Posted By Posting
Sep 24, 2008
rosepetal
tensing up like a seizure
i have a 12 week old who has been to the ER twice, once for possible apnea, did 12 hr sleep study came back normal, then episodes happened more frequently and ER again, this time did 1 hr EEG , came back normal, now being treated for GERD. has anyoe seen this happen in their child with reflux. usually episodes happen while sleeping and occurs when he is startled awake or moved to a burping position, or even when i simply stand up too quickly for him. He awakes, sometimes lets out a horrible cry and then tenses up, has a stern look on his face, and make a sucking sound (i am a nursing mother). lasts 10-15 seconds. Dr first thought sleep apnea, then the neuro ped, said low possiblily of seizure, he doesn't jack knife, throw up his arms, or throw down his head. Now, i see the signs of gerd. has hiccups everyday, always congested, fussy nurser, wet burps. but never a spit upper, or a colicy baby, he is my second and i thought he was so much better than my first. please let me know if anyone has seen these symptoms in their child
Sep 24, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Hi and welcome - is he arching his back and stiffening? If so, it sounds like his reflux pain still isn't bein controlled. I see that he's been diagnosed with GERD - is he on any meds? Are you seeing a pedi GI? It sounds like he's a silent refluxer, which means he's swallowing the reflux rather than vomiting it. Sending you big hugs - this first part is the hardest.
Sep 24, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
There have been cases of this. It can cause them to tense up when they have severe AR. Look up info on Sandiford's syndrome, not sure of the spelling. My dd starting having similar symptoms when she was a little older than your lo. She has epilepsy though so I'm sure it is different. Her short term EEG showed up normal but all of her long term EEG's have been abnormal. You might talk to a neuro and see if they could do a 2 day EEG in home. We did one of those and that helped with her diagnosis. She has been seizure free for months, until last week that is. I hope some of this info helps and you find out what is going on. You can email me if you need any more info. -Amanda
Sep 24, 2008
keely_and_allie
Hi, my 7 week old does the same thing. Sometimes we have to use the bulb aspirator to suction out the formula from her nose and mouth to get her breathing again. It's very scary. If your baby ever turns blue, call 911 right away.
Sep 24, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
My son has had episodes of choking, aspirating and apnea his whole life (he's now 17 months). Be aware that reflux can cause obstructive sleep apnea, but also be aware that many pediatricians DO NOT RECOGNIZE this. If you are concerned, and it sounds like you have reason to be, push to get answers. A normal sleep study does not necessarily mean there is not obstructive sleep apnea, because if it is caused by reflux, it is only happening when they are refluxing (as opposed to tonsils/adenoids etc. which tend to be problematic all the time when the child is lying down).

Did you receive a copy of the sleep study results? There is a lot of information in them, even when they are considered "normal," and it is also important to understand them because they are not always done correctly (ie, if there were not sufficient monitoring media used, they may not be able to detect some aspects of sleep/breathing disruption).

I spent 17 months trying to get answers to my son's troubles, and we're still trying to sort it all out and figure out what, if anything, can be done about it. It is essential that you act as your child's advocate in the medical system, because you are the one who is seeing what is going on and you are the one who knows your child best. If you are concerned, insist on getting all of your concerns addressed. That is their job. Sometimes they need to be reminded of that.

It's a scary thing to know that your child is not breathing normally while sleeping, and it can have a serious impact on everyone's ability to sleep, as well as the quality of sleep everyone has. Here are a few helpful sites related to sleep apnea, FYI

http://www.bcm.edu/oto/grand/121996.html

http://www.stanford.edu/~dement/childapnea.html

http://www.sleepapnea.org/

Sep 24, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Photobucket
i agree about looking up Sandifer's Syndrome...there is nothing you can do about it short of controlling the reflux, but it is preferable to actual siezures IMO! My dd had the choking, apnea episodes where she turned blue....the pedi WOULD NOT LISTEN or do anything about it except zantac and then reglan (no change). We eventually ended up in PICU for 2 weeks (other reasons too) and when she was started on prevacid a couple weeks after THAT, the spells got much less frequent.
Sep 25, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
We also got the Dx of Sandifer's - my dd never started spitting up until about 3 months either, so I was leery about the dx of GERD, even after the testing. Sleep apnea seems to be a big problem with a lot of these little ones, so take lots of notes.

Is he on any meds yet? As much as I hated medicating my girl, it made all the difference in the world, changing her form a screaming mimi to a happy giggler.

Sep 25, 2008
rosepetal
He is on zantac 1mL 2x. I don't think he has Sandifers. I don't see his head tilt. He really just tenses up and then makes a nursing sound. So, i am hoping that when he gets startled or moved quickly to another position, the acid comes up and really hurts, so he tenses and then makes the nursing sound because his throat hurts. It is crazy to realize that i was happy that he never spit up, now i wish he actually did, this silent reflux is so much worse. Everytime i hear a wet burp, I feel so bad for him. Thanks for the responses. I am giving the meds 2 weeks to work, and if the episodes stop or slow down then i will feel soooo much better, but if they don't the neuro said he will run more tests (mri, video eeg).
Sep 25, 2008
rosepetal
mom2adriane&morgan
he had an episode today and i video taped most of it. The neuro wants us in for a video eeg, mom2adriane&morgan, can you tell me what her seizures are like? i think this is what we are dealing with. :(
Check with your
doctor first!