Hello All,

My name is Ari and I'm the mum of Toby my gorgeous (almost 3 year old) son who has just been diagnosed with spastic diplegia.

I guess I'm here to see if anyone can give me any idea of what the future might bring and also to reassure others who are diagnosed at a very early stage that things may not be quite as bad as you think.

Toby was first taken to the doctors October last year (2006) and after what can only be described as the worst few weeks of my life their orignal diagnosis of Duchennes Muscular Dystrophy was wrong, after numerous blood tests and then finally an MRI scan on his brain and Spine and despite not finding any abnormalities they have told us that it is most likely that Toby has spastic diplegia.

He hit all his other milestones without much worry, but was slow to walk (although not outside normal age range) but it soon became obvious that all was not right, he was off balance and when walking he walks on the inside edge of his foot but in all other respects is a normal little boy. He laughs, talks, knows his colours and shape and can count, cries and paddies like a nrmal 3 year old does.;)

It's such a scary word (cerebral palsy/spastic), but we have to remind ourselves that he's the same boy he was last month or leven ast year and that he's had this all his life, we just didn't know it at the time.

Does anyone have a son/daughter with similar characteristics, who could perhaps shed light on how Toby might develop in the future?

Thanks
Ari and Tobes x x

Hi,
Welcome, I have a 3 year old son also with spastic diplegia. He can walk very short distances with a walker and his speech is quite good, and he throws normal 3 yo wobblies too!! If you want to get some idea there is the gross motor function classification system. It is a system that grades children on their physical ability. It won't give you all the answers but may be a jumping point for you. My son is on the border of level 2/3. It grades kids up to age 12 so you may be able to see how he may progress. Just search on the net and you should find it.
Just out of interest how is your sons concentration levels and processing skills? My sons physio said that a lot of spas diplegiacs have issues there and it is becoming evident that my son has. He has good intelligence but have noticed that he repeats things a lot and sometimes comprehension is not there. Also sometimes the gross motor planning can be an issue. We are trying to work through that.
Cheers, Kari

Hello Ari, Just want to welcome you aboard.
God bless you.,
Deborah

Hello Ari and Tobes,
Sounds like your son is doing really great to have learned to walk within the normal age range. I'd take that as a good sign. My son has spasitc diplegia too. They say it's a mild case as well, although your son seems to have learned things that took Noah a lot of therapy and hard work to learn.
As far as how he'll do in life, my PT says every child is different. Some depends on the quality of PT he gets and the home therapy program you set up for him. Surgeries may make a difference. A lot will depend on him and his own nature. How hard he wants to work at things, or if he's comfortable at whatever level he's at, etc. By the way, things you can do to throw him off balance actually help to increase his balance (PT can tell you more about this).
My PT says it's good to build as good of a base for the child as you can while they're young to help them as they get older (when growth brings other challenges).
Anyway, Noah is just 4 and the older folks may be of more help to you than I can about the future. Best of luck to you all!
nwmom

I don't know where to begin... I had a baby 14 years ago after 4 years of trying. It was a planned C-section, Katherine, my Daughter, didn't cry when she was born and was taken to ICU for Oxygen. We were told her level was low, I did not get to hold her or barely see her. My Husband went with her.I was heavily sedated for 2 days or so. Everything seemed more or less okay, she was taken off of Oxygen and we carried on with our Dream. Didn't look back. Nothing was said. Feeding was a problem. I found if I fed Kat and laid her down right away EVERYTHING would flow out her mouth. Thank God I always laid her on her side! I told her Doctor who said a flap on her stomach might not be completely closed, so I held her upright after each feeding for at least a half an hour. I also found her to be constipated allot. Doctor said suppositories. At 9 months she was evaluated for vision problems. When tired, she would fix her gaze UPWARDS, and lower her chin, to focus her gaze. They found no physical reason for this and said "lazy eyes", they may strengthen with time. Around 3 yrs. old, I was concerned about speech. Kat seemed to not pronuciate clearly. Her speech seemed slurred. We had basic hearing tests done and she was deemed clear. All this while she was somewhat, though not drasticly, delayed. She was always shaky on her feet. Bad balance. Fell down alot. Made me VERY nervous on playstructures and such.Took her to her Doctor when she was 4 regarding her slurred speech. He said it was likely due to being tongue-tied and offered to snip her tongue. We declined. At 5 we took her to Childrens Hospital of Eastern Ontario, concerned about her balance. The other Children had taken to calling her "Stumblina". We waited something like 6 months for this apt., the Doctor asked a few questions, watched her do a couple of physical things and said " She's no ballerina, but not so bad", all clear.

To shorten what could be a NOVEL, after this point, and over the next 6 years, we saw another 2 Neurologists, and 1 new Pediatrician (who WITHHELD MRI RESULTS showing Atrophy of the Vermis of the Cerebellum, with Enlarged Fissures because at that point, with no HARD signs at the age of 11, she feared my Daughters Symptoms were all in MY head.)

NOW, at 14, Katherine HAS some HARD signs they have been waitng for. She was just diagnosised with 15 degree functional Scoliosis, fallen arches, a ranking in the 5th percentile for understanding spoken paragraphs...AND , I beleive, she has a temperture regulation dysfunction, as well. We had NO idea Katherine had a problem of this kind so we treated her normal, as did the Schools. Part of my difficulty in getting a diagnosis was the Teachers. Earlier in the day, Kat functions better. It is about 3 or 4 that she wears out. They would rarely see it. Until Puberty hit. Then Katherine REALLY tired. She had a 20 min. walk to School, each way. I don't drive but would call Taxis whenever I could afford it. She would come in the door from School, drop to the floor, vomit, headache, confused and unable to talk. I would undress her, cool her off, and tell the doctors. They were, or SEEMED, perplexed. They saw it as a Headache disorder...NOW I think it was Heat Stroke! The first time it happened she was 5. Halloween, after Trick or Treating. I felt it was some kind of Excersisce Intolerance and FOUGHT to have her out of Gym, fearful of what could happen, we had NO idea why this was happening. They fought back. Grade 7 she was very weak, started passing out, had muscle twitches in her hand and numbness of her upper lip. ANYONE know if this might have been a seizure? I brought her to CHEO, who referred me back to the first Neurologist I saw. He pretty much kicked us out of his office saying, " there's NOTHING Neurological going on here!"...

Now I have a BETTER Doctor, who ordered the mRI that shows the damage. The Report notes this finding was made previously, BUT no one told us.

My Daughter and my Family has suffered for 14 years WAITING for a diagnosis. I thank GOD, we had a pool. Katherine spent morning to night in the pool. Just loved it. From 5 to 11. And Martial Arts were offered at our School, she was enrolled for 3 years.

I have been holding this in for YEARS and thank you all for being here.

Getting a CP diagnosis is upsetting at first, but don't be discouraged! Our beautiful son was born premature, and we found out he had CP when he was just under two. He's now fifteen and doing great! There have been struggles--Botox injections, casting and finally surgery on his hamstrings. But he has been an absolute joy to us all his life. He walks indoors unassisted and uses crutches for long distances and outside. He's also an excellent student, has tons of friends, does lots of activities in high school and has a volunteer job at the public library. It's looking like he'll be fine to learn to drive. We expect him to go to a good college, find an interesting career and hopefully have a wife and kids someday. He's had many advantages from his CP, despite the disadvantages. He carries himself with confidence and so has never been teased. A number of times he's said to me, "If I could be magically cured of my CP, I don't think I'd choose to do it. It might sound funny to someone else, but it's given me a lot. And it's part of who I am." Just accept and love your kid and it will give him the power to love himself. That will help him to open the doors he needs to open. Best of luck to your whole family!

Hi Ari and Toby! My daughter ,,20 yrsold, is very severe compared to your son. She has spastic QUADriplegia, so all four limbs are affected. I just wanted to comment that i can't count how many times I have said"if only she could use her hands and arms!" The world is a different place now and if you are a paraplegic, you can still do just about anything....so I think that it is the same for your son.Even though it is cerebral palsy. His world is wide open to him and anything he wants to do. It is wonderful that he is walking. He will be independent as an adult because even if he can't walk far, he will be able to get around his home. He will be able to get out of bed, walk to the bathroom or get out of a burning house!

He will be able to drive, dress himself, feed himself, cook, shave, write with a pencil,push the buttons on a phone, the list is endless. The difference is night and day between a person with two limbs that are weak(or uncontrollable)and four limbs .

I don't mean to belittle your grief in the least....We love our kids. But we do grieve for what they can't have. Your pain in this is no less than mine. I just want to point out how far your son will get because he has two limbs involved and is walking already! that is so great! He will be able to do just about anything in the world, that he wants. He will be able to lead a independant life as an adult.

Exciting things lay ahead for Toby! Enjoy him, they grow so very fast!!!:angel: