Posted By Posting
Aug 01, 2011
robynsmommy
Robyn Nicole 5/28/11
Severe Reflux and DGE
Zantac 4.5 ml x 2 a day
Prevacid 2.5 ml x 1 day
Sanifers Syndrome
Sandifers Syndrome..9 wk old in pain
Hi...I need some help. I am at my wits end with our Dr and my LO is in pain. Her reflux symptoms began at 2 weeks and our ped gave Zantac at 5 weeks after a choking/apnea episode while nursing. Zantac worked briefly. Ped just ordered Barium swallow and small bowel follow through which showed reflux (dont know severity as I only heard preliminary report), and Delayed Gastric Emptying. Day after test, she shows these seizure like spasms. I take her to ER where they diagnose Sandifers and put her on Prevacid (2.5 ml compounded). So, I got her in with a GI tomorrow. In the meantime, shes screaming and having episodes and her ped says give tylenol. Needless to say its not doing anything....I read on babycenter lots of moms give mylanta cherry supreme but her Doc said no. I need something that helps right away. Also, her voice is very raspy...all her sounds sound hoarse. If she has lesions, would the upper GI show them and will the Prevacid help heal them? Is there anything I should discuss with the GI re: meds to help pain? Any advice would be great. I am already keeping her upright, smaller feeds more often, thickening with rice cereal (is Gelmix better for BF babies?)...thank you...
Aug 01, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
#1 an UGI small bowel follow through isn't used to DX GERD or a motility issue. You need a different test for those 2 things

For GERD you can do an Impendance Probe and for a motility issue you need a GES (gastric emptying scan).

As far as meds, I wouldn't get the Prevacaid compounded. It won't stay stable enough for long enough in order to do its job. Do you think you can get a solutab down? If not, other Moms here can help you with ordering some buffer babies from Marci's site.

The upper GI also will not show any lesions. You would need an EDG in the operating room under sedation in order to see that.

Are you seeing a GI??? If so, I'd say you could be due for a second opinion.

Aug 02, 2011
dcd
Have you been to www.marci-kids.com? I would go to the site and read all you can about how reflux works and your med options - particularly about dosing and administering PPIs (like Prevacid) in order to optimize their effectiveness. Many moms on this forum use Buffer Babies or Caracream (from Marci-Kids) with great success - including myself. You can read about BB/CC at refluxsolutions.com.

I agree you may be due for a second opinion. You should be seeing a pediatric GI, and that person should know what tests you need to properly diagnose your daughter. The PAGER website has a great guideline to GERD-related testing right here, have you checked it out?

You also might want to ask your doctor about the possibility of a milk protein/milk-soy protein intolerance on top of her GERD symptoms. Many babies have both (mine did), and the conditions mimick/complicate each other. You can learn more about MPI/MSPI at Neocate.come. Check out all the info under the "Parents" tab.

Hang in there. I'm sorry to hear your baby is suffering. We all know what it's like. Good luck and I hope she feels better soon!

Aug 03, 2011
robynsmommy
Robyn Nicole 5/28/11
Severe Reflux and DGE
Zantac 4.5 ml x 2 a day
Prevacid 2.5 ml x 1 day
Sanifers Syndrome
update
Thank you so much for your reponses. The tests were ordered by her pediatrician. After the ER trip, we got the referral to the pediatric GI. We went yesterday. He changed from compound to solutabs (I will place an order for the Caracream to be sure she gets all the granules). So as of now, Prevacid x2 a day (7.5 mg ea dose). Carafate 2 ml x3 a day. Does Prevacid have to be taken 30 mins prior to eating? I heard mixed answers on this. Can I use Mylanta Cherry Supreme for pain in between all this? She still seems SO uncomfortable all the time. Last night she had 2 bad choking episodes in her sleep where I ripped her up and had to do back blows. :( I called the GI to let them know and got a speech about how the insurance will not cover a change in med yet (not like I was asking), and even if she needs a new one, I have to wait 30 days. SHe said if the choking continues to call tomorrow. I am a mess. I am sitting her, unshowered, havent eaten, because all I do is pace the halls with her and when she rests (like now), I watch her for choking. I wish the medical community would help more...yesterday was hell trying to get the solutabs covered by her insurance since we just tried the compound.
Aug 04, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I'm at work, I promise not to leave you hanging. I will get back to you tonight. I work 10 hour days so it may be late, like after dinner when my little man goes to bed.

HUGS please know you are not alone. I live without sleep for 2 years and was the same way!!!!

Aug 04, 2011
dcd
I'm so sorry.

If you're using the solutabs, you have to give the Prevacid on an empty stomach, 30 minutes to 1 hour before she eats.

If you use the Caracream or Buffer Babies, you can give the Prevacid any time, without regard to mealtimes or whether her stomach is full or empty.

If you go with the Caracream or Buffer Babies, you'll mix the compound yourself using Prevacid capsules - like the regular 24 hr OTC Prevacid capsules you buy in the store. You don't need a prescription. (So no fighting with insurance.) The CC/BB will come with instructions on how to prepare the compound. Basically you cut open the capsules and mix the beads with the sodium bicarbonate they send you. It's the same way they compound PPIs at the pharmacy, but it's stable longer.

If you need more info, call Marci-Kids. Also ask your pedi GI about all this. My daughter's pedi and her pedi GI are on board with Buffer Babies for Prevacid. They were both familiar with the product before I even mentioned it. It's an easy way to optimize the effectiveness of PPIs for babies.

Once you get the meds figured out, if she's still having problems, you may explore a milk protein intolerance. In this case you'll want to cut out ALL dairy for several week to see if there is any improvement. To that end, know that the Prevacid solutabs do contain trace amounts of dairy. (Another reason why we use Buffer Babies/Prevacid capsules.)

Aug 04, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
It's going to take some time for the med to kick in, sometimes as long as 2 weeks to see the full affect from it. Being on the solutab is sooo much better than compounding. We *had* to use a compound with Jedd because it needed to be able to fit through a feeding tube and NO other meds we tried would fit, it clogged it. And a clogged tube is not a happy tube...LOL

We always gave PPIs on an empty stomach at least 30 mins before a meal. You also need to be careful to space out that carafate. We were told to give it 30 mins prior to any meals.

So, we would give the PPI 60 mins before a meal, then give his carafate at the 30 mins prior to meal mark. It worked for us, it's just hard to get the timing down.

Can you elevate her bed and see if that helps. WE used large books, 2 of them, when Jedd was in his bassinet. Once he went to a crib, we used a cheapy foam lift and then used a HUGE afghan blanket rolled up under the mattress. This worked great for us.

Check with your
doctor first!