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Jan 04, 2011
kcookpt
feeding specialist near tampa florida
My 4 month old daughter has secondary bottle aversion due to GERD. Does anyone know a good feeding specialist OT/SLP near tampa, florida. The SLP that we saw in the hospital did not know any treatment strategies to help with my daughter's bottle aversion and I think actually made the situation worse. My daughter had just eaten and to get her evaluation done the SLP was basically trying to force feed my daughter before I interrupted her. I am a PT and have done a lot of research on the topic and want to make sure that my little one gets the best therapy possible. Thanks so much!
Jan 04, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Most of us have dealt with bottle adversions. Perhaps we can help. What is she on for formula, kind of bottle, medications etc. Also, have you looked into the free services from Early Intervention. They typicall have good feeding specialist as well as OT services. The contact site for Florida is http://www.early-intervention.org/
Jan 04, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Yep, I would second looking into Early Intervention in your area. They should have someone who knows what they are doing.

I didn't like the first one we had here and we were switched to a fantastic one!!! They even sent her to out of state seminars so she would learn better how to help us with Jedd!! FANTASTIC!!!

Jan 05, 2011
kcookpt
Thanks for the advice, I was hoping someone could give a referral bc like I said the SLP my daughter recieved in the hospital was honestly awful. It's a very reputable hospital in the area and I thought they would have the best therapists but I honestly felt like I was therapist. You could tell she had never really treated a baby with bottle aversion before. She would tell me how feeding has to be a positive environment and that her suck was fine, things I already knew. My daughter was hospitlized last week bc her bottle aversion got so bad that I could only get anything in her with a syringe and she started thus loosing weight. She has been on Similac Alimentuum for awhile now, we have tried switching but her stomach is so sensitive now from being on it for so long that she throws everything else up. We have tried all sorts of bottles. She is using a bottle now called Tommee Tippie bc the nipple is the most different from anything else that sometimes we can trick her into taking it bc it feels so different. She has been on xantac 1 ml BID but since the hospitlization is on prevacid 2ml BID. She was 14 pounds but dropped to just under 13.5 pounds. Thank you for the suggestion about Early Intervention, I did not think I qualified for that since we have our own health insurance. I hope we can find someone bc I don't want to get to the point of tube feedings and I'll try anything to avoid it. I mean I understand that we have to do it if she is losing weight bc I want her to thrive but I want to make sure that we try every other alternative first. I guess my real dilemma is how to deal with my daughter when she screams at the bottle, which is pretty much everytime. Do I calm her down so that she will take it or do I put her down and try again in 10 minutes. I feel like she is starting to not understand that when she has hunger that the bottle satisfies that bc I basically make her eat. I have tried the whole walk away and come back thing 10 minutes later but she never just takes the bottle anymore even after it has been a long time. One time during the day it went to six hours and she was an absolute mess. I just don't know by calming her down so that she eats is making the bottle aversion better or worse. At the same time, I don't want her losing weight to attempt to circumvent the whole feeding tube issue. I know that the prevacid can take up to 2 weeks to really work but I feel like to break the bottle aversion it will take much longer. How do I know that the medications are really doing their job now and that is just a bottle aversion now or if she's not still really in pain? Thanks again for the support. I am new to the forum and am relieved to see that I am not alone bc honestly sometimes as you all know it is a struggle. Another random question, I have always wanted lots of kids. Our daughter is our first. Is there any literature out there that explains the recurrence of GERD in families? Sometimes I'm just not sure if I want to put another child through this if the chances are that they will have the same experience, its just heartbreaking to see them hurt. I know you all understand. Thanks again!
Jan 05, 2011
dcd
kcookpt - Reading your last post my heart breaks for you. I know the feeling exactly - questioning whether you want more kids, not because you don't know if you can go through it again yourself, but because you can't stand the thought of the next baby also having to endure this pain. My daughter's bottle aversion was not too bad, but we've had other issues. You are a good mother, I can tell. I hope some of the other moms on here will chime in again. You're doing a great job. Hang in there.
Jan 05, 2011
kcookpt
dcd: Thank you very much for the kind words. I would not change my daughter for the world, she is my everything but I just hate to put another little one what she has been through even only being 4 months old. I have definitely had some rough patches in the last 4 months just because as you all understand you just want the best for your kiddos and to see them hurt is torture! Luckily I have a great family and husband that tells me almost everyday what a great job I am doing with her, which helps bc it is rough at times. I truly do believe that certain children are given to certain individuals bc God knows the love that they have to give is tremendous and even though it may be difficult that they can handle it. My heart just aches for her. It is helpful to know that there are other people out there though bc not many REALLY understand what day in and day out are like sometimes :)
Jan 05, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Couple of quick comments... I will be back later...

Early Intervention is not income based. It is free to everyone.

Breaking the bottle adversion will take time but not as long as you think, once you get her feeling well. A sick/in pain baby will not want to eat though. You need to get that in check before you can expect to make any headway with the bottles.

As far as future kids go..... One baby and one day at a time momma. This really will get better. I promise. I was pretty sure when I was going through this with Ryan that I was going to go off the deep end and I am an extremely strong person. This reflux ride brought me to my knees, and we had it really bad for 14 months before I found his magic bullet. A year later I am happy to say that all is well and Ryan is a totally normal healthy toddler... Now my hair is turning grey from all the crazy fearless things he does. He eats better than most of his buddies and this was a kid that was days away from a feeding tube and could vomit at the sight of a bottle. There is a point in time that he wouldnt even let me hold him because he knew I was going to force him to eat. You would think I was crazy if I told you are the insane things I had to do to get him over his fear of fluids. It has all been forgotten now. As far as future kids having this... Maybe they will, maybe they wont and maybe they will have some completely different problem. You just never know. My first child never had an issue. Never had so much as an ear infection. Never had antibiotics till she was 5. Ryan... well... he was another story. He is the healthiest kid in the class now though. Hang in there momma!!! One feeding at a time.

Jan 05, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
PS. My pediatrian just moved down to your area. I am going to find out where she is. I met her in the ER one day after a year of getting no where with my old ped. She was AMAZING!!!!! I cried when I heard she leaving... and I dont cry. : ) I will get back to you tomorrow on her location. Her name is Susan Flagel.
Jan 05, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I found her!! She is an hour and a half from Tampa though in North Port. http://www.flagelmedicine.com/medical-staff.html Boy do I miss her!!!! We were frequent flyers fo the ER until we met her and made her our ped. We never had to go to the ER again. If you make your way to her practice tell her Karen and Ryan from her old practice in Iowa say HI!!!
Jan 06, 2011
kcookpt
Thank you for all the responses and for the peds recommendation. That might be a little far for us bc our little one is not too found of her car seat, which I've heard is also associated with the reflux :). I know it is one bottle at a time for me right now and I know it will take some time to break. We were doing good for a couple days (well good for our standards) and then I swear that the reflux hurt her again the other day when she was eating. It was different, I could just tell. Anyhow, since then she is extremely difficult to feed again, not impossible as it has been before but not good. Her GI today said that there is no way of really knowing. I just think I would blame myself if I had another one with the same problems, I just hate to see her hurt like I said but I know everyone on this forum understands that. Thanks again for all your help!
Jan 06, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Sorry I didn't get to you sooner!!!
I was having connection issues last night, weird!!!

This may be hard to read but here goes:

In order for a child to be a successful eater, all medical issues need to be resolved. If you feel that her GERD is not in control yet, successful eating will not occur.

Hard to hear, I know. Just about all feeding clinics will not even take a child in for long term care for in patient clinics until they are pretty sure all medical issues that can be resolved have been resolved.

How many ounces are you getting down in a 24 hour period?

To Be totally honest, if the calories are not being met orally and a child is losing weight and you are fighting GERD and an oral aversion like this, a feeding tube may be looming.

The child doesn't want to eat because they know they will vomit and or be in pain so the fight continues and the child will Fail To Thrive.

Have you had any GERD tests done? What were the results? What about motility testing like a Gastric Emptying Scan? Some times a GI will get RX a motility drug and see if it helps.

None of this though will help her to eat orally right away. But, medical issues take the forefront. It was explained to me like this:

If every time you ate a meal you felt awful and you threw up, if it hurt when you ate and was just a terrible experience....how long would you continue eating? Or what about if each time when you ate, someone poked you with a taser....every single time. Eventually, you would lose the "want to" to eat....and just NOT do it because you don't want the pain.

Does that make sense?

Add to that a child who is very young like ours was, who can't communicate any way except to fight the very "thing" that is causing them the pain, which is a bottle or a spoon.

It's a very hard thing to overcome and it took us 2 years a REALLY steady Early Intervention therapy and therapy from 2 clinics, one local and one Nationally know. And we also got a visit while we were at another clinic as well.

It's hard but even if you face a feeding tube in the future, it's nice to know your child is getting fed. Let me know if you have any other questions. At one time we were told by Early Intervention that Jedd was the most difficult feeding case they had ever come across in our local city. He pulled every single trick in the book, and then some....LOL Stinker!!!!

Even at 4, I really think he only eats because he eats on a schedule. He does enjoy eating certain things but it's not every time he eats that item.

Jan 09, 2011
kcookpt
No problem! I have had a hard time getting on lately too. Even now it took some time for things to load. Thank you for all the advice. As far as ounces per day it all depends. Sometimes its great like 25 and sometimes it is awful like 7-8 with a syringe. It seems to go in cycles with her. It goes good for a couple of days and then bad again. I don't know whether it starts to hurt again or she just remembers some days. So hard like you said with someone that doesn't talk. I know that a tube is looming if she continues to lose weight so hopefully we will figure this out :) We had a pH probe in the hosptial while on her GERD medciations. Dr. said it looked ok. She also had an endoscope done and everything looks good structurally. I will bring up the Gastric Emptying Scan. I understand why she doesn't want to eat completely! It's awful bc I think sometimes she forgets that the bottle satisfies the hunger pains bc the other pains are so much worse. Thanks again for the assistance, I will bring this stuff up to my GI!
Check with your
doctor first!