Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 Hey all, I just had a few thoughts on the regression issue. From my own experience, sometimes I think has regressed, until I wash his hair and it is all matted down against his skull. Then I am taken back to the reality that his head really IS round. My thinking on this is that while he was in treatment, we noticed every little change. And over the near 5 month period with 2 bands, we didn't forget as easily how far we had come. Now that the bands have been off for about 5 months, it is even harder to remember how bad he was. Also, I think since I've been educated on what to look for (assymetry, bossing), I focus on the 5-10% not corrected and have forgotten about the 90-95% corrected. I take for granted he actually has a normal eyebrow ridge and a cheekbone, and focus on the fact that there is a TINY difference between the two sides of his face (and head, for that matter). When I look at recent pictures of which show NO facial assymetry whatsoever and compare them to those I took at 6-8 weeks old it really shows just how far we've come in a year. It is enough to make my heart sick all over again. Just my thoughts. Tami 9/99 (DOC bands 3/00-8/00) 7/97 Tulsa, OK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 Thanx Tami, I totally agree. Often times, I wonder how much better we could have done with a second band, but then I have to remind myself that we did see about 85% correction, and that Hanna's head really does look A LOT better than it did before treatment. We were never looking for perfection from the get go, and I'd say that 85% is pretty good! ) Thanx for putting me back into perspective (again!) )Kendra(o: Tami Warner wrote: Hey all, I just had a few thoughts on the regression issue. >From my own experience, sometimes I think has regressed, until I wash his hair and it is all matted down against his skull. Then I am taken back to the reality that his head really IS round. My thinking on this is that while he was in treatment, we noticed every little change. And over the near 5 month period with 2 bands, we didn't forget as easily how far we had come. Now that the bands have been off for about 5 months, it is even harder to remember how bad he was. Also, I think since I've been educated on what to look for (assymetry, bossing), I focus on the 5-10% not corrected and have forgotten about the 90-95% corrected. I take for granted he actually has a normal eyebrow ridge and a cheekbone, and focus on the fact that there is a TINY difference between the two sides of his face (and head, for that matter). When I look at recent pictures of which show NO facial assymetry whatsoever and compare them to those I took at 6-8 weeks old it really shows just how far we've come in a year. It is enough to make my heart sick all over again. Just my thoughts. Tami 9/99 (DOC bands 3/00-8/00) 7/97 Tulsa, OK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 yes, sometimes you just need to move on in life >From: & Kendra <kbgarv@...> >Reply-Plagiocephalyegroups >Plagiocephalyegroups >Subject: Re: Regression >Date: Thu, 11 Jan 2001 11:37:12 -0700 > >Thanx Tami, I totally agree. >Often times, I wonder how much better we could have done with a second >band, but then I have to remind myself that we did see about 85% >correction, and that Hanna's head really does look A LOT better than it >did before treatment. We were never looking for perfection from the get >go, and I'd say that 85% is pretty good! ) > >Thanx for putting me back into perspective (again!) >)Kendra(o: > >Tami Warner wrote: > > > Hey all, > > > > I just had a few thoughts on the regression issue. > > > > >From my own experience, sometimes I think has regressed, until > > I wash his hair and it is all matted down against his skull. Then I > > am taken back to the reality that his head really IS round. > > > > My thinking on this is that while he was in treatment, we noticed > > every little change. And over the near 5 month period with 2 bands, > > we didn't forget as easily how far we had come. Now that the bands > > have been off for about 5 months, it is even harder to remember how > > bad he was. > > > > Also, I think since I've been educated on what to look for > > (assymetry, bossing), I focus on the 5-10% not corrected and have > > forgotten about the 90-95% corrected. I take for granted he actually > > has a normal eyebrow ridge and a cheekbone, and focus on the fact > > that there is a TINY difference between the two sides of his face > > (and head, for that matter). When I look at recent pictures of > > which show NO facial assymetry whatsoever and compare them to those I > > took at 6-8 weeks old it really shows just how far we've come in a > > year. It is enough to make my heart sick all over again. > > > > Just my thoughts. > > > > Tami > > 9/99 (DOC bands 3/00-8/00) > > 7/97 > > Tulsa, OK > > > > > > eGroups Sponsor > [Click here to Win a 2001 Acura MDX] > Click here to Win a 2001 Acura MDX > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2001 Report Share Posted January 25, 2001 Hi A quick question that I would like to know before I start this is how bad do these kids regress? I am reading regression for a while and then improvement. But just how bad is it? Sorry , but going back to what was is kinda scary. Also is there more regression on DMSA alone or DMSA / LA ? kelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 Hi , I don't know how long it lasts, maybe someone else can answer what their experience has been. For us we just started 3 weekends ago, our son is 8 yrs old and 55 pds, and was doing well before chelation. Since chelation it has been difficult, we are seeing every bad behavior we saw when he was little, only with more force and language with it. But with the bad we have seen the good, noticing more things, pointing things out, using more appropriate verbal responses, he is verbal already. At times we have seen more affection and concern for people, but that comes and goes, but I won't give up until we have him back the way he was prior to chelation and better, he is one that is getting very sick also with colds and he is fatigued. We started out very low on 25mg of DMSA only because he tends to be very sensitive and reacts to most everything. We will be giving him a break this weekend, we will be doing some blood work again and running some other tests to check other things, we hope to start again soon. Other people have had much better experiences I hope they share, but I think we all have to hear both sides so we know what may occur. Good Luck, Leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 , I don't know that you get across-the-board regression. My daughter has been stimming (hair-twirling) pretty bad, but other than that she's showing improvement. She's on low dose DMSA (50mg) and I think that may be why she has experienced so few negatives. Re: [ ] regression Hi A quick question that I would like to know before I start this is how bad do these kids regress? I am reading regression for a while and then improvement. But just how bad is it? Sorry , but going back to what was is kinda scary. Also is there more regression on DMSA alone or DMSA / LA ? kelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 Hi , I read a post on the CT site that someone from CT posted back to a Mom about regression. I looked for it, but it is gone. It said that it is VERY rare for regression to happen. is a thumb sucker too and does the same thing that is doing. When graduates, if she is still doing that I'm going to reposition her head. If I were you I'd just repo her head at night, to put your mind at ease. The percentage for regression is really low. > Hi all. I know we've covered this topic before but I am so worried > that 's head is going to go flat again. Is this a valid worry? > She's sitting up and on her tummy whenever she is awake. I worry > because at times when she is sleeping at night she still turns her > head the " old way " that caused her flatness to begin with. She is a > thumb sucker and that is the thumb she sucks to go to sleep. I do > know that she does move her head around throughout the night but just > seeing it in that position is freaking me out. Should I be > concerned???? > > & (7.5 months, STARband 8/26/02, graduated 11/5/02) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 Hi : Ah, the worrying never stops being a mom does it?? The odds of regression are quite low. I've been a member of the board for 2 yrs now and have only heard of maybe a couple of regression cases. Just keep your eye on 's headshape, which I know you will!!! But being she's sitting up now, and spends far less time on her back than as a newborn, you really shouldn't have any regression. Debbie Abby's mom DOCgrad MI > Hi all. I know we've covered this topic before but I am so worried > that 's head is going to go flat again. Is this a valid worry? > She's sitting up and on her tummy whenever she is awake. I worry > because at times when she is sleeping at night she still turns her > head the " old way " that caused her flatness to begin with. She is a > thumb sucker and that is the thumb she sucks to go to sleep. I do > know that she does move her head around throughout the night but just > seeing it in that position is freaking me out. Should I be > concerned???? > > & (7.5 months, STARband 8/26/02, graduated 11/5/02) Quote Link to comment Share on other sites More sharing options...
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