Third opinion = New Doctor

[Imerald]

We had Ella's 3rd opinion today with Nemours and we were blown away with the information and resources available to us. The GI is very concerned about her lack of weight gain and growth. She is down a lb since her last GI appt a month ago and isn't even on the chart at this point. She's also been on steroids since her last appt, shouldn't she have gained weight??

They brought in the nutritionist and we have a list of high calorie foods and several methods of increasing her fat intake in a healthy way. We also got an order for labs (finally) and scripts for Flagyll and Periactin to help stimulate her appetite. They are hoping the Flagyll will help get her off the steroid faster.

The new GI was also very interested in all the food intolerances that she has. He will be looking at her labs for that as well although he did mention that sometimes that doesn't always paint an accurate picture. But at least he is listening to us and taking our concerns into consideration. It made for a very happy Momma and Daddy.

The old GI wanted to get a dexa scan done, but the new one thinks it's a bit premature for that just yet especially considering she's underweight etc. The old GI also wanted us to get the enzyme test done in case we needed to move to 6MP, but this GI thinks that it still premature as well and isn't ready to move onto that just yet.

We will have all our medical records transitioned over to the new GI and meet again in early May to see what our next steps our, etc. I always feel bad when we change doctors, but I know it's important to feel like we're doing the right thing for Ella in getting her care we can trust.

We'll be walking this weekend in the Take Steps walk for C&C. I'm looking forward to meeting new people and having some fun.

I welcome any feedback or opinions you might have on any of what I posted. I don't know what I'd do without this group! <3

(Special thanks to DanceMom for the referral!)




~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[DanceMom]

So glad you went! We were there yesterday as well. Who did you see? Periactin helped A gain a few pounds but unfortunately she lost again when stopping the medication. Flagyl has worked really well for us. I hope these meds turn things around for your little one!

 

[DustyKat]

It is good to hear that you are feeling validated Susan. It is so important to have faith and trust in the person that has your child’s well-being in their hands. :ghug:

Not everyone responds to Prednisone the same way. Whilst it is true that most do experience the side effects that you read about here…the munchies, weight gain, whizzing around the house, moon face and so on…there are those that don’t. I do think oral Pred helped to stabilise my son but was it the miracle drug it was for others? No. The only thing that really elicited the response you expect from steroids was when it was given IV.

Flagyl was also a useful drug for my son and if tolerated well it is beneficial as it has both antibiotic and anti-inflammatory properties.

If the doc wants to hold off on the DEXA scan I don’t see that as a problem but I personally would go ahead with the TPMT (enzyme) test. Even it not used at this point in time the result won’t change and so you will have that information at hand if and when it is needed. The reason I say that is because it is a test that you won’t quickly receive results for.

Good luck with the new doctor! and with the walk!

Dusty. xxx

 

[Sascot]

Sounds like a good appointment. It's good when you like/trust a doctor. Hope the meds help with appetite.

 

[Imerald]

(I've started typing a reply I don't know how many times and always get interrupted)

DanceMom, we saw Dr. Franciosi and Suzanne was the nutritionist.

They also recommended a powder multivitamin made by Solace. I think it was NutriVM or something like that. Anyone have any experience with that?


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[AZMOM]

You HAVE to have a team that you believe in and trust. It sounds like you have found a great one!!!! That's awesome.

J.