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Post by GamGam on Oct 21, 2015 0:26:25 GMT
our DGD who is 7 has been walking on her tip toes since the end of summer, and physical therapy is not helping. She had a MRI which ruled out neurological causes, so surgery on both tendons is recommended. This is followed by wearing casts for 6 weeks. But apparently the surgery is simple and should correct the problem. Have any of you heard of this or know someone who has been through it with their child? Any success stories to share with me? I hope so.
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georgiapea
Drama Llama
Posts: 6,846 
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Post by georgiapea on Oct 21, 2015 0:43:58 GMT
Is she doing this because it's painful to walk the normal way?
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Post by rst on Oct 21, 2015 0:46:28 GMT
My son had a version of this surgery when he was 2. It's relatively easy surgery -- they're just "lengthening" the tendons so that her feet can hit the ground appropriately. So in his case there was an incision along the groin/diaperline, and stitches there, which made toileting very challenging. Not sure exactly which tendons they will target for her, so it would be good to ask and be prepared for where the incision will be and how much of the leg will be casted. The long leg casts my son had are a pain-- from hip crease to toes, with a spreader bar between. She may not need them as extensive.
Be prepared that she may need some help using the toilet, or at least in figuring out a strategy. As far as clothing, for a girl it's a bit easier -- loose fitting skirts can go over them. Or you can try things like wearing baggy boxer shorts over the casts, and covering the casts with cut off legs of leggings (make a tube-cast-cover). She'll probably have to get creative with keeping casts dry during a shower, or it's possible her surgeon could use clamshell casts, which can come off briefly for hygiene-- many surgeons don't like them though, so don't be upset if they won't go that route.
Sleep might be a bit harder as she may have a hard time getting into a comfortable position -- asking about melatonin or another mild sleep aide might be of use. For my son, the recovery period was not bad. He used a moderate pain med for immediate 2 or 3 days, then was using tylenol for about a week, then needed no pain meds until the casts were removed -- then he had some pain as his muscles had to adjust to the loss of all that support from the casts.
My son's case was by no means typical, and he went on to have 4 more hip and leg surgeries in the next 10 years, none of which have satisfactorily solved the issues caused by cerebral palsy. As your DGD has no underlying diagnosis, her chances for complete resolution are excellent. Best wishes.
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Post by myboysnme on Oct 21, 2015 0:56:04 GMT
I don't know about the surgery but my husband was a toe walker and he still walks in a lumbering sort of way. I think he should have had it corrected. I was in the airport last week following a young boy who was toe walking and he had a terrible time keeping up with his sibling. His mom was holding his hand and trying to help him along. It looked very difficult for him and I think it is hard on the front of the foot to bear all the weight of the body.
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Post by GamGam on Oct 21, 2015 1:00:07 GMT
Chatterbox, thank you so much for sharing. I'm sorry your son has had so many surgeries. I think her surgery will be close to the ankle, but not sure. That's a question I'll ask.
Georgiapea, Walking is not painful. She just can't put her heel down first, so she adjusts by walking on her toes.
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Post by Penellopy on Oct 21, 2015 1:23:51 GMT
My nephew has a mild form of cerebral palsy and walked on his toes for several years. Their pediatrician referred them to a specialist in San Antonio who did Botox injections in his tendons and then put the cast on. He was in casts for about 6 months total. They would change them out every 6 weeks. It worked for him. He loved to mix up the casts depending on the season or his mood at the time. For Halloween, he had one orange cast and one in black. I asked him if it was a pain to wear casts that long and he told me it was neat cause he got to wear his crocs all the time and be different with his choice of colors.
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Post by pierkiss on Oct 21, 2015 1:31:31 GMT
My nephew who is 17, has been toe walking since he figured out how to walk. He has autism. His tendons and muscles are now so tightly balled up he absolutely cannot physically stand flat-footed at all His parents tried everything, PT, braces, etc to correct it. Nothing worked. He was all set to get the surgery. Then his parents got divorced and his dad refused to pay his share of the surgery. The very much needed surgery to correct his sons legs and ankles. Dads a dick. That's a different story.
Good ode luck to your granddaughter! I hope it goes well and corrects the problem!
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Post by PNWMom on Oct 21, 2015 1:38:44 GMT
sounds like an achilles lengthening or a gastrocnemius recession. I work with the orthopedic foot patients at my hospital, and we see a ton of these (in adults). Usually done along with another surgery when I see them. One of my surgeons is the pioneer of ankle replacements, etc. They are big fans of doing what we call TAL (achilles) or gastroc slide to allow for more ankle mobility. We do also get adults with CP or head injuries who end up with contractures/tightening, and this is the surgery to help with that.
For my patients, they are allowed to weightbear as tolerated right after surgery while wearing a CAM boot (controlled ankle motion boot). They stay in the boot for at least 6 weeks. Most people tolerate it really well without a ton of pain, but there are always some people that have issues. The surgery itself is really quick, and patients generally go home same day, if that is all they are having done. We do on occasion cast people instead of using the boot, but that is usually in people that we don't trust to leave the boot on all the time. They get a walking cast instead.
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Post by lindywholoveskids on Oct 21, 2015 2:39:58 GMT
I was not aware that toe walking was a physical condition. I had learned in Early Childhood classes that it was a possible sign of emotional issues. so thanks for the info!
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Post by wiipii2 on Oct 21, 2015 4:37:51 GMT
My DD was a toe walker and we went through years of braces, splints, PT, OT, botox injections, serial casting, etc, etc when she was a young child.
She is 19 now and while she doesn't have a totally normal gait she can put her heals down. Funny thing is she never really mastered riding a bike due to the range of ankle motion required. Strange thing to think about.
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Post by vjlau on Oct 21, 2015 4:55:55 GMT
YES! I have - in fact I'm going through it now.
My son, who just turned 9, has always toe walked. We really realized it was an issue around his 4th birthday and brought it up the his doctor. The doctor recommended us to a foot specialist and orthopedist and they recommended the surgery. We also did the MRI in case it was a neuro issue. We decided to get two other opinions, and both of those suggested we try physical therapy and wait and see. We did PT and got braces made for his feet to keep the tendons stretched and feet flat. He wore those for about a year. PT was successful...for a while. This past year the issue has become bad again.
Back we went to the doctor. We did discuss the surgery. However, we've decided to do the PT route again. To start. We've seen a lot of improvement, but we knew we might not. Both the dr, orthopedist, and the PT say that each time he has a growth spurt the problem re-appears. Therefore we are considering the surgery. However to start, we are doing a brace insert in the shoe, and PT. I think it's the brace that has made the real difference. The PT keeps everything limber.
My personal opinion through all this is to get a second opinion. Not because the first one is wrong, but just so you have all the options. Then make the educated choice on what's right for the family and the child. I get a lot of grief on my decision to do, or not do, the surgery. I have heard that it's minimally invasive, and they go home the same day. However, the recovery time is 6-8 weeks.
I wish you well! Just wanted to reply, because I know how hard it is to weigh all the options.
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blue tulip
Pearl Clutcher
Posts: 3,049
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Post by blue tulip on Oct 21, 2015 12:15:46 GMT
my cousin's child, who is about 7 or 8 I think, just had this done. she has toe-walked all her life. PT was able to correct it in one foot, but they had to have the lengthening surgery on the other one. it was very easy surgery, and she is recovering very well! still in a cast, but all signs point to a successful resolution. don't be afraid!  |
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Post by GamGam on Oct 21, 2015 14:39:11 GMT
Vijau,
Your post has helped me so much. Thank you for posting. This is the 2nd opinion, and both opinions have been for surgery since it is a simple procedure and should result in a "fix" of the problem. The Drs feel that this is caused by uneven growth between the tendon and bone, and may re-occur in future growth spurts. DS and DIL have decided to wait until after the holidays for the surgery, and winter time is a good time because wearing the casts is hot. I had never heard of this problem before, so hearing from so many of you has been very helpful.
Thanks again to all of you who have responded. Peas are wonderful, helpful people.
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