Development with cerebral palsy?

My 5 month old son he was born on August 9th 2021 was diagnosed with cerebral palsy. He has an MRI on March 3rd for his brain. He also has to go for a swallow study and go to a nutrition specialist becus he only weighs 13lb 11oz he is in the 1 percentile for that he's having a hard time gaining weight. His right side is stiff arm leg and even neck. He can move he talks alot but he's not rolling or even close to it. His head is like a bobble head because it's tremors and his arms and legs do too. He will not stand on his feet at all he just holds them in the air. When on his tummy his feet are up never touch the ground. I'm just really nervous for the future and want to know more about what to expect. He has 3 older siblings with zero illnesses. I just don't know what to do or how to tell or even when to tell his siblings. We don't know what type he has yet or how bad it will be. But any and all thoughts a prayers and advice would be amazing.
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Help a mama out and respond anonymously on our forum. Development with cerebral palsy?

Prayers for your sweet boy.

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I’m 33 I have cp … i can tell you progressive care makes a difference! I was told I never walk I am married 2 kids and most days the average person doesnt know I even have cp it took years of physical therapy but never loose hope and always push … my parents pushed me past my comfort alot!!! prayers and know it gets better!!!

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Sending prayers for your sweet baby.

Sending healing prayers for your son :pray::pray::pray::pray::pray:

Have them check the spine my son had a brain/lumbar spine MRI.
If anything ask about spastic diplegia cerebral palsy
Prayers they thought cp with mine but it’s tethered spine & he’s in AFOs he’s 4 yrs old their are treatments too help physical therapy stay on it

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Start getting therapy services for your baby. My sister has CP and early intervention is the key. She was told she’d never walk… She does with a walker. She’s got 2 college degrees. Her right side is her weaker side. She does yoga and other exercises to help strengthen and improve her control. She started with therapies before she was 6 months old… She’s now 37.

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I have a 41 year old severe handicap daughter with CP and other things too. She is a baby in an adult body, you have to do everything for her. She can’t walk on her own but as she got older I taught her to walk while holding her. We walk all day long in the house. She is a lot of work but a very sweet girl. It’s so hard cause she can’t talk to tell me what is wrong or what is hurting her.

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Sending healing vibes​:pray::pray::pray:

Take one day at a time and celebrate each triumph with therapy and love he will become the man he supposed to be

Prayers. My brother was born with cp. He is 43 now. His effects his motor skills. Things have progressed since the 70s when he was born. Take advantage of all the resources available nowadays. Your child will be such a blessing to your family but it will be a struggle for him. Be patient. Learn all you can and be his advocate. Best wishes.

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prayers for your baby and for you and your family

Early intervention Occupational therapy and physical therapy will be your best bet schools for cp are called day programs get him evaluated by doctors and turn in your ssi for him so you can get services and equipment if needed it’s all free also respite care is when a care giver comes and gives you a break
And works on the needs of the child while you work or gym or whatever
Also behavioral health techs for therapeutic treatment also for daily life skills

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Everyone above me just about summed it up.
When I told my older kids about their baby brother, I told them the truth. That it’s going to take a little longer for him to learn to do things, and he will need extra help. Then we address different questions as the come up. I promise you, it will not make any difference to them and they will love him just the same. My little guy doesn’t have CP, but he has Down syndrome with severe hypotonia. He’s 5 and uses a gait trainer, and has smo’s.
It’s difficult getting a new diagnosis and that first year is really hard, between therapies, tests and appointments, but you’ve got this! :heart:

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My cousin was born with CP mainly affecting his legs. My Aunty was vigilant with therapy and a can do attitude. He needed a foot brace to keep his ankle at a certain angle, so she took him skiing in boots to achieve the same thing. Ended up being a rep skier. Now as an adult, you can barely tell unless you know. The point being, your baby will have what abilities/disabilities they have (much like your able bodied kids) what you can control is how the family treats him and his attitude to life. Find away to keep him involved and accountable just as you do the 3 bigger kids and he will (hopefully) have a wonderful life. Sending much love and strength for the challenges ahead.

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There’s so many levels to cerebral palsy, it’s a very broad term. I had a friend who walked with a limp but aside from that she did pretty well for herself, but I also know people who are quadriplegic from it. Some people suffer more physically and others more mentally or emotionally even. My thoughts and prayers are with you :pray::heart:

I am so sorry your baby and you have to go through this . You have an enormous job to fill. You really need Jesus and all the services you can get .

Early intervention. I have a friend who has it terribly. Mentally she’s 100% but physically it’s so rough. She’s gotten help and has kids now!

Prayers!!! My oldest has cerebral palsy since birth, he’s 16 now. Be honest with yourself and your children. Let them know that their brother is special and will need their love and support.
That none of you know what he will be able to do but that’s ok. Some things will take him a little longer to learn but he will get there in his own time. (Don’t ever use/say/think NEVER because honestly you just don’t know).
My son didn’t take his first steps until preschool nor speak until Kindergarten. He also was on life support 6 times in his first year with 2 operations. Now he’s a junior with the assistance of Life Skills. I’ve never discouraged nor used NEVER when it’s come to his development and life.
Best of luck and God Bless!

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thinking of u and your family 1st things 1st its a hard thing to hear !!! and i hope u r ok ? we too found ourselves in that boat with our 5th although circumstances might be different -our son was born at 27 w so has alot of ongoing heath issues ect 1 of them being is cp - on his right side they said he wouldnt likely walk ----after visits back to the pediatric and ots ect physios we go — 10 months on his now 2 we walk its not the way u or i would walk but his walking and running my gosh he falls over so much but i just tell myself its ok he nos no different jusst happy to be with his brothers he is also due to have an mri for this reason and a few others -its been pushed back due to his respitary state -ect — our little dosent eat soilds due to being prem -and so he has supplements but is starting to not want them either its a hard road but there will be happy moments on along they way celebrate the good days embrace the bad ones he is not my 1st child with a disability but his my 1st child with multi -much much blessings to u and ur family our inbox is open may i ask how old ur other children are we have 11,8,5,4,2—i dont hide nothing from them -we try to answear questions open and honestley family unite and become 1 in good times and hard ones too

My daughter is 20 and she has CP and global delay . She had 3-4 mini strokes when she was 2 months old and she has had so many seizures … Jess can’t do nothing but she does kick , rolls around some . She also can not sit up on her own , nor feed herself , still in a diaper , can’t hold a cup or anything without 100 % total care for her … Dr said she wouldn’t even survive but thank God she is still here … Never give up on your baby … do lots of PT and OT with them and fight for child to get the best care that is out there . Lots of prayers and love to you and your child .

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Cerebral Palsy Support Group Cerebral Palsy PARENTS information group

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My daughter has CP . Hydrocephalus, intractable epilepsy and has global developmental delays

My brother is 31 with CP. When he was diagnosed as a baby they told my mom that he would never walk or talk and they tried to talk her into signing him over to be put in a home. (She was a teen mom) she never gave up on him tho. She had him in physical therapy when he was little. Now at 31 years old, a stranger talking to him would have no idea. He does have a learning disability that can be seen at times. However physically he does well. He walks, talks, drives, socializes, and works full time detailing cars. He has some mental health struggles that he’s medicated for as well. I’m not sure if that’s associated with CP or not, but we do have in depth family history of mental health issues.

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Tell them now so they can help you with this task life has given you I think the sooner they know the faster they can learn how to help and deal with it they will be there for you

My granson has CP WAS BORN AT 22 WEEKS an is now 32 years old in a wheelchair but one of the smartest brightest youny man you could met … It all takes time , just love him for who he is an today the treatment has improved so much …They are so special an everybody learns so much from the situation … Good Luck AN TAKE CARE …XXX

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Gather them around for a family meeting. Let them know what is going on. They know something is wrong or that something is fishy because of all the Dr appointments. You’ll be surprised when they say …they know. Kids are so smart. They pay attention more than you know. Especially with medical or family crisis. I’m sure they are scared if they don’t know. But, definitely bring them into the loop. They will be happy to help. My SIL has mild CP. She’s a triplet. She said it was her sisters that helped the most and they still do. She is near 60 yrs old and just became a grandma last year. She has an identical triplet and their sizes are very different. Her sister is a head taller and about 20lbs heavier. But they are both skinny. She weighs around 80lbs. She has a wonderful attitude and and a strong faith in God. Don’t worry. God is with you and will help when asked. Prayers for y’all. God bless y’all. :pray::pray:

You may want to look into if this condition wasn’t diagnosed while in utero, because there are alot of class action lawsuits out there about cerebral palsy being caused by botched or improper protocol being used during deliveries and this may be caused by the medical staff who delivered your child. I mentioned this because the thought just occurred to me when I read this Heavenly Father we ask that you send your highest Blessings to this mother and her family during this time and beyond. AMEN! :pray:

The stiff arms sound like tortecollis. The rest sounds like a mild form of CP. I wouldn’t worry about it. My son is 5 months old too and is no where near rolling. Kids do things in their own time. Don’t compare to others. Just love him, so, so much.

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I live with a form of CP my right side is also affected my issues sound more mild compared to your child but I do live a fairly happy life thatd not to say it doesn’t have its challenges. I have amazing support from my husband friend and family that help out tremendously. So a good support system will help as things are harder in daily life then regular abled people. There will be lots of challenges meltdowns and proud moments but helping them or even giving the independence to learn in their own style will be what matters… teaching the people around you what cp is also important.

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I’m a kindergarten teacher. I have a 5 year old with CP in my class. She is very independent and only needs help going up and down stairs as well as putting her leg brace on. She only wears the brace for the afternoon and only on her left side. She also needs help with speech. With all that said, she does amazingly well in my class with 26 other students. Minus the leg brace you could never tell she has an “illness”.

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I have no advice, all I can offer is positive thoughts and many prayers for all :innocent::smiling_face_with_three_hearts::pray:

Look up cerebral palsy foundation. Research it well they have grants and people give lots of money too. For people like you your going to need equipment expensive wheel chairs get in touch with them you may need a nurse to come in every so often. God bless you I pray god you help this mom

Your state will offer some early intervention services for free, and they should be able to help guide you as to what he needs

My nephew has cp. He’s 25. He can walk with a walker but not on his own. He prefers to crawl to get where he’s going since it’s quicker. He can talk, it sometimes gets hard to understand him when he’s excited.

Stretch the muscles, have a physical therapist show you. My. Granddaughter was born@ 26 weeks and we stretched. Her right muscles,it helped her a lot. She wore leg braces and did not walk until after she was two years old.
She is now twenty, very opinionated young lady.
She graduated with honors and holds down a full time job. Your child will be fine, just needs extra services. God bless you and prayers :pray: everything works out well

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Sending Prayers! Hugs for all of you as well. Dear God please HELP this little boy. Heal him. Amen.:heart::pray:

Early intervention is the key. There are many effects of CP and everyone is different. Stay positive and always as someone above mentioned, have the “Can Do” attitude. Be honest with his siblings because they will be able to help him achieve goals and such. Be his biggest advocate and his siblings will follow too. The world has come so far with therapy and such. There are many stories on FB and instagram that will help you too. I follow several and just know you are not alone and never be afraid to reach out to other moms or families.

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Help him stretch, massage his little arms and legs when you put lotion on.
But also, remember every baby is different. So even though he’s been diagnosed, not all babies are attempting to crawl at 5 months even if they’re not diagnosed. He’s babbling which is a good milestone to hit!
Just do what you can to help stimulate his muscles. He will do what he can do in his own time mama.
As far as the weight gain goes, offer less more times a day. Instead of full bottles every 2-3 hrs like normal, offer 1-2 ounces every hour or so. See how he does with that.

Positive thoughts and prayers sent your way!
Over the years I’ve worked with many different people with cerebral palsy from mild to severe! Lots of hugs and prayers to you :purple_heart:

Do some research on your computer and see what information you can get

There are so many different levels of cerebral palsy . Just because he’s not doing something now does not mean he never will. Keep him moving. Massage those limbs and encourage him to do everything he can for himself no matter how long it takes him. Feeding can be hard but if need be they can fit a tube directly into his stomach to help.
Tell his siblings now. Keep it age appropriate of course but they need to know he’s special and needs lots of help, love and interaction. Sensory toys to attract his attention and encourage him to stretch towards them. Always ask questions, don’t give up on him , keep pushing Drs , physios etc to get every bit of help you need to help him fulfill his full potential. Positive vibes :heartpulse::pray:

My son, Cassian is 21 months old and has spastic quad CP. He is not quite old enough to be formally assessed for a GMFC score yet, however he is likely to be at a 4/5. In other words, he is at the severe end of the spectrum.

Life goes on after a CP diagnosis, really! It sounds like your babe won’t be as severe as Cassian, but I can promise you that even if he is…your boy will still have a great life. It will be hard and busy and you will feel overwhelmed. I’m not going to sugar coat it. You will get support but it will still be the hardest job you’ll ever do. But also incredibly rewarding. Little things your boy does will fill you with joy. When we raise disabled children, milestones just mean so much more! Recently Cassian was on his tummy, lifted his head and cocked it to the side to look up at someone and I screamed like he just won an Olympic gold medal :joy:

Wouldn’t trade that joy for the world!

Weight gain: important to get on top of because CP can lead to malnutrition which can lead to other complications. Cassian is getting ready to have a PEG inserted and I’ve made my peace with it. It’s what he needs to grow and thrive. The nutritionist will help you help you troubleshoot the weight gain, but be prepared for a long battle. It’s a common struggle for our little CP warriors.

I totally recommend finding a support group - in person or online - and connecting with people going through similar experiences. All people with CP are unique and have different symptoms and characteristics, challenges and strengths, but we can support one another and lean on each other.

You’re entering a world that might seem really confusing and intimidating. You’ll have to learn the language of CP and neurology. You’ll have to get your head around assistive technology, orthotics, therapies and treatments and surgeries. But you’ll find your way and you’ll forget what life was ever like before CP :heart:

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Cerebral palsy is not a sickness. I am a 33 year old mother with cerebral palsy. From the time I was very young, my parents were told to treat me like other children. The best gift you could ever give your child is to teach him to be as independent as possible. Although I do use a wheelchair, I graduated college with double majors, I have lived alone, I got married and have a toddler, who I can care for independently. His journey won’t be easy, but it is important to help him remove “can’t” from his vocabulary. He will learn to do many things if you support him with patience and love.

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Listen to these people who have been through this personally and have come out with a positive attitude… Every C.P. Situation is different and this baby will require more work, in some ways, than others but if you and your family stick together while accepting help when you can find it you will be fine.

they just might only see him as their baby brother, not a baby with CP, Let that talk go until they ask, As for everything else, with the right Drs & therapist, things will go well for your baby, Just breathe, take one
day at a time

He talk a lot at 5 months ?? That’s a huge plus with CP

Find out about Shriners Institute for Children they are amazing with helping you and your child along the road ahead .

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I knew a little boy with CP. With therapy he is a high functioning very intelligent man. He was born in the 70’s before all the new therapy and he’s amazing

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Physical theapery and also work with him at all constantly. Also work with him the more u work with him the better off he will be.

Your child qualifies for free in-home early intervention services. Get your pediatrician or one of the specialists to make the referral right away. Some states allow you to apply for services without a referral because you have a qualifying diagnosis. I know it’s scary but you can do this, Mama! My son has Down syndrome and has had swallow studies, many surgeries and all the therapies. We never know what the future holds for any of our children but we do the best we can for them and advocate for their needs. Join a CP support group for the best advice from other moms in your position. You’ll learn so much about what to ask for, accommodations and tips to help your baby thrive. It will be okay.

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Range of motion of those stiff limbs. Speak to his dr/physical therapist. The longer he stays stiff the harder to get back the ability to move.

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Hugs to the family going through this. God will always be by your side. Just talk to HIM.

My son has CP and we didn’t think he would half the things he does. He didn’t get diagnosed until 1.5years, he has it mild but is now on the waiting list for autism too. He has a muscle relaxing medicine to help him and this effects his speak so he has a speech and language therapy, he wears a splint full time to help with keeping his left foot in place and helps with balance too. We don’t treat him any different to our other 3 children because he will think he can get away with it lol. Please focus on the things that he can do and the things he likes doing and learn him new things. My son loves to brush his hair and his physio was soo shocked because it uses alot of concentration and control but he can now do it xx

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Let the other kids know that he has some needs that are a little different but doesn’t make him any less amazing than any of them. You can let them help in small ways in his care so they can learn some skills as well as a bonding experience.:heart:Prayers and best of luck.

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I have a friend who has cerebral palsy. He has been wheel chair bound his whole life. But he’s lived a full and happy life. He’s still alive and 52 years old. He goes camping and hunting. Loves sporting events.:smiling_face_with_three_hearts:

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I’ll be praying for your son & his family.

Prayers for you and your son. Also for your other children.
Take the advice of the lady who’s pointing you toward services that will help you help your baby.
God bless you all.

My brother has cp. Completely immobile, nonverbal, can’t eat, wears diapers, and has been in and out if the hospital his whole life. He’s surrounded by love and support from everyone. He’s currently 30 years old. My mom and dad take care of him and he goes to an adult facility for people like him during the day. Basically like a school day to get him out of the house and socialized with others. It’s been a very tough road but totally worth it. Please locate support groups and services to support you.

My son has CP, his muscles are weak. Dr’s used to say he was a wet noodle baby. He had no muscle tone. Not able to lift his head, crawl, walk, talk … until he was much older, and with lots of therapy and lots of prayers! He’s 12 now… I’ll post young pic vs older pic!

Positive thoughts and prayers :pray: