Infantreflux.org | Anna is better!!!!

This topic has 9 replies, 1 voice, and was last updated 16 years, 8 months ago by Anonymous.

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January 16, 2008 at 6:50 pm #47418

Anonymous
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Hi everyone! I haven’t posted in a little while. The last time I posted my daughter was in pretty bad shape. She was vomitting, having blood in her stool and blood coming up in her feeding tube. She had the nissen so she should not be able to vomit. She didn’t gain weight last month at all. Well, I finally made a choice about the whole thing after my pediatrician called me saying he couldn’t help her anymore. I realized I was going to have to go with my own instincts. I asked the pediatrician to send me to an allergist. He SAID NO! I knew she had an allergy to the Neocate and I was right! I have never been a giant fan of hollistic doctors, but I needed someone who would listen to me and have some new ideas that didn’t involved painful tests and procedures. The GI doc told me he was going to put her on medications for problems they proved she did not have. When they stopped making sense I got desperate. Well, Anna is drinking goat’s milk with rice syrup added to it for extra calories and carbohydrates. It is pasturized. She went from taking only one ounce at a feed to instantly taking a five ounce bottle by mouth!!! She is taking in over 25 ounces of milk by mouth every day and only 5-7 through her tube! No vomitting. No more blood in her stool or in her tube!!! She is starting to do new things. She is reaching for things and trying to move around more. She is alittle constipated, but the doctor told me that she is pushing out mucus that had coated her bowels to protect them from the milk that was causing her problems. The color is normal though! I mean, if that isn’t an improvement I don’t know what is! I called the pediatrician and left a message telling him what I had done. I don’t know if I will hear back. I am thinking she is allergic to the corn syrup in the formula. It makes up over 50% of the formula. I told the nurse I want to see an allergist! Oh and I forgot, Anna is sleeping through the night. I am no longer a zombie! I have been telling them for months that this was an allergy. They did not want to hear that for what ever reason. I know what the doctor will say if he does call. Anna will need to be on some kind of supplement to give her vitamins the milk does not provide. The other doctor I saw said we would start that next week after we are sure she will take the milk. This is amazing!!! I am so excited to see my baby doing better!!!!!! Thank you all for the information and support. Part of helping my baby was learning that the answer was inside me in our situation. I needed to trust my instinct and insist on her getting the care that she needed. Now, we are off continuous feeds and if things keep going like they are now then we are on the road to having the feeding tube removed! So, how about some great news from us for once!!!

January 16, 2008 at 7:57 pm #47421

hellbennt
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January 16, 2008 at 9:40 pm #47428

Anonymous
Inactive

Great news!!!!

January 17, 2008 at 8:21 am #47434

Anonymous
Inactive

That is great!!!!!! Congratulations on amazing improvement!

January 27, 2008 at 8:17 am #47722

Anonymous
Inactive

SO Happy for you…So good for you to be such an advocate for your daughter. so many people are scared to question a doctor and follow that mommy voice, I hope many read your post and see how important it is to follow the mommy voice for your kids. Good luck.

January 27, 2008 at 9:24 am #47724

Anonymous
Inactive

Mommy instinct is very powerful!! What awesome news! I hope things continue to improve from here!!!!

January 27, 2008 at 9:55 am #47725

Anonymous
Inactive

Way to go, mama!! I’m so happy to hear how well she’s doing.

There have been a couple of moms on the board who found goat’s milk to be the answer for their babies. I think the added rice syrup and a vitamin supplement was needed, so sounds like you are on the right track. I hope the ped is helpful. If not, find someone else. Oh, and you’re probably right about the corn syrup. There have been at least a few babies on the board who reacted to corn syrup in formula, so brown rice syrup was the answer.

Good luck. And please keep us posted. Espcially about when that feeding tube comes out. How amazing!!

January 27, 2008 at 12:26 pm #47728

Anonymous
Inactive

That is wonderful news! I’m so glad you were able to find something that worked for her. That is awesome that you are done with continuous feeds and on your way to removing her tube. My little guy is also mostly on goat’s milk formula and doing well with it.

I sure hope she continues to do so well!

January 27, 2008 at 2:28 pm #47730

Anonymous
Inactive

My son also refused the neocate and I added goat’s milk with rice syrup against my ped’s advice and he immediately took 5-6 oz compared to fighting to get 1-2 down at a time! Goats milk is appropirate in some cases! He is a 21.5 lb ball of fire! Hope the good times continue!

January 27, 2008 at 4:18 pm #47733

Anonymous
Inactive

Wonderful news, I hope things keep getting better.
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