Screaming that is driving me mad

[JacqHein]

I don't know if this is the right way to do this, but we need help urgently.  I have twins boys that was born at 27 weeks, they are now 15 years old and both where diagnose at 9 months wqith quadroplegic cerebral palsy.  They can not talk, all though Heinrich uses his body to tell us what he wants, he is the youngest of them and is very laid back.  On the other hand Jacques is driving us mad at the moment, he his a mickey peg feed in and get his food trough a tube.  Jacques get episodes where he screams on the top of his voice and that normally continues for a about 10mins, he bites himself and others he uses his nails to hurt anyone that comes in contact with him, he does not have one t-shirt left that has no hole in it he rips them appart.  He has being hospitalised a few times where they sudates him for a few days so that he can get over this.  He was on Tegretol and Riseprdal, our peaditrician even increased the doses to see if he can help him.  We have taken him of the meds to see if there is a change, nothing.  They are at home in the day and get stumalated every day to not get boared, we take them out al least once a week.  We don't know anymore.  Is there some one out there that can help us, or just give us other directions please......
Thanks
Zenobia

[mommyofnathan]

Hallo,
I can identify so much with you.  My son does sometimes scream for most of the day.  He also doesn't sleep.  I have found that sometimes it is GI problems and sometimes it is neurological irritation.  We have only been doing this for two years now and it doesn't make me feel very good to know that we will be asking these same questions 13 years from now!  Just a thought, does he get Baclofen? I have found that sometimes it helps to give an extra dose of Baclofen together with a pain killer after a friend of a friend who was in a MVA was injured so badly that he is a Quad now, does get intense pain from muscle spasms.  Maybe ask your doctor about that?  

[JacqHein]

Jacques get tube fed with a formula that has being working good for the past 3 years. I sometimes think it is mainly neurological irritation that could be the problem.  He had a big hip operation about 3 1/2 years ago, and we know that the same hip is dislocated, the ortopedic surgeon said that it can not be painfull, but I do not agree with him as I can see Jacques is touching his leg most of the time.  His dr has put hom on pax and valeron drops.  I will ask his dr about Baclofen, and see what he says about it. I must say he had one of his better weekends only screemed 3 times.

[mo25]

I also have two kids with cerebral palsy my oldest daughter tatiana is on Baclofen and its a muscle relaxer. She's taking it cause she was always tight and now she is much better I'm not sure if tight muscle hurts I think it does, but you would have to ask your kids doctor.

[Swampfoxer]

Have any of you asked your pediatrician for Physical Therapy for your children instead of all the drugs?  If muscles are spastic (tightening up because they are not being used) they will shorten and become more painful.  Learn what the PT's do for this and begin making a routine around it.  Take them to a different orthapedic if you do not agree with diagnosis of the first one for a 2nd opinion.  Keep them moving and stretching so that they get some help with the pain and it will reduce.

[mo25]

Both my kids get P.T., O.T., Speech, special ed. teacher, nutritionist. But without her being on Baclofen  she wouldn't be able to do as much as she is doing now. Her teacher says she's able to move more and something simple as getting her cloths off and on is much easier. And the Physiatrist was the one who prescribed the baclofen, and my girls orthopedic agreed on it.    

[mommyofnathan]

I agree with mo25.  Without the Baclofen, the PT will be a very difficult exercise indeed.  

[JacqHein]

Jacques and Heinrich received P.T since they where 9 months old, and we are still doing strecthing exercises with them everyday, as they are now 15 and it becomes more difficult for us to do propper P.T.  They use to be very small until a year ago they ***** 7-8 years clothing for about 3 years in a row, but in this year(2007) they grew so fast that they are wearing small adult clothing they jump 4 sizes in one year and have a lot of strech marks because of that.  They are not on any medicine to relax their mucles but we need to do something because you can see that something is hurting even when we do the streching exersises.  They already had operations to relax the Hamstrings and is seaing a Orthopedic surgeon now in Feb.

[mommyofnathan]

Hi,
Ask the Orthopaedic surgeon about Baclofen.  Nathan can't talk but I am pretty sure those spastic muscles hurt - why else would he calm down when we give him a pain killer and an extra dose of Baclofen when he is really stiff?  Nathan is mostly floppy, but he is extremely stiff at times and those days we cancel fisio since it is IMPOSSIBLE to do his PT.  Good luck with the Orthopaedic consultation.

[Swampfoxer]

Go check out the website for Assistive Therapy Solutions
and look at the first video with Kayla.  She recieved her motor assisted cycle 5 years ago at Camp Challenge, an Easter Seals camp in Sorrento, FL which is just east of me.
Kayla has severe spastic CP and was in a wheelchair, Drs said she would never walk.  Wellll... ya just gotta check out that first video!  We are about to start working on an Anniversary Party out at Camp Challenge with Easter Seals, Kayla, and the eVO!  She's gone from from wheelchair to walker to crutches to 2 walking canes.  She is on it every day and does sidewalking as well - she goes into her backyard, holds onto the chainlink fence top rail, and walks sideways along the fence.  The same thing can be done in the shallow end of a pool with ankle weights on.