Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Hi Debbie. Thanks for asking about . It has been a while since I have posted about 's progress. At this point, I really wish we could've spent the extra money and time to fly down to California Cranial Technologies to do the DOC band. I really feel like we have wasted our time with the Children's helmet. And I know there have been some recent newcomers from Seattle, and I don't want to deter anyone from using it, because it has helped many children. I just don't think my child is one of them. He is 15 months old now and didn't get in the stupid thing until a year. (Can you sense my frustration?) Plus, this is the second time, including the military situation, that I have felt like I have wasted my son's and my time. At this first check-up with the orthotist, she didn't see any growth at all, however, his head shape has improved a little. I was very discouraged at the appointment because the orthotist basically said, "Whenever you want to quit, just quit. Throw the helmet away." They didn't show any desire in seeing him ever again or seeing if their helmet was doing the job. I was thinking, "Don't they want to document results for future studies?" Her reasoning for this was because it's "not a medical condition," so it's up to us when we stop treatment. And there was no need for an adjustment because his head had not grown at all in two months. Now the helmet isn't fitting right anymore. He had to be out of it for almost a week because of him being sick, and it will barely go on anymore. He hasn't worn it for about two weeks now. However, I do believe his head has gotten considerably better over time, probably due to both three months of helmet therapy and just time. If you look at his photos in the photo section, those were taken when he was about six months old, and his head looks absolutely NOTHING like that anymore. I was absolutely horrified when I looked at them the other day. I couldn't believe what a funky shape his head had, and it has since rounded out a lot. At this point I am just hoping Mother Nature will step in a little more. No one notices his head shape anymore, and I only notice it because I have a trained eye. Right now, I am just very grateful for any correction we have seen, and really, I am so grateful that I have a very healthy, happy, very smart little guy, who is reaching milestones in his little life so fast. Sorry I sound so grumbly this morning. It's my birthday and I am not too excited because I have already passed all the good birthdays. I'm just getting old now. Kellie, mom of Tacoma, WA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Hi Kellie: I'm just wondering how is coming along in his helmet. I saw a reply from you last week saying you haven't seen much improvement. Sorry to hear that. What does the Dr/orthotist say about that? Please let us know whenever you get a minute. Debbie Abby's mom DOCGrad MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Hi Kellie and Happy Birthday!! I know exactly how you feel about . I'm not sure if you read my posts about or not but we are in a similar situation. We think his head looks really good, after all he was in his STARband for 7 mos. -- it should. We too looked at pics of him before he started his STAR treatment and we cannot believe how his head looked before he was banded. He does still have a slight flattened area behind his right ear, but no one notices it. I probably think it is worse than what it really is, because I stare at it so much. But after our consult with KKR ( Karmel-Ross) in Cleveland and her cranial measurements I'm beginning to think his head is worse than I thought. For starters - we got rid of his old PT (for his tort) and a new one (also through EI) is starting next Wednesday. He is tort experienced, but then again so was 's first PT. I spoke to this new PT on the phone and he seems very eager to get started with . He is willing to watch the video tape of our session with KKR and also to read her book. His PT frequency is getting moved up to once a week, maybe even more than that. has been in PT for 9 mos. now, and we feel like we are just starting out when it comes to doing the stretches. Stretching him is a nightmare!!!! He turned 15 mos. old today and is totally mobile! I'm sure you know that at that age they do not want to be held down for even a minute. All we have to do is touch his head, neck, shoulder etc. and he totally freaks out!! It is next to impossible to get good stretches in - when we do get in some good stretches, he just screams. We try to sneak them as much as we can. He even hates massage. I try and do facial massage on him when he goes to sleep - he won't even let me do that!! He pushes my hands away and rolls over!! It makes me sick to think that by now he should be close to being resolved and even if he wasn't he would be a little bit used to some of the stretches. He wants nothing to do with it. As for his head shape - I spoke to his orthotist for his STARband and to KKR. His orthotist told me that I should get a second opinion about his cranial measurements and gave me a couple of dr's names. I called a cranial facial specialist on Tuesday. His office told me he would call me back. He did not. I've called his office every day this week and they keep telling me the message is on his desk and he will call me. We do not have much time here - after all he is 15 mos. what if we decide to band him again? KKR said we have a little more time left to band, but not much. My husband is mostly against banding again (I really do not want to either - he wore one for 7 mos. and got excellent correction - he did his time!) he says he feels he got excellent correction with the STAR, he does not need another. KKR explained to us (on the phone last week) that the second band is not for cosmetic reasons, but for his cranial base measurements. has never had a CAT Scan or MRI or X-rays or anything done. We were hoping to get something done so we could actually "see" what is going on "inside". The "outside" to us looks great. Though we are worried about his jaw/facial asymmetry, but are hoping the new PT can help us work out most of the tightness. These past 2 wks. have been hell for me!! I feel as you do -- is up and about and also reaching all of his milestones. His old PT did a "Dismissal Evaluation" on him on Weds. and she had written down that he has reached all of his developmental milestones and he is" age appropriate" developmentally. He is such a happy little guy - how can there be anything wrong with him?!?! Well, if this cranial facial doc. does not call me by tomorrow I am calling another. We want some piece of mind over this - we haven't slept good since all of this came about. Hang in there -- I know how you feel. AnnMarie & (15 mos.) PS -- I know how you feel about the birthday bit too -- my birthday was this past Monday the 22nd!! Woo Wee!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 Kellie, Thanks for the update on . He sounds like a really nifty kid! I'm glad he is sleeping well - that makes for a well-rested mommy too!! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.