Cerebral Palsy

[zaksmum]

My son Zak is now 14 months old. He has severe spastic quadripligic cerebral palsy, West syndrome, gastrostoy fed due to GORD, partially sighted, mild microcephaly, epilepsy severe developmental delay, can't hold his head up, has no control of movement, and is more or less still at new born level for everything. All due to having hypoxic iscaemic encephalopathy stage 2 at birth. No matter how hard I try, none of his team of experts will give me an answer to a question I find impossible to ignore. I understand why they say, no one knows, we could all get hit by a bus tomorrow, it all depends on what we do to help him and so on, and if one more says "we don't have a chrystal ball", I will stick that chrystal ball somewhere they really won't appreciate! I don't want an exact number, I don't need to be treated with kid gloves. The average life expectancy of a human being is around 75 years, I am not going to get to 74 and sell up, go on holiday and live as though I am not going to be here tomorrow. That is all I want to know. How long can I realistically have my son. Just a ball park figure. How long do people generally live for with these conditions???? Because no one will tell me, the only way I have of finding out is by comparing him with other children I know. Two I know personally are 6 and 11 years old, both have been given an average life expectancy of 20 years. Is it the same for Zak. I am not intentionally morbid, I just want to fit a full life expectancy in to what ever time we have together and I need to know what I am dealing with. I love my son more than life itself and will never forgive myself if I didn't give him everything in my power before it is too late.

[tash30]

hi i have a daughter who has the same and the life expectancy that i was given was 19 to 20 its really sad i cant believe it myself but she has beaten the odds before i hope she can again...... this was the first question i asked when i was told she had cp....my little girl is 8 she and i love her to death and wouldnt changer for the world and i also love her more than life i know what u are going through right know i wish u and your child the best...... every day is a new and special day ....i hope i have helped in some way

[zaksmum]

Thank you so very much for your honest reply. I guessed that it was going to be around 20 years. At least I can start to make plans for Zaks life. If he then lives way past this estimation, we will party and celebrate his life, making every day count. I will be less inclined to sit back and watch and more inclined to really get stuck in. Things like Derian house, that I would have put off till a later date, I can now complete the forms they sent me and get down there and appreciate everything that is on offer.
Zak has now developed Lennox Gastaut Syndrome. I don't know if that has any more of a baring on his life expectancy or not, But I will not be defeated and I certainly will not give up trying to make my little boys life amazing regardless of his disabilities.
Once again, Thank you!!xx

[tash30]

your welcome my daughter hasnt got Lennox Gastaut Syndrome it only occurs in boys.... i cant really help u with that one. Im glad that i was able to help i wish you guys all the luck in world....

[prisrb]

WHAT? Is it really around 20. My daughter is 19 and she was just diagnosed 2 weeks ago with CP. She has a mild form of CP with symptoms of spastic diplegia. She has been to many Dr.s thru out her life for many things. When she was about 4 yrs old we were told that her legs should be operated on because her knees rubbed together when she walked or ran. This has caused her have many falling accidents over the yrs. We were told that it was due to her sitting in the W position (opposit of indian style) but that she could grow out of it. We were also told that she would be in a lower body cast for 6 months and we didn't want to put her that kind of pain if she "could going to grow out of it" and at age 5 we were told by a Dr. that she had a slight hearing loss in one of her ears but we shouldn't worry about it and this was due to ear infections. At age 12 or so we were told that she had slight scoliosis and that she would eventually straighen up with growing into a teenager. She has had a learning disability since 3rd grade and was in Special Ed classes and special physical ed classes from 3rd-7th then we moved to another State and they didn't have Sped classes so they put her in reg classes which had a helper (supposedly helping her) but she started to fall behind. She dropped out of school at age 18 against our wishes. She was a Sr. but classified a Sophmore because of lack of credits.
When she was around 14 she developed emotional problems and was diognosed Bi-polar w-pshcotic tendensies and a anxiety & anger problem, ADD, PTSD, Insomnia. When she was 14 she developed kidney stones and had to have lithotripsy to remove them and her back started to hurt after that and it would cause pain every so often. When she was about 16 she had teeth problems and had to have all 4 wisdom teeth removed. At age 17 she started having cronic back pain and it has gotten worse within the last yr or so she has started having shaking in her hands (kind of like small tremors) and she will blank out when I am talking to her like she is having a peti-mal seizure.She also has been getting migrains almost every day (But I don't know I don't know if she really is or if she is just being a hypochondiac. She did have a MRI 2 weeks ago and the Nerologist said it looked like there was no seizure activity but said she did have CP. She has to go to the ER for pain shots and meds to relieve the severe pain spasms she gets alot. She is 19 now and is in constant pain!!! Does CP cause pain??? Or could she just want the attention?

She has no concept of money and I have to wash her hair at least once a week cause she won't wash it. We have to tell her take a shower reg but she won't wash her hair or brush her teeth and she will put on the same dirty clothes she was wearing before the shower. She won't use deodorant unless I remind her. She doesn't remember to take her meds so I have to remind her even though they are organized in a weekly pill box ( she will take the wrong day or time of day if I don't watch her). She never finishes a task. Her room is never clean. I have always thought that it was cause she just wanted to give me hard time or be rebelious but now, I know why and it tears my heart apart.

Because she is getting worse with her health does this mean she is going to die at a young age????
AND WHY DIDN'T ANY OF THE DOCTOR SHE HAS SEEN OVER THE 19 YEARS OF HER LIFE EVER PUT 2 & 2 TOGETHER CAUSE SHE WOULD HAVE THE SAME PCP FOR A LONG TIME!!!!

PLEASE ANYONE LET ME KNOW!!!!!! If they have any answers or advise for me. PLEASE!!!![moderator note: e-mail address has been removed] re: Nicole DAB

[zaksmum]

Hiya sweety, number one don't panick. I am very sure your daughter will be around for a very long time to come. If I have learned anything over the past 18 months, it's that noone truly knows what is around the corner.
Alot of what you describe sounds to me like normal rebelion. Yes muscle spasms in CP hurt. Zak (my little fella) has severe muscle spasms and he frequently calls out in pain, even though he is non verbal. Zak is a very complicated little boy. His CP is extremely severe, but is also the least of his problems. He had a history of infantile spasms which is a severe and rare form of epilepsy. This recently progressed to Lennox Gastaut Syndrome, which is basically the same but is deteriative. This condition along with the many, many medications he requires mean that his future is uncertain. He will probably (not definately) develope autistic spectrum disorders, phsycotic behaviour, worsening seizures, developmental and physical regression. But always remember that Zaks case is extreme. He was diagnose with Severe spastic quad CP within weeks of being born. I would be happier in the knowlege that your daughter didn't get diagnosed for so long. This would suggest to me that the severity isn't as bad. So I certainly wouldn't panick too much. The 20 year life expectancy, though a fairly realistic figure for us, is not , in my opinion, a realistic figure for your daughter. I have had the pleasure of meeting many people with all different sorts and severities of CP. No two are the same, and lots of them are adults (some over 40). It breaks my heart into a million peices to know that I could loose my precious son any time between now and 20 years time. I try to fit as much love and happiness into every day, because, lets be honest, no one knows when our time is up. Zak can't see, hold up his own head, talk, smile, sit, stand, walk,.....He has over 40 seizures of varying types every day. He has already been in status epilepticus twice since his diagnosis of LGS only 2/3 months ago. His future is going to be rocky to say the least. It sounds to me like your daughter, although she might have some hurdles to overcome, will hopefully outlive you. Please email me at [moderator note: e-mail address has been removed] if you ever want to chat. Or if you use facebook, find me Mags Hall, my profile picture is of my little fighter Zak, asleep with his arms up like he's showing off his muscles. Good luck and don't worry. x