Re: Angry B. update---long

[Guest guest]

Reading your message just broke my heart. It is a shame after all of your struggles to be so disappointed with the outcome. Please know we are here thinking of you. ((Hugs))

Jen- TXTrentyn- 20 mo. DocBand 06/12/03 & 09/17/03DocGrad 01/16/04

Angry B. update---long

had an appt at CT yesterday in Miami. He has been in a band for about 5 mos. He is still significantly wide and flat despite his improvements in treatment. I had a LONG talk with the OT yesterday---who I really respect. It seems evident to me that she knows her stuff. To make a long story short, is so wide, that it is hard to make significant rounding progress in the back of his head. There is just so very much that needs to "fill in" due to the wideness. At 's present age, this is not likely. He may get a couple more mm of length before we are done in about a month of so. As many of you can imagine, I am not happy with our situation. As has gotten older, his flatness has become more prominent. His asymmetries have lessened some---and he appears much less lopsided. However, he is still very brachy and I am trying to accept that this is probably the best things are going to get. He is not a candidate for a third band.

I blame our progress and 's head shape on the lack of support I received from the specialists in Tampa. I went to TWO craniofacial specialists who both ended up being against banding. I began this process when was about 8 weeks of age. Before three months, he had already seen a neurologist, had a skull x-ray, and had been sedated for an MRI of the brain and cervical spine. These tests ruled out cranio and any subsequent neurological conditions. We were ready to have him treated for plagiocephaly at four months of age. Due to the specialists in Tampa who described the DOC people as "aggressive," had very little experience with banding---told me that the last orthotist that did bands in Tampa had died, that may as well wear a bike helmet, that bands were made to fit tight on the head with no gaps, that could be facing learning disabilities by kindergarten and ON and ON.------We lost our momentum, spun around second guessing ourselves, and looked for other places to turn. I finally just asked my ped to write the script---his first for a band. While this all took place, continued to get flatter and flatter, wider and wider. He was not born with an abnormally wide head. It developed as the plagio became more severe and his head continued to grow that way.

As nearly everyone knows, we had STARband problems that were most likely due to an unskilled orthotist in Tampa. This only caused more delay. was DOCBanded at 8 mos of age. It kills me to think that if we had started this process at 4 mos of age, he might be significantly better. What just makes this worse, is that we were ready. We did know our stuff. Our medical specialists did not. Our first orthotist claimed to, but didn't.

I feel badly for a number of reasons. I feel bad because will most likely always be flat and wide. For purely cosmetic reasons, this upsets me. Secondly, as the disorder of plagiocephaly gets more media attention, studies are being conducted regarding future difficulties that these children may experience. Some research is already indicating difficulties with attention span, learning, visual motor difficulties, language processing, etc... It just makes me so angry and depressed to think that it all could have been prevented. Now that I am beginning to accept that 's head is probably not going to round out, I have begun to look at his head and worry. I am worried that his brain is being compressed in the back and that this may have negative effects over time. I want some guidance for this but recognize that I probably won't be getting if from my present medical community.

Lastly, in my other life, I am an experienced social worker. I have a reputation in my community for solving difficult problems and being persistent. I know how to research, I know how to advocate and I know how to speak to medical professionals. Despite all this, it saddens me to still find that I couldn't get the best for my own son in my own community. I just don't know where to go with these feelings at the present time besides this group.

I am sorry this post is so long. It just seems that all the pieces of our journey play into how I am affected by 's situation.

B.Mom to B.STARBand drop out 8/03DOCBand #1 9/4/03DOCBand #2 12/18/03MiamiFor more plagio info

[Guest guest]

....I'm so sorry you've had so many difficulties in this whole process....It's such a shame the medical professionals are not more knowlegable on this subject.

and " B." <wbilling@...> wrote:

had an appt at CT yesterday in Miami. He has been in a band for about 5 mos. He is still significantly wide and flat despite his improvements in treatment. I had a LONG talk with the OT yesterday---who I really respect. It seems evident to me that she knows her stuff. To make a long story short, is so wide, that it is hard to make significant rounding progress in the back of his head. There is just so very much that needs to "fill in" due to the wideness. At 's present age, this is not likely. He may get a couple more mm of length before we are done in about a month of so. As many of you can imagine, I am not happy with our situation. As has gotten older, his flatness has become more prominent. His asymmetries have lessened some---and he appears much less lopsided. However, he is still very brachy and I am trying to accept that

this is probably the best things are going to get. He is not a candidate for a third band.

I blame our progress and 's head shape on the lack of support I received from the specialists in Tampa. I went to TWO craniofacial specialists who both ended up being against banding. I began this process when was about 8 weeks of age. Before three months, he had already seen a neurologist, had a skull x-ray, and had been sedated for an MRI of the brain and cervical spine. These tests ruled out cranio and any subsequent neurological conditions. We were ready to have him treated for plagiocephaly at four months of age. Due to the specialists in Tampa who described the DOC people as "aggressive," had very little experience with banding---told me that the last orthotist that did bands in Tampa had died, that may as well wear a bike helmet, that bands were made to fit tight on the head with no gaps, that could be facing learning disabilities by

kindergarten and ON and ON.------We lost our momentum, spun around second guessing ourselves, and looked for other places to turn. I finally just asked my ped to write the script---his first for a band. While this all took place, continued to get flatter and flatter, wider and wider. He was not born with an abnormally wide head. It developed as the plagio became more severe and his head continued to grow that way.

As nearly everyone knows, we had STARband problems that were most likely due to an unskilled orthotist in Tampa. This only caused more delay. was DOCBanded at 8 mos of age. It kills me to think that if we had started this process at 4 mos of age, he might be significantly better. What just makes this worse, is that we were ready. We did know our stuff. Our medical specialists did not. Our first orthotist claimed to, but didn't.

I feel badly for a number of reasons. I feel bad because will most likely always be flat and wide. For purely cosmetic reasons, this upsets me. Secondly, as the disorder of plagiocephaly gets more media attention, studies are being conducted regarding future difficulties that these children may experience. Some research is already indicating difficulties with attention span, learning, visual motor difficulties, language processing, etc... It just makes me so angry and depressed to think that it all could have been prevented. Now that I am beginning to accept that 's head is probably not going to round out, I have begun to look at his head and worry. I am worried that his brain is being compressed in the back and that this may have negative effects over time. I want some guidance for this but recognize that I probably won't

be getting if from my present medical community.

Lastly, in my other life, I am an experienced social worker. I have a reputation in my community for solving difficult problems and being persistent. I know how to research, I know how to advocate and I know how to speak to medical professionals. Despite all this, it saddens me to still find that I couldn't get the best for my own son in my own community. I just don't know where to go with these feelings at the present time besides this group.

I am sorry this post is so long. It just seems that all the pieces of our journey play into how I am affected by 's situation.

B.Mom to B.STARBand drop out 8/03DOCBand #1 9/4/03DOCBand #2 12/18/03MiamiFor more plagio info

[Guest guest]

*sigh* :

I am so sorry to hear all of this.

You have gone above & beyond your call of duty in desperately trying

to get the treatment & attention he has very much deserved from

the get go. So please, do not beat yourself up for any of this. You

followed Drs, orthotists and others advice. What else could you have

done??? Really, my goodness, you guys have been thru hell & back from

day one of 's plagio journey. I'm angry for you, I really am.

You've been flying back & forth to Miami for several mos now to get

him treatment. What else could you have done?? NOTHING!!! So

please, please, stop feeling so guilty (I know how you feel though).

Big big big big hugs from Abby & I.

Best of luck with the tort exercises. I just read how your other son

is so bothered when he sees that Maybe your husband could take

Ethan on a walk or to McD's while you are stretching . It would

help you ALL I'm sure.

Keep us posted.

Debbie Abby's mom

MI

> " B. " <wbilling@t...> wrote:

> had an appt at CT yesterday in Miami. He has been in a band

for about 5 mos. He is still significantly wide and flat despite his

improvements in treatment. I had a LONG talk with the OT yesterday---

who I really respect. It seems evident to me that she knows her

stuff. To make a long story short, is so wide, that it is hard

to make significant rounding progress in the back of his head. There

is just so very much that needs to " fill in " due to the wideness. At

's present age, this is not likely. He may get a couple more mm

of length before we are done in about a month of so. As many of you

can imagine, I am not happy with our situation. As has gotten

older, his flatness has become more prominent. His asymmetries have

lessened some---and he appears much less lopsided. However, he is

still very brachy and I am trying to accept that this is probably the

best things are going to get. He is not a candidate for a third

band.

>

> I blame our progress and 's head shape on the lack of support I

received from the specialists in Tampa. I went to TWO craniofacial

specialists who both ended up being against banding. I began this

process when was about 8 weeks of age. Before three months, he

had already seen a neurologist, had a skull x-ray, and had been

sedated for an MRI of the brain and cervical spine. These tests

ruled out cranio and any subsequent neurological conditions. We

were ready to have him treated for plagiocephaly at four months of

age. Due to the specialists in Tampa who described the DOC people

as " aggressive, " had very little experience with banding---told me

that the last orthotist that did bands in Tampa had died, that

may as well wear a bike helmet, that bands were made to fit tight on

the head with no gaps, that could be facing learning

disabilities by kindergarten and ON and ON.------We lost our

momentum, spun around second guessing ourselves, and looked for other

> places to turn. I finally just asked my ped to write the script---

his first for a band. While this all took place, continued to

get flatter and flatter, wider and wider. He was not born with an

abnormally wide head. It developed as the plagio became more severe

and his head continued to grow that way.

>

> As nearly everyone knows, we had STARband problems that were most

likely due to an unskilled orthotist in Tampa. This only caused more

delay. was DOCBanded at 8 mos of age. It kills me to think

that if we had started this process at 4 mos of age, he might be

significantly better. What just makes this worse, is that we were

ready. We did know our stuff. Our medical specialists did not. Our

first orthotist claimed to, but didn't.

>

> I feel badly for a number of reasons. I feel bad because will

most likely always be flat and wide. For purely cosmetic reasons,

this upsets me. Secondly, as the disorder of plagiocephaly gets more

media attention, studies are being conducted regarding future

difficulties that these children may experience. Some research is

already indicating difficulties with attention span, learning, visual

motor difficulties, language processing, etc... It just makes me so

angry and depressed to think that it all could have been prevented.

Now that I am beginning to accept that 's head is probably not

going to round out, I have begun to look at his head and worry. I am

worried that his brain is being compressed in the back and that this

may have negative effects over time. I want some guidance for this

but recognize that I probably won't be getting if from my present

medical community.

>

> Lastly, in my other life, I am an experienced social worker. I

have a reputation in my community for solving difficult problems and

being persistent. I know how to research, I know how to advocate and

I know how to speak to medical professionals. Despite all this, it

saddens me to still find that I couldn't get the best for my own son

in my own community. I just don't know where to go with these

feelings at the present time besides this group.

>

> I am sorry this post is so long. It just seems that all the pieces

of our journey play into how I am affected by 's situation.

>

> B.

> Mom to B.

> STARBand drop out 8/03

> DOCBand #1 9/4/03

> DOCBand #2 12/18/03

> Miami

>

>

> For more plagio info

[Guest guest]

I just wanted to say i am sorry that you and have been through so much. I wanted to add that you are a great mom. Please keep us posted.

Jenna sends hugs to ,

Angie and Jenna

Angry B. update---long

had an appt at CT yesterday in Miami. He has been in a band for about 5 mos. He is still significantly wide and flat despite his improvements in treatment. I had a LONG talk with the OT yesterday---who I really respect. It seems evident to me that she knows her stuff. To make a long story short, is so wide, that it is hard to make significant rounding progress in the back of his head. There is just so very much that needs to "fill in" due to the wideness. At 's present age, this is not likely. He may get a couple more mm of length before we are done in about a month of so. As many of you can imagine, I am not happy with our situation. As has gotten older, his flatness has become more prominent. His asymmetries have lessened some---and he appears much less lopsided. However, he is still very brachy and I am trying to accept that this is probably the best things are going to get. He is not a candidate for a third band.

I blame our progress and 's head shape on the lack of support I received from the specialists in Tampa. I went to TWO craniofacial specialists who both ended up being against banding. I began this process when was about 8 weeks of age. Before three months, he had already seen a neurologist, had a skull x-ray, and had been sedated for an MRI of the brain and cervical spine. These tests ruled out cranio and any subsequent neurological conditions. We were ready to have him treated for plagiocephaly at four months of age. Due to the specialists in Tampa who described the DOC people as "aggressive," had very little experience with banding---told me that the last orthotist that did bands in Tampa had died, that may as well wear a bike helmet, that bands were made to fit tight on the head with no gaps, that could be facing learning disabilities by kindergarten and ON and ON.------We lost our momentum, spun around second guessing ourselves, and looked for other places to turn. I finally just asked my ped to write the script---his first for a band. While this all took place, continued to get flatter and flatter, wider and wider. He was not born with an abnormally wide head. It developed as the plagio became more severe and his head continued to grow that way.

As nearly everyone knows, we had STARband problems that were most likely due to an unskilled orthotist in Tampa. This only caused more delay. was DOCBanded at 8 mos of age. It kills me to think that if we had started this process at 4 mos of age, he might be significantly better. What just makes this worse, is that we were ready. We did know our stuff. Our medical specialists did not. Our first orthotist claimed to, but didn't.

I feel badly for a number of reasons. I feel bad because will most likely always be flat and wide. For purely cosmetic reasons, this upsets me. Secondly, as the disorder of plagiocephaly gets more media attention, studies are being conducted regarding future difficulties that these children may experience. Some research is already indicating difficulties with attention span, learning, visual motor difficulties, language processing, etc... It just makes me so angry and depressed to think that it all could have been prevented. Now that I am beginning to accept that 's head is probably not going to round out, I have begun to look at his head and worry. I am worried that his brain is being compressed in the back and that this may have negative effects over time. I want some guidance for this but recognize that I probably won't be getting if from my present medical community.

Lastly, in my other life, I am an experienced social worker. I have a reputation in my community for solving difficult problems and being persistent. I know how to research, I know how to advocate and I know how to speak to medical professionals. Despite all this, it saddens me to still find that I couldn't get the best for my own son in my own community. I just don't know where to go with these feelings at the present time besides this group.

I am sorry this post is so long. It just seems that all the pieces of our journey play into how I am affected by 's situation.

B.Mom to B.STARBand drop out 8/03DOCBand #1 9/4/03DOCBand #2 12/18/03MiamiFor more plagio info