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Post by nomad11692 on Oct 11, 2008 8:28:48 GMT -5
Alright, here's my attempt to be succinct- a really big challenge for me
Some of you may know (I have written about him before), my 3 year-old son has mild cerebral palsy and seizures. His leg muscles are weak. He wears little braces that surround his feet and come up a little bit past his ankles (they're called AFOs- ankle foot orthotics). On Wednesday, he got new AFOs to offer more support and control of his ankles. The doctor put them on, and my son, Cael, who normally walks very well, started walking with a noticeable limp and awkward foot placement. They doctor seemed surprised and of course, checked Cael's AFOs. Well, nothing was wrong with the AFOs. The doctor discovered that Cael actually has several different problems with his left leg. The ligaments around his knee are not tight enough, which allows his kneecap to slide. His tibula (lower leg bone) is slightly twisting as it grows, and his hip alignment is not correct. These things probably explain why Cael walked almost sideways when he first learned to walk and before he had AFOs. We have to go see another doctor this week. The doctor said the reason we just discovered this is because his old AFOs allowed his ankles and feet to compensate for these problems where as his new AFOs are more restrictive to ensure proper foot and ankle movement and alignment.
I know we are very lucky with my son's progress. So far, there is not apparent cognitive involvement. He has been through so much already, and I hate to drag him off to more appointments and tests. I just thought I would write. My family's response is "Well, it could be worse." I know it could, but somehow that answer does provide much comfort.
So much for being succinct
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Post by mrs"e" on Oct 11, 2008 9:11:50 GMT -5
I'm sorry. Not being able to fix our kid's boo-boo's is such a helpless feeling. But thankfully, medical science is at it's best, and on your side!
Hang in there, friend. With a wonderful, caring, and attentive mom like you, your son is in great hands!
Thank you so much for sharing this part of your life with us. Please, keep us updated on his progress.
-Elizabeth
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Post by dinara on Oct 11, 2008 11:24:31 GMT -5
When did you understand that your son had Cerebral palsy?When did the seizures start?My nephew is one and a half and he has been having seizures from the second day of his life.It sounds exactly the same.They started him up with a back brace.Even though he has not walked yet.His body goes weak at some points.He has difficulty holding up his head at times.
I feel your pain because i watch my nephew battle with his own body everyday.We take so many little things for grated.I will keep you and your son in my prayers.Keep us updated on his progress!
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Post by nomad11692 on Oct 11, 2008 14:57:33 GMT -5
When Cael was born he was not able to move any of his limbs. He had no muscle tone in his limbs. At six months of age, he started physical therapy, and they did an MRI which show a condition called, PVL- basically neurons in his brain were dead. PVL caused his cerebral palsy (CP). There are several different causes of CP. We were fortunate in that his seizures only started this past February. They have quickly progressed to where he is now completely unconscious during a seizure. It was very scary at first but I am started to relax about the seizures a little more. I'm sorry to hear about your nephew. Is he able to eat on his own and talk? Does he do physical therapy?
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Post by LPS NANA on Oct 11, 2008 16:37:07 GMT -5
I'm so sorry to hear about your son. I will keep your family in my thoughts and prayers.
My son was 7 yrs old when he was diagnosed with TYPE 1 diabetes. I was obviously alot younger then and I took this so very hard. He was in the hospital for 5 days and I was very devastated at first but by the time we got to take him home I realized that I was one of the lucky ones and that I could take my son home knowing that I could control his disease and that there were alot of children so much sicker than him and that may not have much chance of living ( we saw alot of kids with cancer). So this helped me alot. Please don't take this like I'm saying that what is going on with your son is a mild thing cuz I'm not I just wanted to share my experience with the devastation. Just try to keep you head up and stay strong.
Please give your son a big hug for me and I will be thinking about you guys.
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Post by mrsvalden on Oct 11, 2008 21:19:22 GMT -5
I'm sorry that your son (and you) have to go through this. I'm sure it must be incredibly hard to see your son having these issues. Feel free to talk anytime you want. We'll always be here to listen. My thoughts are with you, your son, and your whole family.
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Post by dinara on Oct 12, 2008 10:19:45 GMT -5
When Cael was born he was not able to move any of his limbs. He had no muscle tone in his limbs. At six months of age, he started physical therapy, and they did an MRI which show a condition called, PVL- basically neurons in his brain were dead. PVL caused his cerebral palsy (CP). There are several different causes of CP. We were fortunate in that his seizures only started this past February. They have quickly progressed to where he is now completely unconscious during a seizure. It was very scary at first but I am started to relax about the seizures a little more. I'm sorry to hear about your nephew. Is he able to eat on his own and talk? Does he do physical therapy? Sadly his progress is very slow.He can not sit up on his own.He does do physical therapy but i don't see it helping him.He makes baby sounds but does not say words.I personally believe my sister should go to the U.S.We are too behind here.He is a bad eater. My sister has to force him to eat.He is also on some very heavy medication that prevents seizures. |
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Post by nakisha on Oct 14, 2008 16:59:13 GMT -5
I'm so sorry to both of you (nomad, dinara). I can't even imagine what it must be like... seeing your kid (or nephew) struggle like that!!  What will they do now? Will it be a matter of surgery? Or are there other ways to correct all these problems? (hips, knees, ankles, ect...) I wish you all the very best...!! |
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Post by lpscollector4life on Oct 14, 2008 21:07:42 GMT -5
I am so sorry! I had a disease when I was 10, (almost 3 years ago) called Schlatters disease. (something like that) It meant I could do barely any excersise because my bones grew too fast and my muscle grew too slow. If I bounced/ jumped or even ran on my legs, the bones would rub against each other and scrape really bad with intense pain. I eventually had to get my bone cut with a saw in surgery. My cartilage and tendons and everything else besides bone grew late so it was kind of hard to walk- too hard. I was very weak and I know what it feels like to look at others able to live free and no one looks at you like you are a castout. Like you don't belong. I had to stay in a wheelchair so that really made me mad. Through the time, I have gotten closer with my relationship with Jesus and God which was my purpose for this tradedy. All though matters are hard, God is in control and there is a purpose. I feel bad for your son. I'll be praying! Keep your heads up!
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Post by nomad11692 on Oct 15, 2008 17:08:25 GMT -5
Thanks everyone for your kind comments.
LPS NANA: Thanks for sharing about your son. I know that in the greater scope of things, my son has been quite lucky. The doctors could not tell us how severe his disabilities would be when he was born, and the fact he is doing so well is a blessing. I was rather shocked this all transpired when he was getting new AFOs. I certainly was not expecting there to be more problems.
The good news is that the longer he uses these AFOs the more normal his walking is getting. In fact, he is currently in the backyard purposely throwing every ball he can find over the fence into the neighbor's yard. We are going to see an orthopedic soon. I have held off scheduling the appointment because I am waiting to hear if I got a job for which I interviewed. (I have been looking for a job for six weeks now). Talking with the doctor and his physical therapist, they seem to think the biggest issue is going to be the bone twisting as his leg could end up shorter than the other one. The ligaments may also be fixed with surgery. But if I've learned one thing through all this, it is that each doctor has his own way of treating. So, I won't really know anything more until we see the orthopedic. I think I have relaxed more about this. The best thing of all- he is adjusting, wearing the AFOs, and happy. Thanks everyone. Things can be so depressing and scary right now, and kind words from people I know only online is encouraging.
Oh- one more thing- this is kind of funny- Cael's teacher at school asked him if he was a boy or girl. He says, "No, I a dingo." Not sure where he got the dingo thing from. But he's been saying it for several weeks now.
Danielle
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