does any one have a child that has severe cp?

Kelsey - posted on 06/27/2012

My boyfriends daughter has spastic quadriplegic cp. She is 6 years old and cannot sit, stand, walk, feed herself or use the potty. She was born with cataracts and began having seizures when she was just a few weeks old.. She would have up to 20 small seizures a day as an infant. As she got older the seizures got worse and she began to stop breathing when she'd have them.. On our family vacation she had to get air lifted to the hospital after a bad seizure. Luckily her medications have stabilized and she is now doing extremely well with her seizures. She has had two surgeries. One to lengthen the tendons in her legs that left her in casts from her knee down. A second surgery to fix her hip which was out of place.. This left her in a body cast for 6 weeks and she also now has a metal plate in her hip. She has also undergone botox treatments for drooling and in her feet. She has been through so much in her short life yet she is still easily the happiest child I have ever seen. She woke up from surgery immediately blowing us kisses & smiling. Her father and I are taking her to conductive education in a months time. We hope to see some great improvements in her as she really has the motivation to help herself learn now as she is getting older. I feel so incredibly blessed to have her in my life.

JAY - posted on 05/25/2012

Hi Crystal, I see you posted this post in 2010, I would like to find out how your daughter is doing and what symptoms did she show at an early age? I ask this as my son turned 3 months this week and was born with serve brain damage and has cp to, he had a vitamin k shortage a week before he was born causing internal bleeding on his brain, I feel very lost as everything the doctors have told me he would never do he has already done, I just want to know is it normal for them to reach all there miles stones and maybe a bit more until a certain age and then fall behind? I know everyone says only time will tell, but as a mother and I am sure you felt the same, you want to know now so you can pre pair yourself for what’s coming, and not knowing is worse then knowing, I saw your post and see it was 2 years back and thought maybe you can give me advise as I am were you where, my son feeds well with the bottle and eats baby porridge with a spoon, he doesn’t drool, well sometimes if you give him some panados, he can grasp his toys with both hands, started smiling at 2 months and slight laugh, he can already roll himself over onto his sides, however he is very stiff in his arms and legs, he looks around and doesn’t miss anything, startles at loud sounds, follows noise, just starting to make eye contact, he has a good sleep, eat and play routine, he isn’t difficult at all, only cries when hungry, tired, cold or needs a change, from your experience I just want to find out at what age was your daughter when you picked up something was wrong and not when the doctors told you, with me they told us from the day he was born, but he does everything he should except very stiff in the arms and legs sometimes not all the time.

Heather - posted on 05/22/2012

My son is 15 months old but looks like a 3month old, and has the moter skills of one barley. I love him dearly!!! He also has CP along PLV microcephaly with dysphagia, infantile spasms, He has a g tube, visual impairment, and even after the g tube placement still having slow growth but i guess that's because of his short bowel. I don't know how much help i can be but i can be a support person because we all need those. I am so scared because i was recently informed that he has a breathing condition that cannot fix its self and if it gets any worse or he starts to get phononia multiple times he will have to get a trach. I know its in the future but i have no clue about anything about a trach and would not know how to deal with one. help? support? advice?

_ a clueless girl who needs support

Hstrickland46@yahoo.com

Soribel - posted on 03/15/2012

she lives as long as you care for her. don't worry about that instead enjoy every minute and work as much as you can to find therapies, program not only rely on doctors seek for your self and then ask them. thats what i did and my son is 10 years old.

Nichole - posted on 02/16/2012

Hi Crystal- My 7 year old son Liam also went without oxygen for at least 25 minutes. He has many issues but to narrow it down a little he has a feeding tube and a suction machine (we opted out of a trach ) no gag either. He has seizures and is on the ketogenic diet to help with the seizures which has been very helpful but our big issue right now is his hips. He will be getting surgery next week and I'm a little freaked out about it. How old is your daughter? I would be happy to answer any questions. I'm new to this site and would love to connect with other moms going through the same thing. I wish you well and hope to talk soon.

Christy - posted on 12/04/2010

My middle child was orignally diagnosed with severe cp. We were told that he'd never walk, talk, sit up, and that he'd be a vegtable and we should put him in a home because it would be too much work to take care of him. He was born with the valve that leads to the lungs with the oxygenated blood stuck together (Pulminary stenosis) so although he was breathing ok, he wasn't getting very much oxygen. His coloring was deep blue/purple until he had his heart surgery at 5 weeks old. He had issues with his gag reflex and he also cannot feel when food is in his mouth. I wanted to let you know that there is hope. Through early intervention and constant physical therapy, I'm talking day and night we would work with him and therapists would come in, he is doing great. He began using a walker at first, but now he walks on his own. He does have to wear braces at all times on his legs, but he walks without assistance, except for big steps or long distances. He began talking not too long ago and now will not be quiet at all. And he was finally potty trained too! He is now 7 years old and although he's delayed in his fine motor, acedemics, and with behavior issues, he's doing so well we cannot belive it. I guess what I'm saying is don't give up. Get your daughter into a physical therapist, speech therapist, developmental therapist, and occupational therapist as quickly as possibly if you haven't already. There are therapists that work with children from birth to age 8 for free through early intervention programs. Keep pushing her, don't let her give up on something she is trying to do. I cannot say she will have the same progress that our boy did, but if you keep pushing she'll have a much better lifestyle and posibly more mobility later on. When she hits her toddler years if she is still not talking you can request devices that will speak for her that you can teach her to use. They can be push button devices or they even have devices that read where the eye is going that can speak what she wants. When you're changing her diapers or playing with her, keep moving her limbs as much as possible so that the muscles do not become underdeveloped or really weak. The muscles can waste away if not being used. Try to do some resistance with her muscles, like pull her legs straight out and then bring them up in the bent position like she's marching as much as possible. Is she hypotonic or hypertonic, does she have really floppy muscles or are they very stiff? I hope I've given you some hope and some useful information. You can get through this. It will be hard at times, but she will do things that will make you proud.

Rachelle - posted on 09/28/2010

hi my son is 6 he has a very delayed gag reflux now when he was a newborn he had nno gag reflux at all by 11 days old it improver. He has severe cp but he is 6 now we were told he woulfdnever do anaything because he is brain damage is so bad. With extensive therapy and and stubborn mom he can sit unsipported now, scouts on his bottom, and walks with a gait trainer, he still is total care unable to feed self dress or anything else but he has come leaps and bounds and continues 2. He eats pureed food. He does not have a trach though. if you have any questions please ask

Rhon - posted on 09/24/2010

Hi my daughter was born at 25 weeks and weighed a pound and a half. she had a lot of complications including a grade 3 brain hemorrhage and eventually had infantile spasms which led her to have severe brain damage over her whole brain. She is classed as having spastic quadriplegia cerebral palsy and considered severe. it took over 2 years to get the diagnosis cos no one wanted to tell me the truth. from day one i have been told that she wouldn't live long and she is now 16 going on 17. she goes to school in an alternate curriculum and has a wheelchair. she had two hips replacements and soft tissue releases and a gastrostomy tube and fundoplication. she doesn't have a trach but there was a time they told me she couldn't swallow. well she has a gag reflex yes but she tolerates a battery operated toothbrush and she can drink small amounts of water. she has has projectile vomiting and has GERD so sometimes she has reflux and coughing but seldom vomiting. i split 5 feeds into 10 to manage the amount of formula she gets per feed and i burp the tube often. this manages the gas that might build up. she also has epilepsy and has had some close calls but is failry stable now. i have set up guidelines for home and schoon on what to do in case of seizure and i have a rectal Diazepam gel for her, which helps to make the seizure milder if not stop. that said, her health is stable and she recovers well from colds and flus because she gets such good nutrition from the formula she is on.



i was told she would not survive birth and then that she would not live beyond a couple of years so i should give her up. I could not imagine my life without her and each day, though tough sometimes, is precious. no one can tell you how long your daughter will live. God detemines that but you can give your daughter lots of love and good care and it will make the biggest difference in the world to how long she lives knowing that she is loved and treasured. when i was told she could not swallow, i panicked till i realized that she had to swallow some or she would choke on her own saliva. she is very verbal and although not talking in sentences, can communicate her wants and needs and hold a conversation. so this is a far cry from a child who was not considered viable at birth, to a vegetable for life, to not walking, talking or going to school, to being someone who is around and about in the community and making her own friends and her own mark in the world.



She is assessed by Occupational Therapy, Physiotherapy, Speech and Language Therapy, Seating and Orthotics as well as a gastroenterologist, orthopedic surgeon and neurologist. these services are fairly standard for children with severe cp or so i have read. she has multiple disabilites of course and i am a single mom with disabilities but i have a fair amount of support, not enough but enough to keep going.



if you can, contact the nearest association for cp and get the a parents' guide. it's a handbook that tells you about the different things to expect and really helped me sort out what was going on and gave me some way to ask the right questions. also there might be a support group in your area or the hospital can hook you up with one.



as for her function, well we know her likes and dislikes and there is no denying she has a mind of her and a spirit that is strong and vibrant.everyone has some level of ability. there are many highs and lows but she has a good sense of humor, beautiful singing voice and a memory for songs that I envy, i think she just loves living in the moment and i have learned to take it one day at a time but celebrate everything. she will soon be 17 and is in her 12th year of school. she obviously wants to write her own story of her life and i am along for the ride.i would not have thought it possible to get to where we are today but life has a way of turning you in the right direction if you ask for help. i am glad to see you are reaching out cos i know how lonely it can be....

Marie - posted on 06/08/2010

Not at this moment. I have a Master's Degree with a focus in healthcare, so I'm up on my son's medical issues and how to take care of him \, when to call the doctor, when to call 911, etc. The hardest part is that doctor's don't know the answer and won't know until time goes by. It's different for every child. I live in Janesville, WI. Right now he doesn't have nursing services, but he had it for about 6 wks when he had his hip surgery last year. Right now I can take care of him myself, but eventually I will have to hire a nurse when I can't take care of him anymore. Keep your head up. I know it's hard to do. Trust me I know. If you need anyone to talk to, I'm always here.

Crystal - posted on 06/04/2010

i live in st.augustine florida. that's wonderful to hear that your 3 yr old can talk. i hope by the grace of god someday theresa will talk, although after the trach surgery in december they took what voice she had . but maybe one day she won't need the trach. and yes i can always use someone to talk too. hope to hear back from you by the way my 2yrold was born with gbs but thankfully she was'nt affected by it. but i know what your going through..question do you have to have nursing for your 3 yrold?

Marie - posted on 05/28/2010

Yes, my 3 yr. old son has cp, along w/a tremendous amt. of other health/medical probs. My son was 5 wks premature, born with GBS, sepsis, pneumonia, and he was blue and not breathing. He had to be put on ECMO. He's had numerous blood transfusions. He has acid reflux, epileptic seizures, hydrocephalus, tracheomalacia, he's had his tonsils & adenoids removed already too. He has also had 20 surgeries. He's developmentally delayed. He cannot walk or talk or eat normal food. He can say momma, dadda, baba, nana, and hi, he army crawls, and is pretty happy most of the time. He's a big flirt. My question Crystal is what city and state do u live in? If u need someone to talk to, I'm here or have any questions, I'm here.