Guest guest Posted September 6, 2006 Report Posted September 6, 2006 Hi Cherie, my name is Caroline Mavridis and I have 12 year identical twin boys who both have Ds We live in British Columbia Canada. Neil is the oldest by half an hour and he has always tilted his head to the right and looking out of the corner of his eye. I thought he was having small seizures or there was a problem with his neck. All the test were negative and he still tilts his head like he is spacing out or processing information his own way. Sometimes I just have to say to him put your head straight or tap him on the shoulder to bring him back to us. He is never far away in his mind but some times I think the world around him is too busy and he needs to withdraw from it for a few minutes to process everything he is learning. Also another thing you might want to check out is how your daughters eye sight is. I have a friend who daughter also tilts her head to see things becuase she has small black dots in her eyes and she tries to look around the dots. She really cant look around them because the dots have been there since birth. I hope this helps. If you want to email me privately my email is mavridisc@... Take Care Caroline > > Hi, > I am wondering if anyone else's child has (or had) a head tilt. > tilts her head to the side and has done this since birth. We > are beginning therapy for her, and she may start wearing some type > of collar around her neck. > > We are in the Cayman Islands, where access to therapy for her is > very limited. Probably if we were in the US, this would have been > already resolved (she is 2 1/2). The (obviously inexperienced) > therapist here with the (very underfunded) government system told us > this head tilt would correct on its own as she grew up. That is not > happening, and on our last visit to the dr., her pediatrician > thought it was getting worse instead of better. So, we are starting > private therapy next week. I have started reading about it on the > net, and from what I have read, therapy and possibly a neck > collar/brace will correct this, surgery being very rarely needed. > > Has anyone else had experience with this? > > Thanks, > > Cherie S. > mom to Ian 12, 9, Kate & (DS) 2 1/2 > Quote
Guest guest Posted September 6, 2006 Report Posted September 6, 2006 cayman_mom_of_twins wrote: Hi, I am wondering if anyone else's child has (or had) a head tilt. tilts her head to the side and has done this since birth. We are beginning therapy for her, and she may start wearing some type of collar around her neck. We are in the Cayman Islands, where access to therapy for her is very limited. Probably if we were in the US, this would have been already resolved (she is 2 1/2). The (obviously inexperienced) therapist here with the (very underfunded) government system told us this head tilt would correct on its own as she grew up. That is not happening, and on our last visit to the dr., her pediatrician thought it was getting worse instead of better. So, we are starting private therapy next week. I have started reading about it on the net, and from what I have read, therapy and possibly a neck collar/brace will correct this, surgery being very rarely needed. Has anyone else had experience with this? Thanks, Cherie S. mom to Ian 12, 9, Kate & (DS) 2 1/2 HI Cherie, One of my twin girls, Haley who's almost 4 years now, has had the same problem with the head tilt since birth. The twins were born 2 mos premature and hadn't grown for 3 weeks, so at birth, were developmentally 29 weeks. Haley had to lay on her left side for at least the first 6 months or she would desaturate. This was whether she was on O2 or not. She had many desats while in the NICU, one period of time that was so bad that the nurses didn't give her a hands-on every three hours, only when she woke up. She would scream and that made her desaturate unless she was laying on her left side. I taught her to suck, breathe, swallow breast milk and preemie formula out of a bottle with her upright, her lower chin held up and forward, AND while she was angled on her left side in order for her to breathe. She was also exempt from the "Back to Sleep" program. The pulmonologist had us raise both girls' upper side of the crib so they slept at an angle, but the girls were also wedged in, Haley on her left side; Nikki on her back. Subsequently, Haley had a definite head tilt to the left. Through the years, her head tilt has evolved and reduced. Whenever she learned anything new, ie, sitting, standing, cruising, walking, crawling up stairs, eating/drinking, etc., it's always something that has had to be addressed to help diminish the tilt over time. I still see her tilt when she is tired or floppy. Not sure if this helps or not. Since 's seems to be getting worse, that is a little different than what I remember. Do you think it might have to do with learning a new p.t. skill and trying to learn how to compensate? Maybe it might have something to do with processing thought, etc., like was mentioned. Good luck with your investigation. Regards, Granata Mom to Haley & Nikki, 4 yr (on 9/12) twin girls, both w/DS, and , 2 1/2 yr son Quote
Guest guest Posted September 7, 2006 Report Posted September 7, 2006 I had a problem with tilting her head. She had worn a helmet for plagiocephaly for 7 months (she had started wearing it at 3 months of age). We had always thought she had tilted her head from the weight of the helmet. The problem did resolve over time, until 2 years of age. __________________________________________________ Quote
Guest guest Posted September 10, 2006 Report Posted September 10, 2006 I have never had a child with a head tilt but I worked for a plastic surgeon who specialized in pediatric craniofacial surgery and we used to get some kids with a head tilt due to torticollis. Physical therapy was usually the best thing for them although it has been four or five years since I dealt with it and the children were usually under the age of one. I would do a google search and see what excercises are best for torticollis that you could do at home with her. If the therapists are not experts on it, you could probably become one just as fast. I would be VERY slow to consider surgery since they really don't seem to have a good handle on it now. I would try to give her neck muscles the best chance at stretching themselves before I considered surgery. Good luck and keep us posted. Mom to (6), (3) Will (ds) and Jake (23 months) ---- cayman_mom_of_twins wrote: > Hi, > I am wondering if anyone else's child has (or had) a head tilt. > tilts her head to the side and has done this since birth. We > are beginning therapy for her, and she may start wearing some type > of collar around her neck. > > We are in the Cayman Islands, where access to therapy for her is > very limited. Probably if we were in the US, this would have been > already resolved (she is 2 1/2). The (obviously inexperienced) > therapist here with the (very underfunded) government system told us > this head tilt would correct on its own as she grew up. That is not > happening, and on our last visit to the dr., her pediatrician > thought it was getting worse instead of better. So, we are starting > private therapy next week. I have started reading about it on the > net, and from what I have read, therapy and possibly a neck > collar/brace will correct this, surgery being very rarely needed. > > Has anyone else had experience with this? > > Thanks, > > Cherie S. > mom to Ian 12, 9, Kate & (DS) 2 1/2 > > > Quote
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