Posted By Posting
Oct 15, 2008
katiesmommy
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
Katie saw the developmentalist today

We saw the developmentalist and she is about 4 months behind in her physical development. We go see the OT in November to work on some of her issues. Basically our HMO will only cover her if she is way behind so we are going so that they can show us what to do with her at home. He wants us to call Alta but doesn't think she is enough behind to qualify. She does have hypotonia in her trunk and combined with GERD he thinks this is the cause for the delays. We think she has some sensory issues since she screams if we change her clothes and if her food is anything other than formula in a bottle or purees she refuses to eat them. Because SPD is not yet fully recognized she won't get help for that but they will track her to see how she is doing at her 18 mo well check. She has stopped using words that she once used and is not pronouncing the ones she does use clearly but her hearing is good so he thinks it's part of her sensory issues. He didn't tell me anything I didn't know but at least I didn't get the "first time mom" question when I brought up some things that concern me and hopefully OT will help her catch up.

On a separate note the pharmacist won't let me mix her erythromycin even though it is in a bottle with water added because I might "mix it with tar". Apparently they think that I desire to spend way too much money and poison my child so that I don't have to care for her anymore. Insane, tar?!

Oct 15, 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
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I don't get the tar comment??!!!

Elyse screams bloody murder re: diaper and clothing changes too, and also cycles thru words...and I don't think she has sensory issues...

if Katie is 4 months behind, she IS behind enough to qualify for regional center services if they qualify kids the same way Valley Mountain does ( I see Alta and VMRC kids!). The child has to have a 30% delay in one or more areas....and Katie has a 33% delay since she is 12 months old.

Not sure why stopping using words would be a sensory issue?? Any insight on that?

Oct 16, 2008
sadie
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
SID is recognized here w/ our state program. I'm suprised it's not there. I'd go ahead and call the early intervention people- Keira is 12 months and physically she's like at 8 months in terms of delays. She was accepted with no questions asked. I will say that I've read that sometimes they take a pause from their words and such to go on to bigger and better things (in their mind anyways). Like Keira use to say dog all the time but now she'll only say it if we remind her but I think it's just because now she wants to work on pulling to a stand and attempting to get in a crawling position. It's like they trade off one thing for another. My step sister's son had some speech issues and it was almost like the way it felt to even talk aggrivated his senses if that makes sense. It's almost like he didn't like the way his mouth felt when making certain sounds? So he works with an OT for SID and a SLP (speech therapist) for his speech. Hugs to you two! We're practically in the same 'ol boat! :P
Check with your
doctor first!