Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Hi Everyone- Jake's plagio sroty is kind of long, so please bare with me.... Jake was 10lbs 11oz at birth (the doctor apparently had no idea he was going to be that big, even though I had an ultrasound the week before he was born). Due to his constricted uterine home, he was born with a dent on the upper left side of his forehead/head and would only look to his right. After a few weeks I started noticing the shape of his head changing, the right side of his forehead was bulging and his ears were misaligned. He was diagnosed with tort (which I had never heard of before) at his 2-month well visit and we started PT immediately. He was also referred to a pediatric neuro to rule out cranio as a cause of his misshapen head (I never heard the word " plagiocephaly " ). But our appointment wasn't for 2 months. In the meantime, I started repo, and followed through on all the neck exercises. The neuro ordered a CT scan which Jake had at 3 months old, then the neuro appointment was at 4 months old. The neuro rubbed his hand over his head and showed me the CT and said, " it's not cranio, he doesn't need a helmet, they're a waste of money, there's nothing that shows that he won't achieve the same results on his own over time, spend the money on a nice vacation. " So at the time, I was so relieved that it wasn't cranio, that I just took the diagnosis and went with it. The neuro never said the word " plagiocephaly " to me at all either. Jake graduated from PT soon after that. At his 6 and 9 month well visits, I asked the ped again about his head, because I wasn't seeing a huge improvement and it still worried me. She said " it's fine, it will round out. " At his 12 month check up, I asked another ped the same thing. He said " it's fine, it will round out. " My husband kept saying " the doctors say it will round out, it will be fine. " So I just let it go. Again and again. But it still bothered me. His flat spot did improve somewhat (but was still significant), but his ears and forehead stayed the same. Right after Christmas break (early Jan. of this year), I saw a mom at preschool, who I had seen many times before, take her son out of the car and he was wearing a helmet. I immediately went up to her and asked her about it. I started crying and told her about Jake and she recommended the craniofacial surgeon she had seen. That afternoon, I went home and made an appointment. I was stressing because of Jake's age. He was already 16 months old. Luckily, I only had to wait about 2.5 weeks for the appointment. In the meantime, I went to the ped one more time, and this time he said that helmets " are a crock " and when I said how long do you think it will take for his head to round out, he said " between you and me, by 3, " as if it was our little secret or something. Anyway, went to the cranio, he actually said he wouldn't band Jake because of his age, but again, with the tears, I was able to persuade him to write the script and he said he would defer to the ortho to decide what to do. The hospital's ortho provided the StarBand and they said they would band Jake, but they didn't sound overly confident that we would see great results and they wouldn't even commit to how long he would wear it. I knew there was a Cranial Tech in Charlotte (we are in Raleigh), so I went there for an eval as well and they said they would absolutely see results and they had no problems with his age at all. They really gave me the confidence I needed to get through the whole process. They measured Jake at 15mm of assymetry for both the top of his head (traditional cranial vault) and ears (skull base). He got his band on 2/11/08 at 17 months, 6 days old. He's been wearing it for 7 weeks and we're seeing significant improvement (for his age anyway), so I couldn't be happier with my decision. I still wish I had been given the opportunity to band or pushed for banding a year ago. But looking on the bright side, at least I didn't let this last chance pass me by. I look forward to getting to know everyone and hope to help in any way I can. Thanks for listening! Jake-18m (tort resolved/rt plagio/in DocBand 7 weeks) > > Hi All. We would like you to join us in welcoming our newest > moderator, Jake's mommy, . has been an invaluable asset > on the board sharing and supporting new plagio moms. , when you > get a moment, please share Jake's plagio story. > > Thanks and welcome! > > Becky, repo mom > , repo grad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Sorry, forgot to mention that there is a photo of Jake posted under the new photos, and a couple of others in the Our Plagio Babies - J under Jake W. Thanks! > > > > Hi All. We would like you to join us in welcoming our newest > > moderator, Jake's mommy, . has been an invaluable > asset > > on the board sharing and supporting new plagio moms. , when > you > > get a moment, please share Jake's plagio story. > > > > Thanks and welcome! > > > > Becky, repo mom > > , repo grad > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 , Thanks so much for sharing your story. I'm so glad that your son was banded and that you are seeing results. It is so frustrating to hear that you had such bad experiences with so many doctors, it is shocking and upsetting. I hope this motivates other parents to take matters into their own hands when they know something just isn't right. My son is also 15mm for head diagonals (forget what that's called) with some facial asymmetry. Good luck to you. Sybil nwilkens2275 <nwilkens2275@...> wrote: Hi Everyone-Jake's plagio sroty is kind of long, so please bare with me....Jake was 10lbs 11oz at birth (the doctor apparently had no idea he was going to be that big, even though I had an ultrasound the week before he was born). Due to his constricted uterine home, he was born with a dent on the upper left side of his forehead/head and would only look to his right. After a few weeks I started noticing the shape of his head changing, the right side of his forehead was bulging and his ears were misaligned. He was diagnosed with tort (which I had never heard of before) at his 2-month well visit and we started PT immediately. He was also referred to a pediatric neuro to rule out cranio as a cause of his misshapen head (I never heard the word "plagiocephaly"). But our appointment wasn't for 2 months. In the meantime, I started repo, and followed through on all the neck exercises. The neuro ordered a CT scan which Jake had at 3 months old, then the neuro appointment was at 4 months old. The neuro rubbed his hand over his head and showed me the CT and said, "it's not cranio, he doesn't need a helmet, they're a waste of money, there's nothing that shows that he won't achieve the same results on his own over time, spend the money on a nice vacation." So at the time, I was so relieved that it wasn't cranio, that I just took the diagnosis and went with it. The neuro never said the word "plagiocephaly" to me at all either.Jake graduated from PT soon after that. At his 6 and 9 month well visits, I asked the ped again about his head, because I wasn't seeing a huge improvement and it still worried me. She said "it's fine, it will round out." At his 12 month check up, I asked another ped the same thing. He said "it's fine, it will round out." My husband kept saying "the doctors say it will round out, it will be fine." So I just let it go. Again and again. But it still bothered me. His flat spot did improve somewhat (but was still significant), but his ears and forehead stayed the same. Right after Christmas break (early Jan. of this year), I saw a mom at preschool, who I had seen many times before, take her son out of the car and he was wearing a helmet. I immediately went up to her and asked her about it. I started crying and told her about Jake and she recommended the craniofacial surgeon she had seen. That afternoon, I went home and made an appointment. I was stressing because of Jake's age. He was already 16 months old. Luckily, I only had to wait about 2.5 weeks for the appointment. In the meantime, I went to the ped one more time, and this time he said that helmets "are a crock" and when I said how long do you think it will take for his head to round out, he said "between you and me, by 3," as if it was our little secret or something. Anyway, went to the cranio, he actually said he wouldn't band Jake because of his age, but again, with the tears, I was able to persuade him to write the script and he said he would defer to the ortho to decide what to do. The hospital's ortho provided the StarBand and they said they would band Jake, but they didn't sound overly confident that we would see great results and they wouldn't even commit to how long he would wear it. I knew there was a Cranial Tech in Charlotte (we are in Raleigh), so I went there for an eval as well and they said they would absolutely see results and they had no problems with his age at all. They really gave me the confidence I needed to get through the whole process. They measured Jake at 15mm of assymetry for both the top of his head (traditional cranial vault) and ears (skull base). He got his band on 2/11/08 at 17 months, 6 days old. He's been wearing it for 7 weeks and we're seeing significant improvement (for his age anyway), so I couldn't be happier with my decision. I still wish I had been given the opportunity to band or pushed for banding a year ago. But looking on the bright side, at least I didn't let this last chance pass me by. I look forward to getting to know everyone and hope to help in any way I can. Thanks for listening!Jake-18m (tort resolved/rt plagio/in DocBand 7 weeks)>> Hi All. We would like you to join us in welcoming our newest > moderator, Jake's mommy, . has been an invaluable asset > on the board sharing and supporting new plagio moms. , when you > get a moment, please share Jake's plagio story.> > Thanks and welcome!> > Becky, repo mom> , repo grad> You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 , That picture of Jake with the Titleist band is the cutest! Are you an artist? How did you get the font so perfect? (Loved the Superman one too). Do you spray the overall helmet with the base color? It looks fantastic! > > > > > > Hi All. We would like you to join us in welcoming our newest > > > moderator, Jake's mommy, . has been an invaluable > > asset > > > on the board sharing and supporting new plagio moms. , > when > > you > > > get a moment, please share Jake's plagio story. > > > > > > Thanks and welcome! > > > > > > Becky, repo mom > > > , repo grad > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 You are so sweet to assume that I might be an artist, but alas, that is not the case. The Titleist is actually a vinyl sticker that is supposed to go on a car window. Vinyl stickers seem to be the new rage, at least on the cars around here. My husband is a big golfer and has like 15 different Titleist hats (plus his best friend and Jake's godfather is a sales rep for Titleist, so it's near and dear to our hearts) and he off-handedly said I should design Jake's helmet like one. I thought it was a great idea, but he doubted that I could find a good sticker to use. But of course, Ebay has everything you could ask for, and it was the perfect size, though a little tricky to stick to a paint base (it's obviously made for a clean smooth surface), but I managed with a steady hand. The paint base is just acrylic paint from 's applied with a sponge brush. Then mod podge on top. This time I used a matte finish, which I liked better (for a boy) than glossy. The Cars design was my first test run, I think each one gets a little better. I change the design up every 3 weeks, so by the end I should be a " pro. " Thanks for compliment! Jake-18m (tort resolved/rt plagio/DocBand 7 weeks) > > > > > > > > Hi All. We would like you to join us in welcoming our newest > > > > moderator, Jake's mommy, . has been an invaluable > > > asset > > > > on the board sharing and supporting new plagio moms. , > > when > > > you > > > > get a moment, please share Jake's plagio story. > > > > > > > > Thanks and welcome! > > > > > > > > Becky, repo mom > > > > , repo grad > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 All I can just start off saying is WOW! I cannot believe to doctors weren't more helpful. Just, wow. I am glad you were persistent and went to CT. I bet you are so happy, especially since you are seeing results. We are also in Charlott and my 7 month old son is getting banded next week. I am very nervous about it. I am more nervous right now thinking of the weather getting warmer and having to deal with that, but we will take it day by day. Good luck to you. Maybe we will run into eachother at CT one day, haha. Jenn > > > > Hi All. We would like you to join us in welcoming our newest > > moderator, Jake's mommy, . has been an invaluable > asset > > on the board sharing and supporting new plagio moms. , when > you > > get a moment, please share Jake's plagio story. > > > > Thanks and welcome! > > > > Becky, repo mom > > , repo grad > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Jenn- Our next appointment is Monday, April 21st at 10:00am. Be there or be square! Do you know who your therapist is going to be? We have and he's great. I think you'll be in good hands with any of them. did our first eval, and 's going to be out on paternity leave the week we're due back, so we'll be seeing for the first time (if she ends up being your therapist, let me know how it goes!). I'm sure your son will do great. Half the battle is just making the decision to go through with banding, after that, it gets a lot easier. For me, it was like the second they but the band on my son, a HUGE weight was finally lifted off my shoulders and I just took a big sigh of relief. It felt really good! Just dress him really cool, and hopefully his body temp will adjust before it starts getting too hot down here. Someone else on the board just recently recommended a carseat chiller (it has ice packs in it and it keeps the carseat cool while your car is sitting out in the sun) from BabyDagny.com (http://www.babydagny.com/c/Favorites/p/Seat_Chiller_2-Pack) and I ordered them on Monday. I'll let you know how they work! Good luck with everything! Please keep us all posted! Jake-19m (tort resolved/rt plagio/DOCBand 7 weeks) Jordan-4 > > > > > > Hi All. We would like you to join us in welcoming our newest > > > moderator, Jake's mommy, . has been an invaluable > > asset > > > on the board sharing and supporting new plagio moms. , > when > > you > > > get a moment, please share Jake's plagio story. > > > > > > Thanks and welcome! > > > > > > Becky, repo mom > > > , repo grad > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 , You are funny. We may bemeeting you there. It all depends on when they want to do adjustments. I believe our therapist is Kathy. She seems to be nice and good with kids. Hopefully she will do a great job. I can all ready feel that relief you are talking about. I just know in two days, correction will start and that makes me so happy. We are trying to put our thick skin on to get ready for the looks and comments under the breath. I know it will be over before we know it, but it the dealind with the now. The seat chiller looks neat. Let me know how that works for you. Both of my kids would probably benefit from it. We just received our first regection letter from United Healthcare. I am not looking forward to dealing with them. That is just going to make me so mad. All because it is an orthotic and the don't cover that under our plan. I do not understand why they wouldn't want to treat an infant that needs help and to avoid further, more severe issues. Sorry, I will save that rant for another post. Jenn & #65007; & #65007; > > > > & #65007; & #65007; > > > > Hi All. We would like you to join us in welcoming our newest & #65007; & #65007; > > > > moderator, Jake's mommy, . has been an & #65007; & #65007; > invaluable & #65007; & #65007; > > > asset & #65007; & #65007; > > > > on the board sharing and supporting new plagio moms. , & #65007; & #65007; > > when & #65007; & #65007; > > > you & #65007; & #65007; > > > > get a moment, please share Jake's plagio story. & #65007; & #65007; > > > > & #65007; & #65007; > > > > Thanks and welcome! & #65007; & #65007; > > > > & #65007; & #65007; > > > > Becky, repo mom & #65007; & #65007; > > > > , repo grad & #65007; & #65007; > > > > & #65007; & #65007; > > > & #65007; & #65007; > > & #65007; & #65007; > & #65007; & #65007; Quote Link to comment Share on other sites More sharing options...
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