Re: Re: Tough Day

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Re: Tough Day

Hi Debbie,

Yes, I'm feeling much better this morning, but still scared about this cranio business. Our trip was only 6 hours total, 3 each way, but we were still exhausted. I don't know how you did Chicago in one day!! The PT said has some slight assymetries, and classified the flatness of this head as moderate. I don't know why she was so sure he would need two bands. I'm worried that the neurosurgeon wrote cranio on the slip because he suspected it. He certainly didn't communicate that he suspected it with us. If this is the case, I wonder what about made him suspect it. He really wasn't with us all that long. I'm going to call Mon. and try to get to the bottom of it. It is frustrating because we have to wait until March 6th for our CAT scan. That is a long to time to worry about cranio. The doc. only wants us to go to a certain hospital for the scan. I'm going to ask if there are any other places that we could go, I really don't want to wait so long for answers. Thanks for your support, I will post after I talk to the doctor on Mon.

Wow, you sure did have rotten day - I'm so sorry about all the scary and bad information you got. Craniosynostosis can not be diagnosed w/o a CT scan or Xrays (CTscans the best way though). The neuro could suspect cranio w/o the tests, but there's no way to be 100% sure w/o the tests. Has he recommended you get a CTscan done? Of course all this happened on a Sat so you have to wait 2 days before you can get any details. Uggg.Brachy cases usually do not have any assymetries -maybe only slight. So I am surprised the PT said it is the hardest to correct. And is just 7 mos old so I would think he'd still get good correction. Assymetries are often the hardest part to correct.Do NOT beat yourself up for 's head shape. You did everything correct by sleeping him on his back. This just happens for no good reason! None of us are bad parents for listening to the so called "experts" and doing everything we could do to prevent SIDS. I hope you're feeling better today. Believe me, we've all had those crappy days where all you want to do is sit down & cry. And traveling 6 hrs one way is not going to help you feel any better - I know. Wow was I ever a bear after our trips to Chicago & back with Abby last year. Hubby knew to leave me alone for at least 1 hr after we ret'd. Hehe.Let us know what the neuro says if you call Monday. Good luck.Debbie Abby's mom DOCGradMI> Hi Everyone,> We went for our initial consultation at One Step Ahead in Mayfield OH > regarding getting 's DOC Band. Well, when we got there the PT > said that our neurosurgeon had written craniosynostois on the > order. She was concerned about this because the band is contra-> indicated for cranio. I don't understand this because has not > yet had his CAT scan, and I thought that was the only way to > diagnosis cranio. I got very worried that maybe he suspected cranio > instead of plagio. Can they tell without a CT? I'm very upset about > it and just have to stew since I can't call his office until Monday. > The PT at One Step Ahead tried re-assure us that the neurosurgeon > wouldn't be able to tell if crano without a CAT scan. But then > why would he write that on the order? > > It was just a really bad day all around. Almost six hours on the > road! It was too much, I think we will be staying over from now on. > Add hotel costs onto our final bill! We are exhausted and it seems > like we got nothing but bad news all day. The PT said that has > bracy and that his head shape is one of the hardest to correct. WE > should expect two bands and might get only a 50% correction. I > anticipated higher correction since he is only 7 months. She also > told us that she has never seen our insurance cover the DOC band. > Wonderful!!!!! She also felt that we should get him into physical > therapy because he is not sitting up on his own at almost seven > months. She attributed that to not having enough tummy time to > strengthen his back. Why didn't our ped. pick up on weak muscles and > recommend some physical therapy earlier? Of course they we the ones > telling us his head would round out on its own so I guess I shouldn't > be surprised. I have felt so let down by the medical community > lately. Just when I thought I was coming to terms with my guilty > feelings about all of this, another wave hit me really hard while we > were there today. It was all I could do not to cry during our > meeting. The PT was trying to be helpful but after all that bad news > she had lost me by that point. She was very nice, and very > knowledgable, but I got the feeling that she had lost touch with how > hard this can be on parents when it is all new to them. I wish so > bad that I had never taken lamaze classes. They were the ones that > scared us so bad about SIDS that we were terrified to even put > on his stomach for naps during the day. Even though no one warned us > about plagio, or stressed the importance of tummy time, I feel like I > should have somehow known and that ultimately it is my fault. I just > don't understand why this all has to be so hard? All I ever wanted > was what was best for my baby. So jealous of people that have babies > with perfect little round heads right now. I'm sure I will feel > better in the morning. Right now I'm tired, overwhelmed, and having a > pity party for myself. Sorry about that, and thanks for listening.> ps sorry this is so longFor more plagio info