Posted By Posting
May 27, 2009
mommato3
GI doctor update
Woohoo, the hospital just called and said the GI agreed to transfer Holden's care if we wished but the motility GI isn't taking any new patients. So, who to choose?? Does anyone have any good experiences with a GI at Cincy?? I was told they all deal with GERD but Holden has delayed gastric emptying as well. I told her I would call her back tomorrow and tell her who I want to see. BTW, I did call nationwide's motility clinic today in Columbus and she said they would be happy to see us for a second opinion, but he was too young for any more motility testing without a G tube and they didn't want to be our primary GI as we live 4 hours away and in an emergency we would need someone closer. But at least now I can find a new GI at Cincy. Thanks!
May 27, 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.
sounds great. good job mom.
May 27, 2009
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
You talk to Joy at Columbus right??? She's a sweetie. She places all the Impendances probes there. That is an awesome hospital BTW they did Jedd's motility testing. Really she is right. You can't do extensive motility testing on the intestines without a G tube. I know ONE person who had the tube placed nasally, but really this is WAY outta the norm.

I have heard not so great things about Cincinnati though. Esp. there feeding clinic. I have "heard" they do force feeding. As in holding down hands and forcing the spoon into the child's mouth. Not pretty for sure.

As far as their GI part, they are OK I've heard. It's just the feeding dept that is not great. I know a few Mom's who take their kids to see the GI dept just.

I am glad the phone calls went great today. Good job!!! It's soo exciting when something goes you way isn't it??

May 27, 2009
mommato3
Yeah, I talked to Joy. She was very nice. I would go there if they would be willing to be Holden's primary GI but she said they weren't comfortable doing that. I guess I will have to store them in my back pocket for second opinions if needed. Cincy doesn't mind being our primary GI since we are so close. Yes, it is the feeding team and their GI on the feeding team that we are having a hard time with. Thanks you ladies! I dropped Holden off at church nursery tonight for the first time (I have been scared with his reflux and I'm the only one that can feed him anyway.) I told them if he starts crying to come get me or he'll puke (which it took me 1 hour and 15 to feed him.) I also told them to keep him upright. Well, I'll be if they didn't come get me out of church and tell me that he cried and puked. I told them!! Frustration. She said they just wanted to give me a break. I don't think anyone (other than ya'll) know how easy it is to cause a puke and how hard we work for those calories. At least the doctor thing went my way today!! Ha!
May 27, 2009
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
I am sorry about the church nursery thing.

We have had tons of troubles with Jedd when he was tube fed and his GERD was at it's worse. He did the same thing, I told them time and time again, Jedd CAN'T cry even for a short time, he vomit everywhere and he couldn't afford it either.

I will tell you what we wish we did in hindsight after a lot of heart ache....I wish we had had a "church meeting" with ALL of the nursery staff and explained ALL of Jedd's medical issues TO them. I think it would have gone much better in the beginning.

In stead DH and I suffered awful. NOONE took Jedd's issues seriously and we had TONS of problems. The Pastor didn't even want to step in even though I spoke to him MANY times about what we happening.

I was literally told to my face, that If I didn't use Jedd's feeding tube he would eat. I just needed to STOP using it.....get me soo fired up now just thinkin' about it....I'll get off my soapbox not.

Just what we learned. I think all the workers would have been able to answer questions and such and things would have gone more smooth.

May 27, 2009
mommy2k
It's good to hear that you found a new gi. I know that you've been having a rough time with getting your little one some relief. I had a friend who went to the cincy gi's but I don't know which one. It was years ago though. But I do know that they didn't want to continue going to the columbus hospital eventhough they lived there. I could ask him what doctor they used or which ones they would recommend if you'd like. You keep on fighting for the little guy. I'm sorry that the erythromycin isn't working for Holden. I know that our sons are about the same age. Kody is about to be 6 months. Right now the erythromycin is working for him but if we miss a dose it's back to choking and coughing again. I hope that whatever gi you see is knowledgeable and helps him out. It's so hard to find the right doctor and the right meds. Crazy! Good luck and hugs!!
May 28, 2009
mommato3
Mommy2K-I would love that. Jeddsmommy-Our church is so big and the nursery is strictly volunteers. So their are literally hundreds of volunteers. On Sunday mornings though there is one constant in the babies room. She is a girl in my sunday school class so i feel she knows but these Wed. and Sun. night volunteers are the problem. That is a good idea though. I could at least meet with our nursery coordinator and some of the volunteers for Wed. and Sun. night that way there would always be at least one person in there that understood. The girl in there last night was my friend who she says she had a reflux baby that puked all the time but outgrew it at 7 months so she understood my concern. Even people with the best intentions sometimes just don't get it. Many babies have reflux but very few have it severe to where they don't eat. I hear ya about people saying stuff like "If you don't feed him with a tube, he'll eat." People tell me "If he was hungry enough he'd eat or maybe he just isn't hungry." and Oh what drives me nuts "His weight looks fine to me. I don't understand what all the fuss is over" I then have to explain his weight is hanging in there b/c I am his feeding tube. The concern is over his weight along with the fact that he does not want to eat will go hours upon hours without being hungry, gags, chokes, etc. when he does eat, food aversions... BLAH.. the list goes onThey kind of look at me like I'm crazy. Sorry for my soap box posts the past couple of days. I have really needed to vent. Have a great day!
May 28, 2009
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
Oh feel free to VENT it will make you feel better :)~

Ours is by volunteer as well and we have a large church, I think that is what stopped us too. Hopefully they will become more understanding than what we got.

May 28, 2009
mommy2k
I will try to get a hold of him today.
May 28, 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.
Yep - this is one of those conditions that people just don't get. Hubbies, gramas even mental health professionals can think you are crazy.

Hang in there. You are doing an amazing job and know that we totally understand where you are coming from.

May 28, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i only have correspondance experience with one GI at Cincy, Dr. L. He was very very nice and explained everything I had questions about. He looked over our records and xrays for no charge and gave a tentative dx based on experience with hirschsprungs. the nurses were all very nice and were so on top of retrieving records and reviewing them. if need be i would definitely go to them in the future for their bowel management program. our experience was based only on lower GI issues though
May 29, 2009
mommy2k
I just wanted to let you know that I didn't forget about you. I haven't heard back from my friend yet. I hope your day has been good and that you little guy is doing well today.
Check with your
doctor first!