to heal...you may be able to introduce food after he is completely healed...best wishes and happy birthday, Eric! I would also suggest joining a support group...there is a local PA/NJ EOS group...the help and support I received from them was equal, if not more, important than any medical treatment. They usually meet once a month at a central location. I would also suggest joining APFED...maybe consider attending the conference this summer too...it makes a world of difference to see stories of hope and also to just be around other people that "get it."
Mar 11, 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 Patti. I know you certainly understand how hard this is. I just joined APFED & I'll look into the PA/NJ group. I hope all is well with your family. Ellen
Check with your
doctor first!