Megan's Gagging Isn't Any Better

[TCA]

EE/EG is suspected, thus the scope. I went back ondairy and egg and as much as I love it I'm thinking of coming back off of it. Her gagging is worse, if that's possible and the eczema is getting worse too. I'm so afraid it's EE/EG. For some reason, I never had any doubts or fears about treating celiac, but EE/EG scares me. Just finding the food culprit is so hard.

Vandy is very good about letting you hold the babies. For 2 days solid before her last surgery, Jarod and I took turns holding her 24 hrs. a day. Of course we couldn't right after surgery because of the ventilator and such, but as soon as we could they let us. We stayed by her bed stroking her and talking to her constantly, though.

Vincent - the surgery may be sooner than planned since things have been so crazy. She'll be in the hospital Wed.-??? until the IV blows, so I hope we can get a plan together then.

As for foods. I eat a lot of veggies of all kinds, but especially tomatoes, potatoes, sweet potatoes, carrots, green beans, garlic, onion, peppers, squash. I also eat a LOT of fruits - you name it, I eat it. I've eliminated each systematically and saw no change, though. I really don't think chicken bothers her since she's had that in baby food form with no noticeable change. I don't eat much beef, but do occasionally. I really suspect rice since she seemed to improve slightly off of that. I wonder about grain intolerances in general, but don't even know where to begin there. I need to pick 6 foods and prioritize them and then just eat what has had negative tests for a while, then add one food back at a time. Does that sound reasonable? I can't decide if I should go ahead and re-eliminate milk, rice, and eggs or wait til after the scope. I just want her to feel good, but what's the use in testing if I eliminate everything beforehand??????? I never know if it's related to something else or what I'm eating.

[Judyin Philly]

Prayers still flowing....so glad you posted now as i'm getting off.

sorry to ask q's as I know how difficult this has been for you but i've been following and researching what i didn't understand or asking my chiro...so i didn't have to ask you ....but...what is this

{EE/EG is suspected, thus the scope. I went back ondairy and egg and as much as I love it I'm thinking of coming back off of it. Her gagging is worse, if that's possible and the eczema is getting worse too. I'm so afraid it's EE/EG. For some reason, I never had any doubts or fears about treating celiac, but EE/EG scares me}.

and why is this worse.???

hugs and love Judy

[Satori]

and why is this worse.???

hugs and love Judy

For one thing which would really upset me as a fellow BF mom is you can't BF an EE/EG kid although I do know of 1 mom who went Neocate only herself to be able to BF but she's the only one I have ever known to do it. These kids are in a lot of pain and can only take Neocate or Elecare for food and are often on g-tubes because they refuse to drink the formula since its so nasty. Elecare just came out with a new flavor though, Vanilla and my dd LOVES it, at least she does when mixed with Nestle chocolate syrup:)

[Fiddle-Faddle]

...what is this

{EE/EG is suspected, thus the scope. I went back ondairy and egg and as much as I love it I'm thinking of coming back off of it. Her gagging is worse, if that's possible and the eczema is getting worse too. I'm so afraid it's EE/EG. For some reason, I never had any doubts or fears about treating celiac, but EE/EG scares me}.

and why is this worse.???

Here is a link explaining EE/EG: Open Original Shared Link

They also mention churg/strauss syndrome, which is something that I think Judy and Armetta might be interested in: Open Original Shared Link

[Fiddle-Faddle]

Hi, Tanya,

The kids and I just came in from watching some neighborhood fireworks that we could see from our yard. We also saw the first star come out,and we all wished on it--for good health for your little Megan...

[shai76]

I'm so afraid it's EE/EG. For some reason, I never had any doubts or fears about treating celiac, but EE/EG scares me. Just finding the food culprit is so hard.

Eosinophilic esophagitis/gastritis is intimidating at first, but a lot of young children outgrow it, once the culprits are found, as long as you completeyl eliminate the allergens. It was frustrating for me when I started to develope more and more allergies as an adult. Did they ever consider the possiblity of steroids if this is her problem? Helps a lot of people with the inflamation.

You also might want to consider the possiblity that breast feeding might have to end sooner than later. She might do better on a prescription formula. A lot of people with EE heal quickly on formula. Even adults.

[Fiddle-Faddle]

It's weird, but the first time I ever heard of eosiniphils was 15 years ago when my cat had a sort of blister on his chin that wouldn't go away--they called it "eosiniphilic granuloma ulceration complex," and said he'd have problems with it for the rest of his life, and he'd need lots of steroids, blah blah blah--but he seemed to outgrow it after about 18 months or so. Then I never heard about eosiniphils again until last night when I saw the TV story about churg/strauss syndrome, and now this EE/EG. Weird.

Oh, hi, Tanya, I seee you're on--how are you tonight?

[shai76]

As for foods. I eat a lot of veggies of all kinds, but especially tomatoes, potatoes, sweet potatoes, carrots, green beans, garlic, onion, peppers, squash. I also eat a LOT of fruits - you name it, I eat it. I've eliminated each systematically and saw no change, though. I really don't think chicken bothers her since she's had that in baby food form with no noticeable change. I don't eat much beef, but do occasionally. I really suspect rice since she seemed to improve slightly off of that. I wonder about grain intolerances in general, but don't even know where to begin there. I need to pick 6 foods and prioritize them and then just eat what has had negative tests for a while, then add one food back at a time. Does that sound reasonable? I can't decide if I should go ahead and re-eliminate milk, rice, and eggs or wait til after the scope. I just want her to feel good, but what's the use in testing if I eliminate everything beforehand??????? I never know if it's related to something else or what I'm eating.

A lot of those foods your eating can increase reflux symptoms. Squash and sweet potatoes are great, but garlic and onions will definitly cause more harm to her sensitive stomach. The only way I can see an elimination diet working with her is to find a good, prescription formula and keep her on it until the symptoms go away, then slowly introduce foods.

For me the blood tests were very accurate. They are a great starting point.

[Fiddle-Faddle]

. The only way I can see an elimination diet working with her is to find a good, prescription formula and keep her on it until the symptoms go away, then slowly introduce foods.

As I understand it, one of the big difficulties Tanya has been having is that she can't find a formula (prescription or otherwise) that Megan can tolerate...

[TCA]

Hi, Tanya,

The kids and I just came in from watching some neighborhood fireworks that we could see from our yard. We also saw the first star come out,and we all wished on it--for good health for your little Megan...

What a coincidence, Cole and I wished on the first star too and for the same thing. She's had more energy today, but the eczema is a lot worse and she's gagged soooo much. I'm confused as to what may be causing what.

Judy, EE/EG just seem a lot harder to control than celiac disease. With celiac disease we know gluten is the culprit, avoid it and all is well. EE/EG isn't so simple. Just finding the offending food is a huge challenge. I'm afraid to stop pumping because she hasn't been able to tolerate any formulas gastrically, so just changing over isn't so easy. I guess we'll cross that bridge when and if we come to it.

Shai76 - glad to hear you can outgrow it. I didn't know that was possible. I may be asking you some questions if the biopsy is positive.

Satori - forgive my ignorance, but doesn't adding chocolate syrup defeat the purpose of Neocate? Does your daughter have EE/ED?

Thanks for all the comments. Hope everyone has a good night! Sweet dreams!

[shai76]

Tanya, which formulas have you tried Megan on?

I know the formula switching around game since I did it with my son.

I've read about how some children may outgrow EE by the age of 5 or 6. I'll try to find that information again for you if she turns out to have it. I'm hoping my son doesn't either. It's genetic, and he has also had reflux since birth, gagging and choking as an infant, dysphagia, sandifires syndrom. Npw he has a scope Wednesday to see if he has the allergic inflamation like me.

I know when my son was a baby, it was very scary. I felt out of control. I was afraid to sleep at night for fear he would start gagging and choking and I wouldn't be awake to help him. It was terrible. So I really wish you the best.

What helped with us was keeping a diary of when he ate, what he ate, and when he had symptoms. That helped pin down a lot of problem areas, and helped the doctors figure out the right kind of treatment for him.

[Satori]

Satori - forgive my ignorance, but doesn't adding chocolate syrup defeat the purpose of Neocate? Does your daughter have EE/ED?

Not that I know of, I know a lot of parents with kids on Neocate/Elecare add the Nestle Chocolate or Strawberry (our GI suggested adding it). I don't think there's a single natural thing in those, just pure chemicals. We don't have EE but another lovely condition called systemic mastocytosis with the mast cells all parked in dd's GI tract so it acts like EE in a lot of ways. If you'd like to check it out go to www.mastokids.org systemic masto is very rare and most Dr's have no idea about it, we got lucky and got assigned to an awesome allergist/immunologist who's sub specialty was masto and turned our lives around with treatment but in our case it will be life long.

[shai76]

Wow, I can't believe a GI would suggest chocolate. That really makes reflux type symptoms worse. I can see strawberry though. With EE/EG that is something to be concerned about. Plus there are allergens in the syrups like corn. I wouldn't go there unless absolutely necessary, and if the GI doctor okays it, such as yours. Your child might be different then Megan.

[Judyin Philly]

Dear Tanya and all.

I know NOTHING of these conditions but do know for sure..your are all some of the bravest Mom's I've met (in or out of cyber space) Your love and devotion to your kids and your concern to help each other solve these issues restores my faith in our human race....hugs to you all.

I'm going now to look out my window and see if i can see a 'star' and wich on it too for all you and your special 'kids'

love and blessings

judy in philly

Tanya, shoot saw the shuttle didn't go today. Does that mean your hubby will be gone tomorrow too?

[Judyin Philly]

Hi Again--went out to find a star but just so cloudy but got the binoc's out and found one...and wished on it and prayed on it..who knows maybe we are all wishing on the same start around the US an C

love

judy

[TCA]

Judy - that is such a sweet thought from a very sweet lady. I'm sure God is hearing our wishes and prayers for all these kids.

Shai 76 - I know the scope is scary, but he'll be fine. My son has had 3. We're nervous about Megan because of her little heart being so weak and the anethesia. She's tried about every formula out there - Similac, soy something, enfamil, Pregestimil, alimentum rtf and powder, nutramagin, elecare, compleat pediatric, neocate infant and neocate 1+. she couldn't tolerate any of them until the G tube was placed and we're getting by on the neocate 1 +. Breast milk and avocado is all she could tolerate before that. We're doing half formula and half bm to fortify for extra calories since she's losing weight. It's a constant battle.

Satori, I've heard of masto before, but not very familiar. Thanks for answering my quesitons. I guess if she can tolerate it, then that's great. Is that all your daughter is consuming now or can she eat too? I looked at the site and didn't see a great explanation of how this is diagnosed. could you help me out here?

I hope both your kids have a great day.

*************

Meg had a TERRIBLE night. She choked up to 10 times an hour. I don't know if it's the formula or the fact that I'm back on milk and eggs. I just know she feels terrible. I'm going back milk and egg free for sure once the scope is done. Vandy brings meal trays to the room for bf mothers. They said they would work with my diet limitations, but I'm almost afraid to try it. I don't know how else to get my food, though. What do y'all think? Any experience with this?

[shai76]

I don't know what to tell you. I don't trust others to prepare food for me either. Maybe they will let you talk to the dietician who runs the cafeteria or something. Cross contamination can be a problem too.

Megan has tried every formula. If you've already tried formula exclusively I don't know what to tell you.

I hope her choking episodes begin to subside. Exactly how old is she?

I noticed my sons choking episodes got worse around 3-4 months and then started to get a little better. His were caused from silent reflux though, as well as food allergies that increased the reflux. He still has both, but the choking is gone.

I wish the doctors would find out soon what is causing Megans and what will help her heal. :/

[Judyin Philly]

TANYA..SHOOT...THAT NEWS MAKES ME SO SAD....

I JUST DON'T KNOW ANYTHING ABOUT THIS SO I CAN'T HELP..JUST FEEL SO HELPLESS AND KNOW THAT'S HOW YOU FEEL TO SO AT LEAST CAN RELATE TO THAT..

ALL I CAN DO IS SEND HUGS AND PRAYERS.

AT LEAST MAYBE HUBBY WILL BE HOME AS THE LAUNCH IS SCRUBED NOW FOR TODAY.

LOVE YOU

JUDY

[Fiddle-Faddle]

Oh, Tanya.

I suppose you're already holding her sort of upright all night? When my daughter's reflux was at its worst (and it was nothing like Megan's, we had it easy, though I didn't realize it at the time), I slept holding her in the rocker so that she would be as upright as possible. (I also just like holding my babies all night I couldn't sleep if they were in another room.)

[TCA]

Megan is 14.5 mos. We've been through all the formulas and then some. the GI is sure that she still wouldn't be tolerating the Neocate if it weren't going strait into the intestines. She's a tough one, that's the only thing all the drs. agree on. I"m afraid the choking is primarily caused by the hiatul hernia, but her heart is too weak to operate on it. I also think allergies are a contributing factor.

I keep Megan upright to almost a sitting position ALL the time. She is either sitting on her own, in her swing or lying in her bed where the mattress and the crib itself is propped up. I also have a pillow under her, so she about at a 60 degree angle. She doesn't like to be held while she sleeps. My son still wants me to lay down with him to go to sleep, but she has never wanted to be held while sleeping. I've tried and she just fusses. I guess it could be worse, though. She's slept about all morning in her swing after being up almost all night.

Thanks again for the support. Really don't know what I would do without all of you. She just woke up, so gotta go.

Hugs,

Tanya

[Satori]

Judy - that is such a sweet thought from a very sweet lady. I'm sure God is hearing our wishes and prayers for all these kids.

Shai 76 - I know the scope is scary, but he'll be fine. My son has had 3. We're nervous about Megan because of her little heart being so weak and the anethesia. She's tried about every formula out there - Similac, soy something, enfamil, Pregestimil, alimentum rtf and powder, nutramagin, elecare, compleat pediatric, neocate infant and neocate 1+. she couldn't tolerate any of them until the G tube was placed and we're getting by on the neocate 1 +. Breast milk and avocado is all she could tolerate before that. We're doing half formula and half bm to fortify for extra calories since she's losing weight. It's a constant battle.

Satori, I've heard of masto before, but not very familiar. Thanks for answering my quesitons. I guess if she can tolerate it, then that's great. Is that all your daughter is consuming now or can she eat too? I looked at the site and didn't see a great explanation of how this is diagnosed. could you help me out here?

I hope both your kids have a great day.

Sarah now tolerates a lot of foods but it took 4+ years to figure it out. There were NO formulas she tolerated until she was around age 2 and then we found Vivonex Pediatric which is an elemental formula. Up to that point she was breastmilk only. She tolerated the formula but didn't like the taste so it was hard to get her to drink it. She finally started eating at 33 months when a g-tube was finally scheduled which is a story in itself that I pass telling right now but around the same time we decided to try Pediatric EO28 which is another elemental formula that comes in a juice box that you serve cold. It was a hit and she tolerated it. She's been on it for 3 years now for extra calories but hasn't gained anything in the last 6 months but that's because the idiot GI limited her to 1 box a day when she needs 2-4 boxes a day. I think he was trying to wean her off it without saying anything but I know my kid, she hits 200 calories at a meal and decides she's done eating for several hours.

Anyway, the masto is easy to test for, well the first part is anyway.. its a blood test checking Tryptase levels. If they come back high you pretty much know you have it but then the fun is finding out where its at in the body the mast cells are hiding out causing problems. When its the GI tract you tend to see massive food allergies and intolerances just like you do with EE/EG and the only way they can find that out is by biopsy and you have to have someone who knows how to do it correctly since there very difficult biopsies to get and the slides must be stained a certain way ect.

[shai76]

Tanya, they have no idea what it is in the Nocate that she is unable to tolerate? I am not certain, but I think it contains corn syrup solids, doesn't it? We will keep you in our thoughts and prayers.

[Fiddle-Faddle]

. Really don't know what I would do without all of you.

Hugs,

Tanya

Wish I could do more....

[VydorScope]

Vandy brings meal trays to the room for bf mothers. They said they would work with my diet limitations, but I'm almost afraid to try it. I don't know how else to get my food, though. What do y'all think? Any experience with this?

Call us! Get us a shopping list and we can bring it. You still have our number right? I am serious. You get me a shopping list of foods that I can find here in town (Kroger, Publix, Walmart or Wild Oats are the big ones in town) and I will get them to you either directly, or I can get help from my Sunday School Class for sure.

If we can not come in the room, I am sure we can get it to the nurses and they can bring to you.

[mouse]

Oh, Vincent, I cried when I read what you have posted for Tanya. That is so great and will be a wonderful load off of her mind. Tanya, I am still praying daily for Megan and you. But, an abundant of prayers on Wednesday.