Posted By Posting
Jul 28, 2009
mommy2k
Worried about Kody
Sorry to be posting so much lately but we've been having it rough with Kody lately. He's been having some bad reflux symptoms for about a week now. He's been shaking his body a lot which he does when his symptoms are like this. Today I decided to videotape him which I thought I would never have to do. He was doing his usual fussing and shaking thing. But he then had a little type seizure looking thing too. I don't know much about sandifers syndrome. When I looked it up for the definition on it I thought that Kody didn't have it. I looked up in the first place because he always does that shaking thing when his reflux is out of control. His whole body looks like it's convulsing. But in the video his head drop down and it starts shaking and then he flails his arms and starts fussing again. He acts like something horrible is in his mouth as well. This is making me really frustrated because we thought we were getting this under control and now it's back to square one.

He still will only eat about 2-3 ounces of anything and nurse for only a few minutes at a time. He also is starting to not eat as much solids. He just has no appetite and he just makes fussy noises all day. Kind of like grunts I guess. It's really bad after he eats. He won't sleep, no appetite and now this convulsing thing.

We put a call into the gi already. Please does someone have any insight? How do you know if it's sandifers syndrome and what can be done if it is? I need to become more knowledgeable to help my little guy and tell the gi that the meds aren't working for him now. Our house is back to being stressed and tired again. It's not fun when the rollercoaster won't let you off. Ugh! Sorry so long!

Jul 28, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
If it were me, I would take him to the ER if the GI can not get you in today. You two have been put through the wringer and someone needs find him some relief today. It may be time for IV fluids as well. Does he look dehydrated? How many total fluid oz are you getting in him right now. Min for prevention of dehydration is 1.5 times their weight. It is amazing how quickly Ryan snaps out of it once they get an IV in him. Keep us informed.
Jul 28, 2009
refluxqueen
I'm sorry things are not going well at all for you...:( I hope Kody turns it around quickly.....I am sorry to not have any insight into the Sandifer's...DO I remember correctly that he was on EES? I think you had responded to my one about EES and my son.....anyways, I have noticed that while on it, my son has been eating progressively less and less every day, so maybe that is one of the side effects? I second vivilantmom in that maybe a trip to the ER might not be a bad idea, but I'd call your ped. as well and see what he might have to say, as well while you are waiting for the GI to call you back, if your GI is like mine, it can be awhile, I have to do that today as well.....GOOD LuCk!!!
Jul 28, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
PS. Can you attach the vidoe here or on UTube so some of the moms with Sandifers can see it? Ryan does not have Sandifers but would act liked you are descibing when I tried taking him off Prevacid in Jan and it back fired like no other... His pain was so bad his whole body would shake. Hang in there and get some help. Will he accept yogurt? That is pretty soothing...
Jul 28, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i would go to the hospital where you GI is doing rounds so that way you can get help and seen asap. i don't know what it is but it sounds serious i would get him seen. *hugs* good luck
Jul 29, 2009
mommato3
I am so sorry I haven't been around in a couple of days to read all of your posts. I homeschool my oldest kiddo and I have been getting all his curriculum and everything organized and ordered so we can start school next week. I am also so sorry you have had a rough week with Kody. I have got to post a pic of Holden as I look at both Ryan's and Kody's pics and my heart just melts and breaks for them as they go through this! I am like vigilantmom, if you need to talk please email me tracyanntarver@yahoo.com and I will give you my cell phone number. Sometimes it just helps to talk to someone that understands. Seriously. I think it is time to get Kody scoped. He needs to be checked for damage to his esophagus. All that shaking, awful taste in his mouth is prob. acid. I know your GI tells you he is on the highest dose possible but there can be and still prob is with the symptoms you are describing acid coming up his throat. Just watch him for dehydration. Maybe take him in for a weight check at your pedi's office. If he appears dehydrated then I would go to the ER but I would push your GI to be more proactive. I am glad they did the gastric emptying scan but now they need to scope him to see if the meds are working. You will feel much better after that. I do b/c while Holden refluxes like mad, I can rest assured there is no damage being done at the present time. I tell you what Maalox (that is what our GI told me to give Holden for breakthrough pain) has really helped him go to the bathroom. It is the magnesium in it. Also go to youtube and check out some of the sandifer's videos to compare Kody to that. Keep us updated and I'm serious about emailing me. I had a mom and a grandmom of a little boy that lives about two hours away that I've never met. The little boy is about 14 weeks and is going though all the vomiting, food refusal, etc. He was born with pyloric stenosis and the pyloraplasty surgery hasn't fixed anything. They just needed someone to talk too that had been through everything.
Check with your
doctor first!