Peds Gastroenterologist in Atlanta, GA or TN?

[Rubysmom]

Hi, my daughter was initally diagnosed with Crohn's about 3 months ago. We got a second opinion and now our second doctor is saying she has IBS. I am looking to get another Gastroenterologist to review all the test and possibly give us a more definitive diagnosis. We are looking for the best pediatric GI doctor in the Atlanta or Tennessee area. If anyone can give us a recommendation, I would really appreciate it.

Thank you,
Erin

 

[DanceMom]

We saw the IBD team at Egleston in Atlanta. They were very friendly but not easily accessible. They don't answer emails and don't return calls quickly. That being said, we got an appointment very quickly and everyone at the hospital made us feel very welcome and comfortable there. We were told that they see a lot of very complex children there and our GI actually arranged the visit for us.

 

[Rubysmom]

Dancemom, thank you. I'm familiar with a couple of Peds GI in Atlanta. Dr. Saripkin and Dr. Lewis. I want to find the best so this can be our final opinion on what's going on with my daughter.

The only thing that came back positive for Crohns was the Prometheus blood test. All other test have come back normal, biopsies, fecal calprotectin, ESR, CRP and small bowel endoscopy. She has been on SCD for 3 months and has improved but not symptom free. Our second GI doctor recommended trying FODMAP. We are in Alabama, so I took my daughter to UAB Children's Hospital IBD clinic.

Thanks,

 

[DanceMom]

That's how our journey started as well - positive Prometheus test (and of course GI symptoms). Personally, I'd wait a bit on another opinion. I know waiting is difficult but if all tests are normal at this time then an IBD diagnosis can't really be made. Some kiddos have symptoms for years before things start to show up on labs and other tests. For now I'd keep a very detailed journal of diet/symptoms, take pictures of any unusual stools or rashes, and wait.

May I ask what your daughter's symptoms are? Who diagnosed her with Crohn's based only on the Prometheus lab?

 

[Rubysmom]

My daughter started having symptoms at the end of 2012 and may have been going on before that. She complained of stomach ache, then in 2013 she started having mucus BM's. She didn't have it all the time but would come and go. Things got really bad in September. She was having more frequent stomach aches and started having multiple mucus BM's a day. That's when we had her evaluated. I took her to a highly recommended doctor in Gardendale, AL, Dr. Stephen King. He did the Prometheus test, colonoscopy/endoscopy. The colonoscopy and endoscopy biopsies were all normal. He told us even if it comes back normal that we would be dealing with Crohn's in the future.

She never lost weight, never had blood in her stools or developed any other symptoms except for the stomach aches, bloating and mucus BM's.

Our second doctor, told us that her experience with the Prometheus test is that it has a 50% false positive/negative results and cannot rely on that for diagnosis. We had her biopsy slides reevaluated with another pathologist as well. He agreed that everything was normal.

Yes, it's difficult to wait. I want to be told for sure what is going on now. My daughter is doing much better. Certain foods do seem to bother her more than others. Based on the FODMAP list, the foods that bother her are the high FODMAP foods. She's no longer having the mucus stools and the bloating has gotten better. She's gaining weight and has a great appetite.

What were your daughter's symptoms? Is she following a diet? Did she progressively get worse or did she improve for a time?

Thanks,

 

[my little penguin]

Prometheus lab tests are NOT recommended to be used to dx crohn's.
They are only slightly useful to determine if the individual has crohn's or ulcerative colitis in cases of indeterminate colitis .
Mucus bm's tend to happen with Ibs as well as Ibd .
Ibs and Ibd have a lot of over lapping symptoms .
The drugs used to treat Ibd have a lot of risk therefore docs need to be really sure before dx.
I am glad to here your child is feeling better.

You can have her results records reviewed by another hospital ( cchmc, Bch or chop).
Good luck

 

[DanceMom]

My daughter's symptoms started at birth - awful diarrhea and FTT. Then what appears to be erythema nodosum started around age 2. For years her symptoms would come and go. By age 8 they were pretty consistent - stomach aches, headaches, erythema nodosum, bloody stool, fatigue, vomiting and joint pains. She's always had an outstanding appetite.

Our previous GI felt that because of the positive Prometheus that it was only a matter of time before she developed IBD. Our current GI feels that the Prometheus is only a piece to the puzzle. It helps to confirm that she probably has Crohn's but a lot more pieces need to match up as well. Our second opinion GI in Atlanta didn't give any thought to the Prometheus test.

 

[Rubysmom]

Dancemom, do you mind sharing the name of the GI specialist in Atlanta? I was going to make an appointment with Dr. Saripkin. He's affliated with the Children's hospital in Atlanta but is in private practice, GI Care for Kids. I have multiple family members with IBS, including myself and my husband. I am praying that it's IBS and not IBD. I hope your daughter is doing well. Is she following any kind of diet? If so, is it helping or is she on meds?



Thanks,
Erin

 

[crohnsinct]

tagging Clash as her son is also seen in Atlanta.

 

[DanceMom]

We saw Dr. Kugathasan and Dr. Sauer. I preferred Dr. K.

My daughter is still in the process of being diagnosed. She's currently on methotrexate because her GI and Rheumo are convinced she has an immune disorder of some sort. We don't follow a special diet but we've been told by the dietician to try to sneak in things like butter, olive oil, and avocado whenever possible. Also to push the milk. She's always had trouble gaining weight.

 

[Clash]

My son sees Dr. Saripkin, he was diagnosed by a local adult GI then I found Dr. Saripkin through research and the recommendation of some adult GIs. So Dr. Saripkin has been in charge of my son's care since dx. You are right he is at CHOA at Scottish Rite. DanceMom's GI Dr. Kugathasan comes highly recommended at CHOA at Egleston.

We love Dr. Saripkin. My son, C is 17 and has been with Children's Center for Digestive Health or GI Care for kids.

 

[Rubysmom]

Clash,
Hey, I'm so glad you recommended Dr. Saripkin. We have an appointment with him next month. I used to work at a hospital in Athens GA and Dr. Saripkin, and Dr. Lewis would come for a GI clinic there. They were the first to come to mind when I was thinking of finding another peds GI to get another opinion.

Do you know what Dr. Saripkin's opinions are on the Prometheus blood test?

Thanks,

 

[Clash]

I'm not sure what his opinions are on Prometheus as C was diagnosed by colonoscopy previous to our visit with Saripkin, sorry. But he is very easy to talk to and doesn't mind explaining his thought process or reasoning. I think it is a good idea to have a sheet with the current symptoms bulleted, followed by current meds, treatment and/or supplements and finally questions or concerns. Make a copy and hand him the copy, that way he can read through and you can make notes as he goes through everything. Good luck, I hope you find some definitive answers quickly.