Posted By Posting
Jul 01, 2009
reesesmommy
Sandifer's syndrome
Hi I am new to this blog, but I'm hopeful that someone can give me some advice that I haven't heard already. My 6 month old daughter has been diagnosed with Sandifer's syndrome. She began displaying what appeared to be seizures but after an EEG, it was determined to be GERD. Because of the posturing and spasms (mainly in her face and neck) she had more than just GERD. She was put on Zantac and Bethanechol. We quickly realized that it was getting worse. Now we are on Previcid and Beth. She is still in SO much pain. Her PED. says she's on last option meds and they can't do any more for her. We have a gastroentranologist appt @ Tx Children's on July 6. But that sure feels like a life time away. Does anyone have any insight into this??? We have been through a lot and can possible offer others info on this too.
Jul 02, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I am so sorry to hear that you are dealing with all of this. Have they offered a breakthrough medicine for the continued pain? Some parents I have talked with use Carafate or otc meds like Maalox in those instances. I think it is great that you will be seeing a pedi GI. They may have more insight into treatment options. My daughter was having problems and the pedi GI actually DOUBLED her medication. She is like a whole new child now. If you are concerned you may need to be seen sooner you might ask them if they can call you if they have a cancellation.

Has your daughter had any GI testing? Has she been tested for Eosinophillic Esophagitis?

I would also try posting this question in the "General Beginner & Infant" forums too because it tends to get more traffic. I know there are parents in that forum who have also dealt with Sandifer's.
Jul 02, 2009
reesesmommy
Sandifer's syndrome
As of now we have not had testing done. I have a 2 year old daughter who had reflux but no spasms. She went through some testing and the end result was the same meds that our baby is on. However, the meds worked for our 2yr old. Her appt was actually just moved up, it was originally July 21st. They can't get her in any sooner. :( She was given some zofran which did help but, they are no longer willing to give it to her. We have been told by her pedi Dr. that she is out of ideas and because our baby is only 6 months old anything would be dangerous to try. This leaves me feeling desperate and helpless. I am grateful to have other parents to talk to and hear any suggestions. I am going to mention the meds that you talked about to the Dr. and see what they have to say. Thanks for the info and the heads up on the forums.
Check with your
doctor first!