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Hi Cheryl,

Welcome to this group. I don't have a lot of answers to your questions (my son

is 10

weeks old, and we too just found out), but I feel the same way about not being

informed

earlier... and it's not that I didn't try, I read pregnancy and baby care books

(tons

of them), took prenatal classes and surf the net a lot to be informed. So like

you,

I'm a bit mad that I wasn't informed more properly.

We are now putting our son to sleep on his side alternating sides using the

Curved side

sleeper from " Elfe " (he is sleeping well that way, he seems used to it now), and

we do

put him on his tummy a lot during the day. Already in one week, he is getting

more use

to it and likes it a little better. The way he stays on his tummy the longest,

is by

putting him down on a boppy (nursing) pillow and me down in front of it talking

to him

and with some toys.

As for something to be able to put him on his back with less pressure on his

head, the

only thing I found is a pillow at this site: http://www.knickknackpw.com/. I'm

thinking of ordering it, and ask around if anybody uses it, but didn't get an

answer.

So I don't know if it is any good.

As for a time frame, we will try repositioning until our next appointment at the

ped.

(at 4 months), so it gives us almost two months of repositioning to see if there

is

progress. Then we will discuss a helmet.

Annick

P.s.: Kendra, I did hear from a friend there is an helmet program for the

positional

plagiocephaly at the St-e children's hospital here in Montreal. I will

look for

more info on it.

> Message: 13

> Date: Fri, 6 Apr 2001 12:08:56 -0400

> From: cheryl.noel@...

> Subject: RE: Digest Number 838

>

> Hi! We're new to this group. Our son Cade is now 9 weeks old, and we

> started to notice what our pediatrician called occipital plagiocephaly at

> approx. 6 weeks. We consistently put him to sleep on his back to reduce the

> risk of SIDS, and our ped told us that this is the cause. We can't help but

> feel that something should be stated (by the AAP, US Public Health Service,

> doctors, nurses, etc.) as far as the risks of plagiocephaly and education

> for parents on alternative positioning to avoid plagio. I noticed that

> --you mentioned the " AAP Petition " . What exactly is that? Do you

> know where I could find out more about it? Anyhow, now we have been putting

> Cade on his stomach to sleep to try to give his head a chance to " round out "

> (we have a video monitor to watch him as much as possible in the night), but

> still we're nervous about doing that and SIDS. We've tried to sleep him on

> his side with wedges around him, but he seems to be really uncomfortable on

> his side. Does anyone have any info. on good positioning devices? (I've

> already checked out the positioning advice on the plagiocephaly.org

> website.) Does anyone know if there is anything that allows them to still

> sleep on their backs, with reduced pressure on their heads? Also, I've been

> hearing stories from many parents, pediatricians, grandparents, etc., that

> say that these kids' heads do round out on their own, and that I don't need

> to pursue anything like a helmet. How long did any of you wait, and what

> strategies did you use, before you realized your childrens' heads weren't

> reshaping on their own? Sorry for all of the questions, but we're really

> trying to figure out what to do! Thanks so much....

>

> Cheryl V.

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P.s.: Kendra, I did hear from a friend there is an helmet program for the positionalplagiocephaly at the St-e children's hospital here in Montreal. I will look formore info on it.

Thank you Annick!!! I am very interested! :o)

Kendra in CanadaFor more plagio info, go towww.plagiocephaly.org/support

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

From: Annick Vauthier

Plagiocephaly

Sent: Saturday, April 07, 2001 9:11 PM

Subject: Re: Cheryl

Hi Cheryl,Welcome to this group. I don't have a lot of answers to your questions (my son is 10weeks old, and we too just found out), but I feel the same way about not being informedearlier... and it's not that I didn't try, I read pregnancy and baby care books (tonsof them), took prenatal classes and surf the net a lot to be informed. So like you,I'm a bit mad that I wasn't informed more properly.We are now putting our son to sleep on his side alternating sides using the Curved sidesleeper from "Elfe" (he is sleeping well that way, he seems used to it now), and we doput him on his tummy a lot during the day. Already in one week, he is getting more useto it and likes it a little better. The way he stays on his tummy the longest, is byputting him down on a boppy (nursing) pillow and me down in front of it talking to himand with some toys.As for something to be able to put him on his back with less pressure on his head, theonly thing I found is a pillow at this site: http://www.knickknackpw.com/. I'mthinking of ordering it, and ask around if anybody uses it, but didn't get an answer.So I don't know if it is any good.As for a time frame, we will try repositioning until our next appointment at the ped.(at 4 months), so it gives us almost two months of repositioning to see if there isprogress. Then we will discuss a helmet.AnnickP.s.: Kendra, I did hear from a friend there is an helmet program for the positionalplagiocephaly at the St-e children's hospital here in Montreal. I will look formore info on it.> Message: 13> Date: Fri, 6 Apr 2001 12:08:56 -0400> From: cheryl.noel@...> Subject: RE: Digest Number 838>> Hi! We're new to this group. Our son Cade is now 9 weeks old, and we> started to notice what our pediatrician called occipital plagiocephaly at> approx. 6 weeks. We consistently put him to sleep on his back to reduce the> risk of SIDS, and our ped told us that this is the cause. We can't help but> feel that something should be stated (by the AAP, US Public Health Service,> doctors, nurses, etc.) as far as the risks of plagiocephaly and education> for parents on alternative positioning to avoid plagio. I noticed that> --you mentioned the "AAP Petition". What exactly is that? Do you> know where I could find out more about it? Anyhow, now we have been putting> Cade on his stomach to sleep to try to give his head a chance to "round out"> (we have a video monitor to watch him as much as possible in the night), but> still we're nervous about doing that and SIDS. We've tried to sleep him on> his side with wedges around him, but he seems to be really uncomfortable on> his side. Does anyone have any info. on good positioning devices? (I've> already checked out the positioning advice on the plagiocephaly.org> website.) Does anyone know if there is anything that allows them to still> sleep on their backs, with reduced pressure on their heads? Also, I've been> hearing stories from many parents, pediatricians, grandparents, etc., that> say that these kids' heads do round out on their own, and that I don't need> to pursue anything like a helmet. How long did any of you wait, and what> strategies did you use, before you realized your childrens' heads weren't> reshaping on their own? Sorry for all of the questions, but we're really> trying to figure out what to do! Thanks so much....>> Cheryl V.

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  • 1 month later...
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,

In the area where I see the ridge rounding towards the left side, there gets a little red

but goes away pretty quick. He is sweating, but so far no heat rash. Sorry to hear

that is going through that. Hope your day gets better!!!

goes back on Monday to Paramus so we'll point that spot out and I'm sure

that Charlotte will do an adjustment.

Cheryl....s Mom-Mom

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Hi Cheryl,

Thanks for your response. Glad to hear that you aren't having any problems with the band, ' heat rash has already cleared and I had them shave off some more around the ears and at the forehead. But, yesterday evening, I noticed a small red spot that would not go away for a couple of hours, so I left it off all night. This morning it was gone, but CT wants to wait until it shows up again today, and then rush in before the weekend! This wouldn't be so difficult if i didn't have to work or my husband was more readily available (he's a mechanic and gets pretty dirty!). My day seriously improved, my brother surprised me and cleaned my house and my mom called to bring me some groceries! That helped!

Have a great day and a great weekend.....counting down the days till non-banding!

' mom 1-10-01/ banded 6-4-01

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  • 3 years later...
Guest guest

> Oh, don't I know it about the pred! Earlier this year I had to take

120 mg a

> day and I was horribly, horribly irritable (my poor husband is a

saint to

> have put up with me), always ravenous, and had a face like a

basketball.

> Thank God I don't have to take it all the time (only when I have an

> " exacerbation " , usually from an upper respiratory infection), and

tapered

> off. I couldn't stand taking it all the time, and my heart goes out

to

> everyone who does. It's nasty stuff.

>

> I get my third Xolair shot Saturday. I think there may be a slight

> improvement in my symptoms, but I'm not sure, need more time to

see. The

> only reaction I've had from the Xolair has been a strange,

transitory

> flushing on my arms around the shot sites, my back and chest,

happening

> about 2-3 hours after the injections. No itching, no raised bumps,

no other

> symptoms, and it always fades quickly, so I'm not really concerned,

although

> I did duly report it to the doctor. Has anyone else experienced

anything

> like that?

>

> Cheryl

Cheryl,

Bless you heart to have to be on 120 mg a day. Man, they might has

well put me in a straight jacket. Whew, how did you stand it?

I got my Xolair injections today. My nurse says that quite a bit of

the asthma patients in their office are having problems due to a very

high mold count in this area that is around 1400. Thus, my being on

pred for a few more weeks till it blows over.

Give the Xolair some time, it took me 6 months to see any results.

Doug

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  • 3 years later...
Guest guest

To cheryl,

I love this cheryl and would be what I would want to say to you, but these are so eloquent that it says it all... when we want to heal, we heal... abundant blessings sent your way for your family Cheryl,

hugs, in MN

In a message dated 3/20/2008 5:56:38 A.M. Central Standard Time, writes:

Please share this with them.When they choose to live, they may not getwell. When they choose to heal, and are willing to heal, they will stepfully into perfect health and wellbeing, and live fully. Please share thiswith them.Sending prayers of strength, courage and wellbeing radiating to and throughall of you and humanity, In divine grace and luminescent love, Jacqui

"Become your own hero" Create a Home Theater Like the Pros. Watch the video on AOL Home.

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