Down Syndrome and CP

[tworiveras]

Hi, I have an 8-year old son with DS. He was just diagnosed with mild diplegic CP. I was wondering if anyone has experience with a child with both diagnoses.

[wrblack]

Hi,
Welcome to Uno Mas. Sorry, I guess, can't help with dx of Ds with CP.
I've got a 6 1/2 yo son with dual dx of Ds and autism. Funny though, just this morning my wife and I were talking about how lucky we are that neither of our little boys has CP. Don't remember exactly why, but I had mentioned having seen something about premature infants with birth weight of less than 3 1/3 lbs. had a 30-fold greater risk of CP than general population. Each of my sons, born 4 years apart, weighed less than 3 lbs. at birth. But neither showed any signs of brain bleeds in NICU.
When Charlie got his dual dx involving autistic spectrum disorder, my wife had been afraid that doctor was going to say CP. No, we got slapped with autism instead.
About the only thing I can find on combination of Ds and CP reads like poorly-machine-translated Italian
www.altonweb.com/cs/downsyndrome/cp.html
And makes it sound like the combination is quite rare but in need of further research.
But hope you'll hang around in Uno Land and we get to know you and your son better. Feel free to come on over to the general forum and join in the general fray.
Also, you could post an intro in the Who's Who forum but be aware that, if you do, the rest of us can only read, not reply there.
Regards,
Bob

[willsdad]

Welcome to Uno Mas. We are glad you came. As Bob mentioned, most of the traffic on Uno Mas is on the general forum, so be sure to drop by and introduce yourself there also. I'm sorry that I don't have any specific information to offer on a diagnosis of Ds and CP. With as many different families as we have on this site, I wouldn't be surprised if someone here hasn't had some experience with a CP diagnosis as well.

Sincerely,

Mitch

[momofrussell]

Yes.. Welcome To Unomas!!! I have to experience personally or otherwise on DS and CP together... but it looks like Bob might have given you a link to try?

And yes.. please post in the general forum which is just right up above this one.. we'd love to hear more about your family!

A.

[sarahp]

Hey,
I don't really have a lot of experience with CP, but either during or after my son, Cohen, had his AV repair, he had a stroke. The neurologist says that he has about a 60% chance of having CP now. He does not really use his left arm and hand since the stroke.
I also think that he may have Autism. None of the doctors have suggested it yet, but he is 8 months old and he does not really smile or laugh much and he will not turn to look at you when you call his name or try to get his attention. Does that sound like a typical Down Syndrome baby or does it sound like Autism, too?
I'd appreciate any input. Thanks!

[Jessie]

First, welcome to Uno Mas!

Second, I too have never met a child with the dual dx. I asked my cousin who is a peds home care nurse (so she sees all of the new babies that need extra help once they go home) and she has never seen a baby with that dual dx.

If you don't mind my asking, how did they diagnose the CP??

Jessie

[tworiveras]

In Arizona, it's hard to find a PT with availability after school. The school won't give him PT because he can make it from place to place without assistance. Anyhow, my son slaps his feet when he walks, and really can't run. He does a funky fast walk thing. Well, I remembered that when he was about 2 he had orthodics for a while. I was curious if he needed them again, so I asked his doctor. He referred us to an orthopedist. The orthopedist didn't find anything wrong orthopedically, but with a couple of key bits of info about his early infancy, he suggested we se a neurologist. My son was born 3 weeks early, because when he was lying breech, they tried to turn him. While they were doing that, his heart rate dropped in half. It went back up when they stopped, so they let him be for a couple of days, then had me come back in for a non-stress test. Long story short, he failed that, and they took him in an emergency c-section. He also had an Atrial-Septal defect repaired at 6 months of age. These few facts paired with the fact that his reflexes in his legs were not normal, and the muscles were tight in his legs, led the neurologist to determine a diagnosis of CP. I believe that nobody had taken notice before, because they all just figured everything was due to his DS. They will do an MRI to make absolutely sure, but the doctor is pretty confident that it is CP.

Karen

[wrblack]

Karen,
I sent you a PM yesterday. Hope you got it.

Here's a snip from NINDS, www.ninds.nih.gov
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What is Cerebral Palsy?
Cerebral palsy is an umbrella-like term used to describe a group of chronic disorders impairing control of movement that appear in the first few years of life and generally do not worsen over time. The disorders are caused by faulty development of or damage to motor areas in the brain that disrupts the brain's ability to control movement and posture. Symptoms of cerebral palsy include difficulty with fine motor tasks (such as writing or using scissors), difficulty maintaining balance or walking, involuntary movements. The symptoms differ from person to person and may change over time. Some people with cerebral palsy are also affected by other medical disorders, including seizures or mental impairment, but cerebral palsy does not always cause profound handicap. Early signs of cerebral palsy usually appear before 3 years of age. Infants with cerebral palsy are frequently slow to reach developmental milestones such as learning to roll over, sit, crawl, smile, or walk. Cerebral palsy may be congenital or acquired after birth. Several of the causes of cerebral palsy that have been identified through research are preventable or treatable: head injury, jaundice, Rh incompatibility, and rubella (German measles). Doctors diagnose cerebral palsy by testing motor skills and reflexes, looking into medical history, and employing a variety of specialized tests. Although its symptoms may change over time, cerebral palsy by definition is not progressive, so if a patient shows increased impairment, the problem may be something other than cerebral palsy.
----------------------------

I rather hope that Roberto's MRI is informative. Sometimes it's good to know what you're dealing with. Getting the right label is not so important, but getting the right help, program, services is. If getting a dx of CP will get the school to line up PT, useful and appropriate PT, then I say go for it.

Sarahp,
Even an internet quack like me ain't gonna diagnose autism in an 8 month old with Ds who has had a stroke. I think both CP, to a lesser degree, and autism, a bit more so, may be diagnoses of exclusion. You rule out lots of other stuff and then see what you're left with and what evidence there is to support the diagnosis.
I was telling someone the other day that I thought 2 years old was probably too early to get a dual dx of Ds with autism. But, if you wanted to read up on that combo, I think two good links to start with are:

www.altonweb.com/cs/downsyndrome/autism.html

www.disabilitysolutions.org/news.htm
(scroll down to vol. 3, issue 5/6)


Regards,
Bob

[mommygwen]

I have one son with Down syndrome and one son with CP (severe spastic quad) .
CP covers a huge range; from mild skills impairment (like poor fine motor skills or awkward walking gait) to life threatening (irregular breathing).
A dual Dx can make more solutions available to you. For example if you are told his Dx od Down syndrome does'nt qualify him for Pysical therapy. A Dx of CP will almost always warrent Pysical therapy.

[jeannie]

My friend has a boy almost 5 with ds and cp. he gets botox shots in his legs to help with his stiffness. i will tell her about you. she is such an awsome person. she would be very helpful 2. she is a nurse.

take care,
paula

[Kristen]

You know, I have often wondered if Carter had CP because his legs were so stiff for so long. He seems to be doing a lot better now, but it took a long time to walk and fourpoint crawl. That he is doing better makes me think that it doesn't just go away and he doesn't have it, but I definately thought of it (and sometimes do with his speech seeming mroe slow than it should be), especially considering the circumstances surrounding his birth. Good luck to you!