Re: questions

[Guest guest]

Thank you for posting your story, I am sorry you had to endure so much with your son, but it sounds like his is resolving very very well. Keep us posted on him. Thank you Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Thursday, September 3, 2009 9:27:37 PMSubject: Re: questions

Hi Joan~

Luke story is much different then the stories on here. Luke was diagnosed at 6 months through a barium swallow study to rule out reflux (he had been throwing up and meds weren't working~ turns out he had an intolerance to oat) . they called to say no to reflux but that he had scoliosis. I immediately started "the search". We saw three different drs. and the third was mehta trained. He saw my son on a thursday and casted him on friday (luke was 8 months). We did not wait to see whether Luke's scoliosis was progressive. .because his numbers were 45-47 degrees cobb and 24-26 RVAD. He had xrays in march that had these numbers. When they put him on the table to cast him (may), our dr. always take an xray pre casting~ his numbers were down to 27 cobb, 18 RVAD. He was casted. he wore his first cast for 11 weeks (due to illness, suppose to be 8)...and then he got it off and got on

his second cast...He was in his second cast (we were still in the hospital), Luke started crying, held his breath and lost consciousness~ They immediately cut the cast off....and kept him in the PICU to make sure nothing was wrong...he was fine...but I was not...I did not want him going back under anesthesia or getting a cast (we were told it was just a breath holding episode), my dr. agreed ~ I was so traumatized as I had been holding him when they called the code. anyway, they used the cast they cut off of him and made a brace from it. We decided that we would wear it until we all settled down (mainly me) from the event and then discuss casting again. six weeks in to the brace, Luke was down to 18-20 degrees COBB with 5 RVAD... and since that we did not get casted again....he has had some plateaus but has never progressed. He did wear the brace FULL TIME for 8 straight months...when I say full time I

mean 23.5 -24 hours a day. Then we slowly weaned him down to just night time use. so now we are down to 5 degrees and completely thrilled...and BTW~ he has had one other breath holding spell/loss of consciousness about 2 weeks ago so we know it was not the cast but acutally my son (I apparently did it when I was little)...it is horrible!

I never wanted to post Luke's story because I did not want other parents to think that the cast caused his episode...I did not want new parents to worry that it would happen to their child..but now, since he has had another one out of brace/cast, I think I can accurately relay the message that it was not the cast.

anyway, thanks for asking Joan. I hope your little one does well with casting! it is truly much easier for them...than us parents~

take care, natalie

From: poohlvr <poohlvr1020@ yahoo.com>Subject: [infantile_scoliosi s] Noelle's scoliosis confirmed & Ian updateTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, September 2, 2009, 9:56 PM

The results on the films taken yesterday came back and Noelle does have juvenile scoliosis. She has a 26 degree curve. I am going to get a copy of the radiologist' s report and the film and start making some calls. I know she is at a critical stage with the juvenile scoliosis and that keeping it below 30 degrees is imperative. Think I will contact Dr. Betz's office tomorrow.

Ian's film came back at 7 degrees. I need to find out how it compared to his last film. The ortho had said it was too small to measure last time, so I would like to see his latest x-ray next to his last one.

Noelle (12-2-01)

Ian (8-15-04)