Posted By Posting
Aug 20, 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.
Rough times w/ PT
So Keira has had her third pt appointment yesterday. Last week I worked very very hard w/ her on her excercises. Here's an issue though-it's done at the hospital where other kids are in the same room screaming like crazy which upsets Keira and makes it hard for her to concentrate. There's really no where else quieter as they only have so many rooms. So after working really hard w/ her last week yesterday we went in for her appointment and of course-she wouldn't do anything that we worked on. She just cried and cried. I wasn't upset w/ Keira but I did feel like it made it appear as if I had not done anything w/ her all week. I knew it was because it's not her home, there's other people all around and other kids crying, ect. At home she does waaaaaaaaaay more than at the hospital. I kinda felt the therapist was getting a little frustrated. Each visit I wonder if she's going to give up. She asked me if Keira spends most of her time on her back. Well months and months ago? Yeah but now she's always sitting up. The only time she's laying down is if we're doing her excercises or if she's napping or down for the night. The therapist wants me putting Keira on her tummy pretty much all day. Well if I do that-I'd have to keep my hands on her back as she'll roll right back over as she hates to be on her tummy. How on earth can I do that all day long and still be expected to keep the household running and errands taken care of? I work REALLY hard w/ her but I cannot do it every single second of the day. I just felt like I got shot down for what I've tried to do. She told me Keira is VERY strong willed. Yeah I know that-she refused to come out of the womb! LOL. She told me that when Keira gets fussy during therapy that she just tunes it out and she suggests I do the same. That bothered me a little. I mean yeah when she's fussing because she just doesn't "wanna" do something that's one thing but I can tell when she's really had enough too. They're babies-not adults. I dread going to PT. I don't show it but I dread it. I feel like if Keira isn't crawling/walking then I feel like the therapist blames me for this. Thanks for letting me vent! Now we're off to her OCCUPATIONAL therapy eval. FUN-More Homework!
Aug 20, 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.
sorry to hear its been so difficult. honestly, it doesn't seem like a supportive environment for infants. its a children's hospital, right? they should have individual rooms for you and i'd inquire about scheduling only when that is available. Id maybe inquire about another therapist if you don't feel comfy with this one too. i don't know how they can expect her to NOT get upset or be able to pay attention in a room full of chaos. We never went in a room full of other kids and coyle absolutely loved going because there are so many new toys. however, when she started "messing" with him (excersises and stuff) he fussed too. She was great about it and would often end sessions early or stop for a few mintues to let him play.

as far as "tummy time" is that becuase they are worried about her not crawling? you know, even some kids w/o disabilities never do crawl and many don't even walk alone until 15 mo. what justification does she have for telling you to 'force' her on the tummy time? anyway, if you want to get her to do more tummy time you can try it maybe in the grass or in a baby pool with very little water??? maybe a change of scenery? in addition, tummy time @ those places is SO GROSS.. lol. coy comes home so disgustingly d.i.r.t.y! its a hospital for goodness sake...
Aug 20, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
I am really just butting in here. I don't know much about PT except my younger brother had to do it and he HATED it. He was a tip-toe walker. My mom put fun music on and tried rewards and he just wouldn't do it. However, it seems like 1) you and your lo don't like the therapist, 2) you lo doesn't respond well to the therapist and the environment. That would make it a waste of time for everyone and not productive for Keira. If you can, change therapists. Keep doing that until Keira is in a comfortable environment and is responsive. My ignorance again but can you get someone to come to your house? Also, video the sessions at home so you can show the therapist. Then she will see what progress is being made and can more accurately treat Keira. Good luck!
Aug 20, 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!

Kmom~Good idea! Taping showing her progress might prove that it is the environment that she hates!

I so understand your frustration! Katie has only recently learned how to "comando crawl" as she hated tummy time. She has only been sitting up for 2 months and when she gets tired she can't do it anymore. She was supposed to have a neur consult for dev. delays and after a week and a half I finally called to set up the appt. and was told that 1) the dr. put the referral in the computer wrong 2) they only have the pedi neur. out once a month so it will be Oct. before they can see her. She is already months behind developmentally and now they want to wait 2 more months before she can get help!

Sorry! I too didn't want to take over your post!! I understand your frustration and we will most likely be in your position once we actually get the appt. as Katie HATES to be put down in an environment that she is not familiar with. Just keep doing what you are doing with Keira and she will catch up in her time! I tell myself this too!

Aug 20, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Sorry it is such a challenge. I wish I could offer some advice, but I have none. Just wanted to let you know we are thinking of you.
Aug 20, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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don't feel bad. It took Quinn many sessions to actually go to an appointment and not spend the whole time crying. It's a sensory thing. What worked for us was a swing. At first, she had to swing with me holding her in my arms for pretty much the whole session. Then after a few more sessions, she was able to settle down for the last five or ten minutes until now, a year later, she is happy to go to therapy and work on all the things she needs to work on and instead of the swing being a comfort, it is now something fun we do to work on her core strength. Ask your therapist about trying a swing for a little bit to bring her overactive mind to a more calming and welcoming mind. Or holding her and bouncing her on the ball. You always have the right to recommend a different therapist if you don't feel that Keira is getting what she needs. Don't give up, they see kids all the time. I'm sure that they are not thinking that you are a failure. Keira is in there for a reason, and they should know that. -Sarah
Check with your
doctor first!