March is Cerebral Palsy Awareness Month

March is cerebral palsy awareness month. For us, we are very aware of cerebral palsy everyday. So now we get to share a little with YOU about Cerebral Palsy and the very thing that makes our life different... but happy.

Tyler has cerebral palsy and got the diagnosis around his 2nd birthday. I had asked since he was born if his pediatrician thought he had "IT." I really thought that it would make a difference, but it didn't. I thought having Cerebral palsy would change who he was, and it didn't. He was still a baby, he was a still a boy, he was still a miracle. Nothing would change ANY of those things.

When he didn't walk on his own, but was SO close and so active, we were sitting in the neurologist office. We were discussing Ty's need for a EEG and his sleeping issues. Dr. Bernes said " Well you know he has Cerebral Palsy, right...." The conversation continued, but I sat there stunned. No one had ever put that on paper or said it to my face.

From that day forward, it was official, Tyler had Cerebral palsy. And it didn't change anything.

Today, Tyler is Tyler. He is who he is. And he just happens to have Cerebral Palsy. He is very funny, smart, sassy and a spit fire. He is also very active. He loves to ride bikes, run, chase dogs, play with kids and throw rocks. He loves the park, McDonald's ( if it has a play place) and to play the ipad and watch movies. He also happens to have Cerebral Palsy. Which means he is also courageous, brave and stubborn.


There is no cure for cerebral palsy. There is no remission. There is nothing. Just treatment. And treatment doesn't cure the condition that is extremely painful and does a huge mean number on these poor kids body.

During the month of March I hope to share the message of HOPE, but of faith, courage and love. But most of all raise awareness to what it does to these kiddo's and how we can help those who are caregivers of these kiddo's. It takes a lot of work to parent the most courageous of heroes.

Stay tuned throughout the month to learn more and to hear about others and their fight to live with Cerebral Palsy.

So here is the FIRST fact:

Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood.Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. 

Cerebral Palsy 101

My cousin Chelsie did a FAQ/101 blog on her little girls Cancer so after this most recent adventure with Cerebral Palsy I thought I would offer a little 101 on Ty and his Cerebral Palsy.

First and for most, Cerebral Palsy is a non degenerative disease or rather condition. Meaning once the initial " damage" is done it is done. However, it may seem to get worse as they get older because of the changing of their muscles and growing. Also, every child with cerebral palsy is different. A mild diagnosis for one may include a talking but not walking child. Or one walking with assistance. OR it might show little to no impairment to the naked eye, while someone like Ty is visible. ( Ty does have a MILD diagnosis)

When does it occur? Usually Cerebral palsy happens sometime right before birth or shortly after. For some it is a "medical mistake" for others it isn't. I am not sure what you want to classify Tyler's as but his occurred about 24-36 hours after birth when he developed a brain bleed.( His was a grade 3 and 4. Grade 3 touch and damage some brain, grade 4 kills brain tissue) This bleed is when the damaged occurred.

Is it Curable? No it is not. Again the damage is irreversible and therefore there is nothing that can be done to change it. There are things that can be done as management of the effects of it but he will always have it.

When is it diagnosed? That really depends on the child, the doctor and the team of doctors involved in the care. Ty had an aggressive team of therapists to start but was not given a diagnosis for CP till he was 2.5. Some have received a CP diagnosis when leaving the NICU others before they turn one.

What Type of diagnosis does he have? Tyler has spastic diplegia cerebral palsy. Though he doesn't fit in that category completely he does have that diagnosis. For example, his legs are tight and his ankles are tight but his arms are tight as well. BUT they are functional. He can't touch his shoulders or straighten his arms out completely BUT he does have full function of his hands and doesn't keep his hands fisted ( which is common with children with spastic muscles) Therefore putting him in the category of hemiplegia is incorrect.

Spastic means he is TIGHT. Very TIGHT. For example, Tyler cannot sit Indian style because his body doesn't let him bend that way. When you change his diaper and he is upset he is VERY stiff and it is hard to get him to bend. He walks stiffly. So some muscles are working way more than its fair share. This type of muscle tone causes other problems. Hip dislocations and scoliosis are common as is bone deformation. Tyler does have bone deformation in his feet.

Ty will have skeletal issues with his Cerebral Palsy. His feet right now are the most obvious. They are somewhat deformed. His feet are also small. I haven't had to buy new shoes because he has outgrown them in over a year. His legs are smaller and he is overall SMALLER than a typical almost 5 year old.

What treatments will we be doing? Ty has been getting physical therapy once a week for several years. We drive to Salt Lake to get it at Shriner's because a typical insurance plan only covers for 12 visits a year and sometimes they won't cover for rehabilitation. In other words, they know it won't be cured so they don't want to pay for it.

Tyler also gets speech and generally he gets occupational therapy. These basically help him with day to day living. They make him "functional."

More intense treatments include Botox, phenol and possibly a Rhizotomy as he gets older.

With his phenol he gets serial casting. Serial casting is when he gets a really good stretch with casts on that gradually gets better and better with weekly cast changes. Last time it was on for a month. Phenol only lasts six months.

Ty also takes a nightly muscle relaxer called Baclofen.

Ty won't be able to run and play sports like most kids. But he does do really well and finds ways to do what he wants to do. He is very good at adapting so he can do what he wants to do.

Support is HUGE. We need the support and want support. We are often over whelmed and we would love to be able to send him to a sitter or go out but finding a sitter for him is hard. We are thankful for those who do help us.

Please, we would love to answer any questions you have regarding Tyler, his care and how he functions. He is a great kid and we are more than happy to share!

Baclofen

There are all kinds of different treatments that are used in people with CP. All CP kids are not created equal. So what will work for one might not work for the others. ( Like most chronic conditions) Ty had only done botox until we moved to Utah. Then we did phenol and it worked wonders. Bu it only works for a certain amount of time.

Phenol can only be done every six months. It is done under sedation and as it gets closer to the six months the effects of the medicine is gone and his muscle tone returns with a vengeance.

So what happens when it is gone? Imagine having a sore knee. It hurts so bad when you do certain activites. You stop doing them because of that pain. Then they fix it and you can go back to doing what you had done before. Then as time goes on that pain returns.

That is like Ty and his CP. It is always there but the shots help the pain and stiffness go away. Then as they start to wear off the pain comes back.

This makes him CRABBY. Like Super crabby. He falls more and things get WAY more tragic than they were a week ago. He hits his head more. He won't eat and the already way bad sleeping is even worse. He is up super early making the already tired kid even more crabby when it comes to falling.

After a week of non stop crabby pants we decided to make sure it wasn't his ears and went to the pediatricians and got a clean bill of health. She then suggested just MAYBE, JUST maybe it is his CP and that his muscles hurt at night.

Dallas and I had talked about it and Dallas had suggested that maybe he was more frustrated by his muscles and his inability to move easily so we went with both suggestions and called his CP doc. She called in a script for Bacolofen.

I have been weary to try it but thought heck, it can't hurt right? And hurt it DID NOT! It was hard getting a pill down him the first night. He cried and I had to force it down. The next try we just put it in the straw of his drink and it was fine. Last night I tried a bite of Ice cream and it worked like a charm.

Not only did he sleep great but he slept in his own bed.

He slept through the night.

I checked on him a LOT. I hadn't heard a word and was a little nervous. But he did sleep in his own bed.

Day 4 and he has slept AMAZING. I think we might just have to keep it up.

Happy Birthday... Just kidding - Actually shriners CP clinic

Shriner's clinic was today. I have not ever been through the whole CP clinic meaning we see EVERYONE and their dog. But it was nice to get some good information and see Tyler's team of docs working, whispering, comparing and the ultimately turning to me and saying OK mom... give us your thoughts.

We have had a soft diagnosis for Cerebral Palsy for a few years now. Obviously he has cerebral palsy but we have not really had anyone talk to us about it. There are a million different " kinds" ( OK not really a million but more than one) and sometimes the more you know of the kind you have the better you can control, maintain and rehabilitate. Because we were not born in Arizona we didn't have the follow up program there with a developmental pediatrician and a few other docs that seemed to diagnosis a little earlier than we got. And being that we were born in Utah we were no longer eligible for neonatal follow up.

While I don't think a earlier diagnosis would have mattered getting information NOW and finding more and more things to benefit Tyler is what we need to do. At our appointment I had 3 docs at my disposal to ask as many questions as I could think of right then.

At the Clinic we see a orthopedic doc. We saw a resident first and he came in and nicely tried to get Tyler to coperate. He was looking to see just what muscles in his calfs and hamstrings are misfiring and if there is anything we can do or need to do soon on his orthopedic problem on his feet and toes.

It seems that Ty has more of a problem in his Gastroc muscles in his legs. Once pressure is relieeved his movement is less impaired. Of course taking away that muscle is not possible we need to find ways to lessen the spasticity of it. We have been doing that with Botox and with Therapy and stretching at home.

Orthopedics are looking at just having him wear his SMO's for awhile and not the AFO part of his braces in hopes of keeping him mobile and not impairing his mobility.

As a finally suggestion orthopedics is looking at doing a gait study to see what input we can get from his muscles and movement to better improve his gait. This won't happen for a few more months as they want to see if he can "age" a little more cognitively so he will follow directions a little better along with not getting so upset when they touch him.

Our rehab doc came in with orthopedics and we talked with her a little bit. Dr. Gooch is a little cold at first but she came in and I was able to talk to her a little bit and she provided a great deal of insight into Tyler and cerebral palsy in general ( at lest HIS type)

So Ty is considered having Spastic Diplegia Cerebral palsy. It is most commonly found in babies with PVL or brain damage caused at birth ( right before birth, or from a oxygen deprivation at some point in the birthing process) Ty has PVL and we have known about it since he was in the NICU. Some neonatologist refer to it at "cystic changes" in the brain. They showed up with his brain ultrasounds after his grade 3 and 4 IVH "resolved." It is usually a precursor to Cerebral palsy. Also this type of damage, Tyler is at risk for seizures. If he can make it to age 5 without one we are looking at a relatively LARGE breathe of fresh air.

Dr. Gooch is impressed with his Botox but they are noticing that at the end of his cycle he is pretty tight. Between her and ortho they would like a few sessions of physical therapy, possible round of botox and in December we are looking at being admitted to Shriner's and Phenyl injections in his gastroc muscles. Last year they were looking at doing a phenyl block but decided to do botox instead. This time they want it in his leg muscles ( which makes me much happier) and we are hoping it works better.

They decided to invite in Dr. Samson Fang. While I know lots that love her she kinda rubbed me the wrong way. I kind of felt like I was being talked down to yet I already had all the therapies set up, the docs we see etc. So all the info that she offered was already done. Minus she did offer to give me the name of a social worker for medicaid D.

Dr. Gooch and Dr. Carol got us on the therapy list up at Shriner's, so although it is a trek to get there it does give us PT, OT and Speech. That makes me feel just a little bit better. If we do get medicaid D we can get some of that therapy a little closer to home.

We were able to get an appointment with Orthotics and our evaluations are all set up.

I am so thankful for Shriner's and for those that donate to the wonderful hospitals and care they give. Not many places are free and that the medical care is above and beyond anything we have ever experienced. What great people there.

It was a great consult. I didn't leave upset, angry or frustrated. I felt I was talked to, informed and most of all that they cared about Tyler and his care.