Can Someone Please Help?!

[concerned-mom061]

Her rash, has she been on this formula since she was eight months old? Is there a liquid supplement that the doctor could prescribe so she doesn't have to have the formula and you can work on other high fat foods like avocado, coconut oil?

No...she was on neocate when the rash and diarrhea started. Then she was switched to a soy formula which made everything 10 times worse. Then they took her off of everything and fed her through her veins using TPN. The diarrhea got better, but the rash got worse.

Her pediatrician is very involved in her care, and even she is not sure of what to do. Also, she has never eaten enough solid foods to survive on. She barely takes enough formula, but we have her feeding tube to rely on.

[TCA]

Sorry - I was out of town all last week and just now saw your post. I think I may can help.

My daughter is on a feeding tube (G-J) and is 17 mos. We are currently seeing 3 different feeding therapists to try to get her to eat. It's not easy, but we're make baby steps and I see a little more progress each week. These things take lots of TIME so try not to stres about that right now.

I think you need to focus on getting her on a formula that she can tolerate.

We went through all of them with my daughter and she couldn't tolerate any. I ended up being Dairy, Gluten, and Egg free and pumping until last month. We finally found a formula that worked with Neocate. It is the most specialized formula you can find. I highly recommend that you call your dr. in the morning and get him to write a perscription to get it. Insist to see a nutritionist who deals with babies and they might have some samples to get you started. It is insanely expensive, but it has worked when nothing would with megan.

She also had the terrible diaper rash. She can't handle any of the mainstream ointments. Desitin is AWFUL. The only thing that has worked for either of my kids is an old product called Caldesene Powder. It truly works miracles. I found out about it from my dad who used it on me when nothing else worked 30 years ago. I've found it at some smaller drug stores. You can probably find in if you look around and call some places. You may have to ask that they order it for you.

Once you get the formula under control, then start working on her eating. If she feels so bad from all these other things, food is the least of her concerns. Let her get nutritional balanced, then worry about getting her to eat. I found Avocado to work wonders in my daughter. Her nutrtionist told me that the fats are very similar to that of breast milk after I had been using it for a few months. I even pureed it to go through the feeding tube and it helped her tremendously.

There are lots of oral stimulations toys out there that can help in this dept. Walmart has a star teether that vibrates. Babies R Us has some vibrating gum massagers and other things that help. Get her these toys to keep her mouth active. Also introduce new scents, since the olfactory senses are so integral in eating.

Feel free to PM me anytime. I'm in the same boat, just been in it a bit longer and managed to find some things that work. I've learned a lot from the therapists. I will keep you and the baby in my prayers.

EDIT************************

I just saw your last reply and saw you have tried Neocate. Another one to try is Petamen and there's one other that is escaping me right now. I'll look it up and let you know.

HUGS! I do understand what you're going through. Do you ming if I ask what part of the country you are in?

[concerned-mom061]

Sorry - I was out of town all last week and just now saw your post. I think I may can help.

My daughter is on a feeding tube (G-J) and is 17 mos. We are currently seeing 3 different feeding therapists to try to get her to eat. It's not easy, but we're make baby steps and I see a little more progress each week. These things take lots of TIME so try not to stres about that right now.

I think you need to focus on getting her on a formula that she can tolerate.

We went through all of them with my daughter and she couldn't tolerate any. I ended up being Dairy, Gluten, and Egg free and pumping until last month. We finally found a formula that worked with Neocate. It is the most specialized formula you can find. I highly recommend that you call your dr. in the morning and get him to write a perscription to get it. Insist to see a nutritionist who deals with babies and they might have some samples to get you started. It is insanely expensive, but it has worked when nothing would with megan.

She also had the terrible diaper rash. She can't handle any of the mainstream ointments. Desitin is AWFUL. The only thing that has worked for either of my kids is an old product called Caldesene Powder. It truly works miracles. I found out about it from my dad who used it on me when nothing else worked 30 years ago. I've found it at some smaller drug stores. You can probably find in if you look around and call some places. You may have to ask that they order it for you.

Once you get the formula under control, then start working on her eating. If she feels so bad from all these other things, food is the least of her concerns. Let her get nutritional balanced, then worry about getting her to eat. I found Avocado to work wonders in my daughter. Her nutrtionist told me that the fats are very similar to that of breast milk after I had been using it for a few months. I even pureed it to go through the feeding tube and it helped her tremendously.

There are lots of oral stimulations toys out there that can help in this dept. Walmart has a star teether that vibrates. Babies R Us has some vibrating gum massagers and other things that help. Get her these toys to keep her mouth active. Also introduce new scents, since the olfactory senses are so integral in eating.

Feel free to PM me anytime. I'm in the same boat, just been in it a bit longer and managed to find some things that work. I've learned a lot from the therapists. I will keep you and the baby in my prayers.

I'm truly sorry to hear about your daughter. I'm glad things are getting better for you.

My baby girl had a NG tube at first at 18 days old, and then they placed a G-tube in at 6 weeks, then another GJ tube, and now back to just a G-tube. We've had nothing but problems w/it.

She was on Neocate from 2 weeks to 8 months. It helped..but all the problems started while being on it. Also, we had a terrible time getting her to do PO feeds w/it. She gained weight really well at first, but had a lot of problems w/reflux and runny stools. Then, at 8 months she started losing weight and eveuntually lost 4 pounds in a 2 month period.

She gained some of the weight back on Pregestimil, but she isn't growing in length. Mentally and physically she's fine.....she runs around and talks. She just has her times. For the past 2 months she takes a 3 hour nap in the morning, a 2 hour nap in the afternoon, and goes to bed around 8 or 9 and sleeps until 8 or 9 the next morning....but lately she waked up during the night crying a lot, but I can usually get her back to sleep pretty quickly.

Just out of curiosity..how big was your little girl at 13 months old, and how big is she now?

I'm just looking for something to help ease her pain and discomfort, and for foods and formula that she can tolerate and actually eat. We do use her feeding tube, but she has come so far and I really hate to depend on it like we once had to. I'll do anything I have to in order to help my baby, but I hate her having to go through this all over again.

I will keep you and your daughter in my prayers as well.

EDIT************************

I just saw your last reply and saw you have tried Neocate. Another one to try is Petamen and there's one other that is escaping me right now. I'll look it up and let you know.

HUGS! I do understand what you're going through. Do you ming if I ask what part of the country you are in?

Okay...so you did see that. I've never heard of Petamen...what is it and where can I find it?

I am from Georgia.

[Fiddle-Faddle]

If she has such severe food sensitivities, then ANY finger food would be enough to set her off. TCA is right--you've GOT to get the formula under control before trying anything else. Age at this pont DOES NOT matter. What matters is that you not put anything into her system that is irritating her tummy. If formula is nthe only thing that works for now (and so far, it isn't working), then she should have only formula. She CAN learn to eat other things later. There is help available for that..

A whole other issue: vaccines. My child who had the horrible rash for 8 months had it because of a reaction to vaccines. That CAN be a trigger for some kids (maybe more than some kids). Yet one more thing you need to research in your (ha ha) spare time... If it weer me, I'd hold off on ALL vaccines at this point until the feeding stuff is under control, but others would disagree, and it's certainly not a crystal-clear issue, unfortunately. At the very least, though, I'd recommend stretching out the vaccines (don';t follow the recommended schedule--at least there is no intelligent debate on that--there is NO reason to give a compromised baby 4 vaccines at once, their systems can't handle it!). Only give one vaccine at a time, and wait a few MONTHS in between each vaccine. And be aware that most flu vaccines still contain mercury, which has been a major problem with many on this board, and is a known neurotoxin. The chicken pox vaccine, too, contains mercury. Most of the others are no longer produced with mercury.

[concerned-mom061]

If she has such severe food sensitivities, then ANY finger food would be enough to set her off. TCA is right--you've GOT to get the formula under control before trying anything else. Age at this pont DOES NOT matter. What matters is that you not put anything into her system that is irritating her tummy. If formula is nthe only thing that works for now (and so far, it isn't working), then she should have only formula. She CAN learn to eat other things later. There is help available for that..

A whole other issue: vaccines. My child who had the horrible rash for 8 months had it because of a reaction to vaccines. That CAN be a trigger for some kids (maybe more than some kids). Yet one more thing you need to research in your (ha ha) spare time... If it weer me, I'd hold off on ALL vaccines at this point until the feeding stuff is under control, but others would disagree, and it's certainly not a crystal-clear issue, unfortunately. At the very least, though, I'd recommend stretching out the vaccines (don';t follow the recommended schedule--at least there is no intelligent debate on that--there is NO reason to give a compromised baby 4 vaccines at once, their systems can't handle it!). Only give one vaccine at a time, and wait a few MONTHS in between each vaccine. And be aware that most flu vaccines still contain mercury, which has been a major problem with many on this board, and is a known neurotoxin. The chicken pox vaccine, too, contains mercury. Most of the others are no longer produced with mercury.

Yes..I can see what you are saying. I guess I just have a fear b/c of what we've already been through w/her...but I don't want to do anything to hurt her. I've been following her pediatrician's advice. I am new to this whole thing as this is my 1st child. I am raising my 12 year old twin brothers, but they are perfectly healthy besides asthma....and one of them has chronic stomach aches, but it seems to be a mild problem. They have never gone through this whole mess.

As far as vaccines go..b/c of her immune system problem she is not allowed to have any live vaccines. She hasn't had any recently. So, I guess that one is under control.

Thanks for the advice.

[Guest Robbin]

I am so glad Alison and Tanya posted here, I know what problems they have had and you have two experts with many ideas there! I am so glad Megan is gaining weight, Tanya! I still am praying for her!

I was thinking about my sons and the problems I have struggled with their eating and when you said the "texture" seems to be a problem it really rang a bell with me.

My 13 year old with all the allergies ALWAYS says when he doesn't like a food that the texture bothers him. I was thinking about this and I have a theory--bear with me--I tried holding my breath and not paying attention to the taste of foods and texture was the only thing that really was apparent. Given that idea, and the fact that ever since Zack was a teeny little one, he mainly likes foods that are highly seasoned. When he was little he always wanted ketchup on everything, now he wants Mexican foods, Chinese foods, or anything he can put hot sauce on. I really think these kids have a LACK OF TASTE BUDS! I wonder if there is a condition that has this symptom? Maybe mine just has a milder case of it, and your baby is extreme? Any ideas out there about a condition like this???

It really is frustrating, I know, and for a little baby like your baby and little Megan, it is vital that they eat. I know with my son that it is so upsetting to work around all the allergies and intolerances, put a meal together that sometimes takes hours, and have him either not like the way it feels in his mouth (he gags too!!! AT THIRTEEN STILL!!!) , OR cover the entire thing in Texas Pete!!

Also, the rice milk--I use Westsoy rice milk-no barley--he only drinks it with Hershey syrup, though.

You and your baby are in my prayers and I hope you keep us posted.

EDIT: I forgot to ask this but, is the rash only on her bottom? Perhaps she is allergic to the diapers? My oldest son couldn't wear disposables and had to use cloth diapers with him--ugh-soaked, washed, bleached, and double rinsed. So glad when that one was potty trained, lol.

[Fiddle-Faddle]

Hmmm, Robbin, really interesting ideas there. My oldest had major gag reflex (not like Megan's, just the reflex was very very strong)--he couldn't swallow peanut butter til he was past 4 years old. And he is the ONLY member of the family to like spicy food. But when he was a baby and still nursing, if I ate Mexican food, he would be colicky for hours. Go figure.

I bet you're on to something...

[concerned-mom061]

Hmmm, Robbin, really interesting ideas there. My oldest had major gag reflex (not like Megan's, just the reflex was very very strong)--he couldn't swallow peanut butter til he was past 4 years old. And he is the ONLY member of the family to like spicy food. But when he was a baby and still nursing, if I ate Mexican food, he would be colicky for hours. Go figure.

I bet you're on to something...

Yeah, I understand what you are saying. I have often thought that the gagging thing had to be some kind of disorder b/c m along w/lots of other members of my family, have a very sensitive gag reflex. I can barely swallow a pill w/out throwing up, and if I eat or drink anything that has a bad taste, I get really sick.

As far as her not having strong taste buds, I don't think that's the case w/her. She hates her formula, but she likes pedialyte. She also has preferences with her medicines. Also, about 90 % of the time she won't even let the food ger to her mouth before she's made up her mind. I've tried to trick her in to tasting things, but she will fight me and spit it out, gag on it, or throw it up. There have been times that we had to literally force her to eat, but I don't like doing that so I don't anymore.

I'm not sure about the whole spice thing. She has severe Reflux that she's had since birth. She had a nissan-fundoplication at the age of 6 weeks, but by 8 months she started vomiting again. It doesn't take much to make her sick, but it does take a lot of pressure to make her throw up.

The rash is definitely not due to the diapers. We have gone to cloth diapers, and there is no improvement. Also, she will not stop going to the bathroom!! Her diarrhea is worse.....she's had 16 or 17 diapers every day since last monday. We are giving her Immodium twice a day at the request of her doctor. Also, she just started Levsin drops. It's not slowing down!!

Maybe her past history will ring a bell w/someone.

-She had a Grade 1 Bleed in her brain at birth

-A heart murmur, Mild Pulmonary Stenosis, Moderate VSD

-Severe GERD

-Jaundice

-Apnea

-Anemia-5 blood transfusions

-G-tube placement and fundo at 6 weeks

-Spent the 1st 4 months in the hospital on tube feedings and TPN

-Has had several blood infections

-Blood in her stool

-GI bleed

-Chronic Gastritis

-Chronic ear and sinus infections-soon to get tubes

-Never responded to any of her vaccines and has Immune System Disorder....having to get weekly injections

-Chronic Diarrhea and battles w/constipation

-Pneumonia

-Stayed in the hospital from 8 to 12 months due to constant dehydration, weight loss, uncontrollable diarrhea, was on TPN

-The site around her G-tube site will not heal and always leaks and bleeds

-Stays malnourished w/low protein, iron and calcium

-Runs a fever a few days out of every month

-Constant feeding intolerances

-Food allergies:milk, wheat, eggs, soy, fish, and peanuts

-Biopsy positive for villous atrophy and blunting, gastritis, deuodenitis, and a strange bacteria

-Constant battles w/rashes on body and diaper area...diaper area will not go away

-Failure to thrive...not maintaining weight and not growing in length

-Has had seizures...but related them to electrolyte disturbance

-Constant movement of the tounge

-Excessive amount of gas...distended belly and found in all x-rays.

-Slow motility until 8 months....now almost like she goes as soon as she eats..w/in the hour whatever she eats comes out

-Doesn't seem to digest properly

I tried to cover everything. Maybe someone else has had these same problems.

[TCA]

I've tried rereading the thread to help you put a plan together. I sent you a PM about breast milk, so let me know about that. Here's my opinions for what they're worth:

You said she was on Neocate until 8 mos when all the D and rash started. Were you starting her on foods at that time and maybe that's what caused the problems and not the formula? If so, I would give Neocate another try. Elecare is a similar formula that we tried unsuccessfully, but might work for you.

I really do know how hard it is mentally to take your child off of foods, but it really sounds like that is the next thing that needs to be done to give you time to figure out what is causing what. The only way you can pinpoint it is to change one thing at at time. If the formula is the only factor changing, then you don't have to second guess yourself on everything. The eating WILL come, but for now you need to reassess her formula.

What is the prognosis on your daughter's heart? Megan's defect is also a pulmonary one - Pulmonary atresia. It is AMAZING at how much better she is doing post repair. Is surgery in your daughter's future?

You mention she had a positive biopsy for celiac. I then read something about giving her Rice Crispies. These are NOT gluten-free. I made that mistake for a while too, so don't feel bad. You may need to reassess just how gluten-free she is. Is there other gluten in the house she is coming into contact with? My daughter got VERY sick after going gluten-free when I bought some Curel lotion I kept by the sink. Turns out it had gluten in it. This minimal exposure stopped her growth and started back her issues. After a month or so of her growth stopping I went through the house and got rid of EVERYTHING with gluten (food and nonfood). Now there is no chance of CC or her accidentally getting into something. She and my son are so sensitive that if I even touch anything with gluten and touch their hand, then they eat with that hand or put it in their mouths, they get sick. Your daughter might be this sensitive too. Do you eat gluten? Do you kiss her afterwards? We found that out the hard way with my husband who still eats gluten. Sorry if you already know all this, but I didn't at first and I made soooo many mistakes. My sig line has a link to another thread with suggestions on going gluten-free if that might help.

Have you seen a geneticist? This is something we have considered. We were scheduled to see one, but her heart condition worsened and surgery was moved up, so that got cancelled. There are many genetic disorders associated with heart defects, celiac being one. It might be worth investigating to help diagnosis.

I am praying for both of you. I am an engineer by trade, so it is easy for me to approach things systematically. I think this has been key in helping Megan. Too many variables make it to where you can't figure out what is going on. HUGS!!!!!

[concerned-mom061]

You made some really good points and suggestions. I really appreciate it...and again, I'm truly sorry about what you and your children are going through.

Yeah, I have learned the hard way about foods. She doesn't get anything now except for formula. As for the rest of us...we haven't went gluten-free yet. I raise my 12 year old twin brothers who both would possibly benfit from going on the diet, but it's not so easy w/them. I am very adamant about everyone washing their hands and faces before touching her. I'll have to look into the other products in the house.

She started the D when she was 8 months old so we started trying baby foods to try and thicken up her stools....however, it just got worse after we started feeding her. I wouldn't mind giving it a try again, but I am almost positive we'd never get her to take it. It took us so long to get her to take it the 1st time, and then she'd never take more than 2-2 1/2 ounces at a time on her own. I am supposed to talk to her doctor tonight about it all, and I'll ask what she thinks. Her doctor is very close to us, and she knows how Kylie is about her foods.

[Guest nini]

do the older boys play with playdough or other gluten containing art supplies? Playdough contains gluten and that was one of the sources of my daughter's mysterious rashes. (head to toe hives).

I feel so fortunate that my daughters issues were so mild compared to your children... I wish I had some other suggestions for you but unfortunately I don't.

I think Tanya has some very good suggestions, she's certainly been through it all with Megan.

[concerned-mom061]

do the older boys play with playdough or other gluten containing art supplies? Playdough contains gluten and that was one of the sources of my daughter's mysterious rashes. (head to toe hives).

I feel so fortunate that my daughters issues were so mild compared to your children... I wish I had some other suggestions for you but unfortunately I don't.

I think Tanya has some very good suggestions, she's certainly been through it all with Megan.

No, my little bros are past that stage. She isn't exposed to much. Also, I know it's nothing from around here b/c when they had her in foster care for those 30 days, it got worse. The rash spread to her whole body..it was even in her ears. Though, I did get to see her twicw a week. She came home from the hospital w/the rash that bad.

Yeah, Tanya seems to be a real trooper, as does Megan. Then again, you all are amazing!

[Guest Robbin]

Omgosh, I have had your little girl on my mind all day. I hope you don't think I meant to give her any spicy foods at all. On the contrary, I was just thinking that with these little ones maybe they have a strong aversion to bland foods. This is something to bear in mind later when she heals. She may want foods with a lot of flavor. I know how hard it is to have a twelve year old stay gluten free btw, it is not easy when their friends are all eating out and having things they cannot have. The only up-side for your little girl is that she will not know the difference and will be used to the diet by the time the difficult pre-teen and teen years come along.

Ask your doctor about maybe contacting La Leche League at your local hospital. Maybe they have a breast milk supply option for you.

Another thing that I thought of is that she might have a canker sore or thrush in her mouth? This sometimes happens with celiac and yeast infection. Maybe check her mouth or have the doctor look at her mouth and gums.

I echo what others have said to --maybe some kind of cc issues are going on, or another undiscovered intolerance. You are in my prayers. Having a sick little one is the worst kind of stress there is. Please keep us posted.

[TCA]

The Neocate does taste AWFUL. I tried it and it has to be akin to cleaning fluid or something - YUCK! Meg is actually on Neocate 1+. It's a 30 kcal/oz. formula as opposed to 20 like the infant formula. It is also nutritionally balanced for that age. It has no taste, but you can get flavor packets for it to help. No luck yet with getting Megan to drink it, though.

Since she's not eating, be sure to work on oral motor skills with vibrating toys, nuk brushes and the like. Use a finger toothbrush on her a few times a day. Start on one end of one jaw bone and go around the gum, then to the other jaw bone and around in one clean sweep. Stopping and going is too much for kids with sensitivities. Go from back to front on her tongue as she will tolerate. Once she's done, though, back away. Some past therapists told me to do it now matter what, but I think that made Megan worse. I guess there needs to be a balance.

Robbin has some excellent points about texture and taste of foods. I agree and Megan's feeding thereapist says the same things. You're a smart woman, Robbin! I have always had terrible sinus issues and can't taste much when I'm having problems. I LOVE spicey foods. It's the only way I can taste it. Things are improving since going gluten-free, though.

I hate so bad that Megan has had to go through this, but I pray that her troubles can in some way help you. Let us know what the dr. says.

Hugs,

Tanya

[TCA]

I just had to see how things are going. Any word? I know I've checked 20 times in the past couple days!

[concerned-mom061]

Hello. Sorry it took me so long to respond. Kylie has been keeping me busy. The night before last she kept me up all night crying....which is really not like her. Then, at about 4 am she had a stool that was black and green. She had 4 more after that the same color. We went to the doctor yesterday morning, and she lost 4 ounces since we went on Monday. They took one of the stools she had in the office and sent it off for tests. I will hopefully hear something soon. Her stools are no longer black, but they still keep coming. She is acting better today, but her rash is really bothering her. I got the ointment in the mail today that Andrea sent me, and I'm hoping it will help.

I hope all is well w/all of you guys and your children!

With Much Appreciation and Admiration to you All,

Bree

[GFBetsy]

Just another possibility to help with the diaper rash: try using Lansinoh (it's ultra-refined lanolin). It's not medicated at all, it just puts a barrier between the baby's skin and the wet diaper. I once (only once!) used Desitin on my oldest daughter, and she screamed and screamed . . . it was awful! So from then on we just used Lansinoh . .. it really helped give her skin time to heal itself. Target and Wal-Mart sell it, I'm sure.

Good luck with everything!

[Fiddle-Faddle]

Just sending you some good wishes and prayers

[AndreaB]

Please keep us posted as you can Bree.

[chrissy]

bree----have you ever heard of eosinophilic disorders? there is another condition called FPIES. your baby sounds like she could possibly have one of these conditions. in a nutshell, they are pretty much allergic to all food. one of the conditions can be outgrown. if you would like to know more about this, i can get you in touch with a friend of mine who has a child with FPIES.

there are adults that are on neocate only.

there is a doctor back east that specializes in this type of illness.

[concerned-mom061]

bree----have you ever heard of eosinophilic disorders? there is another condition called FPIES. your baby sounds like she could possibly have one of these conditions. in a nutshell, they are pretty much allergic to all food. one of the conditions can be outgrown. if you would like to know more about this, i can get you in touch with a friend of mine who has a child with FPIES.

there are adults that are on neocate only.

there is a doctor back east that specializes in this type of illness.

Wow...I just researched it, and that's scary. Either one could be it in a nutshell. I have never heard of either disorder. I am definitely going to bring it up to her doctor. They did a biopsy on every part of her GI tract except for her esophagus. Thanks for bringing this to my attention.

And to everyone else who wrote....thank you for your support and ideas! You all have been so helpful!!! I feel so over-whelmed by all of this, and I stay so lost as to what to do for her. It really helps having other people that know what I'm going through to give support and advice in these trying times. I've learned more in this past couple of days since I've been talking to you all than I have since she 1st started having problems. Doctors may have the degree....and some are really awesome....but there is nothing like a mother's instinct when it comes to her child.

God Bless You All!

With lots of hugs to you all,

Bree

[TCA]

EE (and EG) is one of the things Megan was tested for too, but thank God it was negative. If you decide to do another scope, make sure you use a dr. that is very familiar with the disease. It is hard to diagnose and I wouldn't take her to just anybody. The dr. we use is at vanderbilt and has experience with EE. Let us know how the ointment that andrea sent works. I'll also be glad to send you some of the caldesene powder. It really did work miracles on Meg when her rash was that bad. A good resource for you might be :

Open Original Shared Link

and

Open Original Shared Link

Cheri recommended the last one for me and got me signed up. they really helped a lot on their forum.

What did the Dr. say about going back to Neocate?

[concerned-mom061]

EE (and EG) is one of the things Megan was tested for too, but thank God it was negative. If you decide to do another scope, make sure you use a dr. that is very familiar with the disease. It is hard to diagnose and I wouldn't take her to just anybody. The dr. we use is at vanderbilt and has experience with EE. Let us know how the ointment that andrea sent works. I'll also be glad to send you some of the caldesene powder. It really did work miracles on Meg when her rash was that bad. A good resource for you might be :

Open Original Shared Link

and

Open Original Shared Link

Cheri recommended the last one for me and got me signed up. they really helped a lot on their forum.

What did the Dr. say about going back to Neocate?

I don't think I want her to go through another scope. She's had one done several times, but always for a different reason. She has a really good GI doctor in Macon. He was her doctor from the beginning, and then we got sent to Augusta when she was 4 months old. That's where the crazy doctor that tried to accuse me of causing her problems is from. Now we are back w/the original doctor that we never should have left.

I'm glad Megan didn't have it, and I pray Kylie doesn't either. We shall see. I appreciate your offer w/the powder, but I already had my local drug store order it. I'm going to pick it up later.

As far as Neocate goes.....it's still being debated. If Kylie loses any more weight, we probably will.

[Fiddle-Faddle]

I don't think I want her to go through another scope. She's had one done several times, but always for a different reason.

But what if the problem really is EE/EG and another scope is the only way to find it? (Not that I'm a big fan of scopes, I'm just trying to look at all possibilities.)

[concerned-mom061]

But what if the problem really is EE/EG and another scope is the only way to find it? (Not that I'm a big fan of scopes, I'm just trying to look at all possibilities.)

Well, is a scope really the only way to tell? Is there not some other non-invasive way? I'll do anything in this world to help her, but I hate to put her through all that if there is something else we can do. I understand that you are not telling me to do it, and that you're not a big fan of it....I'm just asking if there is another way.