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Old 09-28-2010, 09:12 PM   #1
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Unhappy Baby with CP since birth, mom in early 20's looking for hope & answers

My baby had respiratory distress syndrome with awkward movements from birth. He was also a meconium aspiration baby. We spent 2 months in the NICU and 2 months after we left, he was diagnosed with spastic quadriplegia cerebral palsy with mixed tone.

This has been life changing for everyone in my family. I'm only 21 and I expected to be able to get on with my life after he was born like all my other friends & family members who have babies. But, I've had to quit working because he does not qualify for nursing. I've had to move back in with my parents to a tiny bedroom that I share with my son (I'm ok with sharing with him, just not the six-tiered shelf full of medical supplies).

I'm also single with currently no child support coming in to help. My family feels like they're paying the price for my mistakes. They are some of the few that are qualified to be alone with my son. I can't even shower until someone is available to watch him & they have jobs during the day.

My son has a trach and mickey button. He's fed every three hours and takes aobsolutely nothing by mouth. The purpose of the trach is so we have a less traumatic way to suction him since he cannot clear his own secretions. He does not suck or swallow to our knowledge. He's pretty stiff when he's awake, although I can tell a difference since he started the Baclofen. However, I have been told that he will probably never walk. His MRIs have shown nothing, but he is also under 1.

I would just like to know if anyone is experiencing anything remotely similar. It can be pretty disheartening for me when I get to thinking about it. And, I have no idea how he ended up with CO in the first place. No doctors said anything about placental abruptions or strokes in utero. A malpractice lawyer even told me that my preeclampsia/pregnancy-induced hypertension has nothing to do with CP. No one can answer any of my questions, but after being through hell an back, I feel like my son and I are entitled to them.

 
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Old 09-29-2010, 11:16 AM   #2
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Re: Baby with CP since birth, mom in early 20's looking for hope & answers

Quote:
Originally Posted by MommyMelissa View Post
I would just like to know if anyone is experiencing anything remotely similar. It can be pretty disheartening for me when I get to thinking about it. And, I have no idea how he ended up with CO in the first place. No doctors said anything about placental abruptions or strokes in utero. A malpractice lawyer even told me that my preeclampsia/pregnancy-induced hypertension has nothing to do with CP. No one can answer any of my questions, but after being through hell an back, I feel like my son and I are entitled to them.
Hi,
Its a hard road your on, I empathise with you entirly. Although my son does not seem as affected as yours as he is diaplegic and has no medical needs, I too had pre-eclamsia. I am assured by every doctor that, in my case, it was the pre-eclampsia that caused my sons CP.
Your right you are entitled to answers and my adivce would be to see a different lawyer. If not montiored properly, pre-eclampsia compromises the oxygen flow from mother to baby as the blood vessles tighten and not enough oxygen can pass through them to get to the baby and so the baby becomes oxygen starved causing the brain damage.
A lawyer can help you find the answers you want but they are costly. The best place to start is with your sons doctor, ask as many questions as you need, write them down if you need to, so you remember.
The hospital should have kept all your medical records, here in the UK even trace monitor read outs are kept. If you need / want to go down this road you need to find someone supportive who knows where to get your records and knows what they're looking at. Start with asking questions at your sons appointments, then look for a supportive lawyer and go from there. But as a warning, anything going through a lawyer takes a very long time.

Keep looking forward, the future is brighter than you think at the moment. CP is non progressive, also there is alot that can be done to help him. For your own support see if you can find others mums in your area of children with CP or any extra needs. Thats the place I have found the most amount of support.

Hope this helps x x

 
Old 09-29-2010, 05:27 PM   #3
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Re: Baby with CP since birth, mom in early 20's looking for hope & answers

Hi there, I feel for you, I remember what it was like when my little one got her diagnosis. I wanted answers, I wanted to know them yesterday and I wanted to know what the future held. Unfortunately with CP everything is a waiting game and I have found if I try to look to the future it's too overwhelming so I take each day as it comes.

My daughter has spastic quad CP level 4, which basically means she's classed as severe and will probably never walk unassisted. BUT we are so very fortunate that she can talk, swallow and do many many things. We too have no answers for her CP. She was a full term baby (12 days late actually), she was healthy weight, no birth trauma and her MRI's (she's had 2 now) were both normal. We've had her tested for almost every possible metabolic and genetic disorder and they are all clear. I just have to accept there is no known reason for her CP.

I live in Australia so our health system is different but I got Leacie into Early Intervention at about 18 months old (there was a long waiting list) but prior to that we were doing private physio. Physiotherapy, occupational therapy and hydrotherapy have helped her immensly, she's also had botox, splinting for her hands and AFO's for her feet. She's had an adductor release which is where the tendons in her groin have been severed to stop her crossing her legs constantly. They are monitoring her hips but she'll probably be looking at a hip osteotomy when she's about 8 - 10.

I know it must be very hard, I know it must all seem overwhelming but you will learn to adapt. Your life will be different to what you expected but that doesn't mean it will be a bad life. Trust me your little one will bring you so much joy and happiness as well as sadness, and you will celebrate each and every little accomplishment that other parents take for granted.

Can I suggest you have a look online at a poem called "Welcome to Holland", it really puts our lives in perspective.

I hope you manage to get some help soon. Have you looked into respite care? I'm sure you'd qualify, it's not much but very much appreciated when you do get it (I know mine is).

((hugs)) to you, we've got big shoulders and a open ear for whenever you need to talk.

 
Old 11-06-2010, 10:08 PM   #4
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Re: Baby with CP since birth, mom in early 20's looking for hope & answers

Quote:
Originally Posted by MommyMelissa View Post
My baby had respiratory distress syndrome with awkward movements from birth. He was also a meconium aspiration baby. We spent 2 months in the NICU and 2 months after we left, he was diagnosed with spastic quadriplegia cerebral palsy with mixed tone.

This has been life changing for everyone in my family. I'm only 21 and I expected to be able to get on with my life after he was born like all my other friends & family members who have babies. But, I've had to quit working because he does not qualify for nursing. I've had to move back in with my parents to a tiny bedroom that I share with my son (I'm ok with sharing with him, just not the six-tiered shelf full of medical supplies).

I'm also single with currently no child support coming in to help. My family feels like they're paying the price for my mistakes. They are some of the few that are qualified to be alone with my son. I can't even shower until someone is available to watch him & they have jobs during the day.

My son has a trach and mickey button. He's fed every three hours and takes aobsolutely nothing by mouth. The purpose of the trach is so we have a less traumatic way to suction him since he cannot clear his own secretions. He does not suck or swallow to our knowledge. He's pretty stiff when he's awake, although I can tell a difference since he started the Baclofen. However, I have been told that he will probably never walk. His MRIs have shown nothing, but he is also under 1.

I would just like to know if anyone is experiencing anything remotely similar. It can be pretty disheartening for me when I get to thinking about it. And, I have no idea how he ended up with CO in the first place. No doctors said anything about placental abruptions or strokes in utero. A malpractice lawyer even told me that my preeclampsia/pregnancy-induced hypertension has nothing to do with CP. No one can answer any of my questions, but after being through hell an back, I feel like my son and I are entitled to them.
hi my son was diagnosed with right annasymetrical quadrapledic cerebal palsy.when he was first diagnosed i was devestated, i was a single parent with another baby on the way and absolutly terrified. i was told he would never talk walk eat sit an fact they said he would nt survive,and if he did he never do anything for himself. my son stopped breathing several times a day and had to be revived it was so scary and i was the only person who was able to look after him.because the drs gave him such a bad out look for his life he was offered very little physio or speach therapy all the things he needed daily so i learned myself mainly thro books and i learnd him how to talk he didnt even babble or make any kind of noise until he was 1half. it took years of fighting with schools and drs anf trying to get the therapy he deserved, but with a lot of hard work and no family to help me he still done it. he is 21 now and a very independent young man. i was 18 when i had him and i wanted to no everything that you do now. youv every right to feel the way you do and wanting answers is only natural. i got my son tested for everything that may have caused him to have cp but they never gave me any answers.i got myself a lawyer and spent 5 years fighting to find out the truth. when i did i was devesteted it turned out that because my son was born when i was 6 months pregnant he needed oxygen no ventilator and he done very well infact he was home after only 5 weeks.while in hospital he was getting 100% oxygen 24 hr day and the drs decided to take him off it for 2 mints to see how he coped, unfortunatly the nurses were so busy they left him off it for over 5 mnts befor the alarm was raised.when i found this out i didnt feel any better and the drs at the hosp told me to concentrate on helping my son to have a good quality of life instead of looking at what the cause was.they denied that this was the cause of his cp. i was so angry that i wanted to take then to court but i needed 2 drs to agree this was the cause and they had to go to court and state this.my lawyer tried for years but although he found drs to agree they wouldnt go against theyr own.i got nowhere.my son still had the cp and still had a hard life in front of him.i have to tell you that i agree with the other comments that you should try to find a support group for help for you and they people there will help you more than any dr.its a hard rd but my son has always been a happy person. it was only me who wasnt happy from time to time as i had to fight to gt him every thing he needed.its hard to look at other children who are the same age and not compare what the difference is , as you want your child to do all the things other children are doing. i think you seem like your a little down and in need of some help with your baby. you can have a good life its not all doom and gloom. you need to be happy so your son can be happy.get him lots of move ment and streching will help with the tightness in his limbs.you should look up the bobath its a great place for children with cp.dont blame yourself your not being punished for anything.you may even have post natal depression, i dont no but you seem so isolated and alone and my heart goes out to you. i tell you this if i knew how to set up an online support system for familys of children with cp i would.i remember how desperate i felt at times and ill tell you i still do sometimes.keep your child stimulated and dont leave him in the same position for long.strech excersice and movement will help him a lot and talk to him all the time. iv never had any restbite but i do know mothers who have and its really helped them.do whats right for you . i wish you a happy life and ill keep you in my prayers.your 21 and that is young to do this alone,i was 18 but as i say there will be hard times but also there will be great times and you and your boy, you both can have a good life. please get some support for your self find a local group you can meet other mothers/fathers and they will give you strength to cope.
all the very best to you both.if you want to ask anything then please do ill answer you asap. good luck and try looking up bobath your son needs a lot of stimulation to be independent in the future. best of luck to you.
one last thing can you try to talk to family and let them know how hard you find your life.if not find some one whom you can talk to it will help you to fee l better. bella gal keep smiling

 
Old 01-31-2011, 02:38 PM   #5
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Re: Baby with CP since birth, mom in early 20's looking for hope & answers

my son suffer oxygen at birth lead to him to have cp i have to suction my son every min ,sec, hour i know what u going through there is help and i am happy to let u know i help as much as i can but i can tell you to enjoy ur son life u have to do 200%much much more i can tell u more regardin getting care 4 ur son

Last edited by sam051109; 01-31-2011 at 02:39 PM.

 
Old 04-13-2011, 08:27 PM   #6
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Re: Baby with CP since birth, mom in early 20's looking for hope & answers

I was on this forum looking for something with my health and noticed the cerebral palsy section and came across your post and had to register and reply.

I was just like you, I got pregnant on my 20th birthday. At 26 weeks she was born weighing 2 pounds and full ICU, ventilator and all for 93 days. I was told to expect her to be non-functional, the brain damage was so severe they didn't think she would ever learn to swallow.

I took her home, feeding tube, heart monitor and oxygen tank strapped to my back and started reading. I had to fight for the CP diagnosis to begin treatment. She started intensive PT and OT, sometimes as much as six hours a week. She constantly quit breathing, had seizures and a lot of pain from the muscles being stretched so tight. We had nonstop doctors appointments and tests sometimes two or three a day. They were surprised enough when she started eating, she floored them when she started talking.

As soon as she turned two I put her in an early intervention program where she also received therapy and she had a teacher that I credit for changing the whole trajectory of her progress. She gave me the name of a physical therapist who guided me the next eight years and told me that my daughter definitely had attention problems but she wasn't in any way affected intellectually. I had honestly not given thought to her being in a regular classroom and back then it wasn't as much encouraged. She also told me I could potty train her which I thought would be impossible since she couldn't get there herself but it only took two weeks into the program. The therapist recommended a great orthopedic doctor and I surrounded her only with people I trusted fully. The battles I have fault with the schools here are legendary but I will tell you the more meetings you call to dispute them telling you no the closer you will get to you goal. They just agree with me now as long as it doesn't cost them anything.

When she was three she started walking with a walker but was really unsteady and tired quickly. I found a therapeutic ballet class and later horse therapy group (a lot of these places offer scholarships) and got to know a lot of the other moms, those weekly run ins can do so much to lift your spirits and my daughter just placed third in a horse show Saturday, she takes a lot of pride in it and has a wall of trophies and ribbons as filled as the quarterbacks

When she was five the muscles got so tight even with therapy and daily stretching a doctor recommended an extreme surgery where they lengthened her hamstrings and heel cords. It was the worst six months of my life and I felt so much guilt when she couldn't stand a year after the surgery.

They did another surgery to move a tendon that was pulling too tight in one foot and I started her back in intensive PT again. I had a rental wheelchair and the therapist recommended measuring her for one to be used for prolonged durations. I truly think the thought of being in her own wheelchair without someone prompting her to use her walker scared her because at her grandmother's the following weekend she got up and started walking. I still cry thinking about it. It was two months before her seventh birthday and later her therapist said it was the most remarkable thing she had seen.

She doesn't walk perfect, if you see her sitting you may not even notice but moving you can tell. She is fortunate to be very pretty and most kids are able to relate to her. She considers herself an ambassador for cerebral palsy kids. Her classmates constantly tell her about a kid they met out somewhere with cerebral palsy (who they probably wouldn't have struck up a conversation with otherwise) I think they think they all get together and have club meetings or something but it's amazing the lives she's changed.

She is followed at UVA and according to them her muscle measurements show it to be impossible for her to walk and they fuss at me for making her walk everywhere but she is now almost fifteen and I still ride her almost every moment. Her neurologist says she has rewired her brain to compensate for the damage but even they are astounded by her progress. Of course I am her biggest fan.

I've fought with doctors, principals, the insurance company. I have begged and cried, I have absolutely no shame now when it comes to my kid and I will knock down anyone who stands in her way of reaching her goals. Administrators often tell me after the dust has settled that they may not admire my tactics they have to respect both my perseverance and results. I was in college when I found out I was pregnant with her and in one month from today I will finally graduate (I had to go back when she got to middle school, it's amazing how much your forget when you fill your mind with constant medical terminology and o2 stats).

I've lived in basement apartments and drive a twenty year old car. It took me twelve years to attempt to resume my life and I don't regret a single second of it. She dares doctors to tell her she can't do something because that is just incentive to prove them wrong. The local news has featured her several times and she was a Children's Miracle Network spokesperson for three years. Her friends help her in school, she hasn't had an aide since elementary and she is without a doubt going to college in three years, even if I have to go to her classes, write her notes, and transport her books.

Don't give up, don't quit fighting. Yes it is really expensive, yes it will take all of your time, energy, and emotion but it does get better and if you give it everything you never have to play "what if" with yourself. Don't let anyone make you think because you are young you are ignorant. Be informed and be firm. Trust your instincts. No one will fight for your kid like you will.

I had to have a lot of counseling for depression and anger and if you start feeling overwhelmed please seek out mental health services. I went through a free clinic to a regular office and they provided my medicine when I needed it. It really helped me focus my energy on things I could have an affect on and I prioritized so much better.

Every kid is different and I am so thankful I was able to find the right people to help me along the way. Just know that your child is different too and that nothing is impossible. Believe in the impossible but prepare yourself for the very worst just so the reality can supersede your expectations.

Sorry this is so long, you just reminded me of me long ago and I was compelled to share.

 
Old 04-23-2011, 05:26 PM   #7
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Re: Baby with CP since birth, mom in early 20's looking for hope & answers

Our daughter suffered birth trauma (an abruption) and is much the same way as you described - she has spastic quadriplegia cerebral palsy with mixed tone, a baclofen pump, and now has Grand Mal seizures every so often. She has a G/J tube (no food by mouth) and has had numerous surgeries to improve her quality of life.

I cannot begin to understand how difficult this must be as a single mother, as I am married and have somebody else to suffer with. But it dramatically changes your life, regardless. I'll tell you this -- it can get better. It took us two+ years to manage any kind of stability, especially before her stomach surgery when she was having reflux and throwing up every single night. After those various surgeries, though, things are SO much better.

Once you establish a routine, if possible, it can be easier. As your son gets older, and friends and family begin to realize the full scope of what you're having to deal with, you may find more support in time.

My suggestion? Don't manage this alone. There are support groups out there. There are government programs that may help assist with medical bills, including personal care hours where a caregiver can come and help take care of your child. You can also apply for respite care through the state; if available, you can have your child cared for by a professional and go out and do something for yourself. Disability support groups can often assist you signing up for such programs.

I'll be honest and say that you do have a hard road ahead, especially as he gets older. But you may also find it deeply rewarding in a strange kind of way. My daughter may never have the kind of life I wish she could have, but her endless smiles and laughter, positive attitude, and endurance in the face of hardship has made our lives better. In many ways, serving a child makes me appreciate my children better -- especially when I see others taking their own kids for granted.

Worn down? Yes. Overwhelming? To be sure. No one will fully understand what you're dealing with unless they are experiencing the same thing. But it can be done. Take time to look for help and support; it's out there, even if it take time to find it.

Last edited by estavares; 04-23-2011 at 05:31 PM.

 
Old 04-27-2011, 05:56 PM   #8
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Re: Baby with CP since birth, mom in early 20's looking for hope & answers

My children are both healthy, thank goodness, but I have 25 years experience working with brain injured children. Your son is NOT hopeless! There is so much that can be done with our CP kids, and so many options to make their lives, and yours, as full and rich and joyful as possible. Just try to keep that in your mind. I have a few suggestions. One is movement movement movement! Another is stimulation stimulation stimulation! For a child with CP to reach their potential they have to be moved and stimulated. Since severely affected children can't do these things for themselves, we need to do them for them. And a very important thing to keep in mind is that, no matter how they may appear, THEY ARE NOT FRAGILE!!!! Your child has a brain injury that resulted in a movement disorder. That does not make him especially breakable. The more you move and stimulate him the better his breathing, ability to clear his own secretions, and potential to move on his own will be. Move his arms and legs, hands and fingers, head and neck. Bounce him, wiggle him, jiggle him, stretch his arms and legs, pull and push his little fingers, make his legs do bicycles and sing to him while you do it. If his cardiovascular system can handle it, lay him upside down along your legs....sit with your legs at an angle and lie him on them so that his head is lower than his feet...this increases circulation to the brain, stretches the back, and most kids LOVE it.
Give him lots of tactile stimulation. get a soft, natural bristle brush and brush him all over his body, rub him with different textures of cloth, let him splash in water, (if he cant splash you splash his little hands and feet for him), lots of singing, playing, talking, laughing, movement..keep him in the room "where the action is" as much as possible, include him in life as much as possible, and most importantly TREAT HIM LIKE A NORMAL BABY as much as possible. ENJOY your son. Don't let his medical issues overwhelm you. He's your baby, he's your son, and he can be your joy. Again..play with him, sing to him, dance with him, tickle him, move him, brush him, and don't treat him as if he's made of glass and will break if you don't handle him with kid gloves. He's a little BOY. Treat him like one It will only benefit you both!

I remember the first time I walked into the brain injured center that was my first job. The Fitchburg Center for Brain Injured Children. It used the Doman Delecato patterning method. There was a kid hanging by inversion boots from a doorway! Another kid was strapped onto a spin board and being spun around and around in one direction, SUDDENLY ABRUPTLY STOPPED, and then spun in the other direction. On a table a little girl was being brushed from the soles of her feet to the tip of her head while the lady working with her said "Brush on Stephies foot! Brush on Stephies food! Brush on Stephies toes!" etc. A little boy was in a dark room having colored shapes projected onto the wall above his head, another little boy was being "patterned" meaning five people had him on a table and were moving his body in a swimming pattern while they sang. I thought "What in the world are they doing to these kids!?" and I almost turned and left! But then I noticed how the upside down girl and the spinning boy were GIGGLING! I stayed and I learned.
(A year later the little girl who was being brushed the day I walked in, who had drowned and been resuscitated but was severly brain injured and nearly comatose, was able to sit up on her own and say "french fry" lol.)

There is so much hope and so many things you can do to make your life and your sons life the best they can be. Hang in there!

 
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