8 month old and cerebral palsy?

[Laylalover]

He everyone my name is Jessica and I am new to this group. A little back history:

My son Ben was born May 2011 and was rushed to a Children's hospital because of his fast heart rate. I didn't know his heart was any issue until that day, so I had an emergency c-section at 38 weeks. He was 10.5 pounds and 22 inches long! It took 4 weeks to regulate his heart with meds before he was allowed to come home. He is doing a lot better in that area as of today, thank God. The doctors think he has outgrown the condition and are slowly weaning him off of the 3 heart meds. Around 2-3 months we noticed that he was extremely crooked and would only turn his head one was. Turns out he has torticollis and scoliosis, and extremely low muscle tone. He started PT right away and the tort is gone now, but he still has scoliosis and extremely low muscle tone. He does PT twice a week and is getting ready to start ST because he isn't making a whole lot of sound yet and when he does it's just a lot of "ahhhhhhh" sounds. Our main concerns are these: slight ATNR or "fencing" reflex, not sitting yet, stiffens legs when held up, although he doesn't scissor them, still has strong head lag, his feet kind of turn in a little, no syllables, and still has a few feeding issues (have to thicken his formula because he also has Laryngomalacia), and he has absolutely no cartilage in his ears which the therapists think is odd. I've also noticed that if you put him on the couch and let his roll off (I catch him of course) he doesn't brace himself or even tighten up in the least when he is falling. Is that normal? I have a 2 year old and I can remember she had those reflexes when even held upside down so to me, it's weird that he doesn't. He is now 8 months old and I've read a lot about CP and Hypotonia and it seems he has a lot of the markers for this. Does anyone here have any experience with this and if so, this young? I can't seem to get answers anywhere and I'm going crazy. Ben has an appointment next week with Genetics so I'm hoping that will be a good place to start. Any help or advice would be great. Thanks!

[sayres]

Hi Jessica! Welcome to the group. My ds has generalized hypotonia but does not have CP. He has a motor planning disorder caused dyspraxia. My son is 4. Low-tone cam cause children to be delayed in their gross motor and fine motor development. Hypotonia is a symptom of an underlying issue and not a diagnosis. When my son falls even now at 4 (and he falls a lot) he isn't able to get his arms out fast enough. Sometimes he can but alot of times he can't and he goes right down. It's hard to watch but because his muscles don't tense up he doesn't normally hurt himself. Weird but true. I don't know where you live but there is a very well respected hypotonia clinic at John's Hopkins Hospital in MD.

[sayres]

I also wanted to suggest that you have your ds seen by a pediatric physiatrist if you haven't already. My son sees one and he has been really helpful in letting me know what to watch out for due to my son's low muscle tone.

[airbornewife06]

My son has the scolliocess and he's in a back brace for it he had alot of the same issues your son does and he's fine now he uses a medical walker to get around and he didn't sit up for the first time until he was 20 month

[airbornewife06]

also I know a few ppl who have kids w ith CP and non of them can hold there heads up on there own i know one who has a 10 yr old who can't hold her head up

[Laylalover]

Wow thank you for your response. How old was your son when he was diagnosed? And what was he like as a baby? I will do some research on your sons diagnoses to better understand it. I live in Florida and about 45 minutes away from a really great children's hospital. Could a psychiatrist do anything for a baby? I really appreciate your ideas .thanks.

Quoting sayres:

Hi Jessica! Welcome to the group. My ds has generalized hypotonia but does not have CP. He has a motor planning disorder caused dyspraxia. My son is 4. Low-tone cam cause children to be delayed in their gross motor and fine motor development. Hypotonia is a symptom of an underlying issue and not a diagnosis. When my son falls even now at 4 (and he falls a lot) he isn't able to get his arms out fast enough. Sometimes he can but alot of times he can't and he goes right down. It's hard to watch but because his muscles don't tense up he doesn't normally hurt himself. Weird but true. I don't know where you live but there is a very well respected hypotonia clinic at John's Hopkins Hospital in MD.

[sayres]

My ds was 3 when he was dx'd with dyspraxia but about 1 or 2 months when we learned of his hypotonia. DS did everything late. He couldn't sit by himself till he was 9/10 months old he didn't walk till around 16-18 months. DS's issues are not as significant as many children with hypotonia. One thing that is still an issue for him is getting up from lying on his back. If he us lying on his back and you pull him up he can not bring his head with him. His head doesn't come up till he is fully upright. This is something a baby can do. My son's trunk muscles are so weak it is still an issue. I beleive a pediatric physiatrist does work with babies. They specialize in spine and muscle health in children. There might be one at the children's hospital near you.

Quoting Laylalover:

Wow thank you for your response. How old was your son when he was diagnosed? And what was he like as a baby? I will do some research on your sons diagnoses to better understand it. I live in Florida and about 45 minutes away from a really great children's hospital. Could a psychiatrist do anything for a baby? I really appreciate your ideas .thanks.

Quoting sayres:

Hi Jessica! Welcome to the group. My ds has generalized hypotonia but does not have CP. He has a motor planning disorder caused dyspraxia. My son is 4. Low-tone cam cause children to be delayed in their gross motor and fine motor development. Hypotonia is a symptom of an underlying issue and not a diagnosis. When my son falls even now at 4 (and he falls a lot) he isn't able to get his arms out fast enough. Sometimes he can but alot of times he can't and he goes right down. It's hard to watch but because his muscles don't tense up he doesn't normally hurt himself. Weird but true. I don't know where you live but there is a very well respected hypotonia clinic at John's Hopkins Hospital in MD.

[willysmama]

Hi and welcome! My son is 7 yrs old and has hypotonia, tbi (traumatic brain injury) but it presents like cp, among many other diagnosis. My son started to hold his head up pretty well when he was 3 yrs old. He still cant sit for long but its up to like 4.5 mins when he wants to do it. My son uses his tone to walk, he does scissor walk though. He didn't at first but has since he was 3. My son also doesn't have the protective skills for like when he falls he doesn't brace himself for it all the time. He is getting stronger but its slow

[marklorna]

Hi, I have a 14 year old with CP.  It may be a good idea to also have a CT or MRI done to see if he has any brain injury.  I agree with a Pediatric Physiatrist (not Psychiatrist) at they deal specifically with physical growth, development and rehabilitation.  Do you have an Early Intervention program in your area?  It's something you should look into.

[marklorna]

Quoting airbornewife06:

also I know a few ppl who have kids w ith CP and non of them can hold there heads up on there own i know one who has a 10 yr old who can't hold her head up

It depends on the severity.  My 14 year old daughter can walk, talk, dress herself, feed herself and is very active.  However, we were also extremely pro-active and to this day, continue with therapies.

[Laylalover]

Yes Ben is involved with Early Steps and I've called them several times last week and no one has called back. Really annoying. These are really good suggestions and I appreciate you talking the time got reply.I am asking for an MRI at his appointment with the genetisist this Wednesday.

Quoting marklorna:

Hi, I have a 14 year old with CP.  It may be a good idea to also have a CT or MRI done to see if he has any brain injury.  I agree with a Pediatric Physiatrist (not Psychiatrist) at they deal specifically with physical growth, development and rehabilitation.  Do you have an Early Intervention program in your area?  It's something you should look into.