I am so happy that the google search is sending people in the right direction :)
But at times, it just adds frustration. There is a family in Brazil who has a child with infantile scoliosis. The family only speaks Portugeuse, so the communication is slightly limited. There has been no implication that his child suffers from HGPPS ~ just infantile progressive scolisosis. "JUST" is an understatement... since that is the most complicated part of HGPPS. In Brazil, casting is done. But only to control the curve ~ not to correct it.
Well, yes. They put the child under full anesthesia, apply a plaster cast that molds the current curve and hope to hold the curve until the child is old enough for surgery. I shouldn't mock so much. The first orthopedic doctor we saw wanted to put Makenna in a brace until she was old enough for surgery...so I suppose it's not so different.
How can we get this word out there? There is a possible CURE for infantile scoliosis. It will save children countless years of surgery and pain. It will save insurance companies millions of dollars in the long run. Why doesn't anyone want to listen? Why isn't casting the first line of treatment in infantile scoliosis?
This treatment was brought to the United States by a single pissed off parent... WHY? Why doesn't the research spread?
The child in Brazil got a cast. A cast that completely covered her ribs and stomach. She had trouble breathing and couldn't eat. Her parents chose to take the cast off and have a brace molded. I would too. That doesnt' make any sense to me.... they have a child under full anesthesia, and can apply a plaster mold(cast).. it's one more step to gently correct the curve while applying the plaster mold (jacket/cast) and then AFTER the application cut holes to allow for chest wall expansion. Why is that so hard? I must say, this treatment has been available in the US for less than 10 years, but that seems like enough time to educate the world. Maybe not. But what is one parent supposed to do?
And while the frustration of not enough treatment available lumes over my head...
I got an e-mail from a family in Australia. Their son is suspected of haveing HGPPS. He shows all the vision signs and the MRI seems consistant... yet scoliosis hasn't entered the picture. I find this intriguing. I have often thought we should have known the diagnosis for Makenna much earlier, but her scoliosis wouldn't have shown up until 2.5anyway. So what would we have done different? Nothing probably. We caught her curve so early that I don't think there' s a better case scenario for us. But what if we had known.... that it was coming?
I'm not sure that's a great place to be.
Constant worry. Complete obsession. No concrete answer each day.
Oh, wait... that's where I'm at.
I guess it's that same no matter where you are at on the journey. Beginning, middle or end... if your child is not fully grown the worry won't end.
I'm just a mom. I don't have all the answers.... but I'm working to find them...