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Jul 02, 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
mommato3
What are the med doses and what is her weight. My old pedi told me we were on last med options and then I saw the GI who doubled his Prevacid. GGI's are much more into dosing, etc than the pedi. They also knowhow to through other meds in the mix to help things. I know the app. seems like forever away esp when your little one is in pain but you are on the right track. Also sometimes it takes going to several GI's as well before you find the one that you feel is right for your little one. Some are extremely aggresive, some too laid back. Hang in there and let us know how the appointment goes. Can you give her some mylanta as well to help with breakthrough acid? You have to space it from the Prevacid. Also are you giving the prevacid on an empty tummy and 20-30 min before a feed? If not, it will not be very effective. Let us know if you have any questions.
Jul 02, 2009
reesesmommy
sandifer's
Thanks so much for taking the time to write me! She's on 15mg solutabs of Prev. Her last weight was 17lbs, but I think she has lost some weight. She's eating less than half of what she normally eats these days. We have asked about meds like Mylanta but our Pedi says no way. So that leaves us with our GI dr. I give her the Prev. first thing in the morning along with the Bethacol and she eats about 20 minutes later. Thank you for the support. It reslly does give me a sense of comfort at the end of a heart breaking day.
Jul 03, 2009
mommato3
I don't know if you've tried this but some moms have had luck with splittling their solutab. Half in AM and half in PM b/c babies metabolize things so quickly by night they have metabolized it all. Just a thought. You can go up in the Prevacid. My son has been on 30 mg since 4 months. This is a pretty high dose though but it works well for him. The GI also ordered further testing (scope, probe, GES) as well when he put him on this dosage. Almost all of the moms on here have used mylanta. My first pedi also said the same thing as yours. No mylanta (You don't need it while taking the Prevacid) and 15 mg was a max dose. She about croaked at the GI giving him 30 mg of Prevacid. I told her the research is showing that if a PPI isn't working it isn't dosed high enough and some babies needed a higher dosage b/c of their metabolisms. Needless to say, we ended up changing peds who was willing to think more out of the box with our son. Anyhow, hang in there until your appointment and please let us know how it goes. Just 3 more days!! Have they ever done an upper GI or anything?
Jul 03, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Just wanted to add that our son also had Sandifer's early on & in the long run we found out he was allergic to his formula (both milk-based & soy). In fact, I have read that up to 50% of reflux can be caused by a milk allergy. Does anyone in your families suffer from seasonal/food allergies, eczema, or asthma - this could be a predisposing factor for your daughter. Hope you can find your answers soon. I know how hard it is to have an infant in pain. El
Jul 03, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I know it is hard to wait but you will definitely make some progress once you get to your GI. The peds, as wonderful as they may be, just aren't experienced enough with this condition.

Hang in there. I don't think there is anyone on this board that doesn't use mylanta/maalox as a crutch. It helps more than anything for the pain if you don't have the right dose. Even when Katie was on the right dose (45mg), she still had to take Mylanta for a long time. Pharmacist can help you with the dose. My ped. always said half the adult dose.

The scopes are great because they can see what is going on inside (to justify a med dose) and they can also test for many intolerances.

good luck with your appt.

Jul 03, 2009
reesesmommy
Sandifer's syndrome
Thank you SO much. I had no idea that Mylanta was safe to give her! We are leaving in 5 minutes to get some! My husband and I have been agonizing over the decision to have the tests done because we wondered if it was necessary. Our 2 yr old daughter went through a few tests and we found them to be painful for her and in the end the Dr. said "yep its reflux" as if we didn't know that. In the hospital they suggested she undergo a 12 hour camera down the throat test... Not sure of the name. That made me cry at the thought of knocking her out that long at such a young age. I now see that it is necessary since she has only gotten worse since being in the hospital. As for the allergies, I have the most severe case of allergies my Dr. has ever seen. I have pollups the size of Texas in my nose because we can't get my allergies under control. I never gave a thought to that being part of this. I really wonder if this could have some impact of her. I plan to ask the Dr. If it wasn't for all the suggestions and info that you all share with me, I would never have the tools to better deal with this. Thank you from the bottom of my heart!!!!!
Jul 04, 2009
reesesmommy
Sandifer's syndrome
So we tried the Mylanta, and wow what a difference it made. Less crying and screaming!!! She still is only eating half of what she used to eat but atleast I don't have to watch her make those terrible faces and postures that go along with this terrible reflux. Question... Do your kids with normal reflux (not sandifer's syndrome) have faces that look very odd while they are refluxing. I guess I should elaborate, Reese pulls her bottom jaw extremely forward, her eyebrows raise very high, eyes are wide open. All this happens at once and usually she throws herself back. It has at times appeared to be seizures, even all the Dr. agree. I just wonder if some of this is just normal reflux. I understand Sandifer's syndrome but also wonder since its so rare if some of this is just typical reflux. Our 2 yr old daughter never did any of this and she had reflux pretty bad when she was an infant. I guess its just more for piece of mind. Thanks to all! Have a happy 4th!
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doctor first!