Tucker is scheduled for an emptying study next week. I'm not sure why this wasn't suggested before he had the fundo/g-tube surgery in August, but here we are doing it now. I read in a past post that you should definitely have the emptying scan done prior to fundo, Why?

We spent over an hour with the GI yesterday. He reviewed Tucker's whole chart and the 100s of tests he's had done during his short life. He said he focused on 17 of them that are of significance to him as a GI. They all look normal except his thyroid TSH was ever so slightly borderline. (.13 above "normal"). For that he is going to order another test w/ the next labs done. He is waiting to see the report on the metabolic screening which was done in July. (Tucker was in the hospital at that time, and the PICU doc told him it was "normal" but he has never actually seen it.) Now that we are having so many problems, he wants to see the official report. Our next step--if the emptying scan and metabolic studies don't show anything--is to go to a geneticist/metabolic specialist. Does anyone know of a good one in Florida? My GI said he's not been overly impressed with the ones at Miami Childrens or Univ. of Miami.

I spoke to our regular pedi today to get his input. He's going to call our GI and have a pow-wow about Tucker. He suggested that we may want to go ahead and have him evaluated by a neuro again for a baseline, since it's possible that Tucker could have mild CP due to all of his issues thus far. He's not showing any signs that I notice, but.....
After the neuro consult (again, if the other studies don't show anything) he's suggesting we send Tucker to Shand's or Miami Children's to have them do a full evaluation in case all of our docs here are missing some piece to this never-ending puzzle.

Have you guys used geneticists? What can they really tell you? I've heard that if they don't know what syndrome they are looking for it can be like looking for a needle in a haystack. So, in other words, if we have no idea why he's having all of these issues, it may not be worth it.

I think I know the answer to your first question, but will leave it to someone with experience with the fundo.

As for the geneticist, we've been there and are now down to going once per year. We're still looking for a diagnosis. It is somewhat like looking for a needle in a haystack, but they also look at everything including family history and physical characteristics, birth marks, etc.

Can not help you with the fundo information nor geneticist but thyroid is my bag as I have it. A TSH is just a registration of the thryroid stimulating gland and that test on its own could well be useless. They should do it in addition to the T3 and T4 panels to get an accurate reading. Make sure your ped is up to date on the results which constitute problems as they have changed in the last few years and maybe the lab will not post the range results for them to determine a problem.

Good luck!

The reason you should have the emptying study done before the fundo is:

1. if there are emptying problems they can be corrected at the same time of the fundo so 2 procedures are not needed.

2. because empyting problems can be the reason for the reflux symptoms and fixing the emptying can cure the reflux without having to have the fundo.

3. If the fundo is done without checking for emptying problems than you can end up with a poor little booger whos food can't go down and now it can't come back up either which creates a whole new set of more difficult problems. Like the food can't be digested or vomited, it can sit in the tummy and rot, it can cause infection, and it can cause them to stay full, so they will begin to lose weight and feel nauseated and have stomach pain, and gas bloat syndrome as well.

Hope that helps!

We had the emptying scan prior to the fundo as well--for the reasons Erin stated.

As for the geneticist, we have a lot of experience with that as well. Sam has seen 2 geneticists who I love. they have been working very hard to find a diagnosis for Sam--he also has a neurologist we see on a regular basis. It is like looking for a needle in a haystack. He has had so many tests and bloodwork and is still the mystery baby! There is definately something wrong with Sam--he is a year old and lnoy functions at about a 3 month level. He just had some more chromosome studies done--4-6 weeks for results. It is a very exhausting process--but we want answers, so we will continue to search. Luckily most of the more invasive tests were done when he was in the hospital for his fundo or when he was allready sedated for a scope. I wish you luck, ihave found geneticists to be very caring and easy to talk to.

I can answert the emptying scan prior to a fundo. The reason it is done is to look for delayed emptying and try to figure the cause and if can correct this as stated may not need the fundo.

2. If there are emptying problems the fundo it self can make them much worse.

3.There are times when the surgeon will do a fundo with a pyloroplasty. The pyloroplasty is a surgery where they open the pyolorus muscle as they tilt the stomach to try and make it empty faster. This surgery can bring on it own set of problems such as dumping syndrome.

4. The reason doc will do the scan after a fundo is to see if a delay has been created. There are alot of kids out there that have had fundos done with no delays prior to surgery but delveloped the problem post fundo. My son has a severe delay presently but prior to first surgery had a minimal delay.

The fundo surgery can create a whole new set of problelms for a child and gastric delays are one of them. I do wish you luck and hope that you are able to get some answers soon.

Melanie

Thank you everyone that responded. As much as we love our doctors, it's nice to get information from people who actually live with the same problems we do. I know that the have the highest expertise on the medical side of it, but living it is a whole different reality.

That is so true...

Yes...so true!