Hi, I have a son named Connor too that has mixed spastic quadraplegia. I had him diagnosed at 6mo of age. At that point we started therapy and havn't stopped since. You can contact the state, they have a program (here it's called Infants and Toddlers) that provides free therapy at the home. I would also get other therapy through your insurance. Connor has ot 2x a week, pt 2x a week, and an education teacher 1x week. Is Conner's severe? Can he eat by mouth? Just curious since they are close in age. My Connor is 19mo, he is a twin and they were born at just 27 weeks. His twin has no issues, other than being a little devil,lol. Good luck to you and it is nice to meet you.
This is a pretty good site to understand CP but it has a LOT of info...I'm sure your doctors will answer any questions you have as well, or you could do a search for more websites...there are a lot of them!
Welcome to my club. My son Seth has CP too.. He is about 26 months now and was diagnosed at 18 months. He was not a preemie and was developing normally until he was barely sitting unassited at 9 monhts (has very low tone in trunk) that we started investigating matters.
The good news is that it is not an "illness" Our kids will struggle to overcome (as much as possible) and learn to work with their motor and other issues but the CP will not make them sick or get worse perse. CP is a one time insult/injury to the brain so we are lucky in that respect compared to a more progressive disorder like a dystrophy or a cancer, etc.
I agree with using early intervention right away if you aren't already. Get him assessed and start your therapies. It is the best line of attack. Do you live in the US? If you do, every state should have early intervention (called Babies can't wait in Georgia).
Let me know how Connor is doing. Can he sit up unassisted or walk? How about feeding and cognitioon?
Hope I can be of help, sounds like i am just ahead of you in the journey.
Hi Connersmummy! Glad to have you on board with us
Good news- CP isn't an illness. It's a "non progressive" (which, in my opinion is SO misleading) condition. The brain injury is static, but the secondary effects are not. In my case I've already started the decline we all hear about, and I am 19 years old.
I am new at using the message board, so please be patient. I also have a little boy who has been diagnosed with spastic cerebral palsy. There is really NO support groups where I am from & the name of mothers with similiar children are so busy that they really don't have to time to talk to me on the phone let alone come see them or visit them.
My son was diagnosed when he was 5 months old by a CT Scan that showed he had a spot of calcification which is what a brain bleed looks like after it's been healed (like getting a scab on a cut). Because he was so young they couldn't really tell me anything else, the only response to any questions I had for them was "we can't tell you that, we don't know, it's a wait & see thing". My son is now 16 months old & he had his MRI done at 15 months (when they are to young, under 1 years old, the brain hasn't grown much to really tell them much) & the neurologist said he was spastic hemiplegia. He has been in Physio Therapy since he was 5 months old. I have SO many questions to ask other parents, but like I said they few names I was given, they were so busy themselves they really didn't have much time. I don't know anyone else who has CP or to get really narrowed down, spastic diplegia. I don't really know what you would consider mild spastic diplegia, etc.. Me & my husband have been totally all alone with this for the past say 11 months & it has been SO lonely & no one else really understands what we're going through. I really feel bad for you, it's a pain so undescribable that seems to never go away. If you or anyone else could share your symptoms, I would SO much appreciate it.
This is my first post on this site. I just found it today. I read your post and am terrified. What do you mean "the decline we all hear about"?????????? I have not heard anything about this! What are you talking about?
My son is almost 5 and he has CP but don't know what version, as I read these posts, I am very confused. He has had botox in each leg once, and has braces on both legs, and walks with a forearm crutch. His CP is from his waist down only. But, what "decline" are you referring to?
thanks in advance for getting back to me!
CP causes increased wear and tear on muscles, bones, joints, nerves, etc. As a result many of us get stiffer over time. The symptoms of CP can improve or worsen (or stay the same) over time. A lot of it depends on exercise and eating habits, weather and a lot of other outside factors. In my case my CP has been worsening since I was about 16, but it seems to have sped up in the last year and a half or so. Hope that helps!
The secondary effects are helped to a point by therapy even if you have a so-called decline and your muscles grow spastic, or you become chaotic in some way. (Cerebral palsy can sometimes cause chaos, which manifests itself as mental illness.)
The therapies most useful to me were and are cranial-sacral work, PT mantainence (ie. where a PT will stretch me out and do miofacial release to help my hip flexors and other muscles) as well as conventional PT. An OT is good for teaching a child how to cut paper or write in cursive or make better print letters or something, but real world solutions might be better. Just my somewhat biased opinion.
They can be helped to a point, but we will inevitably feel the affects of strain on our bodies at one point or another. I agree that therapy and exercise are of the utmost importance... keeping fit really does help!
hey connersmummy just a quick message my son is now 5 and he has mild form to they did serial casting to help with getting him flat and they did two rounds of botox and the second round they did casting with it.....there is a lot of time and pysio trough this but his gate is doing a little better but they now want to do a surgery called selective dorsal rhizotomy to releave some of the spasticity....but he is a very bright outgoing child and my best advice is to not stop him for doing things though because my little one has a lot of determination and will keep trying till he can..he does wear braces on both of his legs to get him flat and they do slow him down but only a little bit.....juat check out your options and go with what you feel is right...good luck...
My 4 1/2 year old son was just diagnosed with mild CP Spastic Diplegia. He was a 27 week preemie. His main problem is his gait. He walks on his toes, his left is the worst and points in a little bit. Dispite that he gets around very well. He is very smart but he is delayed in his gross motor skills & speech. He just started doing adaptive therapy & speech therapy at our school. We've now qualified for CCS (our state services) so will be seeking help from them too.
I also have a son with a diagnosis of mild spastic dyplegia. He was a 26 week preemie and is now 21 years old. He was diagnosed at about 18 months because I was concerned about the increased tone in his trunk - had to push his tummy to get him to bend to sit in the highchair. He's been in PT for most of his life. He, too, walked on his toes and his left leg is more affected than his right leg. He used a Kaye Posture walker with great success as a very small child and had AFO splints. He's always been a delightful and determined boy!
When he was almost 5 years old (1989), Dr. Gregory Nazar at Norton-Kosair Children's hospital in Louisville, KY did the selective dorsal rhizotomy on him, followed by a year of intense PT. 11 months post-op, he walked alone for the first time in his life. Talk about exciting!! This surgery was a huge benefit to Robby. One important note: if you're contemplating this surgery for your child, it's best if the child does not have any orthopedic surgery first. If you're told your child needs orthopedic surgery, see the pediatric neurosurgeon first.
Robby's teachers from preschool until about 4th grade were very creative in enlisting a special helper for Robby each week. The kids really wanted the job. There were cheers in the school gym when 1st grader Robby first walked alone and strangers stopped me in the grocery to tell me their child's excited report about Robby walking. Teachers can really make everything all right in the classrooms for our kids.
At times in elementary school, Robby used a cane. When he was a teen, his growth was such that his muscles couldn't stretch, his gait became crouched, and at age 15 he had a tendon lengthening in both legs. This was followed by 6 weeks in bilateral long-leg casts (bummer!), then knee immobilizers, then PT. Again, Robby got a good result after hard work in PT.
He sees a sports medicine doctor now that he's an adult and has PT once a week. He can do self directed PT at the same location any time he chooses to.
Robby speaks fluent German, is learning Chinese, has built 7 computers (from selecting and ordering parts to installation), and is in college.
At times it was a hassle to get to PT and our other son had times of feeling the burden of a little brother with physical problems, but all has been so worth it! It's okay to wish it would go away. Our older son is now 26 and is a very kind and thoughtful man, perhaps from dealing with his brother.
So there's the long-term picture, at least for 21+ years. Hope it gives you hope and some helpful information.
The intense PT was that Robby went 4 days a week, for 90 minutes each day and the PT was done by therapists who had been trained by the neurosurgeon's team in the specific exercises needed post rhizotomy. The PT was fun for Robby and he worked hard even though he was just 5 years old. He had PT at the Cerebral Palsy Kid's Center in Louisville, KY.
One thing we were told before the surgery is that much of the strength in Robby's legs was from "tone" and not real muscle strength. After the surgery, most of that tone would be gone, so his legs would be weak. That was true and that's why the strengthening exercises were so important. After surgery, Robby could tell the difference, too. He said he felt looser all over.
The other important thing we were told pre-op was that Robby's improvement would be one or two levels up from his pre-op abilities. Since he could already walk using a Kaye walker, we could expect he'd probably be able to eventually walk alone following the selective dorsal rhizotomy surgery. Even with continued PT, his gait is not perfect heel-toe yet, but it's much improved.
At the time he had his surgery (pre computers) there was a nationwide Rhizotomy Network of families, PTs, and surgeons. I have no idea if that is still going but you could do a search. For information specific to the exercises done in PT, you could likely contact the Kid's Center in Louisville.
Thanks Barbara. Wow, that is intense. Glad it worked out. We are interested in the rhizotomy surgery. I am surprised that we haven't heard of it until now. I will do some research. By the way our son Noah has spastic diplegia and gets PT 2xWeek and OT 1xWeek. He can take 20 steps unassisted in PT, but uses walker, etc. most of the time.
My son has spastic quadreplegic CP, he was officially diagnosed at 1 year, however the paediatrician suspected this was the case 4 months earlier and made if official at 1 year of age. There are a lot of websites out there and a lot of help if you know where to look. I live in Canada and here we have Early years centre throughout most of Ontario and probably all of Canada and they knew how to get me in touch with everything I needed. I also used the public Health Nurses they were fantasic in advocating for me. The doctors helped get therapies going. In the states I know it very different as to how you get these services but they are there for you. Your not alone. Get the therapies started as soon as possible it will give your boy the best chances good luck.
I have read this post....and it is so enlightening to find people experiencing the same thing as I...My son is 27 months, and he was just diagnosed with mixed spastic diplegia. And as happy as I am that we finally know what is wrong...it is still very heartbreaking to me. I can't help but wonder what I may have done wrong.. My son is Damian, and he doesn't walk or talk yet...He has been working with an early intervention program here on the island that we live on, but I don't believe that his therapies are often enough..Can I just ask you all, will my son ever learn to walk or speak....what are the chances he will be somewhat normal? I just see the sadness in his eyes when he is watching his younger brother, or cousins running around playing, and here he is sitting in the stroller. It breaks my heart...Is there any certain things that helped out to make your children walk...or does it just take time? I am so greatful for this site...and I don't know how I could process all of this without you all here...Thank you for your time...