Posted By Posting
Apr 13, 2009
tamaraann1978
Really Worried
Ok...so it's been a weird night. Hunter turned 3 months yesterday. On Friday, Pedi wanted to add Zegarid. Hunter is already on Axid (was on Prilosec but they too him off it for a week). Seemed to do really well on axid but results not where pedi wanted them, I guess. We didn't have $ for that until this Friday, so pedi put Hunter back on Prilosec starting Sat. Had a good night Fri & GREAT night Sat. Tonight, Sunday, back to his episodes. Back arching, obviously in pain, etc, etc. Same stuff as before. Is it supposed to be like this? Couple good nights, then BAM! Bad night out of nowhere? BUT, he did something new (maybe not new, but since he always has these episodes late night/early morning, haven't noticed it)....he had these violent back & forth head movements (really fast, really hard) & his eyes NEVER moved-they just stared straight ahead & were....for lack of a better description...vacant. It was like there was no one home....WTH is going on with my baby!?!?!?! I tried to video it but by the time I got the camera from the other room, he'd stopped w/ the head thrashing. Got the other stuff (spasms, back arching, etc) on tape...but not what I wanted to capture as pedi has already seen all that. Again, he doesn't think it's Sandifers....I'm really worried at this point & just waiting til 8 (it's 5:30 now) so i can call pedi...can't sleep.
Apr 13, 2009
mommato3
I'm so sorry you had such a rough night. I know you are very worried. I would be pushing for some further testing. When is your GI appointment? How long is your pedi giving him to try out these medicines before changing them. It takes time for them to work and you won't really know if he is changing them to fast. Also he has to be on the right dose which can be difficult to figure out. If he doesn't think it is Sandifer's then what does he think it is? Seizure? If he thought for a second they could be seizures he needs to be referring you to a pediatric neurologist immediately. Now I'm not saying that is what it is but if you don't think your pedi is being proactive enough then I would go to someone else or demand to see specialists. Once again, I'm so sorry you're having to go through this. Please let us know what the pedi has to say.
Apr 13, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I agree with mommato3. I think it would be a good idea to get a GI and perhaps neuro opinion on these issues. That would scare me too! I would continue to try to get it on tape and write down when they occur and how long they last for your DR. Please let us know what they say!
Apr 13, 2009
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
Adriane is epileptic and she had seizures that sound similar to what you are describing. Sometimes it would only be her legs jerking but always the absent look in the eye. She has absence seizures still now. We noticed hers about that age but it took us months to really figure out that it was a seizure and to get a neuro invloved. I'm not saying that it is a seizure disorder but I think it warrants a visit to a neuro. I think you should demand a specialist and if he won't do it then you go somewher else. Sorry, you are going through all this. HUGS!
Apr 13, 2009
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
Can you get it on video and head to the ped to get started on the path to seeing a specialist??? That would most certainly concern me as well. HUGS
Apr 14, 2009
mommato3
What did your pedi say? How are things going? Keep us updated.
Apr 18, 2009
tamaraann1978
UPDATE
It's been interesting....he's started really doing well on just the Axid. Then they wanted to put him back on the Prilosec (not sure if i mentioned that before, but it's been back & forth on that...take him off, put him on, take him off, etc)....anyway, he did so badly w/ Prilosec last week I begged them to take him off it for good. Have become close w/ nurse there & she didn't think pedi was being aggressive enough either SO she's pushed for the neuro appt. Had that Thurs. EEG was NORMAL. Neuro guy said it sounds like Sandifers, which is what I asked Pedi if it could be TWO MONTHS ago! Am P*SSED b/c he said it absolutely could not be-i realize people make mistakes, but I wish he'd ordered these tests back then. He's known what's been going on & seen the tapes, etc. SO neuro said nothing to be done for Sandifers. Nurse then pushed for GI...pedi called one who wanted to do all these tests but she knows our $$ situation so pushed for a 2nd opinion from one a lot of her mommies love....HE said to start on Regalid (?) & see how Hunter does for a week. If no improvement, move on to GI test (b/c if he does have sandifers, they'd start him on this med anyway)....started last night & i think it's working! No big episodes last night...yay. Sleep. :) For both of us. :) BUT...am switching pediatricians next wk. THere's 3 others in the practice who nurse said are AMAZING. Pedi FINALLY got on the ball this week & started pushing for tests, but I've felt for awhile he wasn't aggressive enough & I was pushing for tests & asking if it was certain things & he just didn't want to go there. But I think we're on our way to improvement.
Apr 18, 2009
tamaraann1978
Update cont'd
Oh! I forgot....the pedi REALLY made me mad b/c he has NEVER ONCE changed Hunter's dosages OR changed his medication. He was on prilosec for like 2 wks & when i said it wasn't working..."i still think it's just reflux & give it more time"....then, staying on same doseage, add axid. No improvement....just give it more time. Prilosec isn't working...stay on axid but let's add Zegarid, which I was told is basically Prilosec! WTH!?!?! But now he's off prilosec which has also really helped. I really think the prilosec was triggering something 'cause he went downhill right away when we put him back on it after just the axid. But no more prilosec. :)
Apr 18, 2009
mommato3
I'm going to repost this as another post so others will see it. Also I'm going to add a post about some alimentum formula I can send you to try.
Check with your
doctor first!