Our 1 year old was just diagnosed with Cerebral Palsy

Dorothea - posted on 03/15/2011

Dear K.

Our stories sound very similar. Mike is 6 now, but I remember the first time I heard the words Cerebral Palsy.

Mike started seeing a Physical Medicine doctor at Nation Wide Children's Hospital in Columbus Ohio when he turned two. We started Baclophin (a muscle relaxer), and about a yr. later we started botox injections. For the first week or so the Baclophen was difficult to give, but then he got used to it, and took it easily.

As for the getting around, when out in public I don't have any suggestions. Maybe a wagon where he can lay out when he wants or sit up when he wants? What about a baby walker to use in the house? We did that with Mike and he LOVED it.

Good luck!

Dorothea

Marianne - posted on 03/27/2009

Hi Betty,

 I wrote on the board already and you can read that. My son was born at 26 weeks and that night his lung hemorrhaged and he almost died at that point. We had him baptized and he made it through the night and a few days later he had a brain bleed.....He started having seizure at age 4 and continued for a few years on medication. He was seizure free for about 7 years and now at 16 he had two of them this past August and the later in august again. i came home and found him unconscious on the floor. It was scary the second one he hit the stove going down and ripped up his face and ahd a huge black eye the next day. The doctors talked about botox and all that but none of themeds were ever given. Lots of OT and Pt and early intervention at age 3. He's doing miraculously well as he was a true miracle.  he is in high school and I think that the main problems are his learning difficulties. It's sad because he knows he can't compete with the guys his age in basketball and all he wanted was  to make it to the NBa. I told him go for it keep practicing it's just alot harder for you as his right side is very tight. He still cannot extend his arm out stretched.  I take him to DuPont hospital because they have orthopedics that specialize with kids with CP. They are wonderful.................I see Dr. Miller and he's awesome. he may need hamstring surgery which he has said he will probably need in his teen years. He is very tight. But, he's my miracle and he's alive...............I would love chatting with all of you. It's great to be able to talk and even help those who are going through the same things. Don't believe all what the doctors said. I started taking him to DuPont at age 2 1/2. He was just starting to walk. We did go to Childrens before that. When the doctor walked in he couldn't believe waht he saw after  he read his chart. He expected to see someone who was severly retarted or wheel chair bound or both. he said to me "this is a true miracle." Keep in touch. And anyone else who reads this and has questions please don't hesitate to talk to me. My name is Marianne and I am in NJ

Marianne - posted on 03/27/2009

Quoting Betty:

My son was born with a severe bleed on his brain.  He has spastic quadriplegia, cerebral palsy, and a seizure disorder. I also work with individuals with Developmental Disabilities.  He too does the stiffening up...especially when he's cold.  (Or mad at me!!! :P)  Therapy is always a good way to go first, and the therapists will teach you how to do the stretches at home.  I do not recommend muscle relaxers, it's a medicational fix, further more, most muscle relaxers are sedatives, which will impair his development.  A recent visit to and orthopaedic, he told me to look into a medication called Baclofan (sp?) for his spasticity.  I haven't done so yet, but will let you know when I find out.  Supposedly, they can order the baclofan in a pump form, much like insulin.  Good luck!

Marianne - posted on 03/27/2009

Hi I have a son who also was born at 26 weeks. He weighed 2lbs 5 oz. His lung hemmorraged and after a few days they gave him steriods to develope his lungs and he had a brain bleed. Your story sounds alot like mine. He was in the nicu for 3 1/2 months and my first appointment with the neurologist he said "he is toned like that of a baby with CP". They don't like to diagnose them until about age 2 because some preemies are very high toned because they are picked and proded so much in the hospital and like you they said they would see how he developed.  He didn't walk until he was 2 1/2 and wasn't sitting at his first birthday.  He is now 16 and he walks runs plays basketball. Most of the problems are with his right side (leg and arm) and has had surgery on his right leg to help him not toe walk.....He may need surgery on his ham strings in the near future. He has had occupational and physical therapy alot in those 16 years. Is you son in early intervention? They are great.  Also I went to childrens hospital for 2 years and then my niece told me about Dupont hospital in Delaware where they have orthopedics that deal especially with kids with CP. We see Dr. Miller and he is wonderful............

 when I first heard the word CP I was devistated as you were. but, get the ot and pt, it is very important......I am glad you are waiting on the valium because it's a drug. Massage his legs and arms and stretch them and all that. We have alot in common. My name is Marianne and I live in NJ. I hope to chat with you again.

 I feel for you and know what you are going through.............Keep the faith.

Sandra - posted on 03/27/2009

No logro que mi hijo Octavio, de diez años y diagnosticado  trastorno distonico diskinetico, con retraso cognitivo, suba de peso. Actualmente pesa alrededor de 23 Kg.  No tiene daño cerebral relacionado con esto, y su hipofisis funciona. Es habitual que suceda esto? Agradecere su respuesta, tanto en Español como en Ingles. Thanks

Jennifer - posted on 03/27/2009

Hi, My son was born at 32 weeks many complications - emergency c-section and was recently diagnosed with mild CP.. it comes in varying forms.. He is now turning three. He didn't walk til 26 mo. and missed all of his mile stones.. but I have to tell you he is turning three this week and doing amazingly.. he has had ot/pt & speech since birth - more vigourously since age 16 mo. he is starting a speciall ed preschool and therapists are convinced he will be caught up for kindergarden. so i am saying - although very sad to hear.. don't give up and know many child with this diagnosis grow up to be productive adults.. my neighbor is 39 years old -also has CP - she works for CNN and has 3 beautiful little kids.. jenn

Shireen - posted on 03/27/2009

My 14 month old has athetoid CP and started physio therapy since the age of 6months. She had Neonatl Jaundice and the value was extremely high affecting the brain causing the CP. The therapy has been a big help and improvements could be seen since the first week. Quadraplegia as well, both arms and legs. Neck still floppy but keeping it up for moments at a time. Speech therapy as well was recommended because the tongue movements not normal. Baclofen and valium prescribed. Baclofen helped in the beginning and results could be seen immediately. Valium not so effective. Stiffness almost gone completly. She is not sitting , crawling or walking yet but stands between my legs and she takes steps when u hold in a walking position. We are waiting for her special stroller , waiting list is long but will get it free from our state hospital. We see the PT once a month cos most of the therapy is done at home. Lamis hates to lay on her tummy but got her the big exercise ball to roll her on. She babbles and understands when we talk to her and laughs as well when daddy plays with her. I am shocked bout the Botox , neva knew that could be done. They are our diamond.

Jennifer - posted on 03/26/2009

My 12 year old Christopher was diagnosed @ 4mos after an extremely difficult birth but I wasn't told about the diagnosis til age 2 yrs. Chris has the opposite, poor muscle tone which causes its own set of challenges but he does have stiffness in his leg muscles, particularly his thigh and knee area, making some of his mobility an issue. Do you have a rehabilitation neurologist anywhere near you? I am in Goldsboro,NC and go to Chapel Hill to see one. They are really good with physical/occupational therapy (PT and OT) and should be of help with adaptive device issues. Is there any kind of early childhood development program through your local health dept? There is here and they could possibly assess and suggest/assist with things that would help your son. We went through them and Chris went to the community developmental school for preschool and they were of tremendous help. He actually transitioned out and is in community public school since kindergarten. There are varying degrees of cerebral palsy as I have learned over the years. I would have been glad to have had this means of support myself long ago. Hope any of this helps...Jennifer

Jenine - posted on 03/26/2009

Hi! I know how difficult this time must be for you and your family. My son was 9 weeks early and weighed 2 lbs 12 oz at birth. He was in the hospital for 9 weeks. During that period, he had several close calls. He too should some brain bleeding, but they could not tell us what the outcome would be. At 6 months, when Anthony started missing his developmental milestones by a lot, his pediatrician sent him for in depth evaluations. It took another year before he was offically diagnosed with CP in all four quadrants. From his waist up, he has hypotonic CP. From his waist down, he has hypertonic CP. Each has its own plusses, minuses and treatments. Hypotonic in some aspects is easiest. With repetitive exercise, you can strengthen the muscles and increase the muscle tone. So, with a lot of effort, the effects can be minimized. Hypertonic or spastic CP is much more difficult. For years, we did a lot of stretching exercises. Anthony also wore various types of orthotics to stretch the muscles. He started Botox injections at 3 years old and responded very nicely. But over time their effect lessens and you need to increase the amount given. At 5 years old, Anthony had tendon release surgery on his hamstrings, gastrics and achilles tendons. Tendons are what hold the muscles to the bones. By loosening the tendons, you loosen the attachment of the muscles and increase flexibility. The muscles don't ever really become looser, but the effect is a relaxation. I hope that makes sense. After the surgery, Anthony's PT was increased to 3 times a week for a short period of time and then decreased as he improved. He almost 5 years post-surgery. Once again thru a lot of hard work, he has compensated. Now he walks with a slight limp. You can barely tell that there is any handicap.

There are many other conditions that may or may not occur with a diagnosis of CP. All of which also result from brain injury. I would read up on them too, because they might also present with time.

We were fortunate. They only other issue that presented was an eating disorder. Because Anthony had problems with his muscles. He initially found it difficult to eat solid foods. By 18 months it was full blown and we had to work really hard to teach him how to eat solid foods.

Fortunately for us we live in NJ. NJ has a free state program for children with disabilities. He started receiving OT and PT at 9 months. At 3 years it transitioned to the local school district, which is a different challenge.

The most important thing I have learned is CP is not the end of the world. It can make life more difficult, if you let it. There is no right answer and no perferct treatment for everyone. Do what feels right to you. But most importantly, you must become very informed about the condition and all your options. There should be local outreach programs in your area. They should be able to give you a lot of information. Do not be afraid to ask questions? If the most minor question, is important. You are the only one that knows your son completely and you will need to become a strong advocate for him. Don't be afraid to get pushy. It's in his best interest.

Good luck!!!!!!!!

One last note. Anthony is the most wonderful boy with or without CP. I would not change a thing if I could.

Meldy - posted on 03/25/2009

hi, karena...good day to you...im mhey santos from the Philippines. Im sure you received a lot of replies already about therapies and everything...I just wanted to add up a little yet a different approach in handling your precious child..would that be ok with you? I experienced the same situation with my 3 year old child---we call him baby Brent. He passed away last Dec9,2008, just recently... still fresh though...but one thing for sure...having a special child though painful and very challenging... is indeed a great way of God to tell us that HE wants us to be treated special in HIS own loving way. Being a mother, it won't be easy...seeing your child suffers is very very painful ...we need to undergo process...that i want to share with you...if you have time please visit my site www.friendster.com/mheysantos or my facebook account or simply email me mheycris@yahoo.com. " God is our refuge and strength, an ever-present help in trouble" ---Psalm 46:1. Talk to you soon.

Jacintha - posted on 03/25/2009

HI Karena

my son was diagonised with cp when he was 7 months old.the doctor  told us he could'nt tell us if he would be able to do anything .we were stunned i was quite angry , upset and cried my eyes out about it.we started pt straight away and it was hard to see my boy cry .we had to teach him creep ,crawl .and walk .i spent all my time doing pt at home i can tell u with God blessing and faith my son has mild cp which is he has it on the left side of his body .he walks,climbs stairs .he does have a funny walk but who cares he is walking and thats all i wanted him to do.now i am focused on his speech he does talk but its not age apporatite. since he is 31/2 now .please be strong for your son's sake he needs a strong mum.the journey will be hard but i can gurantee you that it will be worth it all you have to do is have faith in the lord .take care jacintha

Angie - posted on 03/25/2009

My name is Angie, I have 2 boys. they do not have cp ,I do I got at 3 months old from a DPT shot. I was in a Grandmal zeiure for 24 hours and like you, they told my parents they wouldnt know how bad I was going to be. Although, things were hard learning to do things on my own I managed. Yes, it  truely does hurt when your muscles are so tight,you just learn to deal with it. I tell my boys to hold your hand in a fist and dont move even if you want to thats, how it feels! There is so much medications that wii calm it down. I take valuim , baklofin, and nuerontin.I also get botox injections ,with all this Im in pain with the tightness and I can open and close my hand !! I would love to talk to someone thats needs to hear iIT WILL BE ALRIGHT!! cowboykev31@q.com Angie

Becky - posted on 03/25/2009

hi same here everything seems the same its so difficult my daughter has the same thing and was born 4 days late after her due date and its was the hospitals fault as she lost oxygen during her birth. it was devastating news. i dont like the sound of using valium myself but if they recommend it for him then i might try it. my dfaughter now still cannot sit she is now 19 months old. i have to feed her sitting in my lap as she falls forward in her high chair. i dont know which cerebral palsy your baby has but my daughter has quadriplegia this effects all 4 limbs and she does go stiff sometimes but she doesnt seem to be as bad as she was when she was born. it doesnt look painful either but im sorry i cannot help anymore than that but best wishes

Melissa - posted on 03/25/2009

My daughter is 3 1/2 and has high tone in her legs since she was 9 mths. ( CP also)  We didn't do Baclofen because the neurologist she sees doesn't believe that it works that well in younger children and has a side effect of seizures. She has had Botox in her hamstrings and lower legs. It work better in the lower part of her legs because the hamstrings are still growing at a much less rate at this point is what her PMR dr explained to us. We also do PT ,OT, massage therapy, and swimming therapy. The swim therapy helps the most we see huge improvements after she goes. We also got her a monkey stander from early intervention, it helps with standing and hip and muscle developement, You use it with the AFO's.  We have moved twice since she was born. So she  has been to Dr's in Buffalo, NY and Boston. You might want to talk to your Dr about doing a surgery when your child is older. My daughter is having it done in the fall. It is called a Rhizotomy. They cut the nerves that are causeing the spastic motions of CP.  If you deciede to do this you need to research the hospitals that do the surgery. We were told that our daughter is an excellent canidate because of how well she responded to the botox. Botox will some day stop being so effective or not do any good. This is a perminet fix, where botox is not.

Angie - posted on 03/22/2009

Hi, My \name is Angie I have 2 boys but, they dont have cp,I do . I got it from the DPT shot when I was 3 months old. I woulld love to talk to you about what you can do about the spasms, I know they do hurt but, theres stuff that can help!! I promise!! Write me maybe we can talk on the phone .Its my passion to help anyone with a handicap. My boys are the same way!!  

Angie - posted on 03/22/2009

Quoting Karena:

Our 1 year old was just diagnosed with Cerebral Palsy

Hi,
My son was born prematurly at 26 weeks weighing 2lb 2oz. We spent 4 months in the hospital, 2 months into our stay at the NICU we were told he had suffered a bleed in his brain - and we would not know the extent of the damage until he does not reach certain developmental stages. At our most recent neo-natal follow up visit they diagnosed him as having cerebral palsy. Although heartbraking to hear the words we can all move forward with treatment(s) now.
Our biggest concern right now is his increased muscle tone - he can become so stiff and we cannot move his legs or arms - he comes out of just as fast as he goes into these states, but it looks sooo painful for him.
A big obstacle of this is getting around - he HATES his stroller, his carseat and every one of his 5 or so slings/baby carriers we have bought - he LOVES to be carried by mom or dad though - he almost weighs 20 lbs so it's beginning to get difficult. I am wondering if anyone else has had this problem with their babies? We have recently found a booster/highchair that he will sit in so we can feed him, which was and is a lifesafer as it was getting to difficult to feed him solids.
Would love to connect with other parents out there who are going through the same thing.
We live in a small community so there are not many support groups etc here - althought we are working with an excellent child development centre and we will beginning to frequently visit our Childrens Hospital a short trip away.
Our pediatrian also mentioned starting to use muscle relaxers (valium) we are holding off on that for right now - anyone have any input on that.
thanks for listening....
k.

Rhon - posted on 03/22/2009

Hi I live in Newfoundland, Canada. My daughter has moderate to severe cerebral palsy and can be very stiff as well. I have never considered valium to relax her muscles unless she was in pain and I would consult a neuro and get the input of the entire intervention team of therapists and doctors before I would make such a decision.



Physiotherapy and occupational therapy programs are a huge part of helping children with cerebral palsy maintain health and movement. While it looks painful, most children who have increased tone do not have pain when it happens. Their muscles might tighten up when they are excited or angry but relax when they relax. There are many ways of doing something and therapy works with that idea in mind, setting up goals and showing you how to get there.



There are orthopedic strollers and feeder chairs that will fit children as they grow out of baby strollers and also there are braces and other things that a child can wear to help stabilize them as they are learning to stand, crawl, walk and move. There should be a national association for cerebral palsy and if you can get a copy of it, ask them for a book called Children with Cerebral Palsy, a Parents' Guide. It answered a lot of questions I had and helped me learn what to expect or ask.



There are a lot of challenges ahead but a lot of things to look forward to. There should be a child rehabilitation team set up as part of the hospital. Get a referral to them from your doctor and things will begin to come together for you. The team will help you get an overall picture of where you and your child are and help you work to where you want to go. Always remember that you are the most important tools your child has in this life, the strongest support and the greatest gifts. Don't let anyone talk you into something that doesn't feel right and don't be afraid to tell someone what someone else told you. Everyone is accountable for what they say and do. Demand respect and you will get it. You and your child are a team to learn what is right for him and sometimes it's easy to get discouraged but each day is another day something you have been working towards can happen, another gain, no matter how small, is a big thing. Good luck and hugs to you all.

Kynstarsha - posted on 03/21/2009

Hi Karena.

My daughter was also diagnosed at age 1 with CP. She was born at 30 weeks and weighed 3lbs 6oz. She is now 4 years old and 42lbs. She receives PT and OT every Wed at the Children's Hospital in Wash DC for increased tone in her right arm as well as both legs and her right had is usually fisted but sometimes opens,but she can not physically use it. Since going to therapy for the past year, I have seen alot of improvement thus far. She also sees a Physical Medicine doctor, Nuerologist,Neurosurgeon,Opto for other reasons, like Strabismus(lack of muscles in eyes which causes crossing of the eyes),VP shunt for drainage in the brain. Also she receives Botox every 4-6 months for the tightness in her legs and arms. She can walk but not a long way and she still loves to be carried-Can you imagine with 42lbs. Hope some of this info helps

Tabatha - posted on 03/03/2009

Hi Karena,



My name is Tabby and I have a 17 month old son with Cerebal Palsy. He has the increased tone and it seems painful for him as well. I went to see a physiatrist ( don't know if that is spelled right.) And he recommend that my son take Baclafin. Since his tone is so high they do not think that the Botox will work at first. They need to get him relaxed a little and then they can focus on the exact spots that need Botox. If they just give him Botox they will not know where to put it. Also he was referred to an orthopedic doctor since he is not walking they had to make sure that his hips are not coming in and out of the sockets. They are not but there is a possibility of that in the future since he is still young. Also he does attend OT and PT twice a week. There has been no progress with him as of yet and they do not know if there will be. Since he has been on the Baclofen he seems not to be in so much pain though. He is much happier and relaxes alot easier. He has been on it for about 3 weeks now. Also about the sitting..,my son hated everything as well. I feel for you on that one. We have just ordered the Tomato seat for him to sit. Since it is softer and has a 5 point harness it seems to make him more comfortable. Also we ordered the McLaren Major Specialty Stroller. I have to tell you that this is a little pricey, but it is worth it. It is a stroller made for children with special needs, It folds small for nice storage and it does not take up alot of trunk space. It has a 5 point harness to hold him in and is higher up so that he can reach a table or watch tv. It is also wider than a normal umbrella stroller and is positioned especially for children with disabilities.. We just got ours and Julius LOVES it!! I allmost cried. He could sit up and look at everything. He watched tv for the first time today since he was high enough to see it. I would recommend this to anyone. I got mine from dmart2000.com for $489 with free shipping. This is the cheapest that I found it. This is normally and $600-$700 stroller. Also since he has such high tone, we did get a bath chair for him. He loves bath time now. He can play and not have to worry about someone holding him. It used to kill my back but now he can actually play in the water and not just rush through a bath. I hope that this is helping you. I found out that my son will always be delayed and they do not know if he will talk or walk. The therapy has worked with his hands. He was not able to open his hands and now he can. It is extremely slow and steady but I am confident that he will do good things. He is my angel and no matter what happens God intrusted me in his care bacause he thought I was the best one to love and care for him. And he has done the same for you. My son has had the high tone, muscle spasms, and flinging himself backward ever since he was born. Good luck and I hope things go very well with your son and the doctor appointments.



P.S. Also he does have a stander and a corner chair. These are on lend from a special school that he attends, you might want to look into them as well. As for the insurance, where I am my insurance will pay for a special chair, but they will only pay for it once every 5 years. So if I had them pay for the stroller and say 2 years down the road he will need a wheelchair then they would deny the wheelchair. So keep that in mind as well. We bought the stroller because it is alot cheaper than a wheelchair. The insurance can also help with other equipment that he might need. Just call them and they will let you know.



Take care

Karena - posted on 02/27/2009

Hi Julie,

We are seeing a PT and OT once a week. the ball has started rolling now that he has been diagnosed - next week we visit the Children's hospital where will be seeing a seating and positioning specialist who will hopefully help us.

We haven't talked botox yet but I am hearing good things about them - something we will speak to them about too. The obstacle we come across is that we are about 4 hours away from the Children's hospital (we live in BC, Canada) and we have had to wait for referrals etc. So like I said the ball has started to roll now and hopefully we can get ontop of this.

did you see your son relax right after the botox or does it take a few times for it to work it's full effect?

thanks for getting back to me!

Betty - posted on 02/26/2009

My son was born with a severe bleed on his brain.  He has spastic quadriplegia, cerebral palsy, and a seizure disorder. I also work with individuals with Developmental Disabilities.  He too does the stiffening up...especially when he's cold.  (Or mad at me!!! :P)  Therapy is always a good way to go first, and the therapists will teach you how to do the stretches at home.  I do not recommend muscle relaxers, it's a medicational fix, further more, most muscle relaxers are sedatives, which will impair his development.  A recent visit to and orthopaedic, he told me to look into a medication called Baclofan (sp?) for his spasticity.  I haven't done so yet, but will let you know when I find out.  Supposedly, they can order the baclofan in a pump form, much like insulin.  Good luck!

Jennifer - posted on 02/25/2009

My son has spastic cp and he receives pt and ot along with botox injections to help the spasticity. We see a Rehab doctor in chicago. He also wears an AFO. At home massages and routine streching help him. Good Luck

Margarita - posted on 02/24/2009

Hi,

I¨m from México and I have a daughter who is not certainlly with cerebral palsy but she has brain injury . I take her to an excellent teraphy that named Vojta you can look for  in internet to learn more about this and how this kind of teraphy helps children in the same conditions as ours.

Good luck and congratulations to be a strong and courageous mom.

Sorry about my english

Lori - posted on 02/23/2009

Hi - I'm so sorry about your son's diagnosis - my daughter was recently diagnosed with CP as well. She's two. I highly recomment PT for the muscle tension - it can work wonders. I also recommend seeing a physical medicine doctor - we recently saw one for the first time, and I have to say, I love him. He was wonderful about explaining things to me, and was also able to prescribe us something for the muscle tension in my daughter's arm and legs (her left arm is fine, only the right is affected, but both legs are). As for the stroller and slings - is it possible that they are uncomfortable for him? Maybe try adjusting the position on the stroller some and see if that helps. As for the valium - I would recommend a physical medicine doctor - ours prescribed Baclofen, which is working great for Audrey, but has fewer side effects. They are hesitant to do Botox on her before she's three. Where are you located? I know it's hard - feel free to message me if you need someone to talk to!!

Julie - posted on 02/21/2009

Hi Karena,

What kind of services is he getting? Does he get PT or OT? They might be able to help you with getting a stroller/wheelchair that might be more comfortable for him. A traditional stroller is really inadequate for kids with CP and his insurance should cover a better one.



Have you considered botox for his contractures? My son gets botox in his hamstrings about every six months. At first, I was strongly against it, but after seeing what it could do for him and how much more comfortable he was, after getting the injections, I'm convinced it's worth it for him.



My son was also born at 26 weeks and weighed 1lb 6oz. He's now 8yo and in second grade. He's non-verbal, but we have other ways of communicating. He uses a wheelchair and a stander. He's had services through the school district since he was 6 months old.

Julie - posted on 02/21/2009

Hi Karena,

What kind of services is he getting? Does he get PT or OT? They might be able to help you with getting a stroller/wheelchair that might be more comfortable for him. A traditional stroller is really inadequate for kids with CP and his insurance should cover a better one.



Have you considered botox for his contractures? My son gets botox in his hamstrings about every six months. At first, I was strongly against it, but after seeing what it could do for him and how much more comfortable he was, after getting the injections, I'm convinced it's worth it for him.



My son was also born at 26 weeks and weighed 1lb 6oz. He's now 8yo and in second grade. He's non-verbal, but we have other ways of communicating. He uses a wheelchair and a stander. He's had services through the school district since he was 6 months old.