I have a 12 yr old daughter with special needs. We were treating her scoliosis with a scoli jacket which worked well until her pre-adolescent growth spurt. Now her spine curvature has worsened to the point she needs surgery. The problem is she is not able to communicate except by using a augmentative communication device. She has made such great progress and has only been hospitalized twice fro simple stuff. This is MAJOR. Wondering if anyone else out there has had this experience and how it went. We've gotten second and third opinions already...thank you.
Laura had her surgery (posterior fusion) by Dr. Frino at NCBH on Feb. 10th. She did WONDERFULLY! It was the hardest decision we've ever had to make for her, BUT it was the RIGHT decision. Everyone was great and very understanding. As you may recall we were worried about her pulling out her lines and drains, but they kept her so comfortable that she never tried to pull ANYTHING OUT (and she had several) We soon learned that although she did seem to feel better, she showed a new "sign" for pain. About every 3-4 hours she would need something, but would then rest. The therapist said they couldn't believe how well she was doing! She stayed in the hospital 7 days and has been home since. I have had OT, PT and ST as well as a 1-on-1 person working with her. She is making great progress, seems "calmer" and in? much less pain. She will probably go back to school after Easter. We are SO THANKFUL and know it was the prayers of so many people that helped her and us through this. Sometimes you just have to TRUST GOD and GIVE IT TO HIM! (Really all the time-smile) Anyway-if I can help anyone else, let me know and thanks everyone!
Have you thought about seeing a chiropractor? I have scoliosis but did not start seeing a chiropractor until after my third child was 4 or 5 y.o. My youngest son has it also and is just being treated with adjustments then strengthening exercises. If you try this route I would talk to several offices to see if any of the chiropractors have experience with special needs kids and scoliosis.
Dear D.,
First of all, you are my hero!! (I was an ER nurse for 13 years. Since then, I've done peds home health and private duty peds for most of the past 13 years.)
Decades ago, my friend had scoliosis surgery when we were in high school. Since then, she's had 3 vaginal deliveries and raised a family. We've drifted apart, so I don't know of any recent repercussions. I assume arthritis might be an issue for her at this point.
The only other scoliosis surgery experience I've had was with a patient. The severity of her scoliosis required a trach/vent because her chest was dropping into her abdominal cavity. When I worked with her, she had had surgery and they were considering more, the details of which I don't recall. (You ain't seen nothin' until you've walked in on a 14 y/o on a vent jumping on the bed!)
You've had your 3 opinions, it sounds like your daughter has to go through with the surgery. Besides communication, I think pain management, toileting, nutrition/skin care, and prevention of infection would be your primary post-op considerations.
I'd be sure to get her out of the hospital ASAP because of MRSA risks, and/or I'd insist on changing her dressings myself while she's in the hospital to prevent cross-contamination. Let the staff do their necessary assessments, but you do the point contact. I worked with 2 different MRSA'd post-op lumbar wounds last year doing home health.
Pre-op, I'd prepare her for describing the 1-10 pain scale. Remember your vitamin C, zinc, and protein for wound healing and have her as nutritionally sound as possible going into it.
Don't forget to prepare her brother for his sister's hospitalization, recovery, and the ways in which he will be able to help.
Good luck!
Hi D.
I had surgery for scoliosis when I was in high school. My spine was fused and had Harrington rods inserted. I would highly recommend her having the surgery over the summer because it took almost all summer to recover to the point I could return to school. I am now in my 30s and am very grateful I had the surgery when I did. The only complication I have had is that as I have gotten older I have had some back pain, however physical therapy has helped me learn exercises that strengthen my core muscles which helps decrease and or get rid of the pain.
I have never had this or been close to anyone that has, however, I worked with a woman recently who had a son that had that surgery. She said that he was doing wonderfully well and grew a foot after they straightened his spine up.
She seemed to think that it was worth it and that her son felt better and was less self conscous.
Hope that helps.
Hi D.: I had scoliosis at age of 18 after several years of observation. There have been so many advancements in the last 22 years. I won't lie, it is a hard surgery. Mine advanced to the point that was very uncomfortable to sit for long periods of time because of a large crease in my back. Though, I have a young friend who had the surgery last year and she did so well. She was in the hospital half the time I was and received a flexible plastic type rod while I have a metal rod. I can also remember when I was in the hospital towards the end of my stay, they had me visit a young man who also had special needs. There was such a caring nursing staff. He was in such good hands. I am so glad I had the surgery when I did because the younger you are the quicker the recovery. Good luck. Take care
D., I had a special needs child. While she didn't have surgery for scoliosis - she did have bi-lateral hip dislocations which required surgery and a 6 week stay in a body cast.....so, I kinda know what you're in for. The nurse that responded to your post - she's in the 'know'. I would take every action she suggested - she's right on. I don't mean to waste your time because, like I said, my child never had scoliosis surgery....I wanted you to know that hey, some of us have been there too! Good luck to you and your daughter.
Hi D.,
I am not familiar with your childs problem but I do want to say that you are a wonderful mother and she could of not got any better, my heart goes out to you and your beautiful family those children are so lucky to have you all as their parents there are not too many people out there that have the ability to take care of special needs children I have one biological daughter which is 32 now and she has 3 beautiful children ages 11-Madison 2 Braydon and 15 months old Brennox Jase and she has also been a surro mom and the child will be 7 in March and she is getting ready to be a surro mother again Lords will, and I have 2 adopted children they are sisters I got them when they were 4 and 6 and now they are 21 and 23 and they are my pride and joys I love all my children so much.. I sure hope someone can help you with your situation and I pray that you can find the answers you need for your beautiful angel, I'm sure God will lead you to the right place when it is time for your angels surg.....May God keep his hand upon you and your beautiful family.....Love and Prayers J.
I can't give any advice or help, but I can give my support and my prayers, I will be praying for your daughter, and your whole family. Surgery is never easy, especially on a child, much less a serious one like this. I will be praying for God to guide the Dr's hands as well. God Bless
D., I am not familiar with your child's special needs,but I myself had surgery for scoliosis when I was 14. That was in 1977 -- I'm sure they have made huge advances since then. I was in an ambulatory cast for 6 mos after the surgery and I know they have reduced that time drastically since then -- I have met others several years younger who were up walking the next day or 2 after the surgery. I have not had ANY problems since other than osteopenia in my spine but hey, I'm 46 years old too!! The important thing as far as the surgery, recovery, and living afterward is to keep to your physical restrictions and use good judgment.
I dont know if this helps you or not but I hope that your daughter does well with her surgery.
