Re: Hidradenitis suppurativa and Down Syndrome

[Guest guest]

In a message dated 7/21/2006 4:50:36 P.M. Eastern Standard Time,

pastmidvale@... writes:

What are they recommending for Trish?/

Trisha has been put on keflex to help with the infected ones and I was told

to use cornstarch, warm compresses 3-4 times a day, soak in epsom salts and

come back when she finishes her medicine. If the lesions are not healed by

then the doctor said we might have to consider surgery. In the HS group I

joined I was advised to use pure T-Tree oil on the bad places before they open

to

help reduce them, to wear baggy clothes. Hold on a sec, I'll just copy what

they wrote:

Unfortunately, this disease is incredibly painful - like no pain you

have ever experienced. There are some days when it hurts so much I

cannot put clothes on and other days when it hurts just to breathe.

The big ones are almost always excrutiatingly painful - but some of

the ones that look like nothing more than a large zit can be equally

as painful, even though they don't look like much. If a lesion forms

close to a nerve, every slight movement can cause severe pain. The

slightest pressure on a lesion is usually enough to make one wince or

even cry. It IS painful - and it's not just in our heads.

There are things that can be done to minimize the pain, help the

lesion cyle through to drain quicker and give us some relief. The

first item in my personal arsenal is Tee Tree Oil (TTO). Most HSers

swear by this stuff. It is a natural extract that has anticeptic

properties and can really help an " owie " or " alien " to recede much

quicker than if left to its own devices. TTO can be found at walmart

and health food stores or at http://www.puritan.com (the website

usually offers buy one - get one (or 2) free). TTO is applied

directly to lesions that have not yet opened. The stuff stings a

little bit and can be diluted with witch hazel before being applied

with a Q-Tip. It is most important NOT to apply it to open wounds - as

your daughter would go through the roof! I've also found the body

washes that contain TTO to be helpful. To give them an added " boost " ,

I usually pour a little of the real TTO into the bottle of body wash

and shake it up. This can be used either to wash with in the shower,

or added to a bath.

The second item I recommend (and swear by) is Vick's Vapo Rub CREAM

(not the goop we all grew up with - but the new CREAM). For really

painful lesions, I apply this stuff directly to the area and rub it

in. After the initial sting wears off in a minute, it really feels

like a cool breeze on a hot summer's day. The menthol soothes and

cools the area, making the pain minimize (it never really ever goes

away completely until the lesion drains). Again, because it stings,

only apply it to lesions that have not opened yet. Vagisil has also

been mentioned by a friend to work, because it contains lidocaine (or

something similar) and will numb the area it is applied to. I have not

tried this one out, but I do trust the friend who told me about it.

Hot compresses and hot baths will help the lesions form a head and

open, thus relieving the pressure that is building under there. For

added benefit, you can add epsom salts to the water for both the bath

and the compress. Some people actually wrap some of the salts into a

wascloth and then soak it in hot water before applying it to the lesion.

Good bandaging is key to reliving the friction that is caused by

clothing and such. Paper tape, non-stick bandages, flexible fabric

band-aids and pantiliners are among the most popular forms of

bandages. Pantiliners work wonders as bandages under the boobs. You

can stick it to the opposing skin and it will both protect and absorb.

You can also stick them conveniently into a bra and they will protect

that way too. Someone recently came up with the suggestion of

disposable Nursing Pads (for nursing mothers). She swears by sticking

them in her bra to do the same thing as pantiliners. Since I really

can't wear a bra anymore, I haven't been able to try them, but if I

was still able to, I'd definitely give them a shot.

Powders. Gold bond or shower to shower powder is a great alternative

to deodorant. (Even if she does not yet have them under her arms, it

is possible that it may spread at a later date - so cutting out

deodorant now might prolong the spreading). The powders can also be

used under her breasts and in her groin (or anywhere else that skin

touches skin) to help keep moisture away.

Pain meds are always a good option for those days when I just can't

get out of bed, but need to function. I take maybe 2 pain pills a

month, if that. I really use them sparingly (as not to become

addicted), but they are a Godsend for those days where life seems

impossible.

For right now, those are the basics that I can think of as far as

managing HS.

Keeping the area clean is the most important way to keep infection at

bay. Our infections are secondary, meaning that the HS lesions

generally do not contain any foreign bacteria or mass amounts of

normal bactera (ie - infection). Infection generally occurs when the

bacteria that is normally present on the skin is introduced into an

open lesion - where the conditions are optimal for it to grow. Washing

with anti-bacterial soap at least once a day will keep the bacteria in

check on her body. Using TTO on the forming lesions will keep the

bacteria at bay around the lesion. Once the lesion opens, wash it with

anti-bacterial soap, do regular dressing/bandage changes and keep it

as clean and dry as possible. If the area becomes really red and

inflamed (more than usual), feels really hot to the touch and/or you

start seeing red streaks shooting out towards the direction of her

heart, seek medical treatment immediately. Those are signs of an

infection (more accurately, cellulitis) and if left untreated, it can

be fatal. Cellulitis is easily remedied with antibiotics, but it needs

to be treated sooner, rather than later. Cellulitis is generally the

only major complication that HSers face with this disease.

As far as the tracking goes: When I explain tracking to people, I use

the image of a subway system.

The stations are lesions, the tracks are tracts and the cars/trains

are pus. Imagine an interconnected tunneling under the skin - that

connects one " station " with the others. The " trains " move around in

these tunnels - sometimes stopping at one station or the other - but

there are times when there are " trains " stopped at more than one

station at a time.

Sinus tracking is basically a series of tunnels under the skin that

connect one lesion to another - or multiple lesions. The most

tell-tale sign of tracking is if you have two active lesions and push

on one, if they are linked - then pus will ooze out of the other one.

It's not a pretty image, but it's one definite way to tell.

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

We also use Tea Tree Oil. I found it in a wax base for lip pomade that is

easy to get on Elie. He gets them on or close to his penis, at the

underwear lines, and under the knees. HE will NOT let me work on them until

he can no longer bear the pain. But oatmeal baths and epsom salt baths do

help, as due compresses when he lets me do them. Wet tea bags help them

come to a head.

Sara - Choose to make lemonade, not complain about the lemons.

>From: Csvillars@...

>Reply-To:

>To:

>Subject: Re: Hidradenitis suppurativa and Down Syndrome

>Date: Fri, 21 Jul 2006 16:57:47 EDT

>

>

>In a message dated 7/21/2006 4:50:36 P.M. Eastern Standard Time,

>pastmidvale@... writes:

>

>What are they recommending for Trish?/

>

>

>

>Trisha has been put on keflex to help with the infected ones and I was

>told

>to use cornstarch, warm compresses 3-4 times a day, soak in epsom salts

>and

>come back when she finishes her medicine. If the lesions are not healed

>by

>then the doctor said we might have to consider surgery. In the HS group I

>joined I was advised to use pure T-Tree oil on the bad places before they

>open to

>help reduce them, to wear baggy clothes. Hold on a sec, I'll just copy

>what

>they wrote:

>

>Unfortunately, this disease is incredibly painful - like no pain you

>have ever experienced. There are some days when it hurts so much I

>cannot put clothes on and other days when it hurts just to breathe.

>The big ones are almost always excrutiatingly painful - but some of

>the ones that look like nothing more than a large zit can be equally

>as painful, even though they don't look like much. If a lesion forms

>close to a nerve, every slight movement can cause severe pain. The

>slightest pressure on a lesion is usually enough to make one wince or

>even cry. It IS painful - and it's not just in our heads.

>

>There are things that can be done to minimize the pain, help the

>lesion cyle through to drain quicker and give us some relief. The

>first item in my personal arsenal is Tee Tree Oil (TTO). Most HSers

>swear by this stuff. It is a natural extract that has anticeptic

>properties and can really help an " owie " or " alien " to recede much

>quicker than if left to its own devices. TTO can be found at walmart

>and health food stores or at http://www.puritan.com (the website

>usually offers buy one - get one (or 2) free). TTO is applied

>directly to lesions that have not yet opened. The stuff stings a

>little bit and can be diluted with witch hazel before being applied

>with a Q-Tip. It is most important NOT to apply it to open wounds - as

>your daughter would go through the roof! I've also found the body

>washes that contain TTO to be helpful. To give them an added " boost " ,

>I usually pour a little of the real TTO into the bottle of body wash

>and shake it up. This can be used either to wash with in the shower,

>or added to a bath.

>

>The second item I recommend (and swear by) is Vick's Vapo Rub CREAM

>(not the goop we all grew up with - but the new CREAM). For really

>painful lesions, I apply this stuff directly to the area and rub it

>in. After the initial sting wears off in a minute, it really feels

>like a cool breeze on a hot summer's day. The menthol soothes and

>cools the area, making the pain minimize (it never really ever goes

>away completely until the lesion drains). Again, because it stings,

>only apply it to lesions that have not opened yet. Vagisil has also

>been mentioned by a friend to work, because it contains lidocaine (or

>something similar) and will numb the area it is applied to. I have not

>tried this one out, but I do trust the friend who told me about it.

>

>Hot compresses and hot baths will help the lesions form a head and

>open, thus relieving the pressure that is building under there. For

>added benefit, you can add epsom salts to the water for both the bath

>and the compress. Some people actually wrap some of the salts into a

>wascloth and then soak it in hot water before applying it to the lesion.

>

>Good bandaging is key to reliving the friction that is caused by

>clothing and such. Paper tape, non-stick bandages, flexible fabric

>band-aids and pantiliners are among the most popular forms of

>bandages. Pantiliners work wonders as bandages under the boobs. You

>can stick it to the opposing skin and it will both protect and absorb.

>You can also stick them conveniently into a bra and they will protect

>that way too. Someone recently came up with the suggestion of

>disposable Nursing Pads (for nursing mothers). She swears by sticking

>them in her bra to do the same thing as pantiliners. Since I really

>can't wear a bra anymore, I haven't been able to try them, but if I

>was still able to, I'd definitely give them a shot.

>

>Powders. Gold bond or shower to shower powder is a great alternative

>to deodorant. (Even if she does not yet have them under her arms, it

>is possible that it may spread at a later date - so cutting out

>deodorant now might prolong the spreading). The powders can also be

>used under her breasts and in her groin (or anywhere else that skin

>touches skin) to help keep moisture away.

>

>Pain meds are always a good option for those days when I just can't

>get out of bed, but need to function. I take maybe 2 pain pills a

>month, if that. I really use them sparingly (as not to become

>addicted), but they are a Godsend for those days where life seems

>impossible.

>

>For right now, those are the basics that I can think of as far as

>managing HS.

>

>Keeping the area clean is the most important way to keep infection at

>bay. Our infections are secondary, meaning that the HS lesions

>generally do not contain any foreign bacteria or mass amounts of

>normal bactera (ie - infection). Infection generally occurs when the

>bacteria that is normally present on the skin is introduced into an

>open lesion - where the conditions are optimal for it to grow. Washing

>with anti-bacterial soap at least once a day will keep the bacteria in

>check on her body. Using TTO on the forming lesions will keep the

>bacteria at bay around the lesion. Once the lesion opens, wash it with

>anti-bacterial soap, do regular dressing/bandage changes and keep it

>as clean and dry as possible. If the area becomes really red and

>inflamed (more than usual), feels really hot to the touch and/or you

>start seeing red streaks shooting out towards the direction of her

>heart, seek medical treatment immediately. Those are signs of an

>infection (more accurately, cellulitis) and if left untreated, it can

>be fatal. Cellulitis is easily remedied with antibiotics, but it needs

>to be treated sooner, rather than later. Cellulitis is generally the

>only major complication that HSers face with this disease.

>

>As far as the tracking goes: When I explain tracking to people, I use

>the image of a subway system.

>

>The stations are lesions, the tracks are tracts and the cars/trains

>are pus. Imagine an interconnected tunneling under the skin - that

>connects one " station " with the others. The " trains " move around in

>these tunnels - sometimes stopping at one station or the other - but

>there are times when there are " trains " stopped at more than one

>station at a time.

>

>Sinus tracking is basically a series of tunnels under the skin that

>connect one lesion to another - or multiple lesions. The most

>tell-tale sign of tracking is if you have two active lesions and push

>on one, if they are linked - then pus will ooze out of the other one.

>It's not a pretty image, but it's one definite way to tell.

>

>Carol

>Trishasmom

>She isn't typical, She's Trisha!

>

>

>

>

[Guest guest]

In a message dated 7/22/2006 5:06:14 P.M. Eastern Standard Time,

charlyne1121@... writes:

I am grateful you posted this info so I actually have a name to this

problem.

While I am not happy that Trisha has this I am glad to be able to share

information about it as I learn. I will keep you posted on different

treatments

that I learn about. If you want to check out the support group let me know

and I will email you the link.

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

Hi Carol,

Zeb also has this mostly in the upper thighs, pubic area and buttocks. I am

grateful you posted this info so I actually have a name to this problem. I have

him sit in the tub and I have used boil-ese cream and an antibiotic cream. It

all seems to help but it takes time for them to come to a head and drain so he

can have some relief. I didn't know about the tree oil and I will certainly get

some at the health store. I have kept him home from school a few times this year

becuase he could barely walk. I also have a friend with this problem and some

days she is in agony. She will also be happy to learn what this is and what

causes it.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

Csvillars@... wrote:

This past week Trisha was dx'd with Hidradenitis suppurative aka HS. I

wanted to share this information with everyone in case anyone has had problems

with what appears to be boils in the groin area or the breast area that keep

reoccurring. Poor Trisha has been dealing with this for years but we had no

clue what it was. This also may explain some of her crying spells when we have

no other clue as to what is wrong. She has been signing hurt but we didn't

know what or where until Monday when she pointed to the sore place and signed

hurt. I realize that 9 times out of 10 most of our kids won't have this but

just in case anyone is dealing with it I wanted to share the info and to say

I found a great support group on yahoo for HS. See info below:

Background: Hidradenitis suppurativa is an annoying chronic condition

characterized by swollen, painful, inflamed lesions in the axillae, groin, and

other parts of the body that contain apocrine glands. The disease is a chronic

acneiform infection of the cutaneous apocrine glands that also can involve

adjacent subcutaneous tissue and fascia. The hallmark of the disease is sinus

tracts (which can become draining fistulas) in the apocrine gland body areas.

Velpeau first described the condition in 1839.

Pathophysiology: The condition has classically been thought to occur when

apocrine gland outlets become blocked by perspiration or are unable to drain

normally because of incomplete gland development. Secretions trapped in the

glands force perspiration and bacteria into surrounding tissue, causing

subcutaneous induration, inflammation, and infection. However, more recent

studies

have indicated that hidradenitis suppurativa is caused by follicular occlusion

first, which, in turn, occludes the apocrine glands and causes

perifolliculitis. Therefore, it is actually a disorder of the terminal

follicular

epithelium located in the apocrine gland-bearing skin areas, which may better be

termed as acne inversa.

Hidradenitis suppurativa is confined to areas of the body that contain

apocrine glands. These areas are the axillae, areola of the nipple, groin,

perineum, circumanal, and periumbilical regions.

Often, patients with hidradenitis suppurativa also are afflicted with acne,

pilonidal cysts, and chronic scalp folliculitis; thus, giving rise to the term

follicular occlusion tetrad.

History: The most common presentation is that of painful, tender, firm,

nodular lesions under the arms.

* The nodules may open and drain pus spontaneously. Nodules will heal

slowly, with or without drainage, over 10-30 days.

* In typical cases, nodules recur at least several times yearly.

* In severe cases, the patient may suffer a constant succession of new

lesions forming as soon as old lesions heal.

* Excessive heat, perspiration, tight clothing, and obesity seem to

aggravate the condition. Studies also show that cigarette smoking is a

precipitator of the condition.

* Remissions may last months or years.

Physical:

* The patient may present in considerable pain, with multiple red,

hard, raised nodules in areas where apocrine glands are concentrated.

* Affected areas may include the axillae, periareolar, intermammary

zones, pubic area, infraumbilical midline, gluteal folds, genitofemoral areas

(top of the thighs in genital area), and the perianal region.

* As suppuration progresses, surrounding cellulitis may be present.

Chronic recurrences result in palpable thick sinus tracts under the skin, which

may turn into draining fistulas.

* The patient may present with a chronic condition in which the

multiple nodules have coalesced and are surrounded by a fibrous reaction. This

results in scarred and unsightly appearance of the area.

* Hidradenitis suppurativa may resemble recurrent bacterial

folliculitis and furunculosis.

Causes:

* A genetic predisposition to hidradenitis suppurativa likely exists,

with one study noting that 38% of patients had a relative with hidradenitis.

* Excessive perspiration, often observed in athletes and the obese, may

contribute to clogging of the apocrine glands.

* Disease activity may be related to stress and to cigarette smoking.

* Hidradenitis may be observed as a primary condition without any

obvious cause, but it may be observed in association with the following

conditions:

* Crohn disease

* Irritable bowel syndrome

* Down syndrome

* Certain forms of arthritis

* Graves disease or Hashimoto thyroiditis

* Sjögren syndrome

* Herpes simplex

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

Carol- I would appreciate anything new you may learn. I am going to pass on the

support group, no time.

Charlyne

Csvillars@... wrote:

In a message dated 7/22/2006 5:06:14 P.M. Eastern Standard Time,

charlyne1121@... writes:

I am grateful you posted this info so I actually have a name to this

problem.

While I am not happy that Trisha has this I am glad to be able to share

information about it as I learn. I will keep you posted on different treatments

that I learn about. If you want to check out the support group let me know

and I will email you the link.

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

I have a question for those of you familuar with this. Adam gets rashes

alot. In his diaper area its not the typical diaper rash they look like a really

bad pimple. This rash spreads to his waist and down his legs.In the last year

2 pimples have gotten infected and turned into cellulitis with MRSA. One on

the leg and the other on his arm. Drs say may be his ezema or a fungial

infection. Does this sound like it could be hidradenitis suppurativa?

michelle

[Guest guest]

In a message dated 7/22/2006 10:34:04 P.M. Eastern Standard Time,

Mitch0519@... writes:

Does this sound like it could be hidradenitis suppurativa?

I am just learning about HS but no it doesn't sound like the same thing. HS

looks more like boils. There are 3 stages of HS. You get what they call

sinus tracking when there are several lesions and when you press on one pus

will come out the others. You can go to the sites below and get more info.

_eMedicine - Hidradenitis Suppurativa : Article by Fite, MD, FACEP_

(http://www.emedicine.com/emerg/topic259.htm)

_Hidradenitis Suppurativa_

(http://www.skincell.org/hidradenitis_suppurativa.shtml)

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

My dh just reminded me that our oldest son (non-DS) haad a similar issue

when we were overseas. He got it in his 15th year. He was treated after

abt didn't work! with Gamma Globulin and B12. The theory was that he was

immuno compromised and needed to boost his immune system. It went on for a

couple of months, best as we can recall with our son getting weekly shots.

Never recurred until a few years ago when he was dx with Diabetes that was

wayout of control. (he is now in his late 30's) Now he has periods of

" boils " in armptis and back of neck when his diabetes isn'tin good control.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Re: Hidradenitis suppurativa and Down Syndrome

>Date: Sat, 22 Jul 2006 15:26:12 -0700 (PDT)

>

>Carol- I would appreciate anything new you may learn. I am going to pass on

>the support group, no time.

> Charlyne

>

>Csvillars@... wrote:

>

>In a message dated 7/22/2006 5:06:14 P.M. Eastern Standard Time,

>charlyne1121@... writes:

>

>I am grateful you posted this info so I actually have a name to this

>problem.

>

>While I am not happy that Trisha has this I am glad to be able to share

>information about it as I learn. I will keep you posted on different

>treatments

>that I learn about. If you want to check out the support group let me know

>and I will email you the link.

>

>Carol

>Trishasmom

>She isn't typical, She's Trisha!

>

>

[Guest guest]

has always gotten something like this. The dermatolgist we saw about 2

years ago, cultured one and said his body harbors staph. we put bactroban on

them and then we're supposed to put bactroban in his nares every night for 5

nights in a row, once a month. This is supposed to keep it from spreading I

think, his hands are everywhere!

Jayne

Mitch0519@... wrote:

I have a question for those of you familuar with this. Adam gets

rashes

alot. In his diaper area its not the typical diaper rash they look like a really

bad pimple. This rash spreads to his waist and down his legs.In the last year

2 pimples have gotten infected and turned into cellulitis with MRSA. One on

the leg and the other on his arm. Drs say may be his ezema or a fungial

infection. Does this sound like it could be hidradenitis suppurativa?

michelle

[Guest guest]

In a message dated 7/23/2006 9:26:53 A.M. Eastern Standard Time,

pastmidvale@... writes:

It may get bigger, harder, have a head, but it does not spread.

it doesn't spread but it does move. You can start out with it just in one

area and sometimes it moves to other areas, it can be in several areas at the

same time or it can break out in one area and then another. Trisha started

out with it just in her groin area and now it has moved to her boobs and she

has one started under her armpit. However it does not look like a rash at

all. :-)

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

The thing about HS that I have seen is that it doesn't spread. It is

localized. It may get bigger, harder, have a head, but it does not spread.

Spreaading things are more likely to be fungal and acquire MRSA! (Poor

Boy!)

Is he still wearing diapers of some sort?

Sara - Choose to make lemonade, not complain about the lemons.

>From: Mitch0519@...

>Reply-To:

>To:

>Subject: Re: Hidradenitis suppurativa and Down Syndrome

>Date: Sat, 22 Jul 2006 22:33:24 EDT

>

>I have a question for those of you familuar with this. Adam gets rashes

>alot. In his diaper area its not the typical diaper rash they look like a

>really

>bad pimple. This rash spreads to his waist and down his legs.In the last

>year

>2 pimples have gotten infected and turned into cellulitis with MRSA. One

>on

>the leg and the other on his arm. Drs say may be his ezema or a fungial

>infection. Does this sound like it could be hidradenitis suppurativa?

>michelle

>

>

>