Mouth Sores

[Guest guest]

,

Amy from Fresno here. I had a strange thing happen to me this week. I had

horrible pain in my tongue. It was swelling and everything I ate or drank made

it hurt. Well, I thought that maybe it was thursh, as I get this once in a

while. Nope! I had a strep infection in my mouth. All over my tongue and the

roof of my mouth. Nothing down my throat. Isn't that nuts?

Amy Deel

[Guest guest]

Note: forwarded message attached.

[Guest guest]

Nothing came through--- is someone having trouble with mouth sores? If you

go to www.shwachmandiamondamerica.org

<http://www.shwachmandiamondamerica.org/> and click on " community " we have

a general SDS forum and a neutropenia forum. I know for sure we have mouth

sore information under the neutropenia forum and possibly in the general

forum.. Recipes and remedies, etc..

Since I can only see the subject line, I have no idea what the message is

completely about.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

Sue Petrelli

Sent: Tuesday, June 06, 2006 2:12 PM

Pedpid

Subject: Fwd: mouth sores

Note: forwarded message attached.

[Guest guest]

Thanks, . Would you mind putting your mouth sore tip on the message

board? Folks are always looking for practical tips from people who have

experienced it. KWIM?

Hang in there.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

osdbmom

Sent: Tuesday, June 06, 2006 9:42 PM

Subject: mouth sores

Pattie,

It wasnt me who posted that, but it did catch my attention. This is

something I have struggled with for YEARS............and yes, I always

just thought I was " prone " or whatever. So I went to your site and

read that article, and interestingly enough, immunodeficiency is

listed as a possible cause.

I think its funny, b/c almost every thing that has gone wrong with me

in the last few yrs, excepting the heart defect, has been possibly

caused by immunodeficiency, I have 3 kids with it, and yet

every.single.test. is coming back FINE. Its driving me nuts.

BTW--I put peroxide on a q tip on the mouth sores and it helps shorten

the duration.

Valarie

[Guest guest]

LOL you crack me up.

http://www.shwachmandiamondamerica.org/phpBB2/index.php

Put it under the neutropenia forum-even under the mouth sores thread.

Get some rest.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

osdbmom

Sent: Tuesday, June 06, 2006 10:29 PM

Subject: mouth sores

Sorry, Pattie, I just spent all day at school for field day, doing the

hockey stick potato race, of all things, and apparantly actually

performing this event, along with 89 degree heat, has lessened my

comprehension abilities.

Message board? here? or on your SDS site? and how to go about it?

I know, I know, FLAKE-O-RAMA.

but in my own defense, me soooo seeepy, as Brennan would say.

valarie

[Guest guest]

Hi,

If you can get hold of fluoride from a dentist, and use it to rinse your mouth

it is very healing, just don't swallow. I used it for my teeth and noticed if I

have any kind of sore etc in my mouth it healed it very quickly.

Jeanette

[ ] mouth sores

Hi everybody,

Thank you all for the very helpful advice so far.Betsy i wish the best

for you and your daughter,i hope she will be ok soon.

One question:is there anything to heal mouth sores,right now i can

barely open my mouth it hurts a lot.Thank you....

[Guest guest]

Is it a growth or a mouth sore? had to have a growth removed because

it would not stop bleeding. An oral surgeon did it.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

osdbmom

Sent: Saturday, June 17, 2006 10:58 AM

Subject: mouth sores

so what do you do when they rupture and bleed?

Valarie

[Guest guest]

Valarie,

I don't have any curative answers for you.

My daughter had some mouth sores last month. They lingered for 2-3 weeks.

When I finally got her bloodwork done, I noticed that she had low WBCs,

borderline neutropenia, and had 0.0 monocytes <gasp>. Now that her numbers have

returned to " her " normal range, her cheeks are clear -- no more pain. If you

are on IVIG (I can't remember if you are getting treated), you may want to see

how your bloodwork matches up with your symptoms.

During her episode, I read about different organisms such as viruses that can

live in our bodies and rear their head now and then. I hope yours go away soon.

But, obviously, if they continue your doc might have something to say or do

about this...

mom CVIDer

[Guest guest]

My 4 year old has mouth sores all the time - on the sides of his mouth, inside

his lip, on his tongue. They sometimes were taking up to 3 months to heal.

We've been told they are part of his immune system problem and it seems that he

has a flare up of more than 15 sores whenever his body is fighting a viral

infection. Some days are so bad that all of his food has to be cut up into tiny

tiny pieces - even biting off a piece of banana hurts his mouth.

Two things that I know of that do help:

- avoid foods that will irritate the sores - salt, vinegar, tomato, fruits

with acid, citrus.... things like ketchup (very hard to do when you are 4),

apple juice, apple sauce, pickles, chips, oranges, etc. Even mouthwash can

irritate the sores.

- avoid foods that are hard and crunchy - like taco shells, chips,

crackers,etc. These can break the mouth sore skin and make it worse and longer

to heal.

He now uses a hydrocortisone paste and we put this paste directly into his

mouth on the sores with a q-tip 2 - 3 times a day. We tried other meds but they

had a numbing agent and that made him crazy. And we tried prednisone but that

didn't help either. The cortisone seems to help them heal within about a week.

I am very happy with it. Let me know if you need more information about it - it

is something that Sick Kids whipped together for us - not an off-the-shelf kind

of thing.

osdbmom <osdbmom@...> wrote:

.

Kim - Mom of , age 4 (Combined B and T Cell Disorder)

[Guest guest]

Hi Kim-

Can you please give me more info on the cortisone mixture you are using for

your

little guys mouth sores- my 14 year old daughter still suffers all the time

with these

and I would like to try what you are using-

thanks

Sue Petrelli

Mom to 14 yr old (CVID)

Kim MacEachern <kimmaceachern@...> wrote:

My 4 year old has mouth sores all the time - on the sides of his

mouth, inside his lip, on blem and it seems that he has a flare up of more than

15 sores whenever his body is fighting a viral infection. .

osdbmom <osdbmom@...> wrote:

..

Kim - Mom of , age 4 (Combined B and T Cell Disorder)

[Guest guest]

Sure Sue

The label says " 1 % Hydrocortisone Pwd (powder) in Orabase Gel 60 GM Mix " .

We got it from Dermatology after they consulted with Dentistry about the best

way to handle his sores. I hope this helps your daughter.

It has the consistency of peanut butter and is sort of brown in color. But it

sure has helped us over the last year.

Sue Petrelli <rsknp@...> wrote:

Hi Kim-

Can you please give me more info on the cortisone mixture you are using for your

little guys mouth sores- my 14 year old daughter still suffers all the time with

these

and I would like to try what you are using-

thanks

Sue Petrelli

Mom to 14 yr old (CVID)

Kim MacEachern <kimmaceachern@...> wrote:

My 4 year old has mouth sores all the time - on the sides of his mouth, inside

his lip, on blem and it seems that he has a flare up of more than 15 sores

whenever his body is fighting a viral infection. .

osdbmom <osdbmom@...> wrote:

..

Kim - Mom of , age 4 (Combined B and T Cell Disorder)

[Guest guest]

thanks Kim-

I work at a Derm Pracitce on Saturdays so I will run this by one of the docs

thanks

Sue

Kim MacEachern <kimmaceachern@...> wrote:

Sure Sue

The label says " 1 % Hydrocortisone Pwd (powder) in Orabase Gel 60 GM Mix " . We

got it from Dermatology after they consulted with Dentistry about the best way

to handle his sores. I hope this helps your daughter.

It has the consistency of peanut butter and is sort of brown in color. But it

sure has helped us over the last year.

Sue Petrelli <rsknp@...> wrote:

Hi Kim-

Can you please give me more info on the cortisone mixture you are using for your

little guys mouth sores- my 14 year old daughter still suffers all the time with

these

and I would like to try what you are using-

thanks

Sue Petrelli

Mom to 14 yr old (CVID)

Kim MacEachern <kimmaceachern@...> wrote:

My 4 year old has mouth sores all the time - on the sides of his mouth, inside

his lip, on blem and it seems that he has a flare up of more than 15 sores

whenever his body is fighting a viral infection. .

osdbmom <osdbmom@...> wrote:

..

Kim - Mom of , age 4 (Combined B and T Cell Disorder)

[Guest guest]

Valarie-

No no diagnosis yet, in fact I have not really been going to the doctor....I

am there so much with Gwynn that I would almost rather shoot myself then go for

myself. I have alot of those things....very occasional migraines, I am tired

all the time, developed asthma last year, frequent bronchitis, sinus infections,

had my gall bladder out, reflux,mouth sores, pain that I was assuming is a cyst

(ovarian), and various other strange things. I have only gone occasionally to

the doc....could have been hospitilized many times for the asthma as sometimes I

use an inhaler in 2 weeks....but I am stubborn.

Gwynn's immuno said at one point that I should be tested for an immune

deficiency....there are some things in my med history that he said are suspect

but I haven't yet...partly because I don't want to admit that it was my faulty

genetics that are causing my precious daughter so much misery.

I am starting to consider it now though.

~~

osdbmom <osdbmom@...> wrote:

,

Yes, I just found out I have asthma one year ago, at age 30.

Do YOU know what is wrong with you yet?

This is what is going on with me....

chronic fatigue, super high IGE(allergies), asthma, recurrent

bronchitis, sinus infections, yeast infections(oral and the other),

heart valve prolapse, interstitial cystitis(bladder disease), restless

legs syndrome, have had my gall bladder out, something is wrong with

my stomach in that if I eat the " wrong food " (basically, anything not

rice, cereal, ice cream, or yogurt), my left side contracts in labor

like pain and lasts forever, BM problems, reflux, vomiting for no

reason, dry heaves for no reason, blurred vision, and I THINK thats it

LOl

No, wait, also, migraines.

Do you have similar problems, and do you have a dx yet?

Valarie

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

& ,

I would suggest you get tested. I have had similar medical issues,

and finally the nurses at UCLA where my 10 year old gets his

infusions convinced me (along with being on antibiotics for over 6

months with no effect) to get tested. I went through testing, and

was diagnosed with CVID just like my son. I have now had 5

infusions and have been infection free since then.

Feel free to email me if you have any questions as to what I went

through or just want to talk. You will be in my thoughts.

>

> ,

> Yes, I just found out I have asthma one year ago, at age 30.

>

> Do YOU know what is wrong with you yet?

>

> This is what is going on with me....

> chronic fatigue, super high IGE(allergies), asthma, recurrent

> bronchitis, sinus infections, yeast infections(oral and the other),

> heart valve prolapse, interstitial cystitis(bladder disease),

restless

> legs syndrome, have had my gall bladder out, something is wrong

with

> my stomach in that if I eat the " wrong food " (basically, anything

not

> rice, cereal, ice cream, or yogurt), my left side contracts in

labor

> like pain and lasts forever, BM problems, reflux, vomiting for no

> reason, dry heaves for no reason, blurred vision, and I THINK

thats it

> LOl

> No, wait, also, migraines.

>

> Do you have similar problems, and do you have a dx yet?

>

> Valarie

>

[Guest guest]

I am currently fascinated by this topic. has had periodic mouth sores.

I'm now realizing that they seem to coincide with illnesses. Most recently,

she developed two with her cold, cough and now sinus symptoms. We've never

checked bloodwork when she's had them, so I don't know if they tie in to WBC or

neutropenia or anything. Would be interesting to know.

Her dentist had a funny comment about mouth sores. There is a school of

thought that you should avoid the toothpaste additive Sodium Lauryl Sulfate.

Some

studies have implicated it as being a cause of mouth sores. But when I asked

's pediatric dentist about this, he said, " Well, if your toothpaste has SLS

your canker sores will clear up in about 14 days. If you AVOID SLS, your

canker sores will clear up in about TWO... weeks. " I thought that was pretty

funny. So he obviously felt there was no need to go out and dig up some

specialty

toothpaste. Sure wouldn't hurt to try though, if it's a big problem.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

When is fighting a virus he gets mouth sores and his liver shuts down

and his stools are white. No on (I mean doctors) ever believes me about the

correlation - but being the mom and all I register these things. I'm sure they

are tied to something - but like I said - no one ever thinks of running any

testing to figure out what or why.

I have never heard of any relationship to toothpaste, but someone did tell me

to watch s nitrite intake (hotdogs, processed meat, etc.) that there may

be a relationship there to mouth sores. Whatever works.

So on a different note - we are heading to the hospital for another pneumonia

in the morning. Biaxin just isn't working on his Lower Right Lung (I knew that

- but again, I'm just the mom). So there we are - AGAIN.

bunneegirl@... wrote:

I am currently fascinated by this topic. has had periodic mouth

sores.

I'm now realizing that they seem to coincide with illnesses. Most recently,

she developed two with her cold, cough and now sinus symptoms. We've never

checked bloodwork when she's had them, so I don't know if they tie in to WBC or

neutropenia or anything. Would be interesting to know.

Her dentist had a funny comment about mouth sores. There is a school of

thought that you should avoid the toothpaste additive Sodium Lauryl Sulfate.

Some

studies have implicated it as being a cause of mouth sores. But when I asked

's pediatric dentist about this, he said, " Well, if your toothpaste has SLS

your canker sores will clear up in about 14 days. If you AVOID SLS, your

canker sores will clear up in about TWO... weeks. " I thought that was pretty

funny. So he obviously felt there was no need to go out and dig up some

specialty

toothpaste. Sure wouldn't hurt to try though, if it's a big problem.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

When is fighting a virus he gets mouth sores and his liver shuts down

and his stools are white. No on (I mean doctors) ever believes me about the

correlation - but being the mom and all I register these things. I'm sure they

are tied to something - but like I said - no one ever thinks of running any

testing to figure out what or why.

I have never heard of any relationship to toothpaste, but someone did tell me

to watch s nitrite intake (hotdogs, processed meat, etc.) that there may

be a relationship there to mouth sores. Whatever works.

So on a different note - we are heading to the hospital for another pneumonia

in the morning. Biaxin just isn't working on his Lower Right Lung (I knew that

- but again, I'm just the mom). So there we are - AGAIN.

bunneegirl@... wrote:

I am currently fascinated by this topic. has had periodic mouth

sores.

I'm now realizing that they seem to coincide with illnesses. Most recently,

she developed two with her cold, cough and now sinus symptoms. We've never

checked bloodwork when she's had them, so I don't know if they tie in to WBC or

neutropenia or anything. Would be interesting to know.

Her dentist had a funny comment about mouth sores. There is a school of

thought that you should avoid the toothpaste additive Sodium Lauryl Sulfate.

Some

studies have implicated it as being a cause of mouth sores. But when I asked

's pediatric dentist about this, he said, " Well, if your toothpaste has SLS

your canker sores will clear up in about 14 days. If you AVOID SLS, your

canker sores will clear up in about TWO... weeks. " I thought that was pretty

funny. So he obviously felt there was no need to go out and dig up some

specialty

toothpaste. Sure wouldn't hurt to try though, if it's a big problem.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

I found this SO interesting! " When is fighting a virus he

gets mouth sores and his liver shuts down and his stools are

white. " ....

With Cole's gut issues he is prone to the loose bowels, but I can

always tell when he is truly sick because the color turns white. He

also gets the mouth sores. I have also noticed it with his younger

brother, whom I have not had tested yet for PID.

Is the liver shutting down what causes the stools to be white?

Thought I just had some strange kids!!! Glad to know it is something

that happens to others.

-Rogena (Mom to 4 boys, including Cole -Partial Selective IgA Def,

GERD, possible Celiac)

[Guest guest]

I have had canker sores in my mouth and use a special toothpaste that keeps

me from getting them. It's rembrandt (specially formatted for canker sore

sufferers).

I wanted to mention though, that Tim had blood blisters in his mouth

whenever his platelet count dropped. Just a thought.

Pam

Tim CVID//ITP

[Guest guest]

In a message dated 7/26/2006 9:02:38 AM Central Standard Time,

kimmaceachern@... writes:

> By the way, we are on our second round of swimmers ear.... nothing seems to

> be working,

Kim:

I got swimmers ear as a kid, but it stopped when my mom started pouring

rubbing alcohol in my ear after swimming. Do NOT do this with ear tubes or with

active swimmers ear infection!!!

I got into that habit and actually poured 1/2 a cap in each ear after my

morning shower from childhood until about age 25!!! Just a habit but ear doc

said

my ears were super clean.

I read on the net a suggestion that you use 1/2 rubbing (isopropyl) 1/2

vinegar (I assume white) to prevent swimmers ear.

After got it SO bad last year I bought a little squirty bottle of stuff

to prevent swimmers ear, but it was just an expensive little thing of cheap

ole alcohol. But it's refillable (not really meant to be, just possible), so I

just popped off the top when it was empty and re-filled with alcohol. No more

swimmers ear since.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

Lily has occasionally had mouth sores at other times of the month;

her dentist has noted it. Which is validating, since her regular ped

(not the

rheumatologist) never sees anything (in her mouth) when I take her in

during a

regular episode; the mouth sores aren't that big of a symptom for

her, so I really had to push with

them to get a rx for prednisolone to try, b/c they were so stuck on

her " missing " that one symptom.

(Lily, 6) Seattle

On Aug 17, 2006, at 7:27 PM, prestonpatti wrote:

> I am just curious, has other kids ever ended up with mouth sores which

> started about a week after an episode of fever? Or do most typically

> get the mouth sores during the episode. Brady has been fevering for

> about 5 years, and really has not dealt much with the mouth sores. He

> always gets the leg aches, and horrible throat, high fevers, but

> really

> not the sores. Well this time, he ended up getting the sores in his

> mouth and his bottom about a week after the fever was done. Seems

> to be

> something new, so just curious what other people see with the mouth

> sores.

>

> Thank you,

>

> Patti mother of Brady 7

>

>

>

d Timblin

mdefaye@...

[Guest guest]

HI

I get mouth sores a lot.

Amosan is good to rinse your mouth with.

There is a prescription paste to pat on your tongue that eases

the pain and is supposed to help heal them. I have to go and look at it

to give you the name,,I'll

send it to you later. Your Dr should know about it.

Elaine

>

> Has anyone ever been given anything (meds or otherwise) that helps

> prevent the mouth

> ulcers? My son Chance gets them terribly right before the fever

> period. Sometimes to the

> point that he won't eat and is very picky about what he eats. Lately

> he has been getting them

> on his tongue as well which affects his speech. He normally has 1 or

> two small ones

> throughout the month, but during the time right before he fevers they

> become very large and

> painful & his mouth and lips swell. Any suggestions would be great!

>

>

> mom to Chance 11

>

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.432 / Virus Database: 268.16.12/631 - Release Date: 1/16/2007

8:25 AM

>

[Guest guest]

Hi ,

My sons infectious disease specialist prescribed acyolovir-oral for Jaeden.

It seemed to spead the healing.

Diane

Mother to Jaeden-5

Elaine <ElaineFASDMom@...> wrote:

HI

I get mouth sores a lot.

Amosan is good to rinse your mouth with.

There is a prescription paste to pat on your tongue that eases

the pain and is supposed to help heal them. I have to go and look at it

to give you the name,,I'll

send it to you later. Your Dr should know about it.

Elaine

>

> Has anyone ever been given anything (meds or otherwise) that helps

> prevent the mouth

> ulcers? My son Chance gets them terribly right before the fever

> period. Sometimes to the

> point that he won't eat and is very picky about what he eats. Lately

> he has been getting them

> on his tongue as well which affects his speech. He normally has 1 or

> two small ones

> throughout the month, but during the time right before he fevers they

> become very large and

> painful & his mouth and lips swell. Any suggestions would be great!

>

>

> mom to Chance 11

>

>

> ----------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.432 / Virus Database: 268.16.12/631 - Release Date: 1/16/2007

8:25 AM

>

[Guest guest]

Hi, dose get the mouth sores as well as his brother Luke, we

use baby orajel to numb them so the boys can eat, i also found

orajel pm, it last longer. Luke gets them real bad but, he doesn't

have . It works real well. I apply with a q-tip. Hope this

helps.

Gretchen

>

> Has anyone ever been given anything (meds or otherwise) that helps

prevent the mouth

> ulcers? My son Chance gets them terribly right before the fever

period. Sometimes to the

> point that he won't eat and is very picky about what he eats.

Lately he has been getting them

> on his tongue as well which affects his speech. He normally has 1

or two small ones

> throughout the month, but during the time right before he fevers

they become very large and

> painful & his mouth and lips swell. Any suggestions would be

great!

>

>

> mom to Chance 11

>

[Guest guest]

Thanks! I sopke with his specialist yesterday and they perscribed a " Magic

Mouth Wash " it

is benadryl, myanta, and some kind of numbing med. They have also recommended

that I

try the pred. when they start and not wait for the fever. We are trying it so

we'll see.

,

Mom of Chance 11

> >

> > Has anyone ever been given anything (meds or otherwise) that helps

> prevent the mouth

> > ulcers? My son Chance gets them terribly right before the fever

> period. Sometimes to the

> > point that he won't eat and is very picky about what he eats.

> Lately he has been getting them

> > on his tongue as well which affects his speech. He normally has 1

> or two small ones

> > throughout the month, but during the time right before he fevers

> they become very large and

> > painful & his mouth and lips swell. Any suggestions would be

> great!

> >

> >

> > mom to Chance 11

> >

>