What do I need to know about cerebral palsy?

My son is 8 months old born August 2021 he has been diagnosed with CP (cerebral palsy) we don’t know what kind yet because he’s too small and we are still doing a lot of tests. He is almost constantly moving his arms and legs but when he does calm down and is still he will have times where he will all of a sudden shake his legs and arms and stiffen out his body. He can not sit up, he can roll from back to front, but not front to back and he is nowhere close to crawling because he still gets tired when holding his head up. He is on honey thick formula because he aspirates when he drinks his bottles we have also had a lot of issues with him gaining weight. So we don’t know how to incorporate regular food along with the bottle because that is were all of his weight gain is coming from he weighs 15lb. He had an EEG and it showed (nearly continuous right hemispheric polymorphic delta slowing) so I guess my question is what should I be asking his doctors we have 3 other kids and nothing wrong with them so we have no idea how to navigate this new world. What questions should we be asking? What was helpful to have or to know with all of this? We have a 24 hour EEG on April 20th so hopefully that will tell us more and we are also still waiting on his blood genetic tests that got sent out. I will try and watch for this post and answer any questions. But not every one in our family knows what’s going on so I will privately message you if need be. Thank you all so much

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My daughter has CP. A MRI at 17 months showed she has a brain injury called a Periventricular leukomalacia (PVL). PVL caused her to develop CP and the type of CP she has is spastic hemiplegia that affects the left side of her body. Before we knew all this I had taken her to an orthopedic doctor because I thought there was maybe something wrong with her hips because the way her foot turned inward, but a X-ray showed they were fine. I made a comment to the doctor how she also keeps her left hand fisted and he basically told me right then and there he suspected CP and to follow up with a MRI. Our lives changed forever after that day. She is my 3rd child and my other 2 children are completely healthy so it definitely has been a whirlwind adjusting to the new “normal” of weekly therapies, all the different evaluations & specialists we now see on the regular. It has only been 7 months since her diagnosis so we are still learning so much and it is a lot to take in. So far she has ear tubes, an AFO brace on her left leg and a left hand abductor, she also has trouble eating and drinking. I look to social media support groups with her specific CP to see other peoples CP journeys since nobody in our family or friends have experienced this. I’d be happy to try and help answer some questions you may have. Hang in there mama. :heart:

Help a mama out and respond anonymously on our forum. What do I need to know about cerebral palsy?

I don’t know a lot about that specifically, but my youngest has autism and the biggest help has always been other parents! There are sooo many groups out there! Facebook is a great place to start by searching for support groups with other parents both internationally and locally, it’s a great place to find people who can completely relate and have the same experiences. Also asking your doctor/hospital if they have any groups with other parents, or counselors that help you navigate or anything like that. There are a lot of resources out there! Do not be afraid or ashamed to use them!:heart:

Prayers for baby and u.

I can’t be of much help, but my mom has cp! Just know they can live a somewhat normal and great life. I believe with my mom she actually didn’t start walking til she was three. I hope everything works out well, stay strong!

I have never went through this but I have followed other people with children that have CP, have the doctors said anything about maybe needing a feeding tube? Or even the NG tube in his nose? Would he get more nurishment that way?

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Only speaking from past experience.
I had an older cousin who had severe cp.
She was wheelchair bound and had to have everything done for her. Her speech was difficult to understand outside family but she was the smartest one of us all.
In a cp club she attended were all different abilities. Some walked some didnt. Some struggled but managed every day tasks
This was many years ago and im sure things have changed now with physio and therapies that were not available then but the one thing I remember was the fun they all had. The joy that came from being in their company. The club and holidays were full of love and support for each other. The families all helped each other . There were tears…but more often there was laughter .
Theres no way of knowing how your baby will be until they grow. Abilities may be delayed but still arrive.
Your health visitor should be able to connect you to other families and support groups. Accept all the help you can get. Involve all his siblings in his care so they can build a strong relationship with each other. :heartpulse:

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Do searches for CP Groups on FB. They have some for new moms with lots of advice and support. :black_heart::black_heart:

As a an adult with CP it probably would best to wait til they have done all testing so they can determine what specific kind of CP he has and what other issues he may have. Once you can put a name to or have an idea of everything he has, then you can ask more specific questions as to what he will need. Although I can tell you he will most likely have some physical, occupational and maybe even some developmental therapy to try and help him reach/ catch up to any milestones he may be behind in. I say this because I went through it as a toddler and older child. Also know he may need some assistive devices such as a walker, leg braces, a wheel chair, etc. I’ve gone through quite a bit myself in my lifetime (I’m 30 and got diagnosed at 18 mos). He may have an IEP (Individualized Education Plan) or something similar when he starts school. (It may be called something else depending on where you’re located). I also had one all through school. Also know that he can live a normal life depending on the severity of his case. Remember, just because he has trouble moving, doesn’t mean he won’t be smart as a whip. Feel free to message me if needed.

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My daughter had the same issue with her food. We did a swallow study and she needed a g tube for a while. She had a weak right side. They told me she had CP but with therapy and time she would out grow it. True story. Shes now 12. Had the tube for 15 months and therapy for 6 years braces on her legs and the whole 9 yards. I wish you the best of luck. Start therapy early and do it often!

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I am 39 with spastic cp
Your welcome to message me and I’ll answer as many questions as I can

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I agree with all that Cece said. My son had CP along with developmental delays. What helped me as his mom was a referral for him to a teaching hospital, where many tests were done and results were gently explained. We also placed him in a day program at an early age- I would suggest asking for a referral to Help Me Grow or the developmental screening & referral agency in your area. Early intervention is so important! We had a group of parents at the day program and learned from each other.
Also, do not underestimate your child or yourself. My son was non-verbal but had the best sense of humor and understanding. We were not initially encouraged by his prognosis, but he outlived it by over 40 years.
Take care, mama. Reach out if needed. I have been where you are.

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Wait til the testing my son had his testing they even did a MRI he’s gose up for CP panel this summer his is spastic diplegia cerebral palsy it’s mild but requires leg braces.
& Walking assistance without them
He can not do stairs his knees lock up when going down. If we walk more than 30ft he his legs give.
Seizures as well let the Drs get everything first.

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My sister boy was born with this disease and drag his one side when he crawled.Went to Riley Hospital for Children. His brain was normal but not his body,went to regular school too.

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My daughter has CP as a result of a brain infart .
Her development was slow but she was able to do everything that a “ normal baby/ kid “ but for her took a little bit longer, she never crawled but she walked before she turned a year , she started talked when she was about 5 , her mental age is not the same as her biological age but she is doing amazing, she is now 22 ( but she has the capacity of a child still ) but she is very independent, she can do almost everything, she can write , read and she speak Spanish and English:)

In my opinion the most important part is to get the most information you can , never compare your child with others , all kind of therapies will make a huge difference , and do not treat your kid differently than your others . And do not do everything for her / him , don’t feel sorry and allow him/ her to struggle to find the way to do whatever they are trying.My daughter can only use one hand properly and she can assist herself with her other arm ( she can not open and close or grab anything with her right hand ) That way she/ he will be more independent.

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I was born with mild cp on my right side. Cp is different with everyone. I had some issues also walking on my toes,it was never taking care of and fixed when I was younger so in my 20s I finally went and got my surgery myself. I live in more pain now since it wasn’t done when I was younger. Keep your head up for that little bundle you have.

Our experience was that they wouldn’t diagnose our son’s CP until around age 2. I believe its usually detected with an MRI and some stuff doesn’t show up on it until they develop further. Was anything traumatic about the pregnancy or delivery? EEG would maybe show seizure diagnosis but maybe get MRI. We also have a G tube for our kiddo now and it is a HUGE blessing. Navigating this world will be hard but find yourself a network with other parents either in social media or in your community. They will often help you more than most doctors sometimes. Cp warriors is a good group on FB. Also, most states have early intervention services so find what is available to your kid as early as possible and start using that.

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Get a doctor who specializes in cp

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My son has issues with weight gain and what we did was add some baby cereal to his baby food. It makes it thicker and is suppose to taste a little like formula. I have nothing that can help with the other issues but I hope that might help some with the solids portion.

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Polymorphic delta waves sometimes indicate seizure activity. I’m not sure about that though. I would be asking his doctor about that though.

Sherry Haywood could you help?

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