Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 Hi Sherri-- if you go to the internet site for this list, there is a place on the left side of the screen that says FILES. You can get a lot of enzyme information off of that list. Also, you can browse the archives if you want, but the Files are really thorough. I highly recommend starting there. In the Fall, DeFelice will have her enzymes book coming out. You said your doctor will dismiss this form of supplement for your son-- well, in all honesty, you don't really NEED a doctor to do enzymes. It has taken me quite some time to figure this out, but it is the sad truth when it comes to autism. Many docs do not know. It is nice to try and educate them, but in the end, you will be your child's best doctor. My friend's ped could NOT believe that by going GFCF, her son stopped vomiting-- it was a daily occurrence. Stay on the board, and as you learn more you will feel better prepared to make all these decisions for your child. Another good group is to discuss metal toxicity and chelation issues. W (we're on the western side of WA state) > Hi there. My name is Sherri, and we are an Air Force Family here in > Washington State. I would LOVE to know more about enzyme therapy, as I > know my doctor will dismiss this form of supplement for my son. I just > want to do EVERYTHING we can for him. I know that this may be a > particularly helpful plan for him because all he eats is gluten/casein, > etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Hi and Welcome to our group! It's good that you'll already in the works of getting Emma treated so quickly from returning home with her! Congrats on daughter #2 by the way! My son is in a DOCband as well, we're only 1.5 weeks into it, but I'm already seeing some improvements! He has high-moderate/severe plagio, so I can't comment on the brachy, but I know that lots of our moms here are dealing with brachy and will share their stories/progress with you. Please keep us updated on Emma as she goes along, and post some pics of her if you have the chance!! Lacy Waydon's mom 8 months DOCband 1.5 weeks --- In Plagiocephaly , " mary_mcrae2003 " <mmcrae@c...> wrote: > Hi, > I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'? > > > I guess to start, I will go read some previous posts and check out > the photos section... > > Thanks, > > McRae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Hi and Welcome to our group! It's good that you'll already in the works of getting Emma treated so quickly from returning home with her! Congrats on daughter #2 by the way! My son is in a DOCband as well, we're only 1.5 weeks into it, but I'm already seeing some improvements! He has high-moderate/severe plagio, so I can't comment on the brachy, but I know that lots of our moms here are dealing with brachy and will share their stories/progress with you. Please keep us updated on Emma as she goes along, and post some pics of her if you have the chance!! Lacy Waydon's mom 8 months DOCband 1.5 weeks --- In Plagiocephaly , " mary_mcrae2003 " <mmcrae@c...> wrote: > Hi, > I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'? > > > I guess to start, I will go read some previous posts and check out > the photos section... > > Thanks, > > McRae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Hi - Welcome to the group! My son Chase has moderate Brachy and has been in a Starband for 4 weeks now. We started the band right at 7 months and have seem MUCH improvement already. In fact, if he were not to improve one bit more, I'd still be satisfied. You must have a wonderful pediatrician to get diagnosed and casted within two weeks. It took me several months to convince mine that there was a problem. Then, it took several more months to get into the cranial-facial plastic surgeon, get the referral and get the band! I was in a hurry but it seemed that no one else was. Congratulations on the adoption, children are certainly a blessing. I know that there are other adoptive parents in this group, hopefully they will reply. Post some pictures (of both your daughters) if you have some, and keep us posted on Emma's progress. This has been a wonderful place for me to get answers that I needed, hope you find it helpful too! , Mom to Hunter, Hannah and Chase Henry (Mod. Brachy/ Mild Plagio) --- In Plagiocephaly , " mary_mcrae2003 " <mmcrae@c...> wrote: > Hi, > I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'? > > > I guess to start, I will go read some previous posts and check out > the photos section... > > Thanks, > > McRae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Hi - Welcome to the group! My son Chase has moderate Brachy and has been in a Starband for 4 weeks now. We started the band right at 7 months and have seem MUCH improvement already. In fact, if he were not to improve one bit more, I'd still be satisfied. You must have a wonderful pediatrician to get diagnosed and casted within two weeks. It took me several months to convince mine that there was a problem. Then, it took several more months to get into the cranial-facial plastic surgeon, get the referral and get the band! I was in a hurry but it seemed that no one else was. Congratulations on the adoption, children are certainly a blessing. I know that there are other adoptive parents in this group, hopefully they will reply. Post some pictures (of both your daughters) if you have some, and keep us posted on Emma's progress. This has been a wonderful place for me to get answers that I needed, hope you find it helpful too! , Mom to Hunter, Hannah and Chase Henry (Mod. Brachy/ Mild Plagio) --- In Plagiocephaly , " mary_mcrae2003 " <mmcrae@c...> wrote: > Hi, > I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'? > > > I guess to start, I will go read some previous posts and check out > the photos section... > > Thanks, > > McRae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Hello and welcome to the group. This is a wonderful group for support and info. My Daughter was banded at 7mo, 1wk for high end moderate plagiocephaly. There are many parents on here who have banded their babies for moderate or severe Brachy at your daughters age and older, so I'm sure that you will get plenty of responses on that. A lot of it does depend on their growth while in the band. My Daughter only wore her band for 11 weeks. Good luck with everything! Jen (11 mo), tort resolved, Hanger Band Grad (3 years) --- In Plagiocephaly , " mary_mcrae2003 " <mmcrae@c...> wrote: > Hi, > I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'? > > > I guess to start, I will go read some previous posts and check out > the photos section... > > Thanks, > > McRae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Hello and welcome to the group. This is a wonderful group for support and info. My Daughter was banded at 7mo, 1wk for high end moderate plagiocephaly. There are many parents on here who have banded their babies for moderate or severe Brachy at your daughters age and older, so I'm sure that you will get plenty of responses on that. A lot of it does depend on their growth while in the band. My Daughter only wore her band for 11 weeks. Good luck with everything! Jen (11 mo), tort resolved, Hanger Band Grad (3 years) --- In Plagiocephaly , " mary_mcrae2003 " <mmcrae@c...> wrote: > Hi, > I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'? > > > I guess to start, I will go read some previous posts and check out > the photos section... > > Thanks, > > McRae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Welcome ! COngratulations on the adoption. My son, Seth, has severe brachycephaly and tort that led to the misalignment of his lips and ears, as well as puffiness in one cheek. His cranial vaulting was one of the worst the ortho had seen. He was ten lbs when he was born and the in utero constraint was too much. Because of all the other testing (optho, ct scans, pt, etc) and the red tape we had to go through before we could band him, he did not get his starband until right at 8mo, even though he was diagnosed at 4w. He is now 10mo old and we have seen serious improvement. If we stopped wearing the helmet now I would be thrilled. His face is begininng to realign, and the back of his head has rounded out a lot. He still has some cranial vaulting but it is much better than what we started. At the last appt, the ortho made an adjustment to help move that along more. The ortho thinks that we will have to wear the helmet for two more months full time, and then two more months just at night. Good luck and keep us updated! Jen and Seth--brachy/tort/starbanded 4/27 --- mary_mcrae2003 <mmcrae@...> wrote: > Hi, > I am McRae from Michigan and my husband is > . Our daughter > Emma (8 mos. old, adopted from China just under two > weeks ago, home > from China one week) was diagnosed with severe > brachiocephaly. We > already had her casted for the DOC band in Madison, > WI (this past > Wednesday) and will get her band on July 11th. This > is our second > adoption from China. Our first daughter from China, > Maya, also wore > a DOC band to improve her plagiocephaly (she was > diagnosed > with 'moderate' plagio) and it worked great for her, > even though we > started her band when she was 16 mos. old. Maya's > head was very > assymetrical and this time we are dealing with just > extreme flatness > across the back, making Emma's face wide. I guess > I'm just looking > to get and give support to others who are going > through this same > thing and also to get info. from others who have had > success (or > not) improving their baby's brachiocephaly. How > much improvement > have others seen? Esp. if their baby is a bit older > (8 mos.) Are > there other adoptive parents out there? Did you > need only one band > or two if your child's plagio was 'severe'? > > > I guess to start, I will go read some previous posts > and check out > the photos section... > > Thanks, > > McRae > > > > __________________________________ Stay connected, organized, and protected. Take the tour: http://tour.mail./mailtour.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Welcome ! COngratulations on the adoption. My son, Seth, has severe brachycephaly and tort that led to the misalignment of his lips and ears, as well as puffiness in one cheek. His cranial vaulting was one of the worst the ortho had seen. He was ten lbs when he was born and the in utero constraint was too much. Because of all the other testing (optho, ct scans, pt, etc) and the red tape we had to go through before we could band him, he did not get his starband until right at 8mo, even though he was diagnosed at 4w. He is now 10mo old and we have seen serious improvement. If we stopped wearing the helmet now I would be thrilled. His face is begininng to realign, and the back of his head has rounded out a lot. He still has some cranial vaulting but it is much better than what we started. At the last appt, the ortho made an adjustment to help move that along more. The ortho thinks that we will have to wear the helmet for two more months full time, and then two more months just at night. Good luck and keep us updated! Jen and Seth--brachy/tort/starbanded 4/27 --- mary_mcrae2003 <mmcrae@...> wrote: > Hi, > I am McRae from Michigan and my husband is > . Our daughter > Emma (8 mos. old, adopted from China just under two > weeks ago, home > from China one week) was diagnosed with severe > brachiocephaly. We > already had her casted for the DOC band in Madison, > WI (this past > Wednesday) and will get her band on July 11th. This > is our second > adoption from China. Our first daughter from China, > Maya, also wore > a DOC band to improve her plagiocephaly (she was > diagnosed > with 'moderate' plagio) and it worked great for her, > even though we > started her band when she was 16 mos. old. Maya's > head was very > assymetrical and this time we are dealing with just > extreme flatness > across the back, making Emma's face wide. I guess > I'm just looking > to get and give support to others who are going > through this same > thing and also to get info. from others who have had > success (or > not) improving their baby's brachiocephaly. How > much improvement > have others seen? Esp. if their baby is a bit older > (8 mos.) Are > there other adoptive parents out there? Did you > need only one band > or two if your child's plagio was 'severe'? > > > I guess to start, I will go read some previous posts > and check out > the photos section... > > Thanks, > > McRae > > > > __________________________________ Stay connected, organized, and protected. Take the tour: http://tour.mail./mailtour.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Hi , Wow, it is encouraging to see how well your son Chase is doing in his band! Did he adjust to it quickly at first...I will have to read the file on how to get your baby to adjust. I feel bad that my little one (just recently adopted for those who did not read my previous post) is already going through so many changes - new family, new home (smells, sights...) and now we are going to put a helmet on her head. But, as we speak she is asleep flat on her back (back of her head) and though I have tried positioning her, she goes right back. As for our GREAT PEDIATRICIAN :-) Since we went through this before (our daughter, now 3, had a DOC band in 2003), and we were delayed many months by a pediatrician who kept telling us our baby's head would 'round out', we decided to be more insistent this time - fortunately, our pediatrician has been totally supportive. We called the clinic in Madison last tues. and they had an opening for the very next day (!) so we quickly called our pediatrician here and she got us in AN HOUR later. We had to quickly make sure our daughter was already registered on our medical insurance and we were off. Emma was casted the next afternoon - she did very well at first - no crying at all, BUT then they had to take her bottle away to finish the back of the cast and she was furious about that! LOL I just can't wait to get her helmet - I can't stand to see her laying on that very flat head! I will post some pictures next. McRae > Hi - > > Welcome to the group! My son Chase has moderate Brachy and has been > in a Starband for 4 weeks now. We started the band right at 7 > months and have seem MUCH improvement already. In fact, if he were > not to improve one bit more, I'd still be satisfied. > > You must have a wonderful pediatrician to get diagnosed and casted > within two weeks. It took me several months to convince mine that > there was a problem. Then, it took several more months to get into > the cranial-facial plastic surgeon, get the referral and get the > band! I was in a hurry but it seemed that no one else was. > > Congratulations on the adoption, children are certainly a blessing. > I know that there are other adoptive parents in this group, > hopefully they will reply. Post some pictures (of both your > daughters) if you have some, and keep us posted on Emma's progress. > This has been a wonderful place for me to get answers that I needed, > hope you find it helpful too! > > , Mom to Hunter, Hannah and Chase Henry (Mod. Brachy/ Mild > Plagio) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 , Congratulations on your new duaghter Emma!!! How exciting two girls now! I am a Doc mom too and our son Dominick has worn two bands and is getting ready for his third due to severe inutero plagiocephaly. I have seen amazing results so far too. We have alot of moms here with babies being treated for brachy, so you should receive great advice. I am sorry you have to go through this again but at least you already know how great the results can be,lol. Keep us posted on how Emma is progressing, CAROLG --- In Plagiocephaly , " mary_mcrae2003 " <mmcrae@c...> wrote: > Hi, > I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'? > > > I guess to start, I will go read some previous posts and check out > the photos section... > > Thanks, > > McRae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Hi , Welcome home and congrats. We have a story very similar to yours. We adopted our daughter Lilly from China in late Sept.04. We returned to the U.S. in mid-October and had our initial consult with Cranial Tech in Sun Prairie, WI...affiliated with the Madison clinic...five days after hitting the country. We see Barnard Feit. We think of her as our angel. Our daughter was diagnosed with very severe plagio and banded by late October. We saw wonderful results, but she definitely had residual plagio. She was 10 months old at the start of treatment. We decided to go ahead with a second band which was in March 05. She exceeded their expectations for growth, but still had residual plagio. Lilly started her third band last Wednesday. She is now 18 months old. We are hoping for more, but have been warned that she will always have some residual plagio. I'm assuming you are using the Dean Clinic in Madison. If you have to pay out of pocket (which we have on all three) they have put a new policy in place for discounting 20% if you pay right away in cash or credit card. Our daughter had no problems with the transition to the band. At that time, she was extremely delayed, passive and hypotonic. Now she is a spunky, happy, age-appropriate toddler who loves to say no. Best of luck. Please feel free to e-mail me. Aren't these little girls amazing in what they can handle? Jenni mom to Lilly DOC band x 3 p.s. where are your girls from in China? mary_mcrae2003 <mmcrae@...> wrote: Hi,I am McRae from Michigan and my husband is . Our daughter Emma (8 mos. old, adopted from China just under two weeks ago, home from China one week) was diagnosed with severe brachiocephaly. We already had her casted for the DOC band in Madison, WI (this past Wednesday) and will get her band on July 11th. This is our second adoption from China. Our first daughter from China, Maya, also wore a DOC band to improve her plagiocephaly (she was diagnosed with 'moderate' plagio) and it worked great for her, even though we started her band when she was 16 mos. old. Maya's head was very assymetrical and this time we are dealing with just extreme flatness across the back, making Emma's face wide. I guess I'm just looking to get and give support to others who are going through this same thing and also to get info. from others who have had success (or not) improving their baby's brachiocephaly. How much improvement have others seen? Esp. if their baby is a bit older (8 mos.) Are there other adoptive parents out there? Did you need only one band or two if your child's plagio was 'severe'?I guess to start, I will go read some previous posts and check out the photos section...Thanks, McRaeFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Hi Jenni, When we had our older daughter in a band we went to the Dean Clinic at St. 's Hospital (I think that is the name of the hospital) and we saw Rotter. We did have one visit with Barnard Feit, so we have met her also. This time we went to a new clinic (new to us) on Old Sauk Road...is that Sun Prairie? We are seeing Rotter again. We were able to get 50% coverage from our insurance, BCBS, last time and we have the exact same insurance so we assume we will get similar coverage again. Our Emma is doing so well...catching up developmentally, already giving me kisses (I love that!!), etc. The hardest thing for us, other than seeing our baby have to go through this, is the 5 hour drive each way. But we did it before and we can do it again! McRae > Hi, > I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'? > > > I guess to start, I will go read some previous posts and check out > the photos section... > > Thanks, > > McRae > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Congratulations on your new daughter! How exciting. It's great that you were able to get her started right away. 8 months is older but not too old. I expect you will see good correction. In 2004 13% of CT's patients needed 2 bands. The more severe the more likehood of a 2nd band. However, with good growth your daughter may only need one even though she is severe. We do have some other adoptive parents. Hopefully they will chime in. In fact I think we have a girl in CA recently adopted from China mom to na, DOC Grad & Kiersten, preventative repo www.thefilyaws.com mary_mcrae2003 <mmcrae@...> wrote: Hi,I am McRae from Michigan and my husband is . Our daughter Emma (8 mos. old, adopted from China just under two weeks ago, home from China one week) was diagnosed with severe brachiocephaly. We already had her casted for the DOC band in Madison, WI (this past Wednesday) and will get her band on July 11th. This is our second adoption from China. Our first daughter from China, Maya, also wore a DOC band to improve her plagiocephaly (she was diagnosed with 'moderate' plagio) and it worked great for her, even though we started her band when she was 16 mos. old. Maya's head was very assymetrical and this time we are dealing with just extreme flatness across the back, making Emma's face wide. I guess I'm just looking to get and give support to others who are going through this same thing and also to get info. from others who have had success (or not) improving their baby's brachiocephaly. How much improvement have others seen? Esp. if their baby is a bit older (8 mos.) Are there other adoptive parents out there? Did you need only one band or two if your child's plagio was 'severe'?I guess to start, I will go read some previous posts and check out the photos section...Thanks, McRaeFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Hi , The Sun Prairie Clinic is about 10 miles northeast of Madison. They have 2 locations to choose from. I'm embarrassed to admit that our drive is only 15 minutes. What provinces are your daughters from in China? My husband will be going to Suzhou, China this week for work. That is about an hour ferry ride from Shanghai. Our daughter is from Guangdong province. Keep me posted on your journey. Jenni mom to Lilly and Sam (biological) mary_mcrae2003 <mmcrae@...> wrote: Hi Jenni,When we had our older daughter in a band we went to the Dean Clinic at St. 's Hospital (I think that is the name of the hospital) and we saw Rotter. We did have one visit with Barnard Feit, so we have met her also. This time we went to a new clinic (new to us) on Old Sauk Road...is that Sun Prairie? We are seeing Rotter again. We were able to get 50% coverage from our insurance, BCBS, last time and we have the exact same insurance so we assume we will get similar coverage again. Our Emma is doing so well...catching up developmentally, already giving me kisses (I love that!!), etc. The hardest thing for us, other than seeing our baby have to go through this, is the 5 hour drive each way. But we did it before and we can do it again! McRae --- In Plagiocephaly , Neuman <neumanjennifer@y...> wrote:> Hi ,> Welcome home and congrats. We have a story very similar to yours. We adopted our daughter Lilly from China in late Sept.04. We returned to the U.S. in mid-October and had our initial consult with Cranial Tech in Sun Prairie, WI...affiliated with the Madison clinic...five days after hitting the country. We see Barnard Feit. We think of her as our angel. Our daughter was diagnosed with very severe plagio and banded by late October. We saw wonderful results, but she definitely had residual plagio. She was 10 months old at the start of treatment. We decided to go ahead with a second band which was in March 05. She exceeded their expectations for growth, but still had residual plagio. Lilly started her third band last Wednesday. She is now 18 months old. We are hoping for more, but have been warned that she will always have some residual plagio. > I'm assuming you are using the Dean Clinic in Madison. If you have to pay out of pocket (which we have on all three) they have put a new policy in place for discounting 20% if you pay right away in cash or credit card. > Our daughter had no problems with the transition to the band. At that time, she was extremely delayed, passive and hypotonic. Now she is a spunky, happy, age-appropriate toddler who loves to say no.> Best of luck. Please feel free to e-mail me. Aren't these little girls amazing in what they can handle? > > Jenni> mom to Lilly DOC band x 3> > p.s. where are your girls from in China? > > mary_mcrae2003 <mmcrae@c...> wrote:> Hi,> I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'?> > > I guess to start, I will go read some previous posts and check out > the photos section...> > Thanks,> > McRae> > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Hi , The Sun Prairie Clinic is about 10 miles northeast of Madison. They have 2 locations to choose from. I'm embarrassed to admit that our drive is only 15 minutes. What provinces are your daughters from in China? My husband will be going to Suzhou, China this week for work. That is about an hour ferry ride from Shanghai. Our daughter is from Guangdong province. Keep me posted on your journey. Jenni mom to Lilly and Sam (biological) mary_mcrae2003 <mmcrae@...> wrote: Hi Jenni,When we had our older daughter in a band we went to the Dean Clinic at St. 's Hospital (I think that is the name of the hospital) and we saw Rotter. We did have one visit with Barnard Feit, so we have met her also. This time we went to a new clinic (new to us) on Old Sauk Road...is that Sun Prairie? We are seeing Rotter again. We were able to get 50% coverage from our insurance, BCBS, last time and we have the exact same insurance so we assume we will get similar coverage again. Our Emma is doing so well...catching up developmentally, already giving me kisses (I love that!!), etc. The hardest thing for us, other than seeing our baby have to go through this, is the 5 hour drive each way. But we did it before and we can do it again! McRae --- In Plagiocephaly , Neuman <neumanjennifer@y...> wrote:> Hi ,> Welcome home and congrats. We have a story very similar to yours. We adopted our daughter Lilly from China in late Sept.04. We returned to the U.S. in mid-October and had our initial consult with Cranial Tech in Sun Prairie, WI...affiliated with the Madison clinic...five days after hitting the country. We see Barnard Feit. We think of her as our angel. Our daughter was diagnosed with very severe plagio and banded by late October. We saw wonderful results, but she definitely had residual plagio. She was 10 months old at the start of treatment. We decided to go ahead with a second band which was in March 05. She exceeded their expectations for growth, but still had residual plagio. Lilly started her third band last Wednesday. She is now 18 months old. We are hoping for more, but have been warned that she will always have some residual plagio. > I'm assuming you are using the Dean Clinic in Madison. If you have to pay out of pocket (which we have on all three) they have put a new policy in place for discounting 20% if you pay right away in cash or credit card. > Our daughter had no problems with the transition to the band. At that time, she was extremely delayed, passive and hypotonic. Now she is a spunky, happy, age-appropriate toddler who loves to say no.> Best of luck. Please feel free to e-mail me. Aren't these little girls amazing in what they can handle? > > Jenni> mom to Lilly DOC band x 3> > p.s. where are your girls from in China? > > mary_mcrae2003 <mmcrae@c...> wrote:> Hi,> I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'?> > > I guess to start, I will go read some previous posts and check out > the photos section...> > Thanks,> > McRae> > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Hi Jenni, Wow, a fifteen minute drive would feel like a dream! I feel like I have to give myself a pep talk everytime it's time for us to drive to another appt! What we did last time with Maya, was make appts. for 8-9 AM, getting up at 2AM (!) so Maya would sleep while we drove. Then after the appt. we'd have lunch, and Maya would sleep for 1-2 hours on the return trip. So we really minimized having an upset baby that way, plus, we'd get home by 8-9PM. We will try to do the same thing this time. We did this during the summer months last time since winter driving would make this almost impossible and we are happy that the timing worked out this time too. I just want to hurry up and get started! We will know tomorrow if our band will be in on this Fri., in which case if it is we will be driving down. For our first appt. they want to come early and hang around all day and then come back as late as possible in the afternoon to check the fit. So it will be a loooong day. Maybe one of these trips we could meet at the zoo (is there a zoo?) or something and let our kids play. How old is Sam? Maya is now 3.5 yr. old. Maya was adopted in Hunan Province and Emma from Jiangxi. It is cool that your husband is traveling back for work. We plan to take trips back, when the girls are older. > Hi , > The Sun Prairie Clinic is about 10 miles northeast of Madison. They have 2 locations to choose from. I'm embarrassed to admit that our drive is only 15 minutes. What provinces are your daughters from in China? My husband will be going to Suzhou, China this week for work. That is about an hour ferry ride from Shanghai. Our daughter is from Guangdong province. Keep me posted on your journey. > > Jenni > mom to Lilly and Sam (biological) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Hi Jenni, Wow, a fifteen minute drive would feel like a dream! I feel like I have to give myself a pep talk everytime it's time for us to drive to another appt! What we did last time with Maya, was make appts. for 8-9 AM, getting up at 2AM (!) so Maya would sleep while we drove. Then after the appt. we'd have lunch, and Maya would sleep for 1-2 hours on the return trip. So we really minimized having an upset baby that way, plus, we'd get home by 8-9PM. We will try to do the same thing this time. We did this during the summer months last time since winter driving would make this almost impossible and we are happy that the timing worked out this time too. I just want to hurry up and get started! We will know tomorrow if our band will be in on this Fri., in which case if it is we will be driving down. For our first appt. they want to come early and hang around all day and then come back as late as possible in the afternoon to check the fit. So it will be a loooong day. Maybe one of these trips we could meet at the zoo (is there a zoo?) or something and let our kids play. How old is Sam? Maya is now 3.5 yr. old. Maya was adopted in Hunan Province and Emma from Jiangxi. It is cool that your husband is traveling back for work. We plan to take trips back, when the girls are older. > Hi , > The Sun Prairie Clinic is about 10 miles northeast of Madison. They have 2 locations to choose from. I'm embarrassed to admit that our drive is only 15 minutes. What provinces are your daughters from in China? My husband will be going to Suzhou, China this week for work. That is about an hour ferry ride from Shanghai. Our daughter is from Guangdong province. Keep me posted on your journey. > > Jenni > mom to Lilly and Sam (biological) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2005 Report Share Posted July 10, 2005 Hi , Sorry I didn't get back to you sooner. I would have loved to touch base this past Friday, but I had to work. Also, my 2 kids are both sick, one with an ear infection, and one with suspected whooping cough. Not a fun weekend, with the husband gone. I'm usually off on Wednesday, as that is our helmet check day. Let me know if that works out for you. Lilly is 18 months old and Sam (biological) is 4 1/2 years old. He is blond haired and blue eyed, so they don't look like sibs, but they sure act like it. Hope your trip went well and hope to meet up sometime. There is a small zoo in town...Henry Vilas Zoo...you can find it on the internet. Best of luck. jenni Neuman <neumanjennifer@...> wrote: Hi , The Sun Prairie Clinic is about 10 miles northeast of Madison. They have 2 locations to choose from. I'm embarrassed to admit that our drive is only 15 minutes. What provinces are your daughters from in China? My husband will be going to Suzhou, China this week for work. That is about an hour ferry ride from Shanghai. Our daughter is from Guangdong province. Keep me posted on your journey. Jenni mom to Lilly and Sam (biological) mary_mcrae2003 <mmcrae@...> wrote: Hi Jenni,When we had our older daughter in a band we went to the Dean Clinic at St. 's Hospital (I think that is the name of the hospital) and we saw Rotter. We did have one visit with Barnard Feit, so we have met her also. This time we went to a new clinic (new to us) on Old Sauk Road...is that Sun Prairie? We are seeing Rotter again. We were able to get 50% coverage from our insurance, BCBS, last time and we have the exact same insurance so we assume we will get similar coverage again. Our Emma is doing so well...catching up developmentally, already giving me kisses (I love that!!), etc. The hardest thing for us, other than seeing our baby have to go through this, is the 5 hour drive each way. But we did it before and we can do it again! McRae --- In Plagiocephaly , Neuman <neumanjennifer@y...> wrote:> Hi ,> Welcome home and congrats. We have a story very similar to yours. We adopted our daughter Lilly from China in late Sept.04. We returned to the U.S. in mid-October and had our initial consult with Cranial Tech in Sun Prairie, WI...affiliated with the Madison clinic...five days after hitting the country. We see Barnard Feit. We think of her as our angel. Our daughter was diagnosed with very severe plagio and banded by late October. We saw wonderful results, but she definitely had residual plagio. She was 10 months old at the start of treatment. We decided to go ahead with a second band which was in March 05. She exceeded their expectations for growth, but still had residual plagio. Lilly started her third band last Wednesday. She is now 18 months old. We are hoping for more, but have been warned that she will always have some residual plagio. > I'm assuming you are using the Dean Clinic in Madison. If you have to pay out of pocket (which we have on all three) they have put a new policy in place for discounting 20% if you pay right away in cash or credit card. > Our daughter had no problems with the transition to the band. At that time, she was extremely delayed, passive and hypotonic. Now she is a spunky, happy, age-appropriate toddler who loves to say no.> Best of luck. Please feel free to e-mail me. Aren't these little girls amazing in what they can handle? > > Jenni> mom to Lilly DOC band x 3> > p.s. where are your girls from in China? > > mary_mcrae2003 <mmcrae@c...> wrote:> Hi,> I am McRae from Michigan and my husband is . Our daughter > Emma (8 mos. old, adopted from China just under two weeks ago, home > from China one week) was diagnosed with severe brachiocephaly. We > already had her casted for the DOC band in Madison, WI (this past > Wednesday) and will get her band on July 11th. This is our second > adoption from China. Our first daughter from China, Maya, also wore > a DOC band to improve her plagiocephaly (she was diagnosed > with 'moderate' plagio) and it worked great for her, even though we > started her band when she was 16 mos. old. Maya's head was very > assymetrical and this time we are dealing with just extreme flatness > across the back, making Emma's face wide. I guess I'm just looking > to get and give support to others who are going through this same > thing and also to get info. from others who have had success (or > not) improving their baby's brachiocephaly. How much improvement > have others seen? Esp. if their baby is a bit older (8 mos.) Are > there other adoptive parents out there? Did you need only one band > or two if your child's plagio was 'severe'?> > > I guess to start, I will go read some previous posts and check out > the photos section...> > Thanks,> > McRae> > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Welcome to the group My name is angie and i am 31 I was diagnosed with RA a littel over a year ago. This group is a great place for support. Again Welcome From Angie > Hi everyone, > > I'm new to this group so I thought I would say hi and tell you a > little about myself. My name is and I am 39. I live in southern > California. I have been married for 13 years and have a grown son, > who's recently married, and two daughters, ages 12 and 9. I am > currently disabled after being a paramedic for 10 years. Prior to that > I was in the Coast Guard. > > Ok now to my disease. I have Rheumatoid Arthritis and Fibromyalgia. I > was diagnosed with RA over 17 years ago but did not seek treatment > until about 9 years ago. I was just diagnosed with fibro about two > weeks ago. I was ignorant about the disease and did not know the > severity of it. I currently take Enbrel, Imuran, Neurontin, Medrol, > and Mobic. > > That's about it. Thank you for listening! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Welcome , This is a good place to be, I do not post much but I read every day, great support and information, I am 35, 2 kids, 3 including my hubby (lol) Live in Texas, recently diagnosed with aggressive RA, trying to get it under control right now. Cassy > Hi everyone, > > I'm new to this group so I thought I would say hi and tell you a > little about myself. My name is and I am 39. I live in southern > California. I have been married for 13 years and have a grown son, > who's recently married, and two daughters, ages 12 and 9. I am > currently disabled after being a paramedic for 10 years. Prior to that > I was in the Coast Guard. > > Ok now to my disease. I have Rheumatoid Arthritis and Fibromyalgia. I > was diagnosed with RA over 17 years ago but did not seek treatment > until about 9 years ago. I was just diagnosed with fibro about two > weeks ago. I was ignorant about the disease and did not know the > severity of it. I currently take Enbrel, Imuran, Neurontin, Medrol, > and Mobic. > > That's about it. Thank you for listening! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Welcome ! > Hi everyone, > > I'm new to this group so I thought I would say hi and tell you a > little about myself. My name is and I am 39. I live in southern > California. I have been married for 13 years and have a grown son, > who's recently married, and two daughters, ages 12 and 9. I am > currently disabled after being a paramedic for 10 years. Prior to that > I was in the Coast Guard. > > Ok now to my disease. I have Rheumatoid Arthritis and Fibromyalgia. I > was diagnosed with RA over 17 years ago but did not seek treatment > until about 9 years ago. I was just diagnosed with fibro about two > weeks ago. I was ignorant about the disease and did not know the > severity of it. I currently take Enbrel, Imuran, Neurontin, Medrol, > and Mobic. > > That's about it. Thank you for listening! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 Welcome to the group! Sounds like you've had two interesting careers, not to mention parenthood....which is the biggest adventure of all! I am a single mom with 4 kids, one still @ home but will be leaving for college in 2 weeks. (sniff, sniff.) Look forward to getting to know you. Jane > Hi everyone, > > I'm new to this group so I thought I would say hi and tell you a > little about myself. My name is and I am 39. I live in southern > California. I have been married for 13 years and have a grown son, > who's recently married, and two daughters, ages 12 and 9. I am > currently disabled after being a paramedic for 10 years. Prior to that > I was in the Coast Guard. > > Ok now to my disease. I have Rheumatoid Arthritis and Fibromyalgia. I > was diagnosed with RA over 17 years ago but did not seek treatment > until about 9 years ago. I was just diagnosed with fibro about two > weeks ago. I was ignorant about the disease and did not know the > severity of it. I currently take Enbrel, Imuran, Neurontin, Medrol, > and Mobic. > > That's about it. Thank you for listening! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Welcome to our group . Sorry for your reasons that you're here, but glad you found us. This is a great place to talk to others that understand how you feel. I'm on Enbrel too, and it's helped a lot. I live in Florida and have 4 children, and 4 grandchildren. Glad to meet you. a On Aug 7, 2005, at 5:07 AM, Genest wrote: > Hi everyone, > > I'm new to this group so I thought I would say hi and tell you a > little about myself. My name is and I am 39. I live in southern > California. I have been married for 13 years and have a grown son, > who's recently married, and two daughters, ages 12 and 9. I am > currently disabled after being a paramedic for 10 years. Prior to that > I was in the Coast Guard. > > Ok now to my disease. I have Rheumatoid Arthritis and Fibromyalgia. I > was diagnosed with RA over 17 years ago but did not seek treatment > until about 9 years ago. I was just diagnosed with fibro about two > weeks ago. I was ignorant about the disease and did not know the > severity of it. I currently take Enbrel, Imuran, Neurontin, Medrol, > and Mobic. > > That's about it. Thank you for listening! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hi : Welcome! The people in this group are so supportive and helpful - you will find that we all truly do understand what you are going through, having walked that same path ourselves - and the moderators keep us well informed on new medications, treatments, a lot of very good information. I have been a member now for about 3 years, and have found this group to be an invaluable help to my coping with my RA. I, too, also have Fibromyalgia, as well as Raynaud's syndrome. I was diagnosed with RA 6 years ago, and diagnosed with Fibro 1 year ago. I am currently taking Methotrexate, Mobic, Ultracet, and Enbrel for the RA, and Trazodone and Flexeril for the Fibro, along with meds for asthma and high blood pressure. Never in a hundred years would I have dreamed that I would have RA and FM, and be taking the amount of meds I am simply to be able to cope with all that they bring to my life. Turns your life upside down. I also live in Southern CA, down near the Temecula Valley. We have a small farm with horses, dogs, and various fowl, and the animals are what gets me up and out of bed each morning. Riding, when I can do it, is also great therapy for the soul. I am 51, and have two children, son 21 and daughter 18, and both they and my husband are great support for me. It was not always that way, in the beginning they had a hard time understanding why I could not do the things I used to, and why I was always so tired, but over the years it's gotten better. How are your medications doing for you? Are they helping? Sometimes it takes a while for them to kick in and become helpful, and it's hard when you are in pain to be patient for results. Where in Southern CA are you? Hope you are having a good day - Kathe in CA --- Genest <gl199213@...> wrote: > Hi everyone, > > I'm new to this group so I thought I would say hi > and tell you a > little about myself. My name is and I am 39. I > live in southern > California. I have been married for 13 years and > have a grown son, > who's recently married, and two daughters, ages 12 > and 9. I am > currently disabled after being a paramedic for 10 > years. Prior to that > I was in the Coast Guard. > > Ok now to my disease. I have Rheumatoid Arthritis > and Fibromyalgia. I > was diagnosed with RA over 17 years ago but did not > seek treatment > until about 9 years ago. I was just diagnosed with > fibro about two > weeks ago. I was ignorant about the disease and did > not know the > severity of it. I currently take Enbrel, Imuran, > Neurontin, Medrol, > and Mobic. > > That's about it. Thank you for listening! > > > Kathe in CA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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