Guest guest Posted November 27, 2002 Report Share Posted November 27, 2002 I would like to thank all of your that responded to my cry for help. It was very uplifting to hear from all of you. I do have a couple of questions. Who has tried B6/Mag, DMG and the L-carnosine to address regression? Can someone recommend a DAN doctor? I live in Illinois, west of Chicago (35 miles). Also, a good neurologist would be helpful. We are working with a neurologist out of Children's Memorial in Chicago, (Dr. Ritacco). My son had a MRI done on Monday and we are waiting for the results, which we should have next week after the holiday. Any thoughts about Dr. Chez's carnaware product? I am trying to find something or someone that can help my son. It breaks my heart to see how much he has lost. I know I need to start somewhere. I could use some input on programming. Should I start at the beginning or midrange? Since he isn't using much language now. I am not sure if he knows, but just not able to communicate what he knows. Although, he doesn't appear to very interested in anything right about now. I will respond to each of you individually. However, I wanted to let you all know that I appreciated your input. I also would like to take this opportunity to wish EVERYONE a Happy and Blessed Thanksgiving. Although, we may have gone through some very difficult times this year, we still have things to be grateful for and we are indeed blessed. HAPPY THANKSGIVING! PS - It may take me a couple of days to respond individually because of the holiday. Happy Thanksgiving, Stressed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Hi Kelli That sounds very frustrating. hmmmmm............that makes me wonder what causes the slow regression? And are we told about that possiblity of regression? That frightens me frankly. I, like you, are adamant about not wanting to go through this again........but, we will do what we have to for our children. (while we are tearing our hair out behind closed doors in frustration of having to do it, huh?!) It seems like this should have been somehow prevented. Should they maybe monitor our kiddos more than just at the exited date of graduation? Cameron is similiar with the tort diagnosis, right side plagio, very mild really. We were just dismissed from Physical therapy this week. It seems the torticollis had resolved itself. Now I wonder, does it really ever resolve itself? Esp, since your son is so much older than Cameron, who is 7 months. Do you want to be daring and let us know where you are located? maybe I'm being too nosy. Sorry. I would love to have input on the whole regression issue? I bet there are some great experts here..............? anyone? Sorry you are going through this...........again. Hope you can find some peace and support here....... Joanne and Cameron 7 months Phx, AZ Doc band rec'd 8-24-04 My son regressed > Hi there!! I'm new to this board. (13 months) had just bee > fitted for his 2nd DOC band. Here's our story. > > > OHHHHHHHHHHHHHHHHHHHh, it's such a long story, but I'll give the > condensed version!! > > > We noticed from day one that 's head was a bit flat on the back > right side. (I had a REALLY hard pregnancy, and was breech > until a week before I delivered. I also had Placenta Previa, along > with other complications). Ped dismissed our concerns for 4 months, > until we demanded a diagnosis, because we knew something was not > right. So, he was diagnosed with Plagio. > > > So, many restless nights on the internet, many phone calls with our > insurance, seeing specialists up the whazoo, and an appt with Cranial > Tech.......and we were fitted for the band at 5 months. We were told > at his casting that he had Tort, although the Ped never diagnosed him > himself. It was clear that had Tort, although prior to being > told he had it, we had never heard of and no clue what Tort was. we > did some stretching, and it seemed to have gone away. it was pretty > mild to begin with. > > > showed tremendous improvement. So fast, that he was out and > graduated in just 6 short weeks. So, little by little, I started to > notice that his head wasn't as round as it was upon graduation. > > > We were never offered an exit mold, nor were exit photos taken. I > won't get into the should of/could of/would of....I've already beaten > myself up for that, over and over and over again. We were not given > the correct procedure upon graduation, which has now put in us in > this current spot. > > > We contacted CT, and were refitted for another DOC band. is now > 13 months old, and has been out of his first band for 7 months. The > regression had happened slowly. > > > So, now we will be in the band for at least 4 months. I am so mad at > many things right now, but most of all, I am mad that our case was > not handled properly upon graduation. I am not sue happy, nor will I. > BUT, now my precious has to go through this all over again, for > nothing!!! > > > Now we've been told that we should start Tort exercises with him > again since Tort has a way of sneaking back up on babies during > growth spurts. I have no problem doing this. As of now, I am > stretching his neck at every other diaper change, which is about 3-4 > stretches a day. Yep, that many diapers sometimes. :-) > > > So, I just wanted to share my story. I will continue to post, as well > as share as much of my learned wisdom as I can. I hope to become part > of this fabulous group, and learn lots more of what our kids are > going through. > > > kelli > mommy to (13 months) > banded 12/23/03 - 01/28/04 > and again on 08/19/04 - ?? > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Hi Kelli, Welcome to the group. My story is very similar to your actually. My daughter wore two DOCbands in a row last year from 4mos of age to 11mos of age and graduated in November. We started thinking her head wasn't what it was at graduation and contacted CT. We had declined the exit cast, but had done the exit photos, so we had her photos redone for comparison (they are in the photos/before and after/DOCband/Hannah B folder). We decided to go for DOCband #3 four months after Hannah had graduated. She wore the third band from 15 mos to 19 mos old and just graduated last month. She saw awesome correction for her age! I understand you're frustrated that you weren't offered the exit cast and photos at 's graduation, which I totally understand. However, it wouldn't change anything. You'd still be in exactly the same situation. All the exit cast and photos do is serve as a record of his final headshape in case you fear regression. If you're confident he regressed than that question is answered, photos and cast aside. At this point there is no known research as to why babies regress, and there is nothing you or anyone else can do to prevent it unfortunately. CT says the number who regress is about 1%. Lucky you, right? I always said if I could only be as lucky when playing the lottery! My daughter is also in the very small minority who wore 3 bands, lol. The younger the baby is though, the more at risk for regression they are. This would also be true if there was any unresolved tort. So, sorry you're having to go through this again, but please don't go the should've would've could've route. There is nothing you or anyone could have done to prevent it. This time will be about 17 mos at graduation, so hopefully his little noggin will be hardened up enough to maintain its shape. , mom to Hannah, DOCgrad 7/29 Cape Cod, Ma > Hi there!! I'm new to this board. (13 months) had just bee > fitted for his 2nd DOC band. Here's our story. > > > OHHHHHHHHHHHHHHHHHHHh, it's such a long story, but I'll give the > condensed version!! > > > We noticed from day one that 's head was a bit flat on the back > right side. (I had a REALLY hard pregnancy, and was breech > until a week before I delivered. I also had Placenta Previa, along > with other complications). Ped dismissed our concerns for 4 months, > until we demanded a diagnosis, because we knew something was not > right. So, he was diagnosed with Plagio. > > > So, many restless nights on the internet, many phone calls with our > insurance, seeing specialists up the whazoo, and an appt with Cranial > Tech.......and we were fitted for the band at 5 months. We were told > at his casting that he had Tort, although the Ped never diagnosed him > himself. It was clear that had Tort, although prior to being > told he had it, we had never heard of and no clue what Tort was. we > did some stretching, and it seemed to have gone away. it was pretty > mild to begin with. > > > showed tremendous improvement. So fast, that he was out and > graduated in just 6 short weeks. So, little by little, I started to > notice that his head wasn't as round as it was upon graduation. > > > We were never offered an exit mold, nor were exit photos taken. I > won't get into the should of/could of/would of....I've already beaten > myself up for that, over and over and over again. We were not given > the correct procedure upon graduation, which has now put in us in > this current spot. > > > We contacted CT, and were refitted for another DOC band. is now > 13 months old, and has been out of his first band for 7 months. The > regression had happened slowly. > > > So, now we will be in the band for at least 4 months. I am so mad at > many things right now, but most of all, I am mad that our case was > not handled properly upon graduation. I am not sue happy, nor will I. > BUT, now my precious has to go through this all over again, for > nothing!!! > > > Now we've been told that we should start Tort exercises with him > again since Tort has a way of sneaking back up on babies during > growth spurts. I have no problem doing this. As of now, I am > stretching his neck at every other diaper change, which is about 3- 4 > stretches a day. Yep, that many diapers sometimes. :-) > > > So, I just wanted to share my story. I will continue to post, as well > as share as much of my learned wisdom as I can. I hope to become part > of this fabulous group, and learn lots more of what our kids are > going through. > > > kelli > mommy to (13 months) > banded 12/23/03 - 01/28/04 > and again on 08/19/04 - ?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Hi Kelli welcome to the group. We are all here for you. I am SO sorry to hear that ( & you) have to go thru this again. PLEASE try to stop feeling guilty and beating yourself up about this. It happened and you knew the steps to take to correct it again. It totally sucks but you WILL get thru it and will be none the wiser. He will have a beutiful rounder noggin for the rest of his life. Take care and I look forward to hearing your updates ( & seeing pics if you want to share). Sue Colin F. 11 mos. StarBand 6/29 (8wks) Buffalo, NY > Hi there!! I'm new to this board. (13 months) had just bee > fitted for his 2nd DOC band. Here's our story. > > > OHHHHHHHHHHHHHHHHHHHh, it's such a long story, but I'll give the > condensed version!! > > > We noticed from day one that 's head was a bit flat on the back > right side. (I had a REALLY hard pregnancy, and was breech > until a week before I delivered. I also had Placenta Previa, along > with other complications). Ped dismissed our concerns for 4 months, > until we demanded a diagnosis, because we knew something was not > right. So, he was diagnosed with Plagio. > > > So, many restless nights on the internet, many phone calls with our > insurance, seeing specialists up the whazoo, and an appt with Cranial > Tech.......and we were fitted for the band at 5 months. We were told > at his casting that he had Tort, although the Ped never diagnosed him > himself. It was clear that had Tort, although prior to being > told he had it, we had never heard of and no clue what Tort was. we > did some stretching, and it seemed to have gone away. it was pretty > mild to begin with. > > > showed tremendous improvement. So fast, that he was out and > graduated in just 6 short weeks. So, little by little, I started to > notice that his head wasn't as round as it was upon graduation. > > > We were never offered an exit mold, nor were exit photos taken. I > won't get into the should of/could of/would of....I've already beaten > myself up for that, over and over and over again. We were not given > the correct procedure upon graduation, which has now put in us in > this current spot. > > > We contacted CT, and were refitted for another DOC band. is now > 13 months old, and has been out of his first band for 7 months. The > regression had happened slowly. > > > So, now we will be in the band for at least 4 months. I am so mad at > many things right now, but most of all, I am mad that our case was > not handled properly upon graduation. I am not sue happy, nor will I. > BUT, now my precious has to go through this all over again, for > nothing!!! > > > Now we've been told that we should start Tort exercises with him > again since Tort has a way of sneaking back up on babies during > growth spurts. I have no problem doing this. As of now, I am > stretching his neck at every other diaper change, which is about 3- 4 > stretches a day. Yep, that many diapers sometimes. :-) > > > So, I just wanted to share my story. I will continue to post, as well > as share as much of my learned wisdom as I can. I hope to become part > of this fabulous group, and learn lots more of what our kids are > going through. > > > kelli > mommy to (13 months) > banded 12/23/03 - 01/28/04 > and again on 08/19/04 - ?? Quote Link to comment Share on other sites More sharing options...
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