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Hi All,
Our little 27 mo boy was recently diagnosed with mild diaplegic cerebral palsy with spasticity.
Background:
Our little guy had low apgar scores (4@ 1min, 5@ 3min, 5@ 5min), apnea, feeding difficulties, was slow to walk (17 mo old), his ankles turn in slightly, he does not qualify for speech therapy, but he tests on the low end of normal. BioMom admits to drug and alcohol abuse, but denies she abused during pregnancy. He also seems to have some behavior issues. He will go from happily playing to tantrum almost instantly. Tantrums include throwing himself to the ground (on any surface), screaming, kicking, throwing and/or hitting anything he can get his hands on, slapping himself on the head and/or banging his head, etc. Holding him and/or trying to talk to him always sends him into an even worse rage.
Anyway
He is currently receiving physical therapy once a week and his therapist wants him to have occupational therapy. Physical Medicine doc wants to do leg braces and botox injections.
I have been doing some research, and I hope some early intervention will go a long way. I want to get him in a good pre-school program that might help him with any learning disabilities. Problem is we can't afford any of the ones I've found out about. We are pretty far along in our adoption process and have had conversations with the subsidy people. He is a great little guy, and I don't believe his problems are severe. We just want to give him the best help we can.
My questions:
Is there any additional testing we should have done for him? What should we ask for now? The subsidy worker says, any problems he will have will be covered by Medicaid. He is so young who knows what problems he will have in the future. Our cw says, you can have services/subsidy re-evaluated every year, but they have never seen that work. Ask for it now or forever hold your peace.
Any ideas or suggestions...
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or research facility that specializes in exposed children - ASAP
does he have a neurologist? ENT surgeon? sleep studies? MRI of spine? of brain? child psychologist (especially due to personal history and biological history...........
make sure his EDUCATIONAL AND BEHAVIORAL are covered in subsidy.
This is not about money - this is about making sure your child is taken care of and as his mom you need to advocate for him (I know you will :) )
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Hello there. I am mom to adopted 3yr old twins. They were born at 28 weeks. My son is very much like a full term baby but my daughter has had some delays. We have been receiving therapy through our state's Early Intervention Services. The therapy provided is at state expense until the child turns 3. My daughter has received Occupational Therapy, Physical Therapy, Speech Therapy, and has attended a developmental preschool. It was a reall blessing to find this service, because these therapies can be expensive. The good news is that with therapy, a lot of kids can progress. My daughter has come a long way and is now in the normal range. Look in your phone book for your state's Early Intervention Services, you could also call your pediatrician as they might have the number. If no luck there call the NICU at the local hospital. They will definately have the #. (The nurses at the hospital told us about the program.) Once you contact them someone will come out and evaluate your child for delays and areas of need. They will help arrange therapy and for adaptive equipment if needed. There is so much more to say...but I am trying to be brief. Good luck, I hope this helps. If you have any questions I will be happy to answer them as best I can. FabFamilyof4Laura
My son also has CP and he is adopted. We receive an average subsidy, probably lower than many states, and medicaid. We have never paid a dime for any of his medical or developmental services. When your child is 3, he will transition to the special education program through your school district. You (or someone from your therapy center) should contact them 3-6 months before his birthday and let them know that you want him to be placed on an IEP. That will start the process. I should warn you, though, that often the services through the school are much less often than what they are getting before. We have continued private PT, which is paid for by medicaid. My son also gets OT for his sensory issues. He was -exposed and his mom also denied using but his dad has admitted that they did. Good luck with your little one!
We were thinking about taking a set of preemie twins with one having CP, do you mind me asking about some of the the day to day difficulties of dealing with this disabilitly? the boy is ok but the girl has the most problems she can walk but she has had some feeding problems they have just turned three, thanksmelissa
It is hard to tell someone else about a "typical" child with CP because each child can be affected in a different way but I will tell you about my son. Jackson was three in March and he has been walking since about 15 months. He does wear braces on both legs that go to the top of his calves. Jackson's CP affects his left side and is called Left Hemiplegic CP. He is basically weaker on the left. When he walks and runs he is often on his toes and he draws his left arm up with his elbow out. Other than that, he looks like a typical kid. He has had extensive feeding issues. Last year, he had surgery for severe reflux and had a feeding tube placed. We were scared to but, let me tell you, the feeding tube was our best friend when he was unable to swallow for a while. He has always had trouble with aspiration and our feeding therapist recently told us that he may never have "normal" chewing and swallowing skills but he now eats well enough to be totally orally fed. We will have the tube removed in the bext few months, if all goes well. Jackson also has sensory issues which cause him to be easily overstimulated. He has needed speech therapy in the past but is now at his age level. It would be helpful to know which type of CP this little has. I would be happy to talk more about it with you. I always think that the issues look worse on paper and when you see and live with the child, they become such a small part of who they are. We forget that Jackson has CP all ofthe time-he is milddly affected compared to some. I do not regret adopting him and would do it all over in a minute!
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