New here and have lots of questions

March 5, 2009

Hello,

My name is . My son is 13 months old. I guess I will start off with our

history.

When he was about four months old he developed a flat spot and his head measured

on the large side. We figured it was due to his position he would lay in. At 6

months we did xrays and figured out his sutures were fine but they saw something

else. So we did a CT. They though he might have agenisis of the corpus

collusm. We met with a neurologist. She measured mine and my husbands head and

we both have large heads. Large head also run in my family. The CT did show

some fluid but she said that was common in babies with large heads. The left

side of his corpus collusum was small but she thought that was due to the flat

spot on the head. So we decided to wait it out and see how his head rounded out

after he was up and mobile. Now he is 13 months. He started crawling at 11

months, has not started walking. At his 9 month appt his head circumfrise was

43 cm. At his 12 month it was 49.7. So we went back to the neurologist today.

She said she wants to do an mri just to make sure there is no fluid aroudnt he

brain. (macrocephaly) but she also said his head should have rounded otu more

then what it has. So now she is sending us to a neuro seurgon to see if surgery

would be an option to help his skull or if we need to go the helmet route. The

only reason we are doing a seurgon first is because he is local and we would

have to travel to a different state to see a crianology team. So I guess I am

confused, shocked, sad, etc about all this. It is hard to find info on the web

if having a plagiocephaly has long term effects, if the helmet is the best way

to go, what does the surgery intail, etc. I was just wondering if anyone here

has done surgery or how their kids do with the helmet. Has anyone opted otu of

not doign anything at all and running the risk of their kids head never

developing normally?

I hope I am making since right now, it is stilla ll so fresh. I was really

thinking we woudl go into the doc today and she would tell us his head is

looking better and it will get better over time and that he will just have a

large head like us. but now it seems that we are dealing with two different

problems.

Thank you for any answers and support.

March 5, 2009

I'm sorry your are facing so many problems. Someone correct me if am wrong but asimming that develoment and progress are in the normal state plagio is simply a cosmetic thing snd won't affect anything behaviorally, just esthetics. It sounds like after all your tests the consensus is that developmentally all is ok (asiming there is macrocephaly) so I am puzzelld on why you would need surgery when a band would work for the shape aspect. From: "mattpieczynski" Date: Thu, 05 Mar 2009 19:37:27 -0000<Plagiocephaly >Subject: New here and have lots of questions Hello, My name is . My son is 13 months old. I guess I will start off with our history. When he was about four months old he developed a flat spot and his head measured on the large side. We figured it was due to his position he would lay in. At 6 months we did xrays and figured out his sutures were fine but they saw something else. So we did a CT. They though he might have agenisis of the corpus collusm. We met with a neurologist. She measured mine and my husbands head and we both have large heads. Large head also run in my family. The CT did show some fluid but she said that was common in babies with large heads. The left side of his corpus collusum was small but she thought that was due to the flat spot on the head. So we decided to wait it out and see how his head rounded out after he was up and mobile. Now he is 13 months. He started crawling at 11 months, has not started walking. At his 9 month appt his head circumfrise was 43 cm. At his 12 month it was 49.7. So we went back to the neurologist today. She said she wants to do an mri just to make sure there is no fluid aroudnt he brain. (macrocephaly) but she also said his head should have rounded otu more then what it has. So now she is sending us to a neuro seurgon to see if surgery would be an option to help his skull or if we need to go the helmet route. The only reason we are doing a seurgon first is because he is local and we would have to travel to a different state to see a crianology team. So I guess I am confused, shocked, sad, etc about all this. It is hard to find info on the web if having a plagiocephaly has long term effects, if the helmet is the best way to go, what does the surgery intail, etc. I was just wondering if anyone here has done surgery or how their kids do with the helmet. Has anyone opted otu of not doign anything at all and running the risk of their kids head never developing normally? I hope I am making since right now, it is stilla ll so fresh. I was really thinking we woudl go into the doc today and she would tell us his head is looking better and it will get better over time and that he will just have a large head like us. but now it seems that we are dealing with two different problems. Thank you for any answers and support.

March 5, 2009

I'm sorry about the typeos. I meant to say assuming there is NO macrocephaly. Sorry.From: "mattpieczynski" Date: Thu, 05 Mar 2009 19:37:27 -0000<Plagiocephaly >Subject: New here and have lots of questions Hello, My name is . My son is 13 months old. I guess I will start off with our history. When he was about four months old he developed a flat spot and his head measured on the large side. We figured it was due to his position he would lay in. At 6 months we did xrays and figured out his sutures were fine but they saw something else. So we did a CT. They though he might have agenisis of the corpus collusm. We met with a neurologist. She measured mine and my husbands head and we both have large heads. Large head also run in my family. The CT did show some fluid but she said that was common in babies with large heads. The left side of his corpus collusum was small but she thought that was due to the flat spot on the head. So we decided to wait it out and see how his head rounded out after he was up and mobile. Now he is 13 months. He started crawling at 11 months, has not started walking. At his 9 month appt his head circumfrise was 43 cm. At his 12 month it was 49.7. So we went back to the neurologist today. She said she wants to do an mri just to make sure there is no fluid aroudnt he brain. (macrocephaly) but she also said his head should have rounded otu more then what it has. So now she is sending us to a neuro seurgon to see if surgery would be an option to help his skull or if we need to go the helmet route. The only reason we are doing a seurgon first is because he is local and we would have to travel to a different state to see a crianology team. So I guess I am confused, shocked, sad, etc about all this. It is hard to find info on the web if having a plagiocephaly has long term effects, if the helmet is the best way to go, what does the surgery intail, etc. I was just wondering if anyone here has done surgery or how their kids do with the helmet. Has anyone opted otu of not doign anything at all and running the risk of their kids head never developing normally? I hope I am making since right now, it is stilla ll so fresh. I was really thinking we woudl go into the doc today and she would tell us his head is looking better and it will get better over time and that he will just have a large head like us. but now it seems that we are dealing with two different problems. Thank you for any answers and support.

March 5, 2009

Right I think it would be just cosmetic if there is no macrocephaly. We are

just meeting with the suergon first because he is local. Then if he thinks the

band would work we have to go to another state and they would want a detailed ct

and since she also wants an mri we are going to see if we can do both at the

same time so we only have to put him under once.

>

> I'm sorry about the typeos. I meant to say assuming there is NO macrocephaly.

Sorry.

> New here and have lots of questions

>

> Hello,

>

> My name is . My son is 13 months old. I guess I will start off with our

history.

>

> When he was about four months old he developed a flat spot and his head

measured on the large side. We figured it was due to his position he would lay

in. At 6 months we did xrays and figured out his sutures were fine but they saw

something else. So we did a CT. They though he might have agenisis of the

corpus collusm. We met with a neurologist. She measured mine and my husbands

head and we both have large heads. Large head also run in my family. The CT

did show some fluid but she said that was common in babies with large heads.

The left side of his corpus collusum was small but she thought that was due to

the flat spot on the head. So we decided to wait it out and see how his head

rounded out after he was up and mobile. Now he is 13 months. He started

crawling at 11 months, has not started walking. At his 9 month appt his head

circumfrise was 43 cm. At his 12 month it was 49.7. So we went back to the

neurologist today. She said she wants to do an mri just to make sure there is

no fluid aroudnt he brain. (macrocephaly) but she also said his head should have

rounded otu more then what it has. So now she is sending us to a neuro seurgon

to see if surgery would be an option to help his skull or if we need to go the

helmet route. The only reason we are doing a seurgon first is because he is

local and we would have to travel to a different state to see a crianology team.

So I guess I am confused, shocked, sad, etc about all this. It is hard to find

info on the web if having a plagiocephaly has long term effects, if the helmet

is the best way to go, what does the surgery intail, etc. I was just wondering

if anyone here has done surgery or how their kids do with the helmet. Has

anyone opted otu of not doign anything at all and running the risk of their kids

head never developing normally?

> I hope I am making since right now, it is stilla ll so fresh. I was really

thinking we woudl go into the doc today and she would tell us his head is

looking better and it will get better over time and that he will just have a

large head like us. but now it seems that we are dealing with two different

problems.

> Thank you for any answers and support.

>

March 5, 2009

Welcome to the group-

Out of curiosity, I checked my son's head measurements as a form of comparison

and he was 50 3/4 cm at one year old, so larger than your son's and it was never

mentioned as a problem. At 9 months old, he was 48.5 cm, so again larger than

your son's, by a lot. So is the issue for your son that his head grew so fast

from 9 to 12 months? Or that his head is proportionately larger than his his

height and weight (my son has been consistently greater than 90th percentile in

all three: height, weight and head circumference, mostly 95th and 98th+ for

head, and I remember the doctor mentioning that he was just big all over). Also,

if it makes you feel any better, my son didn't crawl (on hands and knees) until

he was 11 months old and didn't walk until he was 16.5 months old, so if gross

motor milestones are concerning you, I wouldn't worry too much about it yet.

(I've heard you shouldn't worry about non-walkers until 18+ months).

In any case, hopefully the MRI will show there is no macrocephaly and it will

just be an issue of correcting his plagio. First of all, surgery is really

invasive and really shouldn't be an option unless there is craniosynostosis

(premature fusing of the skull sutures/plates) involved (it sounds like it

isn't). A helmet/band can help a lot, if not completely correct the plagio, and

is much less invasive. When do you see the neuro? Assuming there are no other

underlying issues, time is of the essence with regard to banding at his age.

Banding over one year of age is not ideal, but is doable (it just takes longer).

My son wasn't banded until he was 17 months old and we saw a lot of correction

(he wore 2 bands for almost 8 months). I would not wait longer to see if things

round out, many of us were told they would and they didn't, that's why I

prolonged banding so long, and I would do anything to go back and do it sooner.

Unfortunately, if there is macrocephaly involved, I'm not really sure how that

is handled. I can't think of anyone else on the board that has had to deal with

that (only a couple I can remember had it ruled out). Also, where are you

located? It might be good to get some references of good helmet companies in

your area, just to be prepared in case you do move in that direction, it will

save you some time.

Good luck! Please keep us posted.

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

P.S. I just checked my daughter's head circumference measurements for the heck

of it: at 9 months she was 47.5 and at 12 months she was 48 3/4. So maybe re:

your son it is the issue of jumping 6 cm in 3 months?