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Thread: daughter with a disability, looking for help

  1. #1
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    Apr 2007
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    daughter with a disability, looking for help

    I have a 20 year old daughter, Teresa, who has severe MR, Cerebral palsey, and epilepsy. She is non-verbal and walks if you hold her hand. We have been battling her scoliosis curve since shes been born, but it seems to have gotten worse the past year. She has a 45 degree curve in the lumbar part on her spine. Over the past 2 months I noticed when she walks that she is arching back. Her curve goes to the left and she arches to the right. Doctors say surgery is inevitable although they don't know if she will survive the surgery. So, we are hoping to hold off as long as possible. My questions are:#1 Does anybody else have this kind of curve and can you tell me how it feels? I often wonder if she is in pain and what I can do for her. Is she arching back because of the pain? And #2 Has anybody with a severe disability tried any bracing? The drs. say it won't help because its neuromuscular but I often wonder. I have been reading alot of what you say about the spinecor brace. I would rather brace her for the rest of her life than risk surgery. She cannot communicate at all so any thoughts about how she feels would be helpful Thank you! Natalie

  2. #2
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    Jan 2007
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    With heartfelt sympathy...

    Welcome to the forums. First of all, I just want you to know how sorry I am your daughter's curve is progressing, but also that you are not alone. There are a few of us here who have severely disabled children, and hopefully more of them will respond to you so you can get a good sense of how caring and understanding this community is. So hang in there. You can do it and we will keep you in our thoughts and prayers.

    I don't know how much help I can be to you, but since you represent my future, I just wanted to let you know I truly feel your pain. As you can see in my signature, my son Spencer is also nonverbal and severely disabled, and we just had Spencer fused last January. It was a very difficult decision and full of risks that most who face this surgery never have to think about, fortunately. So I am fully aware of the turmoil you are feeling right now and hope you can find some peace in whatever you ultimately decide to do.

    For us the decision hinged on improving Spencer's quality of life for the next 10 years so that we might be able to get to a 20th and maybe a 30th birthday. You see Spencer's curve had progressed to the point it was compromising his lung field and other abdominal organs. Without the surgery, he likely would not make it through the next 10 years, but the surgery itself stood a very good chance of taking him from us, so, as I said, it was a difficult decision. Now, in hindsight, I'm very glad we did it, but the last three or four months have been a wild wild ride, to be sure. Fortunately, we have had fantastic doctors who have helped us make our decisions and in whom we have great trust.

    Anyway, Spencer's curve also results from his nueromuscular degeneration and we did brace him for almost three years before his surgery. We used a standard TLSO brace and for a while it seemed to help him. In fact, the brace always improved his curve by about 40 degrees whenever he was wearing it, but because he is so floppy, whenever we took it off, he slumped into a much larger curve. Finally, when his out-of-brace curve reached 118 degrees the doctors told us we had reached the decision point.

    So I guess in terms of whether or not bracing helps scoli caused by nueromuscular conditions, I would have to say that for us, it did not really help. But Spencer is a low tone kid and maybe the situation would be different for a high tone kid. If your daughter can walk, then she has a lot more tone then Spencer. On the other hand, the brace won't be able to correct the nueromuscular problems, so in the end, it may not help enough to avoid surgery.

    Now if Spencer were 20 years old, I honestly don't know if we would have made the same decision. The prognosis for his disease only gives him a life expectancy to between the 2nd and 3rd decade to begin with. So I don't know that I would put him through the trauma of the surgery if I knew he did not have many years left to begin with.

    Well, sorry, like I said, I don't think I have been much help, but with kids like Spencer, these decisions are almost more matters of belief and faith than they are medical science. I truly hope you can come to a decision and feel good about it. If I can be of any help, just let me know. Good luck and keep us posted.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  3. #3
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    Hi Natalie - Welcome.

    I don't have a severely disabled child, so I don't have much personal experience to offer. I do know that several children with neuromuscular disease have benefitted from bracing. The brace offers support that their own bodies lack. Bracing in most patients is non-invasive. If you find she doesn't adjust to it, or if she doesn't breathe well in the brace or has more problems, stop wearing it.

    As for arching to one side, I would bet that her spine is rotating and the progression of the curve is making her body out of balance - her neck and pelvis are no longer aligned. A lumbar curve of 45 degrees in healthy patients is borderline for recommending surgery. The lumbar spine is where much of the body's mobility comes from.

    I'm sure your daughter has multiple specialists that care for her. Not knowing her full medical history, would you mind explaining a bit more about why they are against her having surgery? Does she have poor lung function? Is her blood circulation poor? Does she have a weak heart? I ask because I know of several patients who, on paper, appear to be poor surgical candidates, yet they had an orthopedic surgeon who had lots of experience treating kids with multiple anomalies successfully. The surgeon would need to work closely with the other specialists, but many times it can happen unless there is a specific underlying reason not to do surgery, ever.

    I wish you the best. It is a very hard decision to make when there aren't cut-and-dry answers. Where's that crystal ball when we need it?
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  4. #4
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    Hi Carmell, Thanks for the info. I'll tell you a little more about Teresa. She is only 4 ft 6 in. tall and currently weighs only 84lbs. This past summer she came down with a cold and in a matter of 2 days it went right into pneumonia and she went into cardiac arrest and had to be put on a ventilator for 5 days. Thank God she pulled out of it but now her primary care Dr. is very leary of surgery. I'm sure if the decision to have surgery is made she will pull through cause she is a very tough cookie. My biggest heartache is trying to guess how she feels and keeping her comfortable afterward. I am hoping we can hold out until we can get a little more weight on her and build up her immune system. I also wonder how she is feeling now, the orthopedic surgeon says she is not in any pain but from the looks of her back its hard to imagine she is not! So many people on this forum say they have such bad pain but they all have different diagnosis than Teresa. I'm sure each day is different but that is the most frustrating part.Her Dr. is Dr. Steven Albanese from Syracuse NY has anybody heard of him or had surgery with him? We haxe another appt. on June 25 and she will have X-rays also. I feel like the closer that day gets the gloomier I get. I try to not expect the worse but her back just looks so bad to me.Thanks for your help!!! Natalie
    Last edited by NatalieM; 04-13-2007 at 03:57 PM.

  5. #5
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    Hi Spencers Dad, Thank you for responding and hearing from you was a big help.I hope your son is doing well. Its amazing how the surgery improved his curve. I have been reading alot on this forum from people who had the surgery and although it seems to be a success most of the time , the stories about how it feels afterwards are heartbreaking. Just to imagine she might have to go through that and not know what is happening to her tears me apart. I do want to say to you though, that when Teresa was 10 years old she was in a wheelchair and if anyone asked me if she would ever walk my response was "not likely"! But at 12 years old we put Teresa in a new school program and she had a terrific teacher who was extremely motivated and refused to believe Teresa would never walk. Within 2 yaers she went from using a walker to holding her hand and now on good days she takes steps independently!! She is so proud of her self and so are we but we had this wonderful teacher who believed there are no limits to these kids ,no matter what age. So now we tell people it took her 15 years but she is finally walking. So don't ever give up hope!!!I also know that talking to someone who has an older child helps too. If I ever see a couple older than myself with a disabled adult older than Teresa I always say hello and start a conversation to ask questions or most of all see how they held up all this time! Do you mind telling me where your son had surgery and who was his Dr? I hope I am responding to this forum correctly and you are recieving my replies because I want you to know how helpful you are! Thanks again, Natalie
    Last edited by NatalieM; 04-13-2007 at 03:52 PM.

  6. #6
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    Thanks for the encouragement

    Natalie,

    Thanks for your encouraging reply. I never give up hope that Spencer will walk one day, and my faith lets me know that someday he will. Unfortunately, Spencer's condition is progressive degenerative and he has now started the slow decline in skills that results from developmental mylenation problems. This kind of neuro damage lets kids progress normally for a period of time and then slowly degenerates robbing them of the skills they have developed. Spencer progressed normally for about two months and then has not really gained new skills since that time. So he is completely non weight bearing, meaning he can not even sit up on his own. He does move, but mostly the extent of his motion is to bat at toys or stretch his arms and legs. So walking right now is unlikely, but I continue to watch for new treatments that may help him in the future.

    I will also say that, as usual, Carmell is right again. Spencer's brace did benefit him although not necessarily as a scoliosis treatment. So although it did not arrest the progression of his curve, it did give him the trunk support he needed to be able to sit in a wheel chair and it opened his lung field up by stretching his spine out. So, even though it did not treat the scoliosis, it did give us some very beneficial secondary consequences. The unit rod fused to his spine does all of that now in a much more effective way.

    Also, we were very concerned about Spencer's weight before surgery and went to extensive efforts to try to increase his calorie intake. We were able to get him to about 34 pounds before surgery, but the real benefit came after surgery when he shot up another 4 or 5 pounds. So an additional benefit from the surgery was an drastic improvement in his GI system.

    Lastly, we live near a Shriner's hospital and an excellent childrens hospital, so all of his care comes from a coordinated effort between those two hospitals. Shriner's has handled all of Spencer's ortho care for many years. Unfortunately, both hospitals only treat children up to the age of 18.

    Anyway, good luck and let us know how things work out, or if you have more questions (or advice!). Hang in there. We will keep you in our thoughts.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  7. #7
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    Quote Originally Posted by Spencer's Dad
    Lastly, we live near a Shriner's hospital and an excellent childrens hospital, so all of his care comes from a coordinated effort between those two hospitals. Shriner's has handled all of Spencer's ortho care for many years. Unfortunately, both hospitals only treat children up to the age of 18.
    I was told once by a good friend of mine within the Shriners Hospital system that if a child is already a patient - and, let's say, some new procedure is developed that can help that child, since they are already registered in the Shrine Hospital system they can be treated at Shriners through age 21 under such circumstances.

    Just something for you to be aware of and to keep in mind.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  8. #8
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    Spencer's dad,

    The children's hospital will continue to treat patients on an as-needed basis, forever. They have many cardiac and neurosurgery patients into their 20s and 30s still being treated there. I asked about this when Braydon had his surgery in December. Braydon is one of the "older" VEPTR patients, and there are NOT any orthopedic surgeons treating adults who know about these kids. I feel confident that we will continue treatment there without a glitch. No worries, I promise.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  9. #9
    Join Date
    Jan 2007
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    Generalities

    Ah, yes, Maria and Carmell, I know about these rules, but thought it would be simpler to speak in general rules for Natalie's sake since her daughter is already 20, and presumably not an existing Shriner's or PCMC patient. However, Natalie, perhaps there is a childrens hospital near you where there are very qualified pediatric ortho surgeons with extensive experience dealing with nuero disabled children with scoliosis who can treat your daughter even though she is over 18.

    I will also say, Natalie, that given your already scary episode with pnuemonia and surgery, I share your docs concern. You and I both know that it is pnuemonia that will likely be the end of our kids and being intubated for an extended period of time during surgery and the days that follow is often a greater risk than the surgery itself for these little ones. I can not imagine trying to make this decision without the confidence I had in our pediatric medical team from both hospitals. I hope that if you decide to go ahead with the surgery that you have highly qualified docs with experience in treating kids like your daughter and in whom you have great trust. If you are not there yet, keep looking.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  10. #10
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    Jan 2006
    Location
    Houston TX
    Posts
    288

    Wait it out.

    Quote Originally Posted by NatalieM
    But at 12 years old we put Teresa in a new school program and she had a terrific teacher who was extremely motivated and refused to believe Teresa would never walk. Within 2 yaers she went from using a walker to holding her hand and now on good days she takes steps independently!! She is so proud of her self and so are we but we had this wonderful teacher who believed there are no limits to these kids ,no matter what age.
    Wow! I am so glad to hear that you got such a positive teacher.

    It sounds like the surgery could be risky. If its a matter of pain, I think you are the best judge of how much pain your daughter is in. I will say, however, that strengthening helped to stop our daughters back from getting more curved--sitting independently, standing etc. If she isn't in school now, you might want to see if she can get some extra PT.

    You may want to approach it as a wait and see for now.

    p

  11. #11
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    Utah
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    Spencer's dad - Thanks for the clarification (which I should have done when I wrote too - I knew you knew better). EXISTING patients can be seen indefinitely in most cases (unless there are adult experts able to care for them). NEW patients would not be accepted unless there are extenuating circumstances, and I'm sure Shriners would not make that exception as a general rule.

    Natalie, I will continue to send my best wishes to you and your family and the docs to make the right decision for Teresa. I can't begin to understand how heartwrenching this decision is. I know enough to know this is truly a life-threatening decision. Please know we care.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  12. #12
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    Apr 2007
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    Thank you all for replying. You have given me a lot of useful information and a lot to think about. Unfortunately, Teresa was not a part of the Shriners Hospital. We had a very good pediatric ortho Dr. right here that we absolutely loved but unfortunately , even though she wil continue to see Teresa she does not perform surgeries. So getting used to another Dr. is hard. Dr. Albanese in Syracuse comes highly recommended and I've talked to a few parents out there who see him and they like him alot. Now that I've done some research on the surgery and have become a part of this forum, I feel I can ask the right questions to feel a lillte better about it. Her next appt. is June 25 and she will be x-rayed. I am hoping it didn't get worse ( her curve) and we will have more time. I just hope that be waiting I am not prolonging her pain, if she has any. She is like any other 20 year old, VERY MOODY, so of course whenever she gets whiney or cries my first thought is that she is in pain and what can I do!! Maybe I am overreacting and dwelling to much on the curve but looking at her back all day, I can't help it.
    She does recieve PT 3 times a week and they work a lot on range of motion exercises as do we. She was in a sideliner for a while but it seeemed like the therapists and Dr. couldn't agree as to what side to lay her on so I told them not to put her in it for fear it might get worse. One says lay her on the opposite side of the curve to bring her back and others say lay her on the side OF the curve to stretch out the muscles!!!( Her curve goes to the left when you are looking at her back) Way to confusing so I said don't do it at all and we'll take our chances!! She does sit up by herselp which is good.
    I am keeping my fingers crossed! THANK YOU for all your help. You have no ideal how helpful you've been It took me months to write on this forum and now I wish I wrote sooner. Its nice to know I am not alone. Any other suggestions please keep writing!! THankyou!!! Natalie

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