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Extreme Veteran
Posts: 370
 
Location: Maine | Paige has many developmental delay issues. She can't hold her head up well, still doesn't push up from the floor when she is on her belly, doesn't sit up and can't roll over completely. Those are just a few of the things the developmental specialists keep saying. I've had more than one doctor tell me she should have physical therapy and we have even met with a therapist a couple of times. She's developing right on or ahead of schedule mentally and emotionally. She can wave bye bye and says mama. She manipulates things really well with her hands. She's very smart. I came into the hospital room one day to find her binky shoved into the tube for her blow by O2, she had just been covering it over until I took the blanket from her. At 8 months old, I thought that was a pretty neat trick.
Anyway, Paige's regular pediatrician keeps telling me that she doesn't think the PT will hurt her, but it probably won't help a whole lot at this age. Her genetic specialist keeps telling me he doesn't want her to have PT because it tends to be too strenuos and Paige needs to concentrate her efforts on eating and gaining weight. I met with the therapist and she not only recommended PT, but OT and Speech therapy. Paige sees so many specialists, doctors and nurses already, I was pretty sure I didn't want to go that far. Speech therapy at nine months old? She told me it would help Paige eat better, but Paige doesn't eat well because she gets too tired with all the extra work she has to do to breathe.
I know some of you have had premie babies which Paige has many similarities to, did any of you opt for PT or did they kind of just catch up on their own? Also, I've been told that all the surgeries, hospital stays and even pain slow the kids development down some. Have any of you witnessed that at all? Do they catch up to children their own age eventually? Paige's cousin is 6 weeks younger than she is and he is nearly standing on his own, but he doesn't connect things mentally as quickly as Paige does. Anyway, I was just curious because we will have to get back into some sort of routine once we get to go home and I'm trying to decide if physical therapy should be a part of it.
Edited by klent15 2006-02-12 10:58 PM
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| I would do it. Eli has Jarcho-Levin. She couldn't roll over or crawl because it was basically a mechanical issue. Our kids are not built like most. She never did learn how to crawl (just scooted on her butt). She was late developing EVERYTHING. She was in the First Steps Program and for her they provided PT, OT, and speech 3X a week. They worked her like a dog. She didn't progress like other kids do. In fact they were doubting if she was going to move along at all. Then, BAM she caught up all at once and all the efforts paid off. I would listen to the therapists because they actually work with the kids. As for speech therapy, my newest little guy gets it daily. He will never be able to speak, but it helps him with his eating skills and also his sensory input. I have seen a huge difference with this. Check your state for a Parents as Teachers program every state has one now, they should be able to guild you to this early childhood program. In Missouri it is called the First Steps program, but they may call it something else in your state.
Good Luck 
Peace |
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Expert
Posts: 3970
  
Location: Plymouth, Pennsylvania | KRIS,
MY THINKING IS THAT PAIGE WOULD BENIFIT FROM ALL THE THERAPIES...
IN OUR STATE THEY HAVE WHAT IS CALLED "EARLY INTERVENTION"...
THERAPIST ARE SENT IN AND AN EVALUATION IS DONE, AND GOALS ARE SET...
THE THERAPIES ARE PREFORMED IN YOUR OWN HOME FOR THE FIRST 3 YEARS...
ALTHOUGH ZOE WAS NOT ON O2, SHE WAS VERY FRAGILE...SHE WAS PHYSICALLY, AND HAS HADL, AND STILL
DOES HAVE, FEEDING AND WEIGHT ISSUES...BUT THE IMPROVEMENT THRU PT AND OT, AND SPEECH,
WAS VERY BENEFICIAL TO ZOE'S WELL BEING...
WE CHOOSE AN AGENCY THAT WOULD PROVIDE ZOE WITH HER THERAPIES....IT WAS AN AGENCY I HAD
USED FOR HER MOM, MANY YEARS BEFORE...PT, OT, AND SPEECH THERAPIST ARE HIGHLY TRAINED,
AND WITH YOUR HELP AND
INFORMATION THAT YOU WILL PROVIDE TO THEM AND YOUR DOCTOR WILL PROVIDE, I CAN ONLY SEE
"GOOD" THINGS HAPPENING FOR PAIGE...
ALL MY BEST TO YOU, AND MY PRAYERS AS YOU DECIDE...
GOD BLESS... |
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Expert
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Location: Springfield, Mo. | Hannah was behind in all these things too until she started PT and boy did she blossoms and was able to do things we weren't sure she would be able to do. Hannah didn't roll over until she was a little over a year old, but once we started PT she learned to crawl. (With only her arms as the contractures in her legs are to great to do a lot with.) We are truely pleased with how she has done with PT. I disagree with the doctor they thought the same about Hannah and no look at her. Sure PT is strenous and can really tear you up at times, but they reward at the is is so worth it. Hannah was a happier child, when she discovered the new things she could do. Don't get me wrong she was always a happy baby/child but you know the joy a child gets when they do something for the first time on thier own. Just seeing thier face light up everytime and the independance they develope. PRICELESS........ |
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Extreme Veteran
Posts: 552
| I agree I would give the PT a try. Like Lizzy, Janon did the same scooting on the butt trick. So much so that the rear end of her pants would get extremley warn. Janon was also delayed significantly at Paiges age. We did therapy for a while both PT and OT and it helped her tremendously.
We are actually starting back with both PT and OT because though she doesn't have the same issues she had then she still has some issues with her left arm and hand and bearing any type of weight arms.
I understand the physicians concern over weight gain, but is she gaining a ton of weight now without the therapy?
So I would give it a shot and see how it goes, my feeling is since this happened to us is that it will truly help her. |
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Elite Veteran
Posts: 833
Location: Chittenden County Vermont | Maggie had PT, OT and even speech for her eating issues since she was born. I think it has benfited her tremendously. Speech does just do language it evaluates for swallowing, chewing, gag reflex, sensory and texture issues. Pediatric PT and OT are very aware of the physical issues in context to breathe and weight gain. I would encourage you to give it a 3 month try and if you don't think it is making a difference re-evaluate. I think Paige would blossom with it.
Susanne |
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Member
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Location: Atlanta | You have gotten great advice already, but I thought I would add my two cents...I am a big fan of therapy, Christian had PT/OT from the time he was 9 months old and I saw some big improvements from it, not only did they work with him for the hour at therapy but then each time they would give me some home work of things I could do with him at home, it was helpful, I would agree with Susanne to give it a trial run and see what you think, let us know!!!!
Liz |
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Elite Veteran
Posts: 1079
Location: Brookfield, CT | Kris,
You have gotten some great advice. Seems like we are all in agreement that PT, OT and Speech therapy are a benefit to these children. Andrew has had a lot of success with all three. Due to post op issues, Andrew just started PT again. So far, so good. It seems to be working!
Good luck. I am sure you will do the next best thing for Paige!
Eileen
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Elite Veteran
Posts: 931
Location: Vancouver, Canada | Am I too late to echo everyones thoughts on PT 
Siobhan had an evaluation at our Children's Hospital for PT at around 8 months old. She could hold her head well, sit well, but couldn't roll over or crawl - She was also bottom scooter!
The exercises the PT did with her were age appropriate and fun, and I believe they really helped!
And hey, if they'll throw in any other therapies, I'd go for it!!!! Siobhan's 6 now, and "fighting" our School District to get any therapies is a struggle, so I would take what's offered! LOL 
Jacki |
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Elite Veteran
Posts: 1127
Location: Vancouver, Canada | Okay, I was afraid to post because I'll sound like a bad parent, but although we've been assessed for PT I haven't pursued it. The boys do things a little later and a little slower, but we have so much intervention going on all the time that I like to do without any that doesn't have a clear need.
We've done speech therapy for both boys but that's probably something to do with middle ear drainage problems, and maybe breathlessness, and I think it has helped.
So there's another point of view for you!
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Expert
Posts: 3243
Location: Utah | Susan - definitely NOT a bad parent. Braydon had PT evaluations (every 3 months or so) as an infant/toddler. Our ortho told us that for generally healthy children, being an active toddler/child is the BEST therapy they can have. It is true for Braydon. Riding a bike helps his calves stay strong and gives good cardio workout, climbing, swimming, etc. are all things they would simulate in PT but they do actively anyway.
That being said, I do believe there is a time and place for PT. Especially for those kids who's medical conditions prevent them from know how, or having the ability to be an active child. I agree with both views. There is a time and a place for PT. |
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Extreme Veteran
Posts: 370
Location: Maine | Thanks everyone, you've all given me something to think about. Paige doesn't eat well, hence the tube, but it seems to be mostly because she just gets too tired because all of her energy goes to breathing. She'll take 3 or 4 sucks from a bottle and then has to stop to pant like she's just climbed 16 flights of stairs. (I use the #16 because Peds is on the 8th floor and I end up panting like that when I don't take the elevator) anyhoo, She hasn't started on anything solid yet, mostly because she gags on it. I'm wondering if the speech would help with that? Also, at this age (9 months), what is the difference between PT and OT? |
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Elite Veteran
Posts: 1079
Location: Brookfield, CT | Hmmm got me on that one! I am not clear as to what the difference is between PT or OT. I think OT is play related??? Not clear though. They called it OT when Andrew was little. Now he is getting PT.
Speech therapy did help Andrew learn how to swallow solid food. Poor little Paige. Seems like she is just having a really hard time. I hope that Dr. Campbell can get your insurance worked out so that Paige can get her surgery so she can breath better! Did they ever figure out why she was bleeding?????
We are thinking of you! Glad you are feeling better!!
Eileen |
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Elite Veteran
Posts: 833
Location: Chittenden County Vermont | PT focuses on gross motor and OT focuses on fine motor skills and daily living activities.
susanne |
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Extreme Veteran
Posts: 424
| Kris,
Caroline has had therpay since 6 months of age (she'll be 6 yr in May). Her OT concentrates on her fine motor/upper body and her PT does gross motor/lower limbs, back, walking, etc. Her ST has does oral motor, breathing and eating exercises. Hope this info helps! Shannon~Caroline's mom |
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Veteran
Posts: 179
| Alex benefited a lot more from OT and ST than he did PT, but all three were good experiences for him. In my opinion, your geneticist is ignoring the entire picture. Health is measured not only through physical metrics, but by the well-being of the child mentally as well. I think you should try it for a few weeks and see if it works, see what Paige enjoys and go with it. :-)
If anything, it's a couple hours a week where the kids get to play in a structured learning environment and you can take a little bit of a break.
On an aside, Alex's speech therapist did something I thought was a little strange, but now looking back I think it really did help. He had all these aversions to eating, even touching his facial area would sometimes make him gag, or being upset. Some sort of sensory issue I think. But she would take this soft brush and rub it all over the bare skin of his arms and legs for a few minutes each session, and he totally hated it at first, but I think all the sensory input kind of reset his system and he actually improved after that. |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | READING MATTS POST CLICKED ABOUT SOMETHING WE DO WITH ZOE...
FROM THE TIME SHE WAS BORN, 8 YEARS AGO TODAY, THEY TOLD US IN THE
NICU TO TOUCH HER, AND DO FULL BODY MESSAGE ...FROM THE FINGER TIPS TO THE TOES...
E HAVE DONE THIS FOR THE PAST 8 YEARS EVERY NIGHT OF HER LIFE, EVEN WHEN SHE
WAS IN A COMA A FEW YEARS AGO, AND ON LIFE SUPPORT, WE NEVER STOPPED...
IT IS SOMETHING THAT IS VERY COMNFORTING TO ZOE, ON GOOD DAYS AND ON BAD...AND
SOMETHING I HIGHLY RECOMMEND...
GOD BLESS...
Edited by Zoes Nana 2006-02-26 11:48 PM
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| Matt, the brush is called a "corn brush", they use these for surgical scrubbing. They use the brushes for deep pressure massage and it is GREAT for sensory issues. The therapy is called the Wilbarger Protocol and is extremely effective for a lot of kids. My oldest is Autistic and suffered greatly from Sensory Integration issues. When they started this protocol with him it was like a miracle. You have to combine it with a sensory diet after they are brushed to get the most effect. This child who never slept for more than 2 hours at a time EVER, was sleeping through the night after 2 weeks of this. Now because of this therapy he is like most kids his age. Without it, he would have to be heavily medicated and would not be able to go to school. He also would NEVER hug me and now I can't peel the kid off of me The oral part of the therapy includes rubbing the teeth back and forth seven times all the way around, then taking your index finger and gently pulling 3 times down on the front bottom teeth. Without that part of the therapy my son would practically eat his clothes everyday. Now his clothes are dry
Just some info. that I hope helps There is also a great web site www.integrationscatalog.com
Peace,
Julie
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Thoughts on PT
