Re: Hi...I'm new here and a little overwhelmed by all this....

[Guest guest]

Domi:

I was in your position about 2 months ago. I resented the helmet idea for

the reasons that concern you (not being able to kiss them and cuddle like

before) also, for me I thought everyone is going to stare, etc. It was blow

to me too. I cried and felt horrible.

Today, my daughter Casey has been in her helmet for 1 month now. I'm a proud

mommy. We've seen 30% correction in her first two weeks. She wears it 23

hours per day (1 hour off for bathing). I wish I could go on a talk show and

tell people how lucky we are to have this therapy available!

I love bathing time. I kiss her constantly and gaze at her soon to be

beautiful head. They get use to the helmet and it really helps as they crawl

around (the helmet protects them when the bang into things ). At any rate,

I feel so thankful to have been referred by our ped and to have access to

local helmet and band treatment centers.

At any rate, just wanted you to know, there is a bright side. And the

question I use to ask myself is...what's 4 months of wearing a helmet versus

ridicule later on in life? I think all parents in this group went through

feeling guilty, sad, etc. but as you read the post you'll see the end

results have brought much relief and joy to all.

Take care and good luck. We're all here to help.

in Fountain Valley, CA

[Guest guest]

Hi Dominika:

I'm glad that you were able to find this group. Did your doctor say a word like "craniosynostosis"?

What type of specialist did he recommend? My son, Quinn (11/17/ 99) was born with a long, narrow head and this resembled craniosynostosis (which is a fused suture -- in this particular case, when the sagittal suture is closed, the head becomes long and narrow....) there are other causes of this head shape, of course. in our case it was a breech position, which he was also in for a long time. If it is a fused suture, they may possibly have to do surgery. The determined it wasn't fused by doing a CT scan when he was one week old. we saw a specialist who wasn't unduly concerned, but the more I thought about that visit, the more I wanted to know. We were to see him in 3 months (when Quinn was 4 months old). In that time, I took pictures of similar poses, and got on the net to learn more -- which is how I found this group (it's hard to believe in February there were only about 20 people on this list....)

at our 4 month visit I took in my concerns and pictures -- he wrote a letter of medical necessity, and we played with (and are still playing with) insurance -- but we did go ahead with treatment while we fight. Quinn was casted on his 6 mnth birthday ( it doesn't hurt, but he was a bit upset.... he did leave the clinic smiling, though).

We got our DOC band on June 9th, and we are already seeing some wonderful results.... I just wanted you to know there were others out here with a similar head shape (though his was still a bit different from a lot of the other children on this list). His picture is listed in the files section under "Head shapes" (Quinn -- there are two pictures in that file). Then, in the folder, H/Kali -- there are some monthly shots, though I've purged some of the early ones so I could add some new ones....

Any way -- I wanted to let you know that there are people out here that can help. If it is craniosynostosis, there is a parent group, too. their webpage is http://www.caps2000.org/

please know that if you have any questions, someone out here will surely try to answer them, or refer you to a place where you can get answers. It's a lot to hold all at once, I know.

As for cuddling... yeah, it's a little more difficult, but I kiss the top of his head a lot now... and can still kiss his cheeks and behind his ears....

and I know that it's only for a short while...

good luck

H.

(a.k.a. "Kali")

-----Original Message-----From: Dominika [mailto:dominika@...]Sent: Friday, July 14, 2000 10:24 PMPlagiocephalyegroupsSubject: Hi...I'm new here and a little overwhelmed by all this....Hi...My name is Dominika (24, married to (24) we have a son (2.5yr.) and Aimee (6 months old). We live in Dallas Texas. My daughter Aimee had her 6 month check up yesterday and the second the doc walked in he said something that i don't even know how to repeat and said.."take her to a specialist". To say the least I am freaked out and don't know how to handle this. We have our first appt. on the 25th with a team of 3 doctors. What can I expect to happen? When does casting take place? Does this hurt the babies? How are you all dealing with this emotionally? I feel like a wreck....I keep looking at her like thats it...I won't get to cuddle her cheek to cheek like we have been and I won't get to nuzzle that little neck of hers...I know I am just overeacting but this is such a blow to me. I am so overwhelmed by this that all rational logic seems to be escaping me...LOL. I guess I should explain that Aimee's head is long and narrow and it was never a concern of mine until yesterday. She has a very high forhead and little droopy cheeks....She is my little doll! Anyways....Thats it for now...any and all advice would be greatly appreciated. Hugs to all!DomiPS...I took a look at y'alls babies and they are all soooo adorable! Such beautiful smiles on each of em!

[Guest guest]

Kali and ....

Thank you for your kind words! I know that we have to go ahead and do this but as all of us know this is hard. Aimee was breech the entire pregnancy and was born via c-section. Anyways...she had a really long head. It has improved dramatically in the last six months on its own but not enough for the doctor so that is why we are being referred to a cranialfacial specialist. I have no idea what to expect or what even happens. I tried asking questions of the nurse who works for my peds. office but she was no help and the lady at the specialists office wasn't able to really help as she was the one who dealt with new patient info. I am hoping to find out more about the first visits and will probably call the office again on monday. I don't remember the term her pediatrician used but I don't believe her soft spots have closed prematurely because the ped. didn't mention it at all...instead he took one look at her told her how cute she is...hugged her and then told me what it is.....but for the life of me I don't remember the word. I was sooo thrown back. I had really thought that her improvement was good enough and so I hadn't worried about it at all....Oh well....I am just glad that she can be helped and that my ped. was concerned enough for her! I am glad to be a part of this group because otherwise I don't think I would be able to handle this alone. My dh doesn't really seem all that concerned at all and is really laid back about the situation which itself is stressing me out....LOL...Anyways, I won't ramble on anymore. Take care and have a great week!

Domi

[Guest guest]

Domi:

Don't be sad. I felt the way you did when my Pedi said the same

thing. My son is 5 months old and has moderate to severe Plagio.

He's my sweetheart and I too thought it would be so hard to cuddle him,

feed him, nuzzle him, and kiss those beautiful soft cheeks. Skylar

has been in his band for 2 1/2 weeks now, he is doing terrific. It

doesn't bother him at all and I can kiss him and nuzzle him just as much

as before. You get used to it. I know the news is terrifying at the

though of anything being wrong with your precious baby, but it will

subside some. Your heart breaks a little when you first see him in

it and people stare and ask questions, but that all gets better too.

You start to realize that you are glad that this is all it is, nothing

worse for ex. surgery or something major. They won't even remember

having treatment. I don't know how long things will take for you

I can only tell you my experience and hope that it helps some. We

saw our Pedi. May 25th, saw the Neuro. May 30th (only got that appt. so

quick cause I was pushy), met with Cranial Tech after Insurance approval

June 23rd for casting and was fitted for the band and wearing 23 hours

by June 30th. So, it took as about a month to jump through all the

hoops but we did it. Hang in there, and good luck to you. Keep

us posted.

Welcome to the group.

Sherri & Skylar

[Guest guest]

Hi Sherri...

Thanks for the warm welcom...I am feeling better and better about this and I know it will be a big adjustment it will be worth it. Right now we are battling our ins. company about the referrals....its not working to well right now but hopefully it will all get done and soon!

Once again thanks!

HUGS,

Domi

----- Original Message -----

From: Sherri Walsh

Plagiocephalyegroups

Sent: Monday, July 17, 2000 11:44 AM

Subject: Re: Hi...I'm new here and a little overwhelmed by all this....

Domi: Don't be sad. I felt the way you did when my Pedi said the same thing. My son is 5 months old and has moderate to severe Plagio. He's my sweetheart and I too thought it would be so hard to cuddle him, feed him, nuzzle him, and kiss those beautiful soft cheeks. Skylar has been in his band for 2 1/2 weeks now, he is doing terrific. It doesn't bother him at all and I can kiss him and nuzzle him just as much as before. You get used to it. I know the news is terrifying at the though of anything being wrong with your precious baby, but it will subside some. Your heart breaks a little when you first see him in it and people stare and ask questions, but that all gets better too. You start to realize that you are glad that this is all it is, nothing worse for ex. surgery or something major. They won't even remember having treatment. I don't know how long things will take for you I can only tell you my experience and hope that it helps some. We saw our Pedi. May 25th, saw the Neuro. May 30th (only got that appt. so quick cause I was pushy), met with Cranial Tech after Insurance approval June 23rd for casting and was fitted for the band and wearing 23 hours by June 30th. So, it took as about a month to jump through all the hoops but we did it. Hang in there, and good luck to you. Keep us posted. Welcome to the group. Sherri & Skylar

[Guest guest]

Domi:

I didn't have any insurance trouble myself, but I know many others in

the group did, ask questions regarding the insurance battles, I think

you will get lot's of feed back and great ideas from everyone here.

Good Luck, keep me posted...I'm thinking of you.

Sherri

[Guest guest]

thanks sherri....i am hoping that the refferals needed go through and soon

cause otherwise we might not get to see the doc. and its obvious that we

need to. They also want me to bring in my ds so that they can rule out

genetics....did any of you do this? Also wanted to know how I can post some

pictures of my Aimee dumpling? Thanks!

Domi

PS...will keep you updated on the ins. battle....sigh...

----- Original Message -----

From: " Sherri Walsh " <shwalsh@...>

<Plagiocephalyegroups>

Sent: Wednesday, July 19, 2000 11:07 AM

Subject: Re: Hi...I'm new here and a little overwhelmed by all

this....

> Domi:

>

> I didn't have any insurance trouble myself, but I know many others in

> the group did, ask questions regarding the insurance battles, I think

> you will get lot's of feed back and great ideas from everyone here.

> Good Luck, keep me posted...I'm thinking of you.

>

> Sherri

>

>

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[Guest guest]

Domi:

Not sure on the picture thing, haven't done it yet but need to. I

haven't heard of anyone ruling out genetics. If anyone else has, fill

me in. I find that interesting. Good Luck.

Sherri