Re: update on Noahs infection of head

May 21, 2002

Darlene -

I feel for you. You were thinking of Noah's best interest by

getting him the helmet only to be poorly advised on how to care for

it.

Does he have a local helmet or is it a band? It sounds as though it

was also to small. Did he grow quite a bit between the casting and

the fitting?

Where do you live? Perhaps someone on this list would be able to

direct you to someone with whom they have had a positive

experience.

I'm sorry I don't have any words of wisdom for you. I, thankfully,

have never walked in your shoes.

Dane's mom DOC Grad

> Hi everybody, sorry I wasn't able to get back to all of your

> responces. It's been very busy over here in our house and Noah

hasn't

> been feeling good. I just wanted to up date some of you on whats

> going on. I also wanted to ask some questions.

>

> First of all, Noah is doing better the infection on his

head

> is starting to heal. They have him on some pretty heavy duty

> antibiotics. Our doctor wants to scrap the helmit idea. We can't

> believe it! Noahs only had the helmit for 1 week. We've spent all

> that money and for what? my husband is furious! The orthotics

wants

> us to see a nuerosurgeon. Which is scaring me to death. Why do

they

> want us to see a surgion? I was told that sometimes if the helmit

> doesn't work that they sometimes need to do surgery even on a

> plagiocephaly baby. Is that true? I was told that surgery isn't

just

> for cranio synosis. Is that true? What will a nuerosurgeon be

able

> to do for Noah if the helmit doesn't work? I'm really now

starting

> to freak out about this. I didn't mind the helmit but then when he

> started with the big bump on his head and then the

> infection????????? Nobody told me these things could happen.

> Doesn't anybody have any advise in this field? We will be seeing

the

> cranio-facial team and the neurosurgion on Wed. This has been a

> living night mare for us. They also supsect that he might be

having

> petite seizures which I was told could be caused from pressure.

I'm

> sorry for the terrible spelling. I haven't been able to think

> straight lately. Last night I rushed like crazy to get supper done

> and get the kids cleaned up so that we could go to our son's

baseball

> game. I got to the game to find out I was 1 day early. I'm telling

ya

> my head is in the cloud lately really bad.

> I've got to go,

> Didn't mean to make this into a

long

> letter. I so sorry.

> Noahs Mom, Darlene

> P.s. Noahs 10 months old.

May 21, 2002

Hi Darlene:

Wow, I feel so bad for you. I am very happy to hear Noah's infection

is getting better while on the antibiotics. Did you ever mention

what type of helmet or band Noah is/was wearing? A locally made

helmet or a STARband perhaps? You've never mentioned Cranial

Technologies so I'm assuming it is not a DOCband. Did you mention

before you live in Connecticut? Just for some peace of mind, maybe

you should call Cranial Technologies (maker of the DOCband) and get

Noah in for a free evaluation? Cranial Tech. deals ONLY with

plagiocephaly babies & their DOCband to correct plagio. They really

are experts in the field of plagio who will give you their honest

opinion and/or advice. There is a Cranial Tech in Clinton, CT - I

don't know if that's anywhere near you - their toll free # is 866-664-

0587. Maybe they could give you some helpful advice.

As for the pediatric neurosurgeon you will be seeing Weds., that is a

great idea to see him. Many of us in our group have been referred to

a ped. neuro before going ahead with helmeting our babies. My

daughter included. I knwo I freaked out when my ped. referred us to

a ped. neurosurgeon but it is common. It's especially important for

Noah to be seen by a specialist right now with all the problems he is

having with his helmet, as well as you mention the possibility of

petite seizures.

Has Noah ever had a CT scan or Xrays done to rule out

craniosynostosis? Surgery is often a last resort in treating

plagiocephaly, but it is hightly recommended to treat

craniosynostosis, as your child's head will never improve if it is in

fact cranio..

Have you visited the www.plagiocephaly.org/support website? If not,

I would suggest doing that. There is a ton of helpful information in

that sight. I'm sure it will answer some of your questions.

Best of luck at the ped.neuro Weds. Give Noah big hugs from all of

us. Let us know how Weds. goes.

Debbie Abby's mom DOCGrad

MI

> Hi everybody, sorry I wasn't able to get back to all of your

> responces. It's been very busy over here in our house and Noah

hasn't

> been feeling good. I just wanted to up date some of you on whats

> going on. I also wanted to ask some questions.

>

> First of all, Noah is doing better the infection on his

head

> is starting to heal. They have him on some pretty heavy duty

> antibiotics. Our doctor wants to scrap the helmit idea. We can't

> believe it! Noahs only had the helmit for 1 week. We've spent all

> that money and for what? my husband is furious! The orthotics wants

> us to see a nuerosurgeon. Which is scaring me to death. Why do they

> want us to see a surgion? I was told that sometimes if the helmit

> doesn't work that they sometimes need to do surgery even on a

> plagiocephaly baby. Is that true? I was told that surgery isn't

just

> for cranio synosis. Is that true? What will a nuerosurgeon be able

> to do for Noah if the helmit doesn't work? I'm really now

starting

> to freak out about this. I didn't mind the helmit but then when he

> started with the big bump on his head and then the

> infection????????? Nobody told me these things could happen.

> Doesn't anybody have any advise in this field? We will be seeing

the

> cranio-facial team and the neurosurgion on Wed. This has been a

> living night mare for us. They also supsect that he might be having

> petite seizures which I was told could be caused from pressure. I'm

> sorry for the terrible spelling. I haven't been able to think

> straight lately. Last night I rushed like crazy to get supper done

> and get the kids cleaned up so that we could go to our son's

baseball

> game. I got to the game to find out I was 1 day early. I'm telling

ya

> my head is in the cloud lately really bad.

> I've got to go,

> Didn't mean to make this into a

long

> letter. I so sorry.

> Noahs Mom, Darlene

> P.s. Noahs 10 months old.

May 21, 2002

Hi Darlene:

I just wanted to give you some support and let you know that I am

thinking of you as you go through this. It's no wonder that you are

feeling scared and scattered. I have not heard of anything like

this, so I can't offer any information that might be useful.

Maybe if you find a moment, write down all of your questions to ask

your doctors, (if you haven't thought of that already). I have heard

of surgery on non-cranio kids, but mostly as a reference as to why to

helmet.

I think it's a great idea to see a neurosurgeon to rule out any other

types of problems that may be treated and prevent any other symptoms

from happening. I can imagine the fear is overwhelming, and I am

hoping that the answers you get are positive and minor.

Kind regards,

, Rhiannon's mom