Home › Forums › Special Topics › Sandifer's Syndrome › feedback….
- This topic has 3 replies, 1 voice, and was last updated 18 years, 1 month ago by Anonymous.
-
AuthorPosts
-
March 23, 2006 at 8:54 pm #4521AnonymousInactive
Thanks so much for all the feedback. Things are still crazy! We saw a specialist last saturday and he confirmed that Jonah had reflux (actually every symptom of reflux) and he also has Sandifer’s syndrome. The doctor prescriped Zantaz 25, thickening formula with rice cereal, Nutramigen (formula) and Mylanta PRN. Things got better for a couple of days but as of tonight it seems like he was arching and in alot of pain. He is also spitting up alot too.
The info on Zantac was really helpful, becuase I didn’t think it was working at all, and I really don’t like the idea of thickening his formula, do any of you do that?
I am so frustrated because I just want my kid to be pain free and to relax. We had several really good days, were he actually cuddled in my arms for a bit, he had never done that before….I was shocked, but I don’t think things are totally better yet, because he is still so squirmy and arching after he eats. Though we haven’t had any of the seizure like stuff for a week.
Based on everyone’s input, it sounds like I should follow up with my doctor again and try and get prevacid. What are the side effects, if any of Prevacid? Has anyone explored homepathic remedies? Any success? Also, will my child out grow this? Thanks for all the feedback. Stars
March 23, 2006 at 9:05 pm #4523AnonymousInactiveStars, we are currently going through the same thing with my 10 month old. She has what we think is Sandifers, but my ped wants to do an EEG to rule out seizures. I was just wondering what your doc did to diagnose your son’s behaviour as Sandifer’s vs. seizures. We were told that the only way to do this is by EEG.
March 23, 2006 at 10:08 pm #4528AnonymousInactivePrevacid can cause some stomach pain and cramping. It usually goes away within a couple weeks. My daughter has been on it since 2 months old. You may have to take matters into your own hands here and see if he does better on a higher dose of zantac. They reach a plateau on zantac and it is really weight sensitive. They say they will grow out of it, many by 1 year. I am still waiting at 7 months. I think most babies stop spitting up by 9 months. Lots of support and info here to get you through this year. Please get him on a ppi so no damage occurs. They are safe, lots of info at marci-kids.com. Makes me mad that he clearly has sandifers like my dd and they still put him on zantac only
March 23, 2006 at 10:43 pm #4531AnonymousInactiveFrom reading these posts I’ve learned that many babies don’t do well on Zantac. My middle child had reflux and was treated with Zantac. It never helped her much. My third child also has reflux and has been on Prevacid for about two months. It has helped him a lot!! I wish I would have known about it when my daughter was a baby.
The Marci-kids site has information about PPI’s including dosing information which is very important because most doctors (including my own) will prescribe a dose which is way too low. Babies have higher metabolism than adults and actually need a higher dose given more frequently than once per day. (My son gets 10mg/3x’s per day).
Here’s the link http://www.marci-kids.com/ It would be a good idea to print the information about PPI’s and dosing and bring it, FAX it, or send it to your doctor. That’s how I convinced my doctor to give my son the right dose. He was miserable until he was on the right dose and he’d still be miserable if it wasn’t for this site and the marci-kids site. I am so thankful for what I learned here and how it has helped my little boy!!
I hope you can get your little one on a better medication and see him feeling better very soon.
About side effects of PPI’s. My doctor said they are very safe drugs. They only effect very specific cells (the one’s that produce acid) and so they are very non-toxic drugs. Babies who are sensitive to milk may get tummy trouble from Prevacid solutabs because they contain lactose. This is something to keep in mind. Zegrid may be better for milk sensitive babies.
Many moms thicken formula and it does seem to help some babies keep their food down. I was not happy with the idea at first (having been taught for years to never put cereal in a baby’s bottle), but it works really well for my son. I only thicken two of his five bottles now that he is doing better…..
If you do decide to thicken with rice cereal you may find that your son becomes constipated. That’s a big problem with rice cereal. I, and others I’ve learned, use oatmeal instead. I asked my doctor about it and she said it was absolutely fine to use oatmeal instead of rice.
Hope this helps! Good luck and keep us posted.
-
AuthorPosts
- You must be logged in to reply to this topic.