Re: My son had his appointment today

[Guest guest]

,

Wow - very impressive - good for you. is so very lucky to have such a

proactive and involved father. I'm glad you were able to communicate your

feelings and opinions on the matter and even more thrilled that the

specialist was willing to work with you on that. Such good news.

Hopefully someone can speak specifically about the folks at Stanford. I'm

positive we have had members in this group who used that facility. When is

the casting scheduled for?

I'm so glad that the questions for the dr from the plagio webpage were

helpful. It's good to know that that information is helping people. Please

keep us posted and, once again, GREAT WORK DAD!!!!!!!!!!!!!!!

Marci (Mom to )

Oklahoma

[Guest guest]

Wow! Great job! But, now I'm nervous about what tests my son is getting done tomorrow (I was told a 'skull series'...I guess an xray or ct scans?) Do I need to be concerned about radiation? Anyone here researched this? Way to go on fighting for your little guy's treatment. What a great dad you are. .... is very blessed to have you as a father.

eklucky1 <eklucky@...> wrote: First, I would like to thank all of you who replied to my initial message. This group and the experiences that come with it are quite impressive. In the last couple of days I have scrolled the message archives for hours trying to understand plagiocephaly and develop some sort of strategic approach...and to find some comfort and relief. Thank you all!My son was seen by a neurosurgeon at Kaiser in Sacramento. Within 10 seconds, he said he could see my son had Plagiocephaly. He continued to explain to me the origin, saying it was a benign condition and other than a minor cosmetic challenge my son would enjoy a successful life. He highlighted on positional therapy as a very successful treatment and would provide some written material on several techniques. I cannot believe his response. I read the exact response in this group, word for word. I let him finish his canned assessment and he asked if I had any questions. I said, yes.I asked about helmets and bands and his thoughts. He said there have been some surprising results, but overall, these devices were high maintenance and could cause sores and most-likely, disappointing results.I told him about all the successes I have read about within this group and other means, and that I would certainly classify the results as genuine and very appealing. I continued to articulate that I have chosen the method of treatment I feel best suits my son and cranial orthosis is it. He looked at my son's head one more time and said he would write the referral to Stanford University's Orthosis department. Kaiser doe's not offer the service directly and contracts this type of treatment. YAAAAAAAAAAAAAHHHHHHHHHHOOOOOOOOOOOOOOOOOOO! I pulled out the list of questions I downloaded from WWW.plagiocephaly.org, regarding "questions to ask your Doctor". He answered most of them but seemed bewildered at my preparation.I asked him if he conducts CT scans to eliminate the possibility of craniosynostisis. He was very adimate against exposing my son to the radiation. He was very confident that his 22 years as a pediatric neurosurgeon had exposed him to plagiocephaly and he can spot the characteristics instantly. I accepted his answer and decided to comply with his non-recommendation.As for his severity, the doctor said it was mild-moderate, and that the people at Stanford would give me exact symmetrical misalignments. Great!It was very important for me to educate myself ASAP and arm myself against replies from the medical establishment that align themselves with insurance costs. If I would have went to the neurosurgeon and listened to his initial response I would be treating a moderate case of plagiocephaly with repositioning techniques only. Thanks again from all of you for your suggestions / support and most importantly, your personal experiences. I will continue to update this group and reply to all who answered my posting. I will post my pictures of my son's head soon.Thanks,'s Dad, For more plagio info

[Guest guest]

Way to go Big Daddy! You are doing the right thing, I wish I had been as

informed when our neuro. told me that helmets aren't proven to work and

insurance companies don't pay for them! We were naive enough to trust

this professional and it stalled our progress. Now Amy will have her

band at 13 months and I am convinced we will see some good correction AND

we found out our insurance company will pay 80%. We went to see our

narcissist, I mean neurologist at 4 and 5 months of age, all that

correction time lost. Keep up the good work!

Ellen

Mom to Amy

New Jersey

On Tue, 21 May 2002 02:16:56 -0000 " eklucky1 " <eklucky@...> writes:

> First, I would like to thank all of you who replied to my initial

> message. This group and the experiences that come with it are quite

> impressive. In the last couple of days I have scrolled the message

> archives for hours trying to understand plagiocephaly and develop

> some sort of strategic approach...and to find some comfort and

> relief. Thank you all!

>

> My son was seen by a neurosurgeon at Kaiser in Sacramento. Within 10

>

> seconds, he said he could see my son had Plagiocephaly. He continued

>

> to explain to me the origin, saying it was a benign condition and

> other than a minor cosmetic challenge my son would enjoy a

> successful

> life. He highlighted on positional therapy as a very successful

> treatment and would provide some written material on several

> techniques. I cannot believe his response. I read the exact response

>

> in this group, word for word.

>

> I let him finish his canned assessment and he asked if I had any

> questions. I said, yes.

>

> I asked about helmets and bands and his thoughts. He said there have

>

> been some surprising results, but overall, these devices were high

> maintenance and could cause sores and most-likely, disappointing

> results.

>

> I told him about all the successes I have read about within this

> group and other means, and that I would certainly classify the

> results as genuine and very appealing. I continued to articulate

> that

> I have chosen the method of treatment I feel best suits my son and

> cranial orthosis is it. He looked at my son's head one more time and

>

> said he would write the referral to Stanford University's Orthosis

> department. Kaiser doe's not offer the service directly and

> contracts

> this type of treatment.

>

> YAAAAAAAAAAAAAHHHHHHHHHHOOOOOOOOOOOOOOOOOOO!

>

> I pulled out the list of questions I downloaded from

> WWW.plagiocephaly.org, regarding " questions to ask your Doctor " . He

> answered most of them but seemed bewildered at my preparation.

>

> I asked him if he conducts CT scans to eliminate the possibility of

> craniosynostisis. He was very adimate against exposing my son to the

>

> radiation. He was very confident that his 22 years as a pediatric

> neurosurgeon had exposed him to plagiocephaly and he can spot the

> characteristics instantly. I accepted his answer and decided to

> comply with his non-recommendation.

>

> As for his severity, the doctor said it was mild-moderate, and that

> the people at Stanford would give me exact symmetrical

> misalignments.

> Great!

>

> It was very important for me to educate myself ASAP and arm myself

> against replies from the medical establishment that align themselves

>

> with insurance costs. If I would have went to the neurosurgeon and

> listened to his initial response I would be treating a moderate case

>

> of plagiocephaly with repositioning techniques only.

>

> Thanks again from all of you for your suggestions / support and most

>

> importantly, your personal experiences. I will continue to update

> this group and reply to all who answered my posting. I will post my

> pictures of my son's head soon.

>

> Thanks,

> 's Dad,

>

>

>

>

[Guest guest]

Great Job!!! I am very proud of you....Trisha

On Tue, 21 May 2002 02:16:56 -0000 " eklucky1 " <eklucky@...> writes:

> First, I would like to thank all of you who replied to my initial

> message. This group and the experiences that come with it are quite

> impressive. In the last couple of days I have scrolled the message

> archives for hours trying to understand plagiocephaly and develop

> some sort of strategic approach...and to find some comfort and

> relief. Thank you all!

>

> My son was seen by a neurosurgeon at Kaiser in Sacramento. Within 10

>

> seconds, he said he could see my son had Plagiocephaly. He continued

>

> to explain to me the origin, saying it was a benign condition and

> other than a minor cosmetic challenge my son would enjoy a

> successful

> life. He highlighted on positional therapy as a very successful

> treatment and would provide some written material on several

> techniques. I cannot believe his response. I read the exact response

>

> in this group, word for word.

>

> I let him finish his canned assessment and he asked if I had any

> questions. I said, yes.

>

> I asked about helmets and bands and his thoughts. He said there have

>

> been some surprising results, but overall, these devices were high

> maintenance and could cause sores and most-likely, disappointing

> results.

>

> I told him about all the successes I have read about within this

> group and other means, and that I would certainly classify the

> results as genuine and very appealing. I continued to articulate

> that

> I have chosen the method of treatment I feel best suits my son and

> cranial orthosis is it. He looked at my son's head one more time and

>

> said he would write the referral to Stanford University's Orthosis

> department. Kaiser doe's not offer the service directly and

> contracts

> this type of treatment.

>

> YAAAAAAAAAAAAAHHHHHHHHHHOOOOOOOOOOOOOOOOOOO!

>

> I pulled out the list of questions I downloaded from

> WWW.plagiocephaly.org, regarding " questions to ask your Doctor " . He

> answered most of them but seemed bewildered at my preparation.

>

> I asked him if he conducts CT scans to eliminate the possibility of

> craniosynostisis. He was very adimate against exposing my son to the

>

> radiation. He was very confident that his 22 years as a pediatric

> neurosurgeon had exposed him to plagiocephaly and he can spot the

> characteristics instantly. I accepted his answer and decided to

> comply with his non-recommendation.

>

> As for his severity, the doctor said it was mild-moderate, and that

> the people at Stanford would give me exact symmetrical

> misalignments.

> Great!

>

> It was very important for me to educate myself ASAP and arm myself

> against replies from the medical establishment that align themselves

>

> with insurance costs. If I would have went to the neurosurgeon and

> listened to his initial response I would be treating a moderate case

>

> of plagiocephaly with repositioning techniques only.

>

> Thanks again from all of you for your suggestions / support and most

>

> importantly, your personal experiences. I will continue to update

> this group and reply to all who answered my posting. I will post my

> pictures of my son's head soon.

>

> Thanks,

> 's Dad,

>

>

>

>