Ortho or Neuro~Which is best for 4yo??? - Cerebral Palsy Message Board

baybeemarlins · 08-17-2005, 07:57 AM

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.

Zagreus · 08-17-2005, 09:58 AM

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, 02:10 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, 04:03 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

Steffers2318 · 08-17-2005, 04:37 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!