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In a message dated 1/18/02 10:13:27 AM Eastern Standard Time,

blankenships@... writes:

> 1. Does aloe vera juice do anything for digestion? I read on another

> group that it helps get rid of candida, so I gave some to my boys. I

> think it helped calm my oldest. not sure thou.

>

Debbie --

I've been reading up on aloe vera because my mom has developed ulcerative

colitis and I'm looking for ways to help her.

I'm a little early in my research, but I have found out that there are two

different

types of aloe vera preparations. One is whole fresh leaf aloe vera gel and

the other

is aloe latex, which is the sticky residue left over after the liquid from

cut aloe leaves has evaporated. Aloe latex (which most aloe very juice is

made from) is known for its powerful laxative effects. Stabilized aloe vera

gel is known for its anti-inflammatory, wound healing properties.

So, it is a little more complicated than it first appears. If I were you, I

would research

it; maybe do a search on candida/aloe and see what you find out. I know some

research has been published about aloe's effect on the intestinal flora.

Celia

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  • 8 months later...

> Hi everyone,

>

> I have started Pep and Zyne-Prime with my 4 and 6 year old. My

older

> son seems to be reacting negatively to Pep. He became irritable and

> more stimmy. I took it away and gave Zyne only and he seems better.

> We tried AFP with no noticeable effect. Any suggestions?

How long were you giving it? Could it have been withdrawal effect?

If it was a reaction to an ingredient in the Peptizyde, then you can

try AFP. If you saw no noticeable effect, it may have been that the

enzyme was not effective for him, but it may also have been that since

he is gfcf, there was nothing for the enzyme to work on. You can

consider giving AFP again with something containing a *small* amount

of gluten or casein, to see if it does have some effect for him.

My 4 year

> old, though is doing great. He has always had digestive issues, but

> there is already some improvement, both digestively and with speech

> and interaction. He tolerates Pep and Zyne no problem. I was also

> wondering how long before you " challenge " with normal food, gluten

and

> casein.

I waited about a month, until the adjustment period for them

tolerating the enzymes was over.

We have halloween coming up and I've been wondering how to

> handle it. My older one is EXTREMELY sensitive to soy, which of

> course is in most chocolate candy given out at halloween. Any

advice

> or suggestions would be appreciated.

You can try giving a *small* piece of chocolate candy now, to see how

your son will tolerate it. I would not challenge for the first time

on the actual day of Halloween tho, just in case there is a major

problem, you don't want to ruin it for him. But if he does okay with

the challenge, then you can allow a little more on the actual day.

Dana

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>>> I have started Pep and Zyne-Prime with my 4 and 6 year old. My

older son seems to be reacting negatively to Pep. He became

irritable and more stimmy.

This can be typical for several reasons due to adjusting to the

enzymes, and can also be gut healing. I will send you the file on

what to expect because it explains why these things may occur. You

may want to reduce the dose of Peptizyde for a few days so the

adjustment is gentler, like 1/2 capsule instead of a whole capsule.

>>I took it away and gave Zyne only and he seems better.

This agress with the above. A Zyme plus a half of Pep may be a good

mix for a few days. Are you GFCF or some other restrictive diet now?

This is very common when starting GFCF too.

>>> We tried AFP with no noticeable effect. Any suggestions?

I am a little confused here. You tried the AFP first with no effect

and now you are trying the regular Peptizyde? is that correct?

>>>My 4 year old, though is doing great. He has always had

digestive issues, but there is already some improvement, both

digestively and with speech and interaction. He tolerates Pep and

Zyne no problem.

Wa-HOOOO!!! Alright. This is great to hear. Isn't it interesting how

two similar kids in the same family can be so different too?

>>>I was also wondering how long before you " challenge " with normal

food, gluten and casein.

In contrast to Dana, we waited about 3 minutes. However, I would

suggest about a week to make sure they have adjusted to the enzymes,

particularly for the older one. And then do as she suggested, just a

little bit at a time before instead of waiting for Candy Day.

.

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> >>> I have started Pep and Zyne-Prime with my 4 and 6 year old. My

> older son seems to be reacting negatively to Pep. He became

> irritable and more stimmy.

>

> This can be typical for several reasons due to adjusting to the

> enzymes, and can also be gut healing. I will send you the file on

> what to expect because it explains why these things may occur. You

> may want to reduce the dose of Peptizyde for a few days so the

> adjustment is gentler, like 1/2 capsule instead of a whole capsule.

>

>

> >>I took it away and gave Zyne only and he seems better.

>

> This agress with the above. A Zyme plus a half of Pep may be a good

> mix for a few days. Are you GFCF or some other restrictive diet

now?

> This is very common when starting GFCF too.

>

> >>> We tried AFP with no noticeable effect. Any suggestions?

,

We have been on and off again with the GFCF diet for a little over a

year. My oldest seems to react to everything, even when GFCFSF, so

we would go off the diet, then ultimately come back to it because he

got worse. He seems to have a mal-absorbtion problem, with several

deficiencies like B vits, Selenium, iron, EFA's and he is very thin,

weighing in at 39 pounds. This is inspite of the amount he eats, so

I started with No-Fenol and AFP last month. AFP I have heard is not

as strong as the regular PEP, so I tried the regular one to see if

there would be improvement, instead he got worse. In thinking about

this, I remebered that I did a challenge with him this week-oats.

Could it be that he was reacting(rather delayed!) to the oats, not

the enzyme, or was the enzyme pulling it out of his system faster? I

did challenge gluten with my younger, less reactive son this week.

His stools got a little looser, but his speech and interaction seemed

to remain in tact, so I may wait a bit longer before I do it again.

Thank you for sending me the file-I printed it out as well as some

others from the file section.

Thanks,

Tina

>

> I am a little confused here. You tried the AFP first with no effect

> and now you are trying the regular Peptizyde? is that correct?

>

> >>>My 4 year old, though is doing great. He has always had

> digestive issues, but there is already some improvement, both

> digestively and with speech and interaction. He tolerates Pep and

> Zyne no problem.

>

> Wa-HOOOO!!! Alright. This is great to hear. Isn't it interesting

how

> two similar kids in the same family can be so different too?

>

> >>>I was also wondering how long before you " challenge " with normal

> food, gluten and casein.

>

> In contrast to Dana, we waited about 3 minutes. However, I would

> suggest about a week to make sure they have adjusted to the

enzymes,

> particularly for the older one. And then do as she suggested, just

a

> little bit at a time before instead of waiting for Candy Day.

>

> .

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  • 4 years later...
Guest guest

I understand that but I guess I want to know about anyone who did get better...b/c right now my RRMS is in a bad place...but I am willing to try anything...AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

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Prednisone taper is what I am doing now...and it really isn't working...when I was in the hospital it was the solumantral iv...which didn't really work...so I am looking forward to getting LDN...I just don't know which doc to contact that does phone consultationsAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

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Meghann

Please be aware that LDN's main purpose is to STOP progression of MS. Any symptom improvement is an added benefit, and some people get symptom relief.

No one can predict how LDN will help you. The only way to know is to try it. We're all different and LDN affects everyone differently.

Good luck

Arlene

-------------- Original message -------------- From: "Meghann" <redgrwl@...>

Before I call one of doc that does phone consulations i need to know if anyone else had the same systoms as I do with MS and if they were fixed or hlped with LDN....If anyone with MS that took lDN during an episode could write me and let me know what your systoms were and if LDN hlped I would appricate itMeghann

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Guest guest

>

> I understand that but I guess I want to know about anyone who did

get

> better...b/c right now my RRMS is in a bad place...but I am willing

to try

> anything...

>

I've had MS for 18 years. I've tried Avonex, Copaxone and Novantrone

and many, many solumedrol IV's and prednisone tapers. I've been taking

LDN for two years and compared to the other medications it has been

like a miracle for me. I'm sorry I didn't know about it sooner.

Good luck.

Artie

--

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Guest guest

>

> Prednisone taper is what I am doing now...and it really isn't

working...when

> I was in the hospital it was the solumantral iv...which didn't

really

> work...so I am looking forward to getting LDN...I just don't know

which doc to

> contact that does phone consultations

>

Here's one choice.

Dr. Ayre prescribes low-dose Naltrexone in the management of Multiple

Sclerosis. Consultations can be done through our office or by phone.

Phone consultations are $200.00 for an hour and a half and pertinent

medical records can be faxed prior to the consultation.

http://www.contemporarymedicine.net/contact_us.htm

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  • 2 months later...
Guest guest

What kind of supplements are you looking for? GFCF Vitamins,

minerals, probiotics.... can be found at the following (I don't think

everything these companies offer is GFCF so read the labels. From our

experience these seem to be the big 3 that the DAN doctors use):

www.kirkmanlabs.com

www.brainchildnutritionals.com

www.nbnus.com

>

> I know someone gave me this info before but I cannot find it. Can

> someone please tell me where to get the best quality GFCF

supplements

> for toddlers and adults?

>

> Thanks!

> Liz

>

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Guest guest

Just a munltivitamin and fish oil. Thanks for hooking me up:)

lcook100 wrote:

>What kind of supplements are you looking for? GFCF Vitamins,

>minerals, probiotics.... can be found at the following (I don't think

>everything these companies offer is GFCF so read the labels. From our

>experience these seem to be the big 3 that the DAN doctors use):

>

>www.kirkmanlabs.com

>www.brainchildnutritionals.com

>www.nbnus.com

>

>

>

>

>

>

>>I know someone gave me this info before but I cannot find it. Can

>>someone please tell me where to get the best quality GFCF

>>

>>

>supplements

>

>

>>for toddlers and adults?

>>

>>Thanks!

>>Liz

>>

>>

>>

>

>

>

>

>

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  • 2 years later...

Great questions!

Actually, 2 of our moderators (not very active on the board anymore) both had 2

babies each with bands and apparently it is due to the shape of their

uterus/pelvis. actually just had her 3rd baby in June and is closely

monitoring the shape of her head, I think right now it's looking like she won't

need one. I think if the plagio/brachy is primarily from inuterine positioning,

it's possible that the next baby will have it as well. Although my first child

did not have plagio, my second was born 10 lbs 11 oz and was restricted inutero

(which caused both tort and a dent in his head), so I don't think it was the

shape of my uterus as much as his overall size. If the plagio is primarily

positional, then it's possible to avoid with a second child now that you know

what your are looking for.

Yes, babies with tort are partilularly stubborn because their necks are stiff

and in my case, he was also large, so I couldn't get him to stay in the position

I wanted him. Also, once the head reaches a certain flatness, it's more

comfortable for them to be on the flat spot. So even after you work out the

stiffness in their neck, it's hard for them to stay comfortably on their

prominent side.

As far as expenses, there was PT for his tort, then later on his 2 bands, plus

appointments/copays/etc from all the doctors we saw. Then we had to travel

nearly 3 hours for his band/adjustments for almost 8 motnhs, so there was gas

and other expenses related to that. It was all worth it for me though, I just

wish we had done it when he was 4 or 6 months rather than 17-24 months.

Hope that helps!

Jake-3 (DOCBand Grad 9/08)

>

> I was wondering has anyone been told that this type of condition can occur

again if you were to get pregnant again?

>

> Do any of your babies seem to be stubborn and do anything to turn to the side

they are not supposed to lay on?

>

> What extra costs has everyone occurded since they found out about there childs

condition?

>

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thank you for your help with all my questions...

you know a a first time parent i have a lot more questions now that she has this

condition. My husband and I have discussed the posibilities of having more

children but I told him as of for right now I'm happy with her. I also told him

that until he can decide to get up in the middle of the night to feed the baby I

think we don't need to have any more. Even though I don't mind waking up with

her...it leaves me really tired esp. with having a full time job on top of

everything else.

So even after extreme repositioning measures did your child still have to have

the bands?

So far we have been very fortunate to be living so close to the medical

facilities so at the most we have a 45 min. drive. and the therapist is right

down the street from her daycare.

How long did it take for your child to become adjusted to sleeping the entire

night on his/her side before waking up to reposition themselves?

> >

> > I was wondering has anyone been told that this type of condition can occur

again if you were to get pregnant again?

> >

> > Do any of your babies seem to be stubborn and do anything to turn to the

side they are not supposed to lay on?

> >

> > What extra costs has everyone occurded since they found out about there

childs condition?

> >

>

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My 3rd child is the one with torticollis and plagio--my 1st and 2nd hated tummy

time and I didn't push it too much, but they didnt' have torticollis and turned

their heads frequently--

Yes, my 3rd was stubborn about repositioning--but I put something under the legs

of his crib so that it was slanted--and it was REALLY hard for him to turn

uphill, and I got up every hour or so at night to reposition him for a week or

two until we made a new habit. I had to be as stubborn as he was :)

Out of pocket--we've had between $3K and $4K. Insurance is supposed to be

paying me back between $1 and $2K, but I haven't seen any of that yet.

hth

Betsy

I was wondering has anyone been told that this type of condition can occur again

if you were to get pregnant again?

Do any of your babies seem to be stubborn and do anything to turn to the side

they are not supposed to lay on?

What extra costs has everyone occurded since they found out about there childs

condition?

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Hi,

It has also been our experience that both our babies had preferences to

turn right and both developed plagio. The bigger, second baby (9lbs,

2oz) developed it worse than the first (7lbs, 3oz). His head never

looked good, but he was not born with plagio. His head was cone shaped

and big. I am petite at under 110lbs and I'm starting to wonder if

that was a factor. My OB said that my second was a very big baby for

me. The neck issues may have started inutero or during birth.

Kathy

nwilkens2275 wrote:

Great questions!

Actually, 2 of our moderators (not very active on the board anymore)

both had 2 babies each with bands and apparently it is due to the shape

of their uterus/pelvis. actually just had her 3rd baby in June

and is closely monitoring the shape of her head, I think right now it's

looking like she won't need one. I think if the plagio/brachy is

primarily from inuterine positioning, it's possible that the next baby

will have it as well. Although my first child did not have plagio, my

second was born 10 lbs 11 oz and was restricted inutero (which caused

both tort and a dent in his head), so I don't think it was the shape of

my uterus as much as his overall size. If the plagio is primarily

positional, then it's possible to avoid with a second child now that

you know what your are looking for.

Yes, babies with tort are partilularly stubborn because their necks are

stiff and in my case, he was also large, so I couldn't get him to stay

in the position I wanted him. Also, once the head reaches a certain

flatness, it's more comfortable for them to be on the flat spot. So

even after you work out the stiffness in their neck, it's hard for them

to stay comfortably on their prominent side.

As far as expenses, there was PT for his tort, then later on his 2

bands, plus appointments/copays/etc from all the doctors we saw.

Then we had to travel nearly 3 hours for his band/adjustments for

almost 8 motnhs, so there was gas and other expenses related to that.

It was all worth it for me though, I just wish we had done it when he

was 4 or 6 months rather than 17-24 months.

Hope that helps!

Jake-3 (DOCBand Grad 9/08)

>

> I was wondering has anyone been told that this type of condition

can occur again if you were to get pregnant again?

>

> Do any of your babies seem to be stubborn and do anything to turn

to the side they are not supposed to lay on?

>

> What extra costs has everyone occurded since they found out about

there childs condition?

>

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Hi Jill,

if the plagio was caused by molding in the uterus it can happen again. If your

uterus shape is odd or if the baby tends to be cramped because you are small and

the baby is big. However many have only a single plagio baby. Also knowing what

to look for the 2nd time around can help, since you can work on varying the head

position right from birth, and do stretches for tort early on.

In terms of stubborn - it might just be comfort. When a baby has tort it is

difficult to turn the head in a certain direction, so the baby doesn't. He/she

just does what is comfy and easy. Also once the spot gets flat it is very nice

to sleep on :-) The baby isn't trying to annoy you - that happens later when

they are about 2 yrs old, and lasts until adulthood.

-christine

sydney, 3.5 yrs, starband grad

>

> I was wondering has anyone been told that this type of condition can occur

again if you were to get pregnant again?

>

> Do any of your babies seem to be stubborn and do anything to turn to the side

they are not supposed to lay on?

>

> What extra costs has everyone occurded since they found out about there childs

condition?

>

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  • 6 months later...
Guest guest

It sounds like he might have torticollis... but I'm not 100% sure what you are describing. Is it a whole body leaning or just his head?

You should talk to the ped about it... and see a Pediatric Physical Therapist is needed.

For sweating - my dd had her band in summer too. We dressed her in just onsies alot... and kept her inside in the air conditioning as much as possible. There were a few baseball games for my older son we had to take her to and it was over 100 degrees and we took of the band.

Also, you can buy a battery powered little clip fan for the stroller, etc Just make sure it's the kind with soft foam blades and it auto shuts off it touched.

HTH!

Jen

Mom to Luli - 4 yrs old

Torticollis, Plagio, Syringomyelia

questions

Ok my son went for measurements again at Hanger his measurements haven't gotten any better or any worse. So not much change has taken place with us doing repostition. I have a few questions 1.) if our insurance company approves his band he may have to wear it in summer time, Arizona is hotter than heck. What do you do in that case as far as sweating while wearing band? 2.)Another my son leans to one side more than the other preferably on the right and hes always looking up is that from his head being bigger? He has the flatness on the back of his head so the width of his head is growing outward.

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Guest guest

Hi! I'm from AZ (but live in CA now) so I understand about that heat. You are going to dress him really lightly (and no socks obviously) and check his band often to dry off his head and band. Maybe he has torticollis? It sounds like he has a "tilt". My daughter has it but it is much better (her neck) and the tilt is gone for now (came back before when she was teething) but that was through seeing a pediatric physical therapist and exercises at home. So maybe make an appt w/a PT to have his neck looked at. That might be what caused the plagio. Was it there (the "leaning") before you noticed the flatness?Good luck to you, it will be great! My daughter has less than a month left in her band and it has flown by!!! Sent from my BlackBerry® smartphone with SprintSpeedFrom: "abarrett32" <abarrett32@...>Date: Sat, 17 Apr 2010 06:38:09 -0000<Plagiocephaly >Subject: questions Ok my son went for measurements again at Hanger his measurements haven't gotten any better or any worse. So not much change has taken place with us doing repostition. I have a few questions 1.) if our insurance company approves his band he may have to wear it in summer time, Arizona is hotter than heck. What do you do in that case as far as sweating while wearing band? 2.)Another my son leans to one side more than the other preferably on the right and hes always looking up is that from his head being bigger? He has the flatness on the back of his head so the width of his head is growing outward.

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Guest guest

Having lived in the Tempe/Phoenix area for 7 years, I can totally understand. However, the headquarters of the doc band is located locally for you. We were there last April during my spring break. It was 70s to 90s while we were there and Natale wasn't used to that. She was in the last month of her band at that tiime. We visited to Y and had my kids in with other kids in a place where parents drop off kids while they work out. The director there told me that they see lots of babies dropped off with bands, but that the bands looked different than Natale's so I'm guessing that CT does a lot of business in the area.

I know that everything is air conditioned there. Definately avoid going to outdoor events and even when going in and out of buildiings, you'll need to do it quickly. Make sure to hydrate super well and take the band off periodically to wipe off any sweat after any time period outside.

I know that we sometimes had 120 degrees while I lived there so it seems absolutely difficult with a band. Maybe someone else from there has the experience that you'll need.

If the baby is young enough, wear nothing but diapers or onesies.

<a href="http://www.baby-gaga.com/"><img src="http://tickers.baby-gaga.com/t/catcatard20070824_-8_DD+is.png" alt="baby" border="0" /></a>

<a href="http://www.baby-gaga.com/"><img src="http://tickers.baby-gaga.com/t/eleeleard20060414_-8_DS+is.png" alt="baby" border="0" /></a> questions

Ok my son went for measurements again at Hanger his measurements haven't gotten any better or any worse. So not much change has taken place with us doing repostition. I have a few questions 1.) if our insurance company approves his band he may have to wear it in summer time, Arizona is hotter than heck. What do you do in that case as far as sweating while wearing band? 2.)Another my son leans to one side more than the other preferably on the right and hes always looking up is that from his head being bigger? He has the flatness on the back of his head so the width of his head is growing outward.

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  • 10 months later...
Guest guest

I have a couple of questions for the group:

Is anyone sensitive to computers, food in cans, and have a metallic taste in mouth? For some reason in the last few months I get really sensitive around computers. I can be around one for about 15 min enough to check email or peck around on a web page but that's it. Was wondering if it had anything to do with heavy metal neurotoxins - sounds silly but just wondering? Also, I've become sensitive to food I taste that comes from a can, again, maybe the HM thing?

I go to OH tomorrow for pre-op with Dr. Feng. So exicited. Does anyone know how long it takes for some of the brain stuff to get better (mental fog, pain in head, brain lesions, tremors, seizures)?

Thanks & HUGS

From: teresa <t-jay130@...> Sent: Mon, March 7, 2011 7:18:04 PMSubject: Re: " The Doctors " mainly selling implants and sex today on their show......

Wish they'd do a program with some of you on as guests...Hearing those male doctors ooohing and aahing over the 17 minute surgery time turns my stomach.Hugs, M.

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  • 2 weeks later...
Guest guest

I don't think there is a definitive answer about how long it will take. It

depends on his growth. Sometimes when they are sick the growth is less, so you

might get lucky that way. If it seems tight or you aren't sure make an

appointment before putting it back on. I think up to a week might be fine, but

you'll just have to see.

I hope he is feeling better soon.

-christine

sydney, 5 yrs, starband grad

>

> My son has been in the helmet for almost 3 months, and we have a check up soon

but a wk ago he tested positive for RSV, and is at the end of a double ear

infection, with teething on top of it all. We have had to keep the helmet off to

monitor his temp because it keeps climbing to 103+. How many days till his

helmet won't fit correctly??? At 10 months old do you think his head could shape

back to its old way if he still sleeps on his back??? Thanks for the help..

>

> son 12 wks in hanger helmet

>

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Guest guest

Bad news he is in children's hospital with RSV, it will has been a week... We

are so close to being done or at least we were. Friday we will be in it 3

months...

Thanks

> >

> > My son has been in the helmet for almost 3 months, and we have a check up

soon but a wk ago he tested positive for RSV, and is at the end of a double ear

infection, with teething on top of it all. We have had to keep the helmet off to

monitor his temp because it keeps climbing to 103+. How many days till his

helmet won't fit correctly??? At 10 months old do you think his head could shape

back to its old way if he still sleeps on his back??? Thanks for the help..

> >

> > son 12 wks in hanger helmet

> >

>

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Guest guest

I'm so sorry your son is in the hospital with RSV. My daughter just had it last week and it was so scary, her not being able to breathe very well, using the oxygen mask and all that. I wish him a speedy recovery. While he is out of the helmet, can you prop your little one on the side with a receiving blanket rolled up like a cigar? You can adjust it, so that he is sleeping in a different position every night. I do this for my daughter, but since she has one side that is really bad, I always put her on the side that is good. I have noticed some improvement so far.

Best,

Carmen

From: "jamiewells2110@..." <jamiewells2110@...>Plagiocephaly Sent: Thu, March 24, 2011 7:39:51 PMSubject: Re: Questions

Bad news he is in children's hospital with RSV, it will has been a week... We are so close to being done or at least we were. Friday we will be in it 3 months...Thanks > >> > My son has been in the helmet for almost 3 months, and we have a check up soon but a wk ago he tested positive for RSV, and is at the end of a double ear infection, with teething on top of it all. We have had to keep the helmet off to monitor his temp because it keeps climbing to 103+. How many days till his helmet won't fit correctly??? At 10 months old do you think his head could shape back to its old way if he still sleeps on his back??? Thanks for the help..> > > > son 12 wks in hanger helmet> >>

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