Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Hi everyone. I wanted to introduce myself. My name is and I'm from Illinois. My daughter is going to be 1 very soon and she just got her STARband on Thursday. Her name is Alayna. She has what is called 1p36 Deletion Syndrome and she is not sitting on her own. She just began rolling from her back to her tummy. She is very delayed developmentally and cognitively. So, she has a flat head from being on her back most of the time and from sitting in the bouncy seat and car seat. I'm very excited to join this group. I've read some of the most recent posts and I'm sure it will be helpful. I tried to do a search, but didn't have much luck. On average how long do these kids wear these helmets? I'm sure it depends upon the severity, but it sure would be nice to have it off before summer hits. Best Wishes, - mom to Alayna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 I'm in Round Lake, up by Grayslake and Foxlake... where are you? :-) **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Hi and welcome to the group. My daughter was banded at 9 months and she wore it for 3 months. She had high moderate to severe plagio/brachy. Please keep us posted on how she is doing. Angie and Jenna(STAR grad 2003) kY repo New to the Group! Hi everyone. I wanted to introduce myself. My name is and I'm from Illinois. My daughter is going to be 1 very soon and she just got her STARband on Thursday. Her name is Alayna. She has what is called 1p36 Deletion Syndrome and she is not sitting on her own. She just began rolling from her back to her tummy. She is very delayed developmentally and cognitively.So, she has a flat head from being on her back most of the time and from sitting in the bouncy seat and car seat.I'm very excited to join this group. I've read some of the most recent posts and I'm sure it will be helpful.I tried to do a search, but didn't have much luck. On average how long do these kids wear these helmets? I'm sure it depends upon the severity, but it sure would be nice to have it off before summer hits.Best Wishes, - mom to Alayna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Hi Angie. Nice to meet you too. Everyone is so nice. I'm all new to most of these terms. I wasn't ever really told if she had high, low, moderate, etc plagio. And I'm not sure what tort or brachy is. I've got to do my research! I'll keep you all posted. I hope in 3-4 months we can graduate her too! She is adjusting to it quite well, but I'm having a hard time getting to her face and cheeks to kiss her Angie - mom to Alayna (almost 1 and just got banded)Angie P <apope04@...> wrote: Hi and welcome to the group. My daughter was banded at 9 months and she wore it for 3 months. She had high moderate to severe plagio/brachy. Please keep us posted on how she is doing. Angie and Jenna(STAR grad 2003) kY repo New to the Group! Hi everyone. I wanted to introduce myself. My name is and I'm from Illinois. My daughter is going to be 1 very soon and she just got her STARband on Thursday. Her name is Alayna. She has what is called 1p36 Deletion Syndrome and she is not sitting on her own. She just began rolling from her back to her tummy. She is very delayed developmentally and cognitively.So, she has a flat head from being on her back most of the time and from sitting in the bouncy seat and car seat.I'm very excited to join this group. I've read some of the most recent posts and I'm sure it will be helpful.I tried to do a search, but didn't have much luck. On average how long do these kids wear these helmets? I'm sure it depends upon the severity, but it sure would be nice to have it off before summer hits.Best Wishes, - mom to Alayna Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Good luck to you guys too! It sounds like many of us are new to this and just getting one. I know questions will arise and I'll be asking. Let us know how your son adjusts. Angie - mom to Alayna Gardner <tinkmommyof3@...> wrote: well angela my son is 8 and 1/2 months and will be getting his starband on the 22 and i was told that he would probably have to wear it 3 - 6 months but closer to 6 months. Re: New to the Group! where in Illinois are you? I'm in the western suburbs. Jen"angela.dekeyrel" <angela.dekeyrel> wrote: Hi everyone. I wanted to introduce myself. My name is and I'm from Illinois. My daughter is going to be 1 very soon and she just got her STARband on Thursday. Her name is Alayna. She has what is called 1p36 Deletion Syndrome and she is not sitting on her own. She just began rolling from her back to her tummy. She is very delayed developmentally and cognitively.So, she has a flat head from being on her back most of the time and from sitting in the bouncy seat and car seat.I'm very excited to join this group. I've read some of the most recent posts and I'm sure it will be helpful.I tried to do a search, but didn't have much luck. On average how long do these kids wear these helmets? I'm sure it depends upon the severity, but it sure would be nice to have it off before summer hits.Best Wishes, - mom to Alayna Never miss a thing. Make your homepage. Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 Hi , As a speech pathologist and mother, I want to applaude you for your hard work with your children. To answer your question, apraxia can coexist with " cognitive challenges " as you put it. If your son has global apraxia, then one might expect some overall delays but that does not mean that he is not bright, nor that he will make progress. I know progress is slow but you should pat yourself on the back for everything you have done. Hope this helps, Carissima spearson40 <brentsusan@...> wrote: Hi All, I hope this post works as I've tried several times over the past couple weeks to introduce myself and it doesn't seem to work (?). I've joined this group, as well as the Apraxia/Dyspraxia discussion group. I REALLY could use some encouragement/insight from any of you who are willing to gift me with your time and thoughts..... Here's an abbreviated version of our " story " : *Our 6 y.o. son Blake is mildly dyspraxic (which has affected his gross and find motor skills but not speech) and low-tone. *Our 33 month old son Owen appears globally dyspraic (to include speech) and low-tone, as well. *Owen has met milestones somewhat delayed (crawling at 11 months, walking at 18 months, etc.) *Starting at 15 months Owen was getting in-home therapy thru Early Intervention here in California (we live in Orange County), and then progressed into center-based p.t., o.t., and speech. He's also been receiving ABA therapy, even though most therapists and a neurologist he has seen all agree he doesn't appear to be autistic. *Last spring I put him on a GF/CF/soy-free diet per the recommendation of a local DAN doctor (he's asthmatic and has had some mild eczema.) Diet helped with bowel movements and skin cleared up somewhat. *I started him on Cod Liver Oil at that time, but then switched to Nordic Naturals Omega 3-6-9 liquid based on what I read on the Cherab Foundation. *Owen has made, very slow progress but is basically " consistently inconsistent " . In 3 months he will be 3 years old and I'm going thru one of my sad/depressed states (where I do all my research, staying up late, shed a lot of tears, wonder what's wrong, etc. etc.) All the therapists agree he's making slow, steady progress but at the same time we're all a little baffled by him. *I'm going to go back to the DAN doctor after not seeing her for 9 months or so and will probablly do MB12 shots. I'm also considering HBOT. *But I'm just wondering....can globally dyspraxic kids (if that's my son's issue) appear cognitively challenged? That's my main question. Or would they appear to still have it all going on " up there " even though they can't get it out. Our little guy is a mystery. And I'm wondering if the root of the problem is really delayed cognition, causing all the other delays? *One more tid-bit of history....when he was 9 1/2 months old, he ended up in respiratory distress and almost died....ended up in peds ICU for several days. That was the beginning of us realizing he was asthmatic. *Oh! And I'm also thinking we should be testing for metals toxicity... as that could be causing a cognitive delay. He hasn't had all vaccinations, but definitely had enough in his first year of life, which I wish I could go back and " undo. " Thanks so much for your thoughts, any of you who can share them! Warmly, Pearson Carissima Gori Uptmor, MS, CCC-SLP Speech language pathologist --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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