My six-month-old son has had a myriad of problems since birth. He was born a month early, was in the hospital afterwards for jaunice and H. flu infection. Birth was difficult, he got stuck on the way out and there was difficulty getting him to breathe immediately after birth. He was on oxygen for a few days, IV and NG tube for a week - just overall he had a very hard start. Later we noticed he wasn't hearing and the test showed he had moderate to severe hearing loss. The ENT went in and took some fluid from his ears, and his hearing has improved but is not perfect. He has been receiving PT since he was a few weeks old - first for torticollis (wry-neck) and then for low muscle tone in his upper body/arms. On his last PT appointment last week, the PT voiced concern over the low muscle tone in his trunk. He is able to move his arms when his trunk is supported, but when he is not fully supported, his arms hang "limp," especially the left one. Examination showed he wasn't fully using his muscles in his back/shoulders on the left side. The PT stated she was concerned about if he may have CP and has referred us to a physiatrist. Of course, we can't get in to see her until mid-October. So, in the meantime we will continued with weekly PT appointments plus doing the exercises at home as well.
My question is, are there any moms out there with a child who has been diagnosed with CP? I'm very curious as to how early your child was diagnosed, as what I've read says it sometimes takes several years to get a full diagnosis. Also, any ideas on alternate positions to give his trunk more support? He does okay with tummy time, but will only prop on his elbows - he cannot bear weight on his hands. Any information would be greatly welcomed. Thanks is advance for the assistance!
Try calling Redwood, in Ft. Mitchell, KY. It is a center for children and adults with disabilities, they can diagnose a disability and provide support, resources, therapy and childcare. Best of luck with this.
Hi. My son has a mild case of Cp. It effects is lower body more then the rest, and his right side more then the left. In his case he has increased muscle tone. He is two and was diagnosed at about 1 yr. I was told that the only doctor that could make the offical diagnosis is a neurologist. My son was born @ thirty weeks. And was in a NICU for about 5 weeks. He had some heart problems and apnea as well as jaundice. Which is common with premies. HE almost came home on oxygen and had an enlarged ventricle on his brain. They acually did a MRI of his brain to diagnose him with cp. They had to but him to sleep it was like a mini surgery. Since then he has been in PT, Ot and Speech. He also has botox injection to help loosen his muscles. I'm lucky that in my area we have a program called fairhaven. He goes to there early intervention program. It's like preschool for children with disabilities and he gets extra therapy there. You may want to see if your area has a program like that. They can evaluate and start before a diagnosis is even made. It only took a couple of month to get the diagnosis after we started the process. In the mean time I would fill out papers with your local social secrity office. You maybe able to get some benifets for him. They do help out with the medical which you will need if he is diagnosed and the sooner you get started the better.
My son was diagnosed by a neurologist only because we asked. My son was healthy at birth, but suffered brain injury from bacterial meningitis at 6 1/2 mos old. We noticed some things after the illness and at 18 mos we asked our neurologist and she said that he has Spastic quadriparesis...which is the same as CP. Only reason she is not calling it CP is because it was not a birth related injury, but it's the same thing as far as the symptoms. Insurance is more apt to pay for more things with the Spastic Quadriparesis instead of CP. You may be reading that it takes several years to get a diagnosis because some drs don't want to diagnose early as they would like to see how your child progress. The brain is amazing to recover from an injury, but everyone is different.
My son is now 5 yrs old, still cannot walk, crawl or sit up by himself. He is dependent on feeding, dressing, toilet needs. He can talk, as he did not lose his hearing. You did mention fluid in his ears, did the ENT ever suggest tubes in his ears? My son had ear infections, which eventually caused the meningitis. We were lucky that he did not lose his hearing as meningitis can cause hearing loss. They ended up putting tubes in his ears (at 6 1/2 mos old) and he has not had an ear infection since and his hearing is fine. He has PT, OT and Speech. He also received Hippotherapy and pool therapy. I would recommend both if you can get to it. Hippotherapy, you have to wait until they are 2 years old, check the facilities. Pool therapy is wonderful as it relaxed the muscles and the therapist is able to work his tone. My son has high muscle tone when he is engaged in activity, but low tone when relaxed. Crazy. Ideas for positions, get a pilate ball or peanut and put your son on the ball. We got one and it helps with balance and bear weights. Since you have 6 mos old, maybe a boppy pillow that you can prop him up on his belly and bear weight on his hands. Good luck. You can e-mail me privately if you have any other questions. I've been through it all, from drs, to therapy, to what equipment to use, to school IEP.
I dont have much experiance with this but i do agree with the other mom that it is likly the brain not muscles alone injured my thought is if there is one around your area but if both of you mothers with these little ones could put them in a hyperbaric (sp) chamber wouldnt that help them????
I dont know how logical it is but i have heard of a family has one in there home for their child and use it on a regular basis their child has shown lot of improvment with these treatments??
Good Luck and best wishes
cdc.gov has alot of useful info in CP. they can tell as early as birth if a child has CP, the thing is if you want them tested that early you have to ask, otherwise they just do the normal screening. i'll be praying very hard it's not that and is just something that's an easy fix. God be with you.
I would definitely keep on the path you're on. Go to the physiatrist!!! They are the best for this diagnosis. It should not take "years" to diagnosis. Typically that type of doctor will diagnosis or not (if that's not it) very quickly. Ours diagnosed it the first visit. It sounds like you are doing what's best for now with the weekly PT appts. and exercises at home.
My son has several issues and was diagnosed with CP at 6 months. I have a couple of questions first off. Has anyone ever mentioned seeing a neurologist? If not, that would be a good idea, they can possible do an MRI or an EEG. He will probably be put to sleep for the MRI because he is so small and you have to be completely still. My son had one at 6 months. I am also wondering if anyone has mentioned a sppech therapist or an occupational therapist. The speech might be later when he is older, but if he is a drooler like my son, it could possibly help sooner.
If your son is moving his upper body with support of his trunk as your therapist about getting a SPIO, I can't remember the website but you can google it. My son has NO comtrol at all and we have used a spio before and he is able to sit up. Mostlikely your insurance will not cover but it is about $150.00.
Good Luck, if you have any questions please feel free to contact me privately at any time
Jenn.....
My almost 7 year old son had some of the same issues with regard to low muscle tone and poor core strength. They (doctors, therapists, etc.) said it looked a little like CP. We went to a physiatrist, too, a few times. Did an MRI that didn't show any thing in the brain. No one could ever tell us what exactly was wrong with our son, how he'd gotten this way or how to heal him. We eventually read the book What to do about your brain injured child by Glenn Doman; website is www.iahp.org. I was able to get the book from the library. Based on the description of your son's labor and delivery, I'd say with 100% confidence that he suffered a lack of oxygen to the brain and that is causing many of his gross motor issues. After reading the book, we felt like the book was written about our son! It explained so much that no therapist or doctor could tell us. It explains why injuries like this don't show up on MRIs. It recounts story after story of parents who go to doctors and say there's something not right about my child but the doctor can't give them any answers. It involves a lot of in-home, parent-run therapy, but it's well worth it. We've seen more progress faster than we did with any tradition therapy, which we did about 2 1/2 years of. Any time I hear a story like yours and see parents going down the same path we went down, I encourage them to read the book. We didn't find the book until our son was 4. We felt like we wasted so much time doing traditional therapies. This therapy targets the brain, which is where the injury is. Your son's tummy muscles aren't injured. It's the brain that is controlling his tone. Please feel free to e-mail me if you have any questions or if I can help in any way! Best Wishes,
R.
