HELP!!!!!

May 21, 2002

Hi Maureen,

I'm certainly no expert on all this, but maybe I can give you some clues to

get you started or until someone with more expertise steps in.

One thing I noticed was that you took blood and urine tests for heavy metal.

Many feel the best test for heavy metals is a Hair Analysis. There is another

message board called , and the Files section of this

message board is loaded with information about testing for metals, chelation

and more.

Another thing I noticed was what you called the polypeptide test. My son took

several of these, and I lost more and more confidence in them over time.

Maybe the are accurate for some, but I (and many others) have doubts about

their accuracy. For example, after being casein-free for a year, my son's

level of casomorphin had gone up. I've heard many other similar complaints

about this test. I'm not saying it is completely a waste...just use caution

and common sense in interpreting it. Maybe the best thing it to go gfcf for a

while (at least several months) and see if you get improvements. If you do

chelate, there are some doctors who feel you should be gfcf while chelating

anyway to reduce stress on the digestive system.

Lots of people do enzymes and chelate at the same time. Some people seem to

have fantastic success on enzymes. Others (this is our category, and doesn't

seem real common) have children who do poorly on enzymes and are chelating,

and maybe when these kid's guts heal, they'll then be able to tolerate

enzymes.

Your daughter has been on daily antibiotics for 8 months, so my guess would

be that she is really low on good gut bacteria and possibly has an overgrowth

of yeast and/or bad bacteria. You may want to do a stool test to check for

yeast and a bacterial overgrowth. Then you get to use all kinds of probiotics

to promote growth of good stuff and all kinds of stuff to try to get rid of

bad bacteria and yeast. Many, many find this is a continual battle. Some feel

enzymes help battle yeast by attacking the outer " shell " of the yeast and

making it susceptible to yeast treatments.

You may also want to do an urine organic acid test, which in our case has

been far more useful in checking for yeast. My son has never had yeast come

up in a stool sample, but every one of four organic acid test has shown

presence of yeast metabolites. Some feel the urine organic acid test is more

useful for checking for yeast since some yeast can burrow way down in the

intestinal walls and don't show up in stool samples. The organic acid test

also helped us a lot in pointing out bacterial metabolites and tons of other

stuff to work on.

I don't know how much help an allergist will be in the big picture. I can't

remember the specifics about this anymore, but a lot of the problems my son

had were delayed allergies which didn't show up on the types of tests (RAST

and skin prick) suggested by an allergist we used. I think there's a type of

test that does check for delayed reaction allergies, but we never did it. We

just wound up going gfcf, also no soy, corn, egg, nuts, artificial

preservatives, flavorings and colorings, then threw in teh Feingold diet (low

phenols) just for fun. (Actually, it never was fun, not a bit, but we've just

started chelating and are hoping this will help.)

Overall, I think if you read through the files sections of the

" " , " " and " GFCFKids " , I think you'll find a

lot of questions answered.

Hope this helps a little bit. And be thankful your daughter is so young. I

never figured out what was wrong with my son (my pediatricians were WORSE

than no help - they kept insisting nothing was wrong and implied I was nuts)

until he was 4 1/2 and feel like so much of his young life was wasted.

Good luck,

Debbie

May 22, 2002

Debbie-

Thanks so much for the info. The " allergist " I am going to is a DAN

doctor. I hope this helps. I have a feeling you're right about the

yeast. She has had two yeast infection in her short life.

What is your son's dx? They missed this until he was 4 1/2? Did he

have delays? This isn't your fault, you're not a dr. They really

need a better screening test. My ped missed it all too, and just said

she's fine. I don't take her there anymore. I loved this guy, too!

He was my ped when I was little.

The one urine we did was an organic acid test, so I guess this will

show the yeast.

We started GF/CF on Monday, not the others, though. (soy, corn, etc.)

Did the diet work for you? How is chelation going? How far into it

are you?

Thanks for all your help!

Maureen

> Hi Maureen,

>

> I'm certainly no expert on all this, but maybe I can give you some

clues to

> get you started or until someone with more expertise steps in.

>

> One thing I noticed was that you took blood and urine tests for

heavy metal.

> Many feel the best test for heavy metals is a Hair Analysis. There

is another

> message board called , and the Files section of

this

> message board is loaded with information about testing for metals,

chelation

> and more.

>

> Another thing I noticed was what you called the polypeptide test.

My son took

> several of these, and I lost more and more confidence in them over

time.

> Maybe the are accurate for some, but I (and many others) have

doubts about

> their accuracy. For example, after being casein-free for a year, my

son's

> level of casomorphin had gone up. I've heard many other similar

complaints

> about this test. I'm not saying it is completely a waste...just use

caution

> and common sense in interpreting it. Maybe the best thing it to go

gfcf for a

> while (at least several months) and see if you get improvements. If

you do

> chelate, there are some doctors who feel you should be gfcf while

chelating

> anyway to reduce stress on the digestive system.

>

> Lots of people do enzymes and chelate at the same time. Some people

seem to

> have fantastic success on enzymes. Others (this is our category,

and doesn't

> seem real common) have children who do poorly on enzymes and are

chelating,

> and maybe when these kid's guts heal, they'll then be able to

tolerate

> enzymes.

>

> Your daughter has been on daily antibiotics for 8 months, so my

guess would

> be that she is really low on good gut bacteria and possibly has an

overgrowth

> of yeast and/or bad bacteria. You may want to do a stool test to

check for

> yeast and a bacterial overgrowth. Then you get to use all kinds of

probiotics

> to promote growth of good stuff and all kinds of stuff to try to

get rid of

> bad bacteria and yeast. Many, many find this is a continual battle.

Some feel

> enzymes help battle yeast by attacking the outer " shell " of the

yeast and

> making it susceptible to yeast treatments.

>

> You may also want to do an urine organic acid test, which in our

case has

> been far more useful in checking for yeast. My son has never had

yeast come

> up in a stool sample, but every one of four organic acid test has

shown

> presence of yeast metabolites. Some feel the urine organic acid

test is more

> useful for checking for yeast since some yeast can burrow way down

in the

> intestinal walls and don't show up in stool samples. The organic

acid test

> also helped us a lot in pointing out bacterial metabolites and tons

of other

> stuff to work on.

>

> I don't know how much help an allergist will be in the big picture.

I can't

> remember the specifics about this anymore, but a lot of the

problems my son

> had were delayed allergies which didn't show up on the types of

tests (RAST

> and skin prick) suggested by an allergist we used. I think there's

a type of

> test that does check for delayed reaction allergies, but we never

did it. We

> just wound up going gfcf, also no soy, corn, egg, nuts, artificial

> preservatives, flavorings and colorings, then threw in teh Feingold

diet (low

> phenols) just for fun. (Actually, it never was fun, not a bit, but

we've just

> started chelating and are hoping this will help.)

>

> Overall, I think if you read through the files sections of the

> " " , " " and " GFCFKids " , I think you'll

find a

> lot of questions answered.

>

> Hope this helps a little bit. And be thankful your daughter is so

young. I

> never figured out what was wrong with my son (my pediatricians were

WORSE

> than no help - they kept insisting nothing was wrong and implied I

was nuts)

> until he was 4 1/2 and feel like so much of his young life was

wasted.

>

> Good luck,

> Debbie

May 22, 2002

>> I guess my question is what have you guys

> done first? GF/CF(enzymes), or chelation? (assuming they find

metal)

> This is all so overwhelming and confusing. Can you do enzymes and

> chelation at the same time?

I do enzymes and chelation together, but you need to begin with one or

the other. Personally I would begin with diet and/or enzymes, because

chelation is very hard on the body, so it is best to have other " gut

issues " under control, or at least as under control as you can get

them, before moving metals around.

http://www.autismchannel.net/dana/chelate.htm

> Her " symptoms " are:

> hand flapping when over stimulated

> cognitive delay

> language delay

> occasional poor eye contact (has gotten alot better)

> kidney reflux (has been on daily antibiotic for 8 months)

Chelation, especially with DMSA, is hard on the kidneys. You would

want to discuss with your child's doctor, the proposed chelation

protocol and testing and any other concerns you might have.

Dana

May 22, 2002

Dana-

Thanks for the info about the kidneys. I had no idea. I'll be sure

to bring this up.

I started GF/CF on Monday, and ordered enzymes yesterday.

Thanks!

Maureen

> >> I guess my question is what have you guys

> > done first? GF/CF(enzymes), or chelation? (assuming they find

> metal)

> > This is all so overwhelming and confusing. Can you do enzymes

and

> > chelation at the same time?

>

> I do enzymes and chelation together, but you need to begin with one

or

> the other. Personally I would begin with diet and/or enzymes,

because

> chelation is very hard on the body, so it is best to have

other " gut

> issues " under control, or at least as under control as you can get

> them, before moving metals around.

>

> http://www.autismchannel.net/dana/chelate.htm

>

> > Her " symptoms " are:

> > hand flapping when over stimulated

> > cognitive delay

> > language delay

> > occasional poor eye contact (has gotten alot better)

> > kidney reflux (has been on daily antibiotic for 8 months)

>

> Chelation, especially with DMSA, is hard on the kidneys. You would

> want to discuss with your child's doctor, the proposed chelation

> protocol and testing and any other concerns you might have.

>

> Dana

August 7, 2003

In a message dated 8/7/03 10:38:20 AM Pacific Daylight Time,

lwmikesch@... writes:

> Hi,

> I'm looking for suggestions from all you wonderful people. We have not

> seen

> Dr. Goldberg yet but I need help now. My son is 7 years old. He

> speaks

> and talks in whole sentences and tells you what he wants, but does not have

> conversations like other children his age do. My problem is: when

> becomes upset and agitated, he cries continually and he can't and/or won't

> tell me what is bothering him. I don't know how to help him. I can't calm

> him

> down and my nerves are shot. He recently went on medication to prevent

> seizures. He had a seizure in the begiinning of July and an EEG showed that

> he had spiking in his brain. Does anyone have a child that sounds like

> ?

Hi ,

This is the closest description of my son I have ever heard. He is 6 and

names everything, speaks in simple sentences, but cannot hold " normal "

conversation with others. He also will start crying/screaming and cannot stop to

tell us

what is going on. It is very sad and frustrating. He has abnormal EEG

results and is on Depakene for this. Our pediatrician just feels he is delayed

and

there is nothing in the world we can do to change this. So, we have seen a

DAN doctor but we are not feeling like this is the right route. I believe

strongly in the protocol but cannot find anyone nearby to support this. We

absolutely cannot afford to go to CA. to see Dr. Goldberg.

It's nice to from others with similar situations. Keep us posted!

August 7, 2003

Hi ,

All of us here can sympathize with your situation. I can imagine how frustrated

you must be, too, having to wait until Dr. Goldberg starts seeing new patients

again. I don't know if my ideas will help, but hopefully someone here may have

an idea that you can use to good effect.

Have you read " Do's and Don't's of the Diet " at www.nids.net? I recommend

reading it and putting the diet into action as soon as possible, if you haven't

already. It might help with the episodes of agitation and crying. Sometimes a

particular food can be causing behavior problems. Once your son has been on the

diet awhile, you'll start to be able to tell if a food is creating havoc in his

system.

Is your son getting any kind of behavior intervention or social skills help?

That has helped my son. When he's upset, we've taught him to take several deep,

slow breaths and count to 5 (he still needs prompting to do this). Then he

seems to be able to access the words he needs to tell us what's wrong.

When all else fails, when he's screaming and crying, perhaps the best thing to

do is leave the room (or put him in his room) until he calms down. It might

help your nerves, and he will eventually get control of himself. Obviously,

you can't do this when you're out in public, but it's another thing that has

worked when my son is is that state.

Good luck!

Donna

Mommy to , 5.5, HFA

HELP!!!!!

Hi,

I'm looking for suggestions from all you wonderful people. We have not

seen

Dr. Goldberg yet but I need help now. My son is 7 years old. He speaks

and talks in whole sentences and tells you what he wants, but does not have

conversations like other children his age do. My problem is: when

becomes upset and agitated, he cries continually and he can't and/or won't

tell me what is bothering him. I don't know how to help him. I can't calm

him

down and my nerves are shot. He recently went on medication to prevent

seizures. He had a seizure in the begiinning of July and an EEG showed that

he had spiking in his brain. Does anyone have a child that sounds like

? My pediatrician is very uncooperative and unsupportive of Dr.

Goldberg.

_______________________________

``````````````````````````````

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

--------------------------------------

August 7, 2003

,

Can he write yet? Maybe that would help.

Your description of your child reminds me a lot of my son a few years ago

(prior to getting going with Dr. Goldberg).

He used to have screaming " fits " and we would try to talk to him about why

he was upset and he would just keep screaming. One day I just couldn't

stand the screaming anymore and I put him in his room. Then I thought " What

do I do now? " . It occurred to me to write him a letter, so I wrote a letter

(saying pretty much what I had been trying to tell him verbally). I slid it

under his door, and he read it and immediately stopped crying. Then he

wanted to write me a letter!

From then on, for a long time, when he became upset, he would cry " Write me

a letter! " . We would slide letters back and forth under his door until the

problem was resolved. It was a great relief to both of us.

I believe now that when he became upset, my son couldn't really comprehend

what I was saying or verbalize his own feelings, but could understand what

he was reading and writing. The reading ability was a great gift... it

allowed us to communicate at a level beyond what we had been doing. By the

way, I think some kids have accomplished much of the same thing using sign

language.

Since starting with Dr. Goldberg, my son's verbal skills have come in really

well. It really hit me about two days ago when he got upset about something

and he gave me an elaborate speech about his feelings, and what he would

like to see change that would make him happy. I can't believe how far he

has come. When he gets upset now, he is very capable of expressing himself

and negotiating a solution to his problem. There is so much hope for these

kids!

We met a new little boy recently who is severely affected (he has no

language)... diagnosed with autism. My husband watched him and after a

while he turned to me and said " All I see when I look at him is potential. "

Hang in there. There is so much hope.

Caroline

P.S.

You might want to call all pediatricians in your area and see if you can

find one who has a child going to Dr. G. It really helps to have a

pediatrician who is on board when you start the protocol. Maybe your doc

could even talk to that doc and get a professional viewpoint that would help

him change his attitude.

> On 8/7/03 11:08 AM, " lwmikesch@... " <lwmikesch@...> wrote:

> Hi,

> I'm looking for suggestions from all you wonderful people. We have not

> seen

> Dr. Goldberg yet but I need help now. My son is 7 years old. He speaks

> and talks in whole sentences and tells you what he wants, but does not have

> conversations like other children his age do. My problem is: when

> becomes upset and agitated, he cries continually and he can't and/or won't

> tell me what is bothering him. I don't know how to help him. I can't calm

> him

> down and my nerves are shot. He recently went on medication to prevent

> seizures. He had a seizure in the begiinning of July and an EEG showed that

> he had spiking in his brain. Does anyone have a child that sounds like

> ? My pediatrician is very uncooperative and unsupportive of Dr.

> Goldberg.

>

August 8, 2003

I just wanted you to know that we were also having the

problems you describe until about 6 months ago. My

son was only 2 and 3 during this time, but it is still

similar.

I will list a few things I know directly contributed

to this problem - besides the obvious difficulty in

comprehending and communicating problems - that does

improve as health issues get worked out. But here are

a few things you could possibly do that could help:

Keep a diet log. Look out for foods that contain malt

(malted barely flour, but more so malt flavoring) and

watch for increases in aggressive behavior. Malt

triggers a wild anxiety in my son after 'building up',

for example, Kellogg's Corn Flakes, but I switched to

a health food store brand (too expensive, yes, but

worth the difference) and he improved a lot. He has

been off dairy for a long time - if your son is not,

that is something to do immediately. For us, soy

protein and soy lecithen are the very worst. My son

would get crazed, with a wild far-away look in his

eyes, and he would 'go off' repeatedly with no rhym or

reason. It took about 2 weeks on a food w/soy (like

soy milk, rice cakes that had soy lecithen in them) in

it before I would realize something was horribly

wrong, and it would

take 2 or 3 days of it staying out of his system to

begin seeing improvement. Soy made his seem almost

psychotic at times. It can be hard to believe that a

food can do this to a child, but I have witnessed it

myself several times, and it is often the first place

I start looking when things 'go wrong'.

Another thing you can try is a round of antibiotics,

something like Eurythromycin or Cefzil to see if there

is any kind of improvement. My son's anxiety levels

would peak pretty badly and I later found out he would

have strep without any obvious symptoms. I started

connecting some of his worse anxiety and

obsessive/repetitive behavior with this, and started

taking him for strep tests when it got bad. The

doctor would resist the test saying there was nothing

indicating strep, but I would insist and it would come

back positive. Antibiotics would bring immediate

improvement. Sometimes, after being off them a month

and still no sign of illness, he would regress

behaviorally, and a couple of times we restarted the

antibiotics and he would once again stun me with the

changes - back to a bright happy affectionate calm

little boy that I had forgotten existed.

Other changes we have had to make were in our own

behaviors around him. Dealing with our children is so

very stressful and depressing that we have to work

very hard at our attitudes. If I have a negative or

depressed tone, my son reacts. If I get angry and

show it in my voice or expression, or if I withdraw

from him, he gets stressed and hostile. If I correct

him repeatedly with a scolding tone, he explodes -

sometimes not right then, but later. My mother moved

in with us for a time, and I would not dare yell at my

son in front of her, and I had been so stressed before

this that I started losing my grip and yelling at him,

but when I was able to stop (having another adult

around, a little help, a little distraction did

wonders), and when I started correcting him with a

kinder and loving tone, when I stopped having that

wild stressed look in my eyes, his whole demeaner

improved drastically. Now instead of saying " No, or

Don't, etc as often as I was, I distract or simply

ignore as much as I can and save it for the big ones.

I try to smile and be silly as much as I can - which

of course sometimes feels downright impossible, but

with practice it gets easier. Reduce negativity,

anger, frustration as much as possible, then allow one

month for him to begin to trust that any such changes

will stick. This is not an accusation that you are

causing this - but being aware of how our tones of

voice impact them can reduce a little of their anxiety

(but what about ours?). But it's a normal reaction

that is hard to change, but it feels much better day

by day when we are able to move away from it and " act "

our way to more positive interaction - hard to do when

it feels like there is a monster in the house. But he

just can't help it right now. They are so VERY VERY

sensitive to the slightest upset in tone of voice that

it is just unbearable to them and really builds the

anxiety and frustration.

Of course it would be great if you could get

antivirals and antifungals too, but you can see

tremendous progress without these, too. Dr. Goldberg

says when you can't get these meds, that you will be

doing a lot of good simply with diet control (follow

his do's and don'ts of diets), allergy control if

present, and a very low dose of an SSRI (not the doses

you would generally be prescribed), and aggressive

treatment of illness.

Hang in there, take a deep breath, and commit to

taking good notes about the diet, challenges faced

each day, and other suspected triggers. BELIEVE that

you can make improvements and it will give you some

strength to make it through the next month while you

look for them. You will almost certainly find

something that will help him and give you guidance

from there.

Hope this helps a little.

--- PKUTRIO@... wrote:

> In a message dated 8/7/03 10:38:20 AM Pacific

> Daylight Time,

> lwmikesch@... writes:

>

> > Hi,

> > I'm looking for suggestions from all you

> wonderful people. We have not

> > seen

> > Dr. Goldberg yet but I need help now. My son

> is 7 years old. He

> > speaks

> > and talks in whole sentences and tells you what he

> wants, but does not have

> > conversations like other children his age do. My

> problem is: when

> > becomes upset and agitated, he cries continually

> and he can't and/or won't

> > tell me what is bothering him. I don't know how

> to help him. I can't calm

> > him

> > down and my nerves are shot. He recently went on

> medication to prevent

> > seizures. He had a seizure in the begiinning of

> July and an EEG showed that

> > he had spiking in his brain. Does anyone have a

> child that sounds like

> > ?

>

> Hi ,

> This is the closest description of my son I have

> ever heard. He is 6 and

> names everything, speaks in simple sentences, but

> cannot hold " normal "

> conversation with others. He also will start

> crying/screaming and cannot stop to tell us

> what is going on. It is very sad and frustrating.

> He has abnormal EEG

> results and is on Depakene for this. Our

> pediatrician just feels he is delayed and

> there is nothing in the world we can do to change

> this. So, we have seen a

> DAN doctor but we are not feeling like this is the

> right route. I believe

> strongly in the protocol but cannot find anyone

> nearby to support this. We

> absolutely cannot afford to go to CA. to see Dr.

> Goldberg.

> It's nice to from others with similar situations.

> Keep us posted!

>

_______________________________

``````````````````````````````

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

--------------------------------------

December 1, 2003

HEY GIRLS! YOU MAY REMEMBER ME, MY NAME IS DIANA DICKIESON, IAM FROM CANADA....i was explanted this summer, i had a lot of crazy symptoms that all disappeared....BUT, i did have the chills, kind of like having the flu, that has for some strange reason has come back, only at night though, i know that is when your body rids it self of toxins, maybe, there is still stuff that is coming out? does any one have this symptom???? please write back....diana

Protect your PC - Click here for McAfee.com VirusScan Online

December 1, 2003

: I have the same symptom and my GYN seems to think it is peri-menopause, could be, I'm 40. Small doses of estrogen cream have really helped me with the night sweats. Check it out.

Vickie

>From: "diana dickieson"

>Reply- > >Subject: HELP!!!!! >Date: Sun, 30 Nov 2003 19:59:33 -0800 > Share holiday photos without swamping your Inbox. Get MSN Extra Storage now!

HEY GIRLS! YOU MAY REMEMBER ME, MY NAME IS DIANA DICKIESON, IAM FROM CANADA....i was explanted this summer, i had a lot of crazy symptoms that all disappeared....BUT, i did have the chills, kind of like having the flu, that has for some strange reason has come back, only at night though, i know that is when your body rids it self of toxins, maybe, there is still stuff that is coming out? does any one have this symptom???? please write back....diana

Protect your PC - Click here for McAfee.com VirusScan Online

December 1, 2003

Hi ! I was explanted in August, and I have weird night chills sometimes too. Mine are like a weird tingle up my spine and down my arms accompanied by chills like I have fever. I don't know what it is though. I've asked my doctor and he was pretty clueless. Hopefully it's something that will go away as out bodies heal.

- Colleen

From: " diana dickieson " <scissorstar@...>

Reply-

Date: Sun, 30 Nov 2003 19:59:33 -0800

Subject: HELP!!!!!

HEY GIRLS! YOU MAY REMEMBER ME, MY NAME IS DIANA DICKIESON, IAM FROM CANADA....i was explanted this summer, i had a lot of crazy symptoms that all disappeared....BUT, i did have the chills, kind of like having the flu, that has for some strange reason has come back, only at night though, i know that is when your body rids it self of toxins, maybe, there is still stuff that is coming out? does any one have this symptom???? please write back....diana

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October 5, 2008

I too use s and s to clean the helmet following with

rubbing alcohol. His orthotist actually gave us intructions to CLEAN

WITH BABY shampoo and follow with alcohol. I guess it could be that he

got hot, but...I mean that is pretty much unpreventable! I just think

it's odd this happened two weeks into the band and these boils are ALL

over his entire head. The on call person at Hanger said to leave the

helmet off till I get in for the next available appointment. I was just

wondering if anyone else had dealt with this crazy stuff. I feel so bad

cause he keeps rubbing his head and whining and he is always the best

baby.

October 6, 2008

I think a lot of orthos have their own rules for cleaning bands and

there seems to be a lot of variety. However the manufacturers of

hanger and starbands recommend using only alcohol. I think that is the

safest way to go. I see a lot of posts on here that people have

success with their method (usually shampoo or something) but you never

know if you run into a problem was it something you cleaned it with

etc. With alcohol it evaporates very quickly and doesn't leave a residue.

we used only alcohol, and at times it was a bit stinky, but we didn't

have problems. I know people who use shampoo etc may say they didn't

have problems either (at least most of them). My daughter had

sensitive skin, and even before her band J & J was too drying.

-christine

sydney 2.5 yrs starband grad

>

> I am SHOCKED that the ortho told you to clean with J & J in the band -

that's totally against protocal!? The shampoo can get in the foam and

stay there then leaching out to the babies skin.? Industry standards

are that ti ONLY e cleaned with rubbing alchohol... and that 91% is best.

> Reconfirm those instructions... We had a hanger and the sheet they

gave us clearly says to only clean with alcohol.?

> Of course, Hanger can be lacking in the consistancy dept... maybe

the ortho didn't know better?

>

> ?Jen and Luli - 2.5 years old

> Left tort - Right Plagio - Hanger Band Grad - CA

> http://www.babiesonline.com/babies/j/jens5th/

>

> Re: Help!!!!!

>

> I too use s and s to clean the helmet following with

> rubbing alcohol. His orthotist actually gave us intructions to CLEAN

> WITH BABY shampoo and follow with alcohol. I guess it could be that he

> got hot, but...I mean that is pretty much unpreventable! I just think

> it's odd this happened two weeks into the band and these boils are ALL

> over his entire head. The on call person at Hanger said to leave the

> helmet off till I get in for the next available appointment. I was just

> wondering if anyone else had dealt with this crazy stuff. I feel so bad

> cause he keeps rubbing his head and whining and he is always the best

> baby.

>

October 6, 2008

Regarding the use of soap and water on our sons helmet, we were told to do this by our ortho, and were given a print out directly from hanger. which said to wash helmet with soap and water and rinse well and to make sure helmet is fully dried before putting it back on. Apparently this is the only way to get helmet really clean and stop it from smelling. I spoke to our ortho this morning and she assured me that this is the latest updated info from hanger. We mostly use alcohol but once every couple of days use the soap and water to get helmet really clean. From: Jen <JenandLuli@...>Subject: Re: Help!!!!!To:

Plagiocephaly Date: Monday, October 6, 2008, 6:12 AM

I am SHOCKED that the ortho told you to clean with J & J in the band - that's totally against protocal! The shampoo can get in the foam and stay there then leaching out to the babies skin. Industry standards are that ti ONLY e cleaned with rubbing alchohol... and that 91% is best.

Reconfirm those instructions. .. We had a hanger and the sheet they gave us clearly says to only clean with alcohol.

Of course, Hanger can be lacking in the consistancy dept... maybe the ortho didn't know better?

Jen and Luli - 2.5 years old

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babieson line.com/ babies/j/ jens5th/

Re: Help!!!!!