baybeemarlins
08-17-2005, 10:57 AM
:confused: Help!!! My 4yo son, Hunter, is a spastic quad (arms not too bad but with weak trunk) who has been working on worsening tightness in his hamstrings and adductors. It doesn't help us that he is quite tall for his age. We are at a point of needing to make a decision. His neurosurgeon (Hunter has a V/P shunt) is recommending a baclofen pump. His orthopaedic surgeon is recommending hamstring and adductor surgery. He has had botox a year ago twice with 6 weeks success with the first shot and only two weeks success with the second..he has just been growing too darn much for them to be very effective. He has been getting PT, OT, Speech for all of his life weekly and now is in school getting therapy as well. I guess my concern with the baclofen pump is scoliosis (because of weak trunk), infection, and malfunction. The hamstring/adductor surgery concerns me about how long he'll be casted and out of school and how long does it really help for til he tightens up again. I would gladly welcome anyone's personal experiences and advice. I, like all moms, just don't want to make a wrong decision. He has been through so much already in his little life. Thank you and God bless you for your input. :)
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Zagreus
08-17-2005, 12:58 PM
Can you arrange to have the doctors meet and discuss his case? Are all of these treatments indicated or are they alternative treatments? Is it possible to seek a second opinion for both the orthopaedic and the neurological diagnoses? The doctors should be able to help you find specialists for the second opinion.
JellyRJFan
08-17-2005, 05:10 PM
Well, I only really went to a neuro when I was lilke 2, I've been going to an ortho ever since, so I'm not sure if I can be of much help. The baclofen pump is a bit too risky with all the side effects (in my opinion), but lengthenings are really easy to recover from, especially at 4 years old. The only problem I have with lengthenings is the weakness that follows after the casts come off.
baybeemarlins
08-17-2005, 07:03 PM
Thank you Zagreus and JellyRJFan for replying. Zag~Both drs know each other and are in the same town (Orlando). It is just that specialists are really good at selling you on what they do best, of course. Hunter is tight enough that doing something now is definitely indicated. He has an appt in Sept with a new ortho as his other one was just too abrasive. I will never let someone operate on my child that I don't feel completely comfortable with. I have been told that this other ortho dr is very skilled and nice..we will have to wait and hope for now..but that will be our second opinion.
Jelly~I tend to agree with you about the side effects being too risky with the baclofen pump. He has had way too many shunt surgeries for me to voluntarily let his neurosurgeon go into his spine..even though I trust him. He was not the one that gave Hunter meningitis twice and numerous malfunctions..he was our second opinion..thank God for him..he is awesome. How long were you or yours down after the hamstring surgery? casted for? out of school? Thank you very much~Stacey :)
Jelly~I tend to agree with you about the side effects being too risky with the baclofen pump. He has had way too many shunt surgeries for me to voluntarily let his neurosurgeon go into his spine..even though I trust him. He was not the one that gave Hunter meningitis twice and numerous malfunctions..he was our second opinion..thank God for him..he is awesome. How long were you or yours down after the hamstring surgery? casted for? out of school? Thank you very much~Stacey :)
Steffers2318
08-17-2005, 07:37 PM
I never had a baclofen pump, and it's true that there are risks, and drs often also have a hard time finding the right dosage... but I've heard from others that when it works it works really well and helps reduce spasticity.
I just had hamstring and adductor lengthening this summer (I'm 19). I've also had Achilles lengthening, about ten years ago. As far as the casts, they're only on for a month, but they are full leg casts (ankles to thighs) so it's kind of rough. The dr said I would need 10-12 weeks of therapy afterward...I have had about 6 and have regained most if not all of my strength (I had aqua therapy...if you decide to do the surgery maybe you could try to find that?) The thing is, the dr said the younger kids generally don't work as hard in therapy so it takes longer/is harder for them to recover. You know how your son would work, though :). As far as school, if he has a wheelchair he could use that and go to school as soon as the casts are off, or even while they're on.
It's a tough decision you have to make because either way, you will be doing surgery. IMO the baclofen pump might help more long-term because even after releases, spasticity comes back and the muscles eventually tighten again. But good luck with the second opinions, let us know what you decide! :D
I just had hamstring and adductor lengthening this summer (I'm 19). I've also had Achilles lengthening, about ten years ago. As far as the casts, they're only on for a month, but they are full leg casts (ankles to thighs) so it's kind of rough. The dr said I would need 10-12 weeks of therapy afterward...I have had about 6 and have regained most if not all of my strength (I had aqua therapy...if you decide to do the surgery maybe you could try to find that?) The thing is, the dr said the younger kids generally don't work as hard in therapy so it takes longer/is harder for them to recover. You know how your son would work, though :). As far as school, if he has a wheelchair he could use that and go to school as soon as the casts are off, or even while they're on.
It's a tough decision you have to make because either way, you will be doing surgery. IMO the baclofen pump might help more long-term because even after releases, spasticity comes back and the muscles eventually tighten again. But good luck with the second opinions, let us know what you decide! :D
Zagreus
08-17-2005, 09:10 PM
The problem in giving advice is that every child is unique and so it's really hard to know what's best. This is the question I'd put to both doctors though -- isn't it better for your child to have the surgery when he's older so that the likelihood of repeating it as he grows is less? What are the risks of not having the surgery now? Our orthopaedist did not push the surgery. His attitude was that we would eventually want our son to have it when he reached a point of radically diminished returns from other therapeutic approaches. He was with a neurologist until he was 10 and had botox therapy a few times. The lengthening of the achilles tendon has worked wonders for him, as did botox until he was about 9.
I don't know anything about the Baclofen pump so I can't offer an opinion. But see if asking doctors what the risks and benefits of surgery at this age are and what the risks and benefits of waiting several years for the surgery are. And consider using the botox therapy again if you had good results and the doctors advise it.
Good luck!
I don't know anything about the Baclofen pump so I can't offer an opinion. But see if asking doctors what the risks and benefits of surgery at this age are and what the risks and benefits of waiting several years for the surgery are. And consider using the botox therapy again if you had good results and the doctors advise it.
Good luck!
JellyRJFan
08-17-2005, 09:46 PM
I was in full leg casts for about 6 weeks. Actually, I went to full braces a week early because I was healing well and the casts were cutting up my ankles pretty badly. I was in those for about 3 weeks, so my legs were immobile for around 2 months. The good thing was they changed my casts to waterproof after 2 weeks, so I could take showers and everything. I had mine during the summer, so I didn't miss school. However, I don't think yours will have to miss more than 1-2 weeks (max) of school because it really is an easy surgery. Your insurance company should supply a wheelchair for him to get around in. Mine was gigantic. It fully reclined and it was folding, not rigid frame, so you can imagine how bulky it was1!
mdctlew
08-18-2005, 02:12 PM
Hi My Son Tristin Was Hit By A Semi When He Was 9 . Resulting In A Brain Injury . He Has Spascity Very Much Like C.p .. In Fact I Have Learned More On This Board When It Comes To The Spascity Than My Tbi Boards .
Tristin Just Had Hamstring Lengthenings In Early April . Putting All The Little Troubles Aside He Did Great . He Can Stand Up So Straight Now . However We Are Going To Do His Achiiles Tendons Next .
Since Your Son Is Only 4 , I ( This Is My Opinion ) Really Believe The Lengthenings Would Be The Best . He Will Bounce Back Fast .just Stretch And Excercise !! ( My Son Has A Vp Shunt Too .)
And I Dont Feel Comfy About The Baclofen Pump , Even Though It Has Many Advantages . Tristin Had His Casts On For 3 Weeks . Now Keep In Mind He Weights 200 Ilb . So It Was Difficult . But We Did It , He Missed Very Little School . ( Two Weeks ) And If You Want To Do It Do It Know Before School Gets Into Full Swing . Do You Like Your Ortho Dr?
Our Dr Is Very Positive About The Achilles Tendons Lengthenings . He Will Not Havet To Wear Afo S Ever Again After A Few Months And Thats A Big Plus ..
But Please Make Sure You Are Comfortable With Any Decision . And Be Sure To Talk To Your Son About It Too . Its Very Important They Understand . Debbie :)
Tristin Just Had Hamstring Lengthenings In Early April . Putting All The Little Troubles Aside He Did Great . He Can Stand Up So Straight Now . However We Are Going To Do His Achiiles Tendons Next .
Since Your Son Is Only 4 , I ( This Is My Opinion ) Really Believe The Lengthenings Would Be The Best . He Will Bounce Back Fast .just Stretch And Excercise !! ( My Son Has A Vp Shunt Too .)
And I Dont Feel Comfy About The Baclofen Pump , Even Though It Has Many Advantages . Tristin Had His Casts On For 3 Weeks . Now Keep In Mind He Weights 200 Ilb . So It Was Difficult . But We Did It , He Missed Very Little School . ( Two Weeks ) And If You Want To Do It Do It Know Before School Gets Into Full Swing . Do You Like Your Ortho Dr?
Our Dr Is Very Positive About The Achilles Tendons Lengthenings . He Will Not Havet To Wear Afo S Ever Again After A Few Months And Thats A Big Plus ..
But Please Make Sure You Are Comfortable With Any Decision . And Be Sure To Talk To Your Son About It Too . Its Very Important They Understand . Debbie :)
baybeemarlins
08-19-2005, 09:37 AM
Thank you for your replies. I know that after he goes to his drs in September I will feel more comfortable with whatever we decide. I would love to wait and put it off, but I can see that he is struggling to get around more lately due to those tight hammies (he is a scooter, never crawled, but man is he fast..otherwise he uses a wheelchair). I wish that he could tell me what he'd want me to do, but his understanding of all of this isn't there. We are going to trust that whatever our decision, it is the right, God given one. Take care~~Stacey~~ :)
BarbaraH
08-19-2005, 10:55 PM
Hi -
My son is 21 years old and was a 3 month early preemie, resulting in a diagnosis of Spastic diplegia (legs affected more that arms and left more than right). He began PT at 18 months old and was using a Kaye walker a lightening speed at 3 years though really up on his toes. He could not walk alone. When he was 4 years old, he was seen by an ortho doctor in Louisville, KY who recommended we look into a surgery called a "Selective Dorsal Rhizotomy."
Robby had the surgery weeks before his 5th birthday at kosair Children's Hospital in Louisville and it was followed by a year of intense PT. Happily, 11 months after surgery, he could walk alone!!! In the years since, he's sometimes used a cane and sometimes fallen and gait is still an issue.
At age 15 he'd become increasingly crouched due to tight hamstrings and growth so he had surgery at Scottish Rite Hospital in Dallas. The procedures were the bilateral hamstrings lengthening and left posterior tib. release. He had the long leg casts for 6 weeks after this, but was also inches taller.
He's still in PT and is 5'9". Now he goes to work out on his own, too, and is in college. He's a delight!
I certainly wish your child and the other children well. Barbara
My son is 21 years old and was a 3 month early preemie, resulting in a diagnosis of Spastic diplegia (legs affected more that arms and left more than right). He began PT at 18 months old and was using a Kaye walker a lightening speed at 3 years though really up on his toes. He could not walk alone. When he was 4 years old, he was seen by an ortho doctor in Louisville, KY who recommended we look into a surgery called a "Selective Dorsal Rhizotomy."
Robby had the surgery weeks before his 5th birthday at kosair Children's Hospital in Louisville and it was followed by a year of intense PT. Happily, 11 months after surgery, he could walk alone!!! In the years since, he's sometimes used a cane and sometimes fallen and gait is still an issue.
At age 15 he'd become increasingly crouched due to tight hamstrings and growth so he had surgery at Scottish Rite Hospital in Dallas. The procedures were the bilateral hamstrings lengthening and left posterior tib. release. He had the long leg casts for 6 weeks after this, but was also inches taller.
He's still in PT and is 5'9". Now he goes to work out on his own, too, and is in college. He's a delight!
I certainly wish your child and the other children well. Barbara
JellyRJFan
08-20-2005, 12:35 AM
after I had my hamstrings lengthened I grew about 3 inches! I shrunk 2 inches when I tightened up.... but im still glad to be an inch taller!