Anyone with mild CP out there?

lovethattink

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My son was diagnosed last week with Mild Cerebral Palsy. I don't know much about CP and never heard of mild cp. Are there any good links out there to learn more?

This diagnosis did answer alot of questions: Why he drags his feet when he's tired, why he has trouble with motor coordination, why he's clumsy and has so many accidents.

Apparently the brain damage is on the left hemisphere of the brain and was caused either when I had eclampsia during pregnancy or Rh factor, during an asthma attack where he turned cyanotic (18 months), or when he had an anaphylactic reaction to a balloon (2 years).
 
lovethattink said:
Why he drags his feet when he's tired, why he has trouble with motor coordination, why he's clumsy and has so many accidents.
In the way past, most kids with those types of symptoms probably never got diagnosed with CP (cerebral palsy) and there are probably still quite a few kids with mild CP who are never diagnosed. They were/are just the clumsy, accident prone kids who are never going to be stars of the football team. Kids with mild CP usually get Occupational and Physical Therapy to help them learn to work with whatever problems they have, stretch tight muscles and strengthen weak ones. For small children, a lot of the therapy is games or play done in specific ways.

There are no specific tests that 'prove' CP. It's more of a 'rule out other things and if nothing else is proved and the symptoms fit, call it CP'.
Mild just refers to how much involvement there seems to be. (Involvement means how much of the body is affected and how severly it is affected). The less involved someone is, the less likely they are to be diagnosed at all and more likely to be diagnosed later in life.

Some children are known to be at higher risk of having CP - infants with low birth weight, prematurity or multiple births (twins, triplets, etc), certain maternal problems during the pregnancy. In those cases, the doctor may be looking more for signs of CP than they would be otherwise.

My youngest DD was at hight risk of CP because of low birth weight (although she was overdue, not premature) and problems I had during the pregnancy. She was seen by a neonatologist (specialist in newborn care) in the hospital, who didn't find anything specific wrong and turned over care to our pediatrician.
My DD was pretty much able to do everything on schedule - rolling over, sitting up, etc. until she got to the point of walking, which she was not able to do at her 18 month check up. At that point, the doctor wasn't worried and didn't want to do anything - "some babies don't walk until after 18 months."
I had had suspicions before that which I had mentioned to him at each visit. Although she was doing what she was supposed to be doing on the correct schedule, she was NOT doing anything well - like she could get herself to sitting, but was not stable and fell over pretty easily.
(I was working as a Public Health Nurse, visiting babies that were at hight risk for problems and doing basic developmental screening tests). One of my 'ah-ha' moments was actually at WDW, when DD was 11 months old. They had different strollers at that time; one day we decided to rent one instead of taking our own stroller. DD could not sit up in the WDW stroller while it was moving because she didn't have enough support. We ended up ditching the stroller and using our soft carrier for her instead. That was when I really knew something was wrong. One of the other things that led us to that conclusion was that we had lots of people looking at her whenever we slowed down on our trip. (She was a pretty baby with big brown eyes and dimples, very social and engaging). Anyway, quite a few people guessed her correct age (or a bit older) and asked if she had been premature because she was still so tiny. There is nothing like a lot of people saying you have a cute baby, but...... to make you take a good look at your baby.
The doctor pooh-poohed my concerns at her 1 year exam, just like he had before (he actually said I was 'looking for problems' because of what I did for my job). At 18 months, I demanded a referral to a neurologist (we had an HMO and I could not take DD to see one without a referral). The neurologist spent about 3 minutes looking at my DD before she pronounced DD had CP.
My DD's CP is considered moderate to severe (more on the severe end of the scale). Her actual type of CP is considered "mixed" because she has elements of spasticity (tightness of the muscles), hypotonia (muscles that are too floppy), ataxia (problems with depth perception and balance), and dyskinetic movements (some of her muscles uncontrollably move in a writhing motion). She is not able to talk, but understands well. She was able to walk with a walker and even with arm crutches for very short distances when she was very small. Once she got taller, her center of gravity changed and it got a lot harder for her to stay balanced enough to walk. As a result, she stopped using a walker.
She is a good example of moderate to severe CP. As I already mentioned, many people with mild CP will have very mild symptoms.

Here are some good websites:
Some (but definately not all) people with CP may have some learning disabilities or special educational needs because of their CP. In general, the more involved someone is, the more likely the are to have other problems. There are always exceptions though. One of the young ladies in my DD's dance class has more severe CP than my DD has, so you might expect severe learning problems, but she was on the honor roll thru high school.

Many people with mild CP don't have special needs other than related to movement - in fact, my DD's first Orthopedic doctor had gotten into orthopedics because he has mild CP that affected one side of his body. As a child, he had surgery to the leg on that side and decided he wanted to help other kids with CP.

Anyway, this is very long and may be a lot more than you need right now.
Just finishing with a bunch of :grouphug: :grouphug:
 
Thanks so much for the reply and the links. He is 12 years old and since 2nd grade I've been saying something just isn't right. His teachers were convinced it's laziness. So I pushed him harder. He took Tae Kwon Do from Kindergarten til 3rd grade when he tore his achilles tendon. I think that may have help the muscle coordination and it certainly helped his asthma. At age 10 he became a junior lifeguard, where on the 3rd day, he broke his foot in four places while going to just sit down. Since then, he hasn't been actively participating in any sports and I see his asthma worse. His handwriting is atrocious. He just doesn't have the fine motor coordination to control a pencil. Poor kid has had to re-write so many work assignments, and here we find out it wasn't laziness.
 
My ds11 has mild cp that affects the right side of his body, he was diagnosed just before his first birthday. He had seizures two weeks after he was born during an eye surgery to remove cataracts he was born with and ended up in the PICU for the first month of his life. We thought it was kind of weird that his muscles were very tight, and he couldn't sit up yet but thought it was because of his loss of vision.

Ds drags his right foot and has to wear an AFO, a kind of brace that helps keep his leg straight and that has helped him a lot in doing things. We see a terrific DR at the local Shriners hospital and don't have to pay for any of their services. Also we finally got a Convaid chair for him to use mainly for trips that involve a lot of walking like WDW and the Zoo because he tires out pretty quickly. I'm glad you finally got a diagnosis it's probably a big relief to you and your ds to know that he isn't just lazy. Now with the right help he will really soar.
 
First being diagnosed at 12 is pretty mild CP, so that is good. Having that diagnosis must be a shock, but also a big relief.
One of the things his diagnosis will get him is some assistance at school - like, since his handwriting is attrocious, he could have an educational plan that requires he be able to use a laptop and type his notes and work assignments.
You might want to especially check out the link to the PACER organization on the other post. PACER is based in Minnesota, but is a resource center for the whole US. They have links to parent advocates in different states/regions that might be helpful to you.
 
Hi there.

Getting a cp diagnosis can be very overwhelming. The more you know, the easier it is to accept and move forward. I think you're doing the right thing by seeking out information and advice from others who've been through and who are going through the same thing.

Sue gave you excellent advice. I would like to add one more website to her list of great resources. www.kid-power.org
That was the first website I visited shortly after my son was diagnosed with cerebral palsy 6 1/2 years ago.

My son has moderate cp. He was diagnosed at 9 months old, which is really early. My little man was really little at birth. He was born 2 1/2 months early and at his smallest he was a mere 3 lbs 5 ounces. He was already at high risk for having cerebral palsy, so it shouldn't have been such a big shock when he was diagnosed..... but it was a huge shock for us. It took us several weeks to come to terms with the gravity of the situation.

Now my little man is 7 years old. He is hypotonic quadrapelia.... meaning he has low tone affecting his entire body. He uses a gait trainer (walker)... but for the most part he uses his wheelchair. It's really difficult keeping balance using a walker in public when people accidentally bump into him.

Cerebral palsy is an umbrella term used to categorize a neurological disorder. No two kids with cerebral palsy have exactly the same problems. You may see a delay in your son's fine motor skills, such as handwriting. An occupational therapist can help with that. Gross motor delays affect things like walking and running. That is where a physical therapist comes in. The school district should be able to help, but many people choose private therapists.

Good luck to you. Sorry if I've rambled on......
Trisha
 
MightyMom said:
Hi there.

Getting a cp diagnosis can be very overwhelming. The more you know, the easier it is to accept and move forward. I think you're doing the right thing by seeking out information and advice from others who've been through and who are going through the same thing.

Sue gave you excellent advice. I would like to add one more website to her list of great resources. www.kid-power.org
That was the first website I visited shortly after my son was diagnosed with <a style='text-decoration: none; border-bottom: 3px double;' href="http://www.qklinkserver.com/lm/rtl3.asp?si=92&k=cerebral%20palsy&st=1" onmouseover="window.status='Search for: cerebral palsy'; self.ql_skeyphrase='cerebral%20palsy'; if(window.event) self.ql_sevent=window.event.srcElement; self.ql_timeout = setTimeout('ql_doMouseOver(1)', 1000); self.ql_isOverLink=true; return true;" onclick="if(self.ql_timeout) clearTimeout(self.ql_timeout); self.ql_isOverTip = false; ql_closeiframe(); self.ql_skeyphrase='cerebral%20palsy'; window.status='Search for: cerebral palsy';return true;" onmouseout="window.status=''; if(self.ql_timeout) clearTimeout(self.ql_timeout); self.ql_isOverTip = false; setTimeout('ql_closeiframe()', 1500); ">cerebral palsy</a> 6 1/2 years ago.

My son has moderate cp. He was diagnosed at 9 months old, which is really early. My little man was really little at birth. He was born 2 1/2 months early and at his smallest he was a mere 3 lbs 5 ounces. He was already at high risk for having cerebral palsy, so it shouldn't have been such a big shock when he was diagnosed..... but it was a huge shock for us. It took us several weeks to come to terms with the gravity of the situation.

Now my little man is 7 years old. He is hypotonic quadrapelia.... meaning he has low tone affecting his entire body. He uses a gait trainer (walker)... but for the most part he uses his wheelchair. It's really difficult keeping balance using a walker in public when people accidentally bump into him.

Cerebral palsy is an umbrella term used to categorize a neurological disorder. No two kids with cerebral palsy have exactly the same problems. You may see a delay in your son's fine motor skills, such as handwriting. An occupational therapist can help with that. Gross motor delays affect things like walking and running. That is where a physical therapist comes in. The school district should be able to help, but many people choose private therapists.

Good luck to you. Sorry if I've rambled on......
Trisha

Trisha-
I just had to reply to your reply! My son was also diagnosed at 9 months (his CP is a result of oxygen deprivation during his birth) we also should have expected it but were shocked. Anyway, my son is now 6 and he also has spastic quadrepligia. Duncan also uses a gait trainer and walker at school but a wheelchair most of the time in public because he has such poor balance. Anway, I thought it was neat to hear of our son's similarities!

Misty
 
My 20 yr. old daughter has moderate-severe CP, spastic quad., so being diagnosed as mild is truly a blessing, even though I know it doesn't feel that way for you. None of us want our children to be afflicted with anything but if they are pray it's mild.

My 12 yr. old son is colorblind and even though it's nothing compared to what my daughter lives with, it still breaks this mothers heart knowing his world is all brown.

If I can help you with anything at all please let me know. Your son sounds like a great kid and he is able to do so much and enjoy life.
 
Thanks for the kind words and reassurances.

The neuro had suggested I get him New Balance sneakers. I'm not sure if it's placebo effect or if they really work, but he is NOT dragging his feet. He says they are very comfortable, but he said the shoes don't let him drag them. He wore them when we went to Disney on Thursday, Saturday and Sunday. He kept remarking how comfortable they are.

It was also recommended that he find a fat writing instrument for school. I found several fat ones, but had to call the manufacturers about the erasers due to his latex allergy. We found that the rose art fat pencils (mechanical) are fine, and so is the PhD 3 in one. He's been using those, and his hand doesn't cramp/spas as quickly while writing. I so wish we would have known this years ago. Every night homework was a disaster because he kept crying his hand hurt. Dh and I pushed him hard because we thought he was just lazy. Now we're carrying around guilt from that.

My son said he actually feels relieved to know why he has been so clumsy and lacked balance all these years. He says he knew it wasn't just laziness, because no matter how hard he tried to do some things, he just couldn't.
 
Try not to feel so guilty for pushing him when he was younger. You didn't know and since the Dr.'s didn't recognize the symptoms either it is understood why you may think he was 'lazy'.

Now you and he know and things should be much better from now on. You are blessed that he has a mild case. :)

That's great that you found things to help him, pencils, shoes etc.
Interesting about the shoes. Never heard of NB helping their gate. I'll have to pass this along to others whose child is mobile.

Take care
 












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