Alabama Experiences...Post Here!

[Guest guest]

Hi! My name is Arden. I'm new here. My son, , is 6.5 mo. old. He has

had a misshapen head since birth, first a large hematoma from the vaccuum, then

the back flattened and has gotten progressively worse over time. He is textbook

brachycephalic in my opinion. His head looks like diagrams in the medical

journal articles I've read for brachycephaly. He has no asymmetry that I can

tell. Our ped, who was mine as a child & I love as a person, has said it's

nothing to worry about since day 1, but I am growing increasingly anxious with

the more research I do on this.

We have an appt at Children's in Birmingham on May 1 ( will be 7 months)

with Dr. Grant. I am currently obscessing to learn everything I can. Has

anyone had expirence with Dr. Grant? He's the head of craniofacial pediatric

plastic surgery at UAB. I am mainly interested in whether he is aggressive or

passive in his treatment style. I have been tryong to get in sooner b/c of the

treatment guidelines I have read (6 months) and their nurse told me that we

should be happy with the May 1 appointment b/c he would be fine if he wasn't

seen until July! He'd be 10 months old!!! I'm trying to remain trusting and

level-headed, but this goes against every medical research report I have read.

Also, we were referred for x-rays, I think, to rule out craniosynostosis.

However, the Radiologist noted only that frontal symmetry was present and the

lamboid, saggital and frontal sutures are patent. From my research, the coronal

sutures are the ones which are at issue in a brachycephalic-shaped cranio

situation. Those were not even mentioned in the report. And, the Radiologist

found " no asymmetry or plagiocephaly " . I've seen plagio referred to only as

asymmetrical twisting (for lack of a better word, sorry) of the head. To me

brachy is a totally different, but an equally (or at least similarly), serious

condition. I'm afraid the brachy type of plagio was not even considered by the

Radiologist and it seems like the AAP only really emphasizes tradional plagio

and not brachy. I'm afraid they're only looking for plagio assymetry and don't

appreciate the brachy shape as a problem. This is the only information that Dr.

Grant's office has so far. I don't think they even have the x-rays, just the

Radiologist's report...no wonder they think he doesn't have to been seen until

July...

Sorry this is so long. I guess I'm hoping for local experiences as well and any

insight from others regarding this broader situation with respect to brachy vs.

plagio biases.

Best to everyone here and God bless you. I'm so thankful I found you!

Arden

Mom to , 6.5 months

[Guest guest]

When I was in Mississippi the PT and OT had good things to say about Children's

in Birmingham. I would find out if the Dr. Grant will accept x-rays because our

cranio-facial Dr. wanted a CT scan. If he wants a CT scan, it needs to be done

before you see him, if possible, because he will want the scan before he makes

any diagnosis and you will have to go back after the scan. (We learned the hard

way.) Also, make sure you are trying all the repositioning possible, then tell

them what you have done, because we also found out that was really, really

important to doctors.

Annie

>

> Hi! My name is Arden. I'm new here. My son, , is 6.5 mo. old. He has

had a misshapen head since birth, first a large hematoma from the vaccuum, then

the back flattened and has gotten progressively worse over time. He is textbook

brachycephalic in my opinion. His head looks like diagrams in the medical

journal articles I've read for brachycephaly. He has no asymmetry that I can

tell. Our ped, who was mine as a child & I love as a person, has said it's

nothing to worry about since day 1, but I am growing increasingly anxious with

the more research I do on this.

>

> We have an appt at Children's in Birmingham on May 1 ( will be 7 months)

with Dr. Grant. I am currently obscessing to learn everything I can. Has

anyone had expirence with Dr. Grant? He's the head of craniofacial pediatric

plastic surgery at UAB. I am mainly interested in whether he is aggressive or

passive in his treatment style. I have been tryong to get in sooner b/c of the

treatment guidelines I have read (6 months) and their nurse told me that we

should be happy with the May 1 appointment b/c he would be fine if he wasn't

seen until July! He'd be 10 months old!!! I'm trying to remain trusting and

level-headed, but this goes against every medical research report I have read.

>

> Also, we were referred for x-rays, I think, to rule out craniosynostosis.

However, the Radiologist noted only that frontal symmetry was present and the

lamboid, saggital and frontal sutures are patent. From my research, the coronal

sutures are the ones which are at issue in a brachycephalic-shaped cranio

situation. Those were not even mentioned in the report. And, the Radiologist

found " no asymmetry or plagiocephaly " . I've seen plagio referred to only as

asymmetrical twisting (for lack of a better word, sorry) of the head. To me

brachy is a totally different, but an equally (or at least similarly), serious

condition. I'm afraid the brachy type of plagio was not even considered by the

Radiologist and it seems like the AAP only really emphasizes tradional plagio

and not brachy. I'm afraid they're only looking for plagio assymetry and don't

appreciate the brachy shape as a problem. This is the only information that Dr.

Grant's office has so far. I don't think they even have the x-rays, just the

Radiologist's report...no wonder they think he doesn't have to been seen until

July...

>

> Sorry this is so long. I guess I'm hoping for local experiences as well and

any insight from others regarding this broader situation with respect to brachy

vs. plagio biases.

>

> Best to everyone here and God bless you. I'm so thankful I found you!

> Arden

>

> Mom to , 6.5 months

>

[Guest guest]

My daughter also has Brachy. She didn't get her helmet until she was nearly 15.. months old. Much of what I've read would say that it doesn't make sense to put a child this old in a helmet, but you'll learn from reading this list that there are several babies banded after 12 months that have had good correction.

's head was at 95 percent to begin with and we were down to 92.4 at her last scan a month ago. Her growth has slowed way down so we probably won't get in the normal range, but we had good improvement. I believe that if I had gotten her in the helmet at 12 or even 13 months, we probably would have.

I guess I'm trying to calm you down about your baby's age. With the age range you're talking about, you will get full correction, but it will just take a little longer. The younger babies are done in a couple of months. The literature about need to have correction before a year is wrong - as evidenced by several on this board. Your baby is in a good age range to be banded well before a year. The only difference may be that an 7 or 8-month old will need to wear the band longer than a 4 or 5 month old.

Make sure that everything is set so that you can go directly from your specialist appointment to making an appointment for the creation of the helmet. Then, May 1st should not be a problem in this case. The appointment in July would put you closer to a year than you would want, but you'd probably still get close to full correction even at that 10-month age. Instead of putting your energies into moving up the appointment (since this probably won't happen given how specialists are), put them into finding out whether you need to go for the CT scan and what else you can do to prepare for the appointment. That would be my advice. Good luck.

, mom to , 19.5 months

20 weeks in STARband plus CST

land

Re: Alabama Experiences...Post Here!

When I was in Mississippi the PT and OT had good things to say about Children's in Birmingham. I would find out if the Dr. Grant will accept x-rays because our cranio-facial Dr. wanted a CT scan. If he wants a CT scan, it needs to be done before you see him, if possible, because he will want the scan before he makes any diagnosis and you will have to go back after the scan. (We learned the hard way.) Also, make sure you are trying all the repositioning possible, then tell them what you have done, because we also found out that was really, really important to doctors.Annie>> Hi! My name is Arden. I'm new here. My son, , is 6.5 mo. old. He has had a misshapen head since birth, first a large hematoma from the vaccuum, then the back flattened and has gotten progressively worse over time. He is textbook brachycephalic in my opinion. His head looks like diagrams in the medical journal articles I've read for brachycephaly. He has no asymmetry that I can tell. Our ped, who was mine as a child & I love as a person, has said it's nothing to worry about since day 1, but I am growing increasingly anxious with the more research I do on this.> > We have an appt at Children's in Birmingham on May 1 ( will be 7 months) with Dr. Grant. I am currently obscessing to learn everything I can. Has anyone had expirence with Dr. Grant? He's the head of craniofacial pediatric plastic surgery at UAB. I am mainly interested in whether he is aggressive or passive in his treatment style. I have been tryong to get in sooner b/c of the treatment guidelines I have read (6 months) and their nurse told me that we should be happy with the May 1 appointment b/c he would be fine if he wasn't seen until July! He'd be 10 months old!!! I'm trying to remain trusting and level-headed, but this goes against every medical research report I have read.> > Also, we were referred for x-rays, I think, to rule out craniosynostosis. However, the Radiologist noted only that frontal symmetry was present and the lamboid, saggital and frontal sutures are patent. From my research, the coronal sutures are the ones which are at issue in a brachycephalic-shaped cranio situation. Those were not even mentioned in the report. And, the Radiologist found "no asymmetry or plagiocephaly". I've seen plagio referred to only as asymmetrical twisting (for lack of a better word, sorry) of the head. To me brachy is a totally different, but an equally (or at least similarly), serious condition. I'm afraid the brachy type of plagio was not even considered by the Radiologist and it seems like the AAP only really emphasizes tradional plagio and not brachy. I'm afraid they're only looking for plagio assymetry and don't appreciate the brachy shape as a problem. This is the only information that Dr. Grant's office has so far. I don't think they even have the x-rays, just the Radiologist's report...no wonder they think he doesn't have to been seen until July...> > Sorry this is so long. I guess I'm hoping for local experiences as well and any insight from others regarding this broader situation with respect to brachy vs. plagio biases.> > Best to everyone here and God bless you. I'm so thankful I found you!> Arden> > Mom to , 6.5 months>

[Guest guest]

My thought process with regards to the x-ray and the reason they are only

focused on possible plagio and not brachy, is because cranio typically does not

effect the head in a symmetrical manner, at least not that I've ever heard of (I

guess it's possible, but for the most part, it's always asymmetrical). So if the

technician was told she was looking for possible cranio, then she would only be

concerned with those sutures that would be affected by it? That would be my

guess.

I wouldn't be overly concerned with the May 1st appointment, your baby is still

plenty young enough for treatment (my son began treatment at 17 months and we

got great correction), and at this point, it's only about 3 weeks away. I would

worry if at that point, they said go for a CT or something, and then it's drawn

out longer because of testing and then waiting to get back in to see the

specialist. But hopefully he'll have what he needs from the x-ray and seeing

your child in person to move forward with treatment (if that's how you want to

go). I would suggest putting a list of questions together to take with you when

you go so you're sure to have all the answers you're looking for. In the stress

and emotion of the moment, you may forget to ask something important to you.

Good luck!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

>

> Hi! My name is Arden. I'm new here. My son, , is 6.5 mo. old. He has

had a misshapen head since birth, first a large hematoma from the vaccuum, then

the back flattened and has gotten progressively worse over time. He is textbook

brachycephalic in my opinion. His head looks like diagrams in the medical

journal articles I've read for brachycephaly. He has no asymmetry that I can

tell. Our ped, who was mine as a child & I love as a person, has said it's

nothing to worry about since day 1, but I am growing increasingly anxious with

the more research I do on this.

>

> We have an appt at Children's in Birmingham on May 1 ( will be 7 months)

with Dr. Grant. I am currently obscessing to learn everything I can. Has

anyone had expirence with Dr. Grant? He's the head of craniofacial pediatric

plastic surgery at UAB. I am mainly interested in whether he is aggressive or

passive in his treatment style. I have been tryong to get in sooner b/c of the

treatment guidelines I have read (6 months) and their nurse told me that we

should be happy with the May 1 appointment b/c he would be fine if he wasn't

seen until July! He'd be 10 months old!!! I'm trying to remain trusting and

level-headed, but this goes against every medical research report I have read.

>

> Also, we were referred for x-rays, I think, to rule out craniosynostosis.

However, the Radiologist noted only that frontal symmetry was present and the

lamboid, saggital and frontal sutures are patent. From my research, the coronal

sutures are the ones which are at issue in a brachycephalic-shaped cranio

situation. Those were not even mentioned in the report. And, the Radiologist

found " no asymmetry or plagiocephaly " . I've seen plagio referred to only as

asymmetrical twisting (for lack of a better word, sorry) of the head. To me

brachy is a totally different, but an equally (or at least similarly), serious

condition. I'm afraid the brachy type of plagio was not even considered by the

Radiologist and it seems like the AAP only really emphasizes tradional plagio

and not brachy. I'm afraid they're only looking for plagio assymetry and don't

appreciate the brachy shape as a problem. This is the only information that Dr.

Grant's office has so far. I don't think they even have the x-rays, just the

Radiologist's report...no wonder they think he doesn't have to been seen until

July...

>

> Sorry this is so long. I guess I'm hoping for local experiences as well and

any insight from others regarding this broader situation with respect to brachy

vs. plagio biases.

>

> Best to everyone here and God bless you. I'm so thankful I found you!

> Arden

>

> Mom to , 6.5 months

>