It is frustrating to wait Staci. I live in Houston, where the Texas Children's Medical Center is. There is a wait to see his specialist every year. Right now, I have an appt for October 8th!!! This is with insurance, and a pre-diagnosed condition. I feel like I should be doing more, but there is no where else to take him. No one else (not reg pediatricians, pedi neurologists, etc) fully understand how or what to treat him for. It's such a game sometimes. I believe in our therapists, but they are limited to what they can do, and we need a doctor on our team to write prescriptions for PT/OT and the like. But when we visit the "team" of doctor and student docs......I think we get about 20 minutes of quality time. And they all say that Kai is not a "severe" case because thankfully he doesn't have history of siezures and is cognitive. They all tell me I'm doing everything I should be doing....sending him to school, therapy, - but I notice they all frown on chiropracty. When I asked why, no one could give me a definite answer. So this month we're going to begin our treatments with Dr Wilson, a wonderful chiropractor in my area. She has a small practice, and her youngest patient is 4 weeks old! We noticed Kai's colic and fussy behaviour was calmed down when we were going to the chiropractor. So, when conventional medicene has failed......I turn to alternative methods. There is no one else who seems to care what happens to Kai.........
I am so happy that the surgery Matt had has reduced his seizure. Your kids are both beautiful and Sophia is such a cute name.
It sounds like you are doing a great job getting Matt all the help he needs. I am having a big problem with getting services like PT,OT for my son. Every since he turned three and was out of ECI we have been on our own its hard and it seems no one cares. I even tried calling UCP in my area but they said that we were outside of the area that they serve.
I have been to to different pediatricians to get Hunter some PT and they have both not found anything. We finally got a referral going through for The Scottish Riute hospital in Dallas (its like the Shriners hospital) but that is going to be a process to get in.
I just don't feel like my son should have to wait for all this.:(
Well, alot has happened over these past few months.
its been one week since matt had his surgery to implant the vns system. its a vagus nerve stimulator that should help reduce the seizure activity that drugs don't help. he's doing great. the surgery and aftercare went very well with little pain. and the best part is that there has been a slight reduction in seizures already YEAH!!!!
also, matt just started getting private therapy through our local united cerebral palsy center. i wish we had started this a year ago. its an amazing place with some amazing people. he will get pt,ot,speech twice a week. he will still have the early intervention people involved, but this is more specific to matt's needs. i'm really excited about this!!!!
that's it for now. hope all is well with everyone else!!
How is everyone doing? Please take a second to give us a update. Let us know if there are any new milestones your child has reached. Anything new in your life. Also remember to post a link to your personal website.
well thanks for thinking i'm doing a great job, but frankly, there are lots of days where we are just plain lazy!! now i may be naive, but doesn't the local...
It is frustrating to wait Staci. I live in Houston, where the Texas Children's Medical Center is. There is a wait to see his specialist every year. Right now,...
I hate when I feel like the Doctors don't really care. It seems like if it was there child they would have already found him a place to go for PT. We have been...
I hear you girl....believe me I do, and I'm right there with you on the frustration part! Chin up.....! ... if it was there child they would have already found...
Thanks Jovi, I feel better that someone knows how I feel. When we visit family out of state and they ask if he is getting therapy and I say no that we are...
Staci, Did the Scottish Rite send you paper work yet or give you an appointment. I think we only waited a few months for our clinic visits and the main reason...
Hi Carleen, We mailed the paper work into the scottish rite this past monday. So we probably have a few months to go yet to get in there? I should make sure he...
Staci, Let me know if you need anything. I'll pop into family services while I'm there to see if there is anyway to speed up getting services. I have to stop...
Hi Carleen, It would be cool if you could say something to them and see what they say. He hasn't had and ortho appointment in over a year. Thats what I am...
Staci, Hey we all have to look out for each other, no one else truly understands what we go through to get these appointments. For years I have taken crap from...
How is everyone doing? Please take a second to give us a update. Let us know if there are any new milestones your child has reached. Anything new in your...
cerebralpalsy@yahoogr...
Aug 1, 2006 5:21 pm
Getting ready for my BABY (7 years old, she hates that sometimes that she is my baby) to enter 1st grade! BOHOOOOOOBOOOOHOOOO ;( Well, she is growing up ( and...
How is everyone doing? Please take a second to give us a update. Let us know if there are any new milestones your child has reached. Anything new in your...
cerebralpalsy@yahoogr...
Sep 1, 2006 8:56 pm
How is everyone doing? Please take a second to give us a update. Let us know if there are any new milestones your child has reached. Anything new in your...
cerebralpalsy@yahoogr...
Oct 1, 2006 7:45 pm
Last month Sarah had her hip flexors, hamstrings and adductors released. All seems to be going well. Next week the casts come off and rehab starts....
Hunter has been doing well. We still need to get him in to get new braces. He's going to the Scottish Rite hospital at the end of the month to be seen for...
I hate losing good therapists we had a great PT at school for 2 years and last year she had an okay one, this year I am not impressed at all. I believe they...
Glad to hear the surgery went well! We will probabally be doing the same surgery after the rhizotomy surgery. What was the total time she was/will be in a...
Since we didn't do the achilles she only had to do 3 weeks in the casts (and a day her surgeon and orthotics guy were both out of the office today. If they...
Interesting your take about the schools. Of course Emily will be out for an extended period of time and after your post I thought hmmm maybe I should check...
Most schools will not offer homebound studies unless the child is going to miss more than 4 weeks of school. I was told our schools the child had to miss 2...
So what are they saying? If the kiddo is up and moving around she can go to school? Thank you for the benefit of your hindsight I will call the school admin. ...
If it wasn't for laughter we would surly cease to exist. I amazes me that I fall for this all the time. She'll do real good today she will be alone most of...
Isn't that the truth. I'd feel guilty about my wallowing in self pity moments if it wasn't for the silly fits of laughter afterwards. I'm in Greensboro, not...
well we are home from the hospital and fighting everything. She will walk for me not not until she raises a big sting and tantrums. God this is going to age...
Well we have been quite busy....Emily was admitted to Duke Hospital for a baclofen infusion trial as a kind of diagnostic test to see if she is a canidate for...
Good luck with that we looked into that a few years ago but the doctors didn't think it was a good surgery for her they felt she had more to loose than gain....
Hi, My daughter had SDR with Dr. Park in St. Louis in June 2004. She was 3 at the time. The surgery was a great success for her. She was unable to walk alone...
I am glad to hear yet another good outcome. I have visited Dr. Park's website at the hospital a million times. Watching the videos of before and afters is...
How is everyone doing? Please take a second to give us a update. Let us know if there are any new milestones your child has reached. Anything new in your...
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