Scared & Confused

[Guest guest]

Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23”. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here” – not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda GrimmettMom to Eliza – 11 months_,_._,___