Posted By Posting
Mar 29, 2009
jean9
Cleveland Clinic
Anyone have opinions/experiences with the DIGESTIVE (not Feeding) Clinic at The Cleveland Clinic?

Specifically, ped GI Dr. Radhakrishnan and surgeon Dr. Soldes? \

Thanks

Mar 30, 2009
jean9
We want more testing for our dd to determine what she needs... g-tube, nissen, pyloroplasty, all or none...

strong suspicion of DGE even though DGE results were 'normal'

we know Cleveland Dig. clinic can do impedance testing, but is that comprehensive enough re: motility issues? Or should we travel to Boston for better testing?

she doesn't have much time (losing weight clock ticking) and if she needs a g-tube soon it would be best to get the other sugery(s) done at the same time, right? Assuming she needs more than tube.

Mar 30, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
Photobucket
We had Abby at the Cleveland Clinic when she was a newbie. She saw a pedi GI there, but we didn't like him at all! He wasn't either of the dr's that you mentioned. He would only prescribed her 7.5mg of Prevacid. He said he would not increase it even though she was getting no relief from it. Said that no GI there would prescribe more. And never even mentioned Neocate to us. We switched to a pedi GI are Rainbow Babies and Childrens.
Mar 30, 2009
mommato3
How far are you from Cincinnatti or Columbus? Great GI dept. (#3 Cincinnati and #9 Columbusin nation) I know Jedd's mommy on here used Columbus Nationwide and LOVED them for motility. Boston is awesome (#1)but prob. long wait. My son is going to Cincinnatti Children's in April for extensive testing (a week's worth) What tests have been done. My GI told me that they would, if nessesary, do an NG tube until they found out EXACTLY what was happening. This is a temporary solution that is not good but they don't rush into a g-tube until they know what's going on unless they know already that your child will definetely need tube feedings long term. Sometimes kids do a GJ tube. My understanding is a fundo is NOT good for most children. OUR GI at Cinci put my 4 month old on 30 mg of Prevacid. My son is not losing but not gaining either. Do you have your child on increased calorie formula? What are your meds and dosages? What tests have been done? I would think if they are considering g-tube and fundo they will want to do some extensive testing. Keep us updated.
Mar 30, 2009
jean9
reply to mommato3
My dd Libby has been showing DGE signs since birth. We just need to know what it is that limits her volume intake.

Previous DGE test said normal, but we know not reliable b/c she only took 2 oz. and that was 1 1/2 years ago.

She drinks pediasure boosted with duocal, 15mg/day prevacid, 1.5 ml reglan 4x/day, trial of e-mycin 1ml 4x/day. Tried periactin.

WE're just south of Buffalo, NY. So clevelands 3 hrs. away. Columbus & Cincinatti are farther--I'm guessing at least 7-9 hours. I'm just thinking of the practicality of the 1st consult, then tests, then surgeries, follow-ups, etc. And I have 2 other kiddos at home I'd be leaving behind...

Cleveland can get us in this FRIDAY and I spoke to a mom who had great experiences with her drs. (those listed above) there. Boston not until June/July. I don't think Libby can hang on that long...

Mar 30, 2009
mommato3
Take that Friday appointment!! I'm sure you have already. I would just see what they have to offer since it is so close. Maybe someone on here has some more experiences. I was able to get into Cincinnatii within the week as well because of a cancellation. Now testing is a different story. We have had to wait for that. I have heard that DGE tests can be unreliable. My son is having one April 9th. The docs suspect DGE as well as some other problems and that is my concern that he will only take his usual 2 oz of formula and of course he won't show much delay with that and 2 oz of formula is not near enough for him to grow unless I could feed him like 15 times a day!! Best of Luck. Depending upon your experience on Friday I would go from there. How did she do when she was a baby (weight gain wise). Has she ever had an NG tube? I have 2 other kiddos as well as my 4 month old. We are having to leave them behind as well for everything. Gonna be very hard juggling it all. Luckily my mother-in-law is retired. she can come for 1 week of the testing and stay with my other 2 and we have some close friends that can help us out the rest of the time. So I'm with ya on practicality. I know InfantReflux.org has a forum entitled procedures and one entitled Specialists. I would bet that forum would also have some useful info for you. Parent 2 Parent is another good one that you may already know about. Best of luck. I'll be praying you will get some answers!! Keep us posted.
Check with your
doctor first!