Georgia has been having problems with her hips. Lots of kids with cerebral palsy and high tone have problems with their hips and spine. We found out in May that Georgia's left hip was 50-60% out of socket and her right hip is about 10% out. Well since May we noticed that Georgia's left leg is shorter than her right leg and she stopped putting weight on it. We were very worried that her hip had become completely dislocated. In July we learned that Georgia's spine is starting to curve (also common with kids who have CP). Also, Georgia's feet turn out and down so her doctor recommended we start seeing an Orthopedist. We applied to Shriner's Children's Hospital and were lucky enough to get accepted right away. The great thing about Shriner's is all the services are free to families. FREE! To a family that spent as much as we did last year in medical bills, free is the best word in the English language.
We had a really good visit. The doctor x-rayed Georgia's hip and we learned that its not all the way out of socket yet. Its a little bit further out but not all the way. Basically the doctor said its only a matter of time before her hip goes completely out. The good news is that it doesn't appear to be hurting her. The doctor said if we did surgery right now to "fix it," its likely the hip would come out again due to her high tone. Its a huge surgery in which they would go in and deepen the hip socket and pin the bone back in place and she would be in a body cast for 8 weeks. So I'm really glad that the doctor didn't want to do that surgery. We decided that for right now we aren't going to do anything and we'll just keep a close eye on it. The doctor said her spine didn't look too bad and the best thing to do for her feet is to keep having her wear her DAFO's (her little boots). The thing that we will need to address at some point is doing something about her tone so more problems aren't caused. The problem we have is Georgia does not respond well to all the oral medications typically used for tone. She has tried Baclofen 3 or 4 times and on the last trial I said we are never doing that again. It made her very irritable and increased her seizures. We tried a different drug (Tizanidine) but that made it difficult for her to swallow and she was choking a lot so it was unsafe to continue. Our only other option at this point is called the Baclofen pump. Georgia is still too little for the pump and I'm in no rush to get it for her. The Baclofen pump is basically a piece of machinery the size of a hockey puck surgically inserted into the abdomen which then a runs a catheter to the spine to deliver baclofen in small doses to the nervous system. Georgia is still so tiny a hockey puck would look huge in her cute little belly. I'm having a hard time warming up to that idea. After the appointment I had a few questions so I called the nurse practitioner and now the plan is to check her again in about 6 months and at that point see if maybe she would benefit from a tendon release surgery (she's still too little to have that surgery right now) so that the muscle will not keep pulling the hip out. If it looks like she needs the tendon release surgery, we'll get put on the waiting list for the surgery. So maybe this summer she might have to have another surgery but for right now we are in a holding pattern.
I love that they put a bar code on Georgia, like you can just pick her up at the grocery store and take her to the check out.
Georgia was really kind of off during her visit. I made Darryl go with me because I was worried about what we would hear. I was fearful that they would tell me that her hip was completely out and we were going to have to do a huge surgery and have her in a cast for months. During the visit Georgia was really stiff and wiggly and she did not want the doctors messing with her. Once we got home she had a huge seizure and had to have her medicine. It was a rough day for everyone but all in all it turned out better than expected. What I really liked about it was that the doctor said that even if her hip comes completely out she doesn't know if surgery will be the right thing anyway. My concern was if its not hurting her why would we put her through such a big surgery. Supposedly there is some evidence that when some kids like Georgia get into their teens their hip starts bothering them and its easier to fix when they are little. My thoughts about this are that we don't even know if Georgia will live to be a teenager (kids with severe disabilities tend to not live very long, either their bodies just give out or they get pneumonia and just can't fight it) and why would we put her through something so huge on the possibility that later in life it may bother her. The doctor said "at the point that the hip becomes dislocated we will have to decide if we are really fixing the problem or if we are just fixing an x-ray." So I was really glad to get a doctor who was not all gun-ho to just operate on my child just to operate. That was comforting. Georgia is also going to start doing physical and occupational therapy up at Shriner's. In April Georgia turns 3 and will no longer be eligible for Early Intervention which comes to our home for PT and OT. And since Shriner's is free its a good option to continue her therapy, although it will suck to have to drive to Salt Lake all the time. So all in all it was a pretty good visit and I think we are really going to like Shriner's. Everyone I've ever talked to who has taken their kid to Shriner's has loved it.
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