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Jul 30, 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.
Keira's PT Eval #2
Since the state program royally let us down and blamed it on our insurance not having any "providers" that THEY work with- I went full steam ahead and made an appointment w/ the children's hospital rehab services for an eval there. Keira scored a 25 percentile on "locomotion". They said they don't feel it's the brain issues but they DO feel it's the reflux issues that got her off to a very slow start. They said since she was basically held for the first 3 months that it kinda took a downward spiral in her development. They were very nice about it and I didn't feel they were "blaming" me for not forcing tummy time but yet you kinda wonder if they were. Ladies- I just wanted to cry as it sorta made me feel like I was "sorta" being blamed for her delays. WTH- I mean I guess I could have forced it and maybe caused an issue w/ our mother/daughter trust and relationship all so that she could walk or crawl sooner but to me I felt I had to do this when she was ready or at least closer to ready. One thing I don't like is that it's an open place where all kids are in there getting PT. But I think that's anywhere really... unless you're lucky enough to get home services. It was hard to watch some kids scream and cry so hard they turned purple while the therapist was trying to work with them. I felt so bad for whatever caused them to be in there at a PT office to begin with. I swear as soon as Keira gets old enough for school I'm going to do something in pediatrics. I think we all have been through you know where and back and we'd work really well with kids at this rate! I was worried Keira would pick up on the crying of others and freak out but she seemed too busy to notice (thank GOD). She starts weekly next Tuesday. They also think she may have Sensory Integration Disorder.....if anyone has info on that I'm all ears. Thanks for letting me vent..... ;) I have to say it takes a lot of patience, love and courage and self discipline to go through what we've all gone through. I applaud ALL OF YOU MOMS for what you do for your children!
Jul 30, 2008
kubicki5
My first child had colic (could have been reflux..who knows). My MIL still makes fun of me because I always held him. Makes me crazy....what are you supposed to do with a baby that is constantly screaming. Don't feel bad...what else can a mom do.
Jul 30, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
Sadie, please don't let anyone make you feel bad for giving your daughter the best care possible. There are A LOT of us who have "broken baby rules" more serious than holding to keep our little ones comfortable! I am glad to hear that she'll be starting PT soon, hopefully like many others she'll make progress quickly and you won't have to go for long :) Also, I know that there are several moms here who will have info on Sensory Issues - hopefully, they'll pop in soon.
Jul 30, 2008
amber f
(((HUGS))) Now she can get the help she needs. It wasn't your fault. I didn't do tummy time with Nolan and it didn't make any difference in his development. You should talk to Rissaroo about the SID and I think Aubrey has the same thing. I'm sure they have a lot of info for you:)
Jul 30, 2008
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 sooner hold my crying in pain daughter till she was 25 (i know an unrealistic extreme but you get my point) and have her delayed a little bit in motor skills, then to have her be in one minuet of pain by herself, uncomforted. that's just me. i don't think they are blaming you but telling you what reflux has done. it's unfortunate that delays are a side effect to this disease but you should never feel you did anything less then the best for your dd! *hugs*
Jul 30, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Sadie-we are in the same boat as you. Katie took forever to sit up on her own-she was a week shy of her 8 mos. bday before she could do it for longer than 15 seconds. She still can't do it for long before she gets tired and is on her tummy. She has just started "comando crawling" two days ago and that was a huge leap for her. I do sometimes worry about the delays but she started talking at 7 1/2 mos. so I rationalize it that she is just going to be more verbal than physical and to stop worrying. We do what we think is best for our kids; we can't take the pain away but at least we can hold them while they scream. If it is my fault that Katie is behind then so be it; I didn't and still don't want her to think that she can't depend on me and I'm sure you are the same way with Keira!! If you could go back and change anything, would you? If your answer is "no" than don't beat yourself up!!
Jul 30, 2008
nicholas'smom
Sadie-Don't you blame yourself at all for holding your precious a lot in the beginning. It was most likely better for her reflux, decreased her pain and as you mentioned, formed a better bond and trust with your daughter. I am a physical therapist (have been for 14 years). I am not in pediatrics but did do a pediatric rotation and children can catch up with their physical development at any time-the help with her reflux and comfort she needed then. You made the same choice I would have made. Don't let anyone make you feel like you did her a disservice. You sound like a great mom!! Keep up the good work!!
Jul 30, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
I see the State was doing what it does best... :(

Keira is lucky she has a mom like you. And I owe you an email...just let me get caught up 1)on my grading and 2) here! Then you will be bombarded with my endless messages!
Jul 30, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
And don't feel bad for holding Keira. I held Sebastian for EVERY nap until he was about seven months old...and you know what? The kid knows he is loved, just like Keira knows SHe is. And by the way - my close friend Megan is tall and healthy...and she was the captain of our high school x-country team and her college x-country team...and she didn't crawl til she was well over a year and didn't walk until 18 months. So Keira is going to be FINE.
Jul 30, 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.
Thanks ladies-I knew you all would understand! :) I'm off to Toys R Us to get the special toys the PT recommended to help her move along.
Jul 30, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
Hi there. I can certainly sympathize. Coy, as you know, is in PT as well. The therapist suggested leg braces both for standing and for sleeping. I was fine, at first, with the daytime ones but I explained that he sleeps on his tummy all curled up. .. that he has since he was a few weeks old while he slept on me or daddy.. she figures that might be hindering some of his development as well. i also said we've held him a lot since birth because of his severe reflux. she said holding is good but so is floor time for developing. i took it with a they are just doing their jobs expressing their concerns. she was nice about it too, but i'm nto sure if she was 'judging' me or not. at this point, i don't care what anyone thinks. i've broken all the rules that i said i was going to follow for my child (i.e. sleeping alone, no spoling, BF, etc. etc.) ... because he doesn't fit into that particular mold, kwim?

don't feel bad at all. you've taken such wonderful care of her. if it was not for that they may not have discovered her hydrocephalus nor reflux when they did. i'm sure she'll catch up in no time with you there to support her.
Jul 31, 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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Sadie, if its any consolation, Elyse was born over 2 months early, and at 4 mos she had an overall evaluation that included PT and she was 50% delayed. At 10 mos I think it was they evaluated her again and I think she was 20-25% delayed??? At 12 mos when the pedi saw her, she was caught up to her same-age peers, regardless of her prematurity! She did not have ANY tummy time until 4 mos or so, up to that point she had been in the hospital 8 weeks or her life, and after that in the tucker sling on the wedge or in my arms (or someone else's). She did not sit up until 9 mos, but after that she really took off. She was taking steps by 12 mos and fully walking at 13. I bet Kiera will get there too, in her own time. :)
Check with your
doctor first!