about mouthwash

[valarie k]

Heres a question:
my dr had asked me to stop using mouthwash, thinking that it was possibly contributing to the recurrent thrush. His theory was that "anti bacterial" was killing off too many bacteria and with me prone to thrush already, it was making it worse.
so I tried this--
and now the big mouth sores are back. I have had these recurrently for several yrs, I assume they ahve something to do with the PID, but havent had them formally addressed, bc as we all know, if you have sores or something like that youd like to ask the dr about, they'll hang  around and irritate you UNTIL the day of the dr appt, and then it disappears:)
So-----which side of the fence is worse? using strong mouthwash and keeping  mouth sores at bay, or having constant thrush?

GGGRRRRR!

valarie

---

Never miss a thing. Make Yahoo your homepage.

[kpipedream]

Hey Valerie, I do not know what you were using but we use nystatin
swish & swish & swallow & lactinex granules you mix in yogurt or soft
food. The Lactinex you get from the pharmacy you have to ask for it &
check the date. It has to stay in the fridge & the granules work
better than the pills & you take them 4 times a day when yeast is
present & twice a day to maintain. The mouth wash needs a prescription
& lots of people only swish with & do not swallow. It works really
well & following a strict schedule with it & holding in your mouth for
as long as you can is best. The doc you have is following the new
trend in medicine. At work ( I'm a nurse & work in a hospital) they
have huge posters in the conference room about the over the
prescribing of antibiotics & that we use too many disinfectants &
cleaners (outside the hospital). Some medical people think we have
over cleansed our immune systems & our environment.I do not think that
pertains to people that have no immune systems to begin with. My
daughter got a lecture from her Dr. (immunologist) yesterday about
washing her hands & staying away from public toilets & water
fountains. He then looked at me & said " I only lecture my PID, CVID &
CF kids, it's okay for you to use public toilets & water fountains.
He has no idea that we have been carrying bottled water with since
they began selling it & we use public toilets from a distance if you
know what I mean :o ) -- I hope you get some good ideas from everyone.
Take Care Karen B.

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

[valarie k]

I usually take Diflucan for a week, with a double dose on the first day--for the thrush, I mean.
Thanks!

kpipedream <4ben...@bellsouth.net> wrote:

Hey Valerie, I do not know what you were using but we use nystatin
swish & swish & swallow & lactinex granules you mix in yogurt or soft
food. The Lactinex you get from the pharmacy you have to ask for it &
check the date. It has to stay in the fridge & the granules work
better than the pills & you take them 4 times a day when yeast is
present & twice a day to maintain. The mouth wash needs a prescription
& lots of people only swish with & do not swallow. It works really
well & following a strict schedule with it & holding in your mouth for
as long as you can is best. The doc you have is following the new
trend in medicine. At work ( I'm a nurse & work in a hospital) they
have huge posters in the conference room about the over the
prescribing of antibiotics & that we use too many disinfectants &
cleaners (outside the hospital). Some medical people think we have
over cleansed our immune systems & our environment.I do not think that
pertains to people that have no immune systems to begin with. My
daughter got a lecture from her Dr. (immunologist) yesterday about
washing her hands & staying away from public toilets & water
fountains. He then looked at me & said " I only lecture my PID, CVID &
CF kids, it's okay for you to use public toilets & water fountains.
He has no idea that we have been carrying bottled water with since
they began selling it & we use public toilets from a distance if you
know what I mean :o ) -- I hope you get some good ideas from everyone.
Take Care Karen B.

On Nov 29, 12:40 pm, valarie k wrote:
> Heres a question:
> my dr had asked me to stop using mouthwash, thinking that it was possibly contributing to the recurrent thrush. His theory was that "anti bacterial" was killing off too many bacteria and with me prone to thrush already, it was making it worse.
> so I tried this--
> and now the big mouth sores are back. I have had these recurrently for several yrs, I assume they ahve something to do with the PID, but havent had them formally addressed, bc as we all know, if you have sores or something like that youd like to ask the dr about, they'll hang around and irritate you UNTIL the day of the dr appt, and then it disappears:)
> So-----which side of the fence is worse? using strong mouthwash and keeping mouth sores at bay, or having constant thrush?
>
> GGGRRRRR!
>
> valarie
>
> ---------------------------------
> Never miss a thing. Make Yahoo your homepage.

[Terri Cerda]

Hi Valerie!

 

Did you ever get the results of all your testing?  I think of you often and wonder how you and your little ones are doing?

 

Terri

[valarie k]

Hey Terri,
I hope you guys are doing ok!:)
I am still the same.........I have an IGG subclass def, and a few other "low" counts, however, since we foudn that, Ive not been able to prove enough bacterial infections to merit IVIG approval from  my insurance. Ive been pretty much non stop sick......just not sick ENOUGH, which is frustrating. Its allergies, and viral stuff, and migraines.
So, until I can get to that, Ive been concentrating not on my PID but rather on a bladder disease Ive had for a few yrs, but has been untreated. Since daily pain killers are no longer helping me at all, and Im in the bathroom much like I would be if I were 10 months pregnant, lol, Ive pursued a new urologist who has hope he can help me, he also thinks I have much more than IC going on down there. The next few weeks I have fun scheduled that you just cant imagine, fun with a urologist, which is fun Id rather leave undone, but I cant put this off any longer.
So.........hopefully we get some answers in that area. Unfortunately, my cystoscopy is scheduled at that office on Dec 18..........and we have to be at U of M by 8 the next morning for ID appts and IVIG for all three kids. so that might be tough.
The kids are doing fairly well. My 7 yr old has recently started Zoloft(no mean comments please!), which was a hard decision, but the payoffs have been incredible. the little guy is doing fairly well, he's missed a lot of his first yr of school, but is soaring as far as learning........jumped over 200 points on his assesment testing in just over two months! and his teacher has been great about helping him catch up when he misses.
You guys doing ok? Have you gotten the education end of things cleared up yet?

valarie

[Terri Cerda]

Gosh Valerie!  You are getting SCRE!@!@!(* by your insurance.  PIDD is not always a susceptability to bacterial infections.....some deficiencies cause inability to stave off viruses....something IVIG can help.  All of us have a problem with viruses and viruses can kill just as easily as bacteria can!  That is just plain rediculous.  Anyway, I am sure you have figured that out by now.

 

Sorry to hear you are so sick....yuck!

 

We had a couple of bouts with nasty stuff....pneumonia etc.  Molly got pneumonia 3 times in 12 weeks and now has damage to 50 of her lungs (bronchiectisis).  I started IVIG again about 4 months ago and, after a couple of minor adjustments, am doing really well.  For some odd reason, my body decided it didn't need to make B cells anymore and shut down.  The count is still anywhere from 1-6......pretty much not there.  I am staying well though and all my wierd muscle stuff went away when I started back on IVIG.  They think that I was having a histamine reaction to the sub q delivery. The girls are both still on sub q and doing well.  Molly is on all sorts of inhaled steroids and asthmas meds now to keep her lung damage at bay.

 

The schoolr stuff got REALLY bad and I withdrew the kid from the public schools homebound program.  The school district here is terrible!  They are now doing K12 and Molly is in the final steps of getting into the Davidson Institute for Young Scholars.  We are keeping our hopes high that EM Home Edition has chosen us.  They were here about 10 weeks ago and we have not heard another word from them.  They are supposed to be filming here in mid December.,.....which is quickly approaching.  No New, in this case, is good news......they took several valuable family momentos with them, promising to return them promptly if they did not need them and, despite a couple of telephone calls, we have not gotten them back.  On the other hand, we have contrator trcuks cruising by the house and there are many strange things happening.  We are pretty sure we got it.......but maybe not.  We can only hope.  In the meantime, we have no heat as our heater and AC broke down for the second time in 6 months.  The fronts are falling off my cabinets and all the toilets are leaking.  I am afraid to fix anything....sure that they will show up the minute I do.  So say your prayers for us.

 

I need to run....Maggie has it comin out both ends tonight......she ate some bad chicken. 

 

Take care and stay in touch!  Have a great holiday season.  I will also pray that your health returns so you can enjoy the season.

[valarie k]

I know that EM makeover is doing/has done a house this week, for a family where all four children have EE. So maybe they are pursuing a bent towards helping families who have sick kids, this yr. I sure hope you get it! It WOULD be just the luck to fix everything and then have them show up.

good luck,

---

Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how.

[Terri Cerda]

LOL...I just read my post about molly and her 50 lungs....too funny.  I meant to say "50%" of her lungs.....she would be so much better of if only one of her 50 lungs had gone awry?  LOLOL.

[valarie k]

LOL!
whats odd is that I read it exactly like you meant it.......I didnt even catch the mistake:)
Savannah has been down to 20% before...........but has recovered somewhat after a yr of IVIG. At one point, it seemed like she would never get above 40%.......but I think her last PFT was around 80%, which is pretty amaziing to me.

[Mark Leventhal]

EE?

---

From: primary...@googlegroups.com [mailto:primary...@googlegroups.com] On Behalf Of Terri Cerda
Sent: Monday, December 03, 2007 12:26 PM
To: primary...@googlegroups.com

[valarie k]

Sorry.......eonsophilic esophagitis, I think its autoimmune? meaning the child has allergic reactions in the esophagus, sometimes colon to many foods. Many of these kids are only gtube fed, or orally taking a non allergenic formula.

I find so often, I start thinking in acronyms and dont realize when I type it that not everyone thinks the same way I do:)sorry!

---

Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now.

[Terri Cerda]

SHe actually has not had PFTs since July when her scans were normal.  Between July and September, she went from having completely normal CAT scans to having Moderate to severe bronchiectesis with appx 50% of her airways scarred.  They do not know if she will recover.  If it were my opinion, I think she will.  THis is all thanks to a fellow training with our immuno that made the rash decision in July that the children did not need immunoglobin anymore.  With in two weeks of discontinuing their immunoglobin, both children lost all their protective antibodies and, within another 3 weeks, their immunoglobin levels were terrible.  They re-started their infusions about 6 weeks ago; after spending a week at UCLA on IVIG and IV antibiotics.  She sees the pulmonologist for the 1st time at UCLA on Friday and will likely have PFTs done....I expect them to be normal as her inhaled steroids seem to be making all the difference in the world for her.  Maggie also sees the Rheumatologist Friday......her ANAs are staying extremely elevated and have been for well over a year now.  She is complaining of a great deal of leg pain and now shoulder pain.  The odd thing is that when she is in a lot of pain, her joints are snapping and popping really badly and loudly.  I wonder how many other PIDD kids have hypermobile joints.  I am hearing other moms speak of this in their children.  Santa is going to be giving Maggie a wheelchair this Christmas :(.........I cannot carry her 50 pound body around anymore.  Still, we are all hanging very well.

 

CHristmas season has been wonderful so far!  Over the weekend, I finally got to install a mural that I have been building in my garage for 6 months.  It is a jungle scene and is now gracing the walls in the waiting area of the Children's Center for Cancer and Blood DIsorders.  If anyone wants to watch....I have a new website:  www.artfulhearts.org   It is in the building phase still and I am struggling a bit wit what goes on whcih page so that the site comes up when people querry something that has anything to do with it.  I was also able to get FAO Schwartz to donate a truck full of toys and have a group of flute builders donating over 60 Native American FLutes.  The week before CHristmas, we are delivering 150 polar fleece blankets that are being made right now.  I am so excited as the kids in this clinic have sort of been left high and dry by the other very wealthy cancer clinic.  The foundations are overlooking this clinic for political reasons......something that should NEVER come into play when dealing with sick children.

 

It is a wonderful place to put our energy and Molly and Maggie spend most of their time thinking of other children's challenges instead of their own....just the way I want it.

 

The board has been so quiet.  I miss everyone and wish  I still had the companionship.  I hope everyone has the MOST incredible holiday season, full of blessings and health.

 

Stay tuned and I will let everyone know as soon as I know anything with EM Home.  It is looking as though we have been chosen......but anything could happen.  We are looking VERY forward to the chance to bring attention to PIDD with a huge, national audience.  We also asked that they sponsor a plasma drive in conjunction with the show (if we get it).  We learned, during the process of the initial filming, that it takes a pool of over 50,000 donors to make a single batch of immunoglobin for infusions.  I found this to be shocking, as did the film crew.....they just sat with their mouths hanging open.  Additionally, a national audience will wathc what a family with PIDD goes through to stay well as they filmed the children receiving their infusions (the set up and everything) and my IV infusions.  Everyone say a prayer for this as it is a great opportunity to support the PIDD community....something we know we desperately need.

[valarie k]

Wow,the girls are really growing up! They look so much alike, which  Im sure you hear all the time. Beautiful!
I like the idea of what you are doing. I've taught my kids the same, and often they are working on projects of things to do for others. One yr, Olivia used all of her own money(given by grandparents for a report card) to buy fleece to make a big blanket for the homeless shelter. Our infusion room has a treasure box for after the poke, and they like to make/take things for that. Im amazed you have the time/energy to work on such a huge scale. Its really neat!
Im curious how many of those here use probitiotics.  We've used acidophilus before, but Ive read a lot about probtiotics lately. I went to Whole Foods last time I was down(its 70 miles away) and was so overwhelmed by the choices! I had no idea what I was looking at, so I bought nothing. we see ID on the 19th and I want to ask. All four of my children have GI issues, as well as myself-- currently Im down to cereal, yogurt and ice cream that I can stand to eat:( which is a little frustrating. But everything else hurts too much. Anyway, Ive read probiotics may help with GI issues, but I dont want to get something that would do more harm than good, you know? and two of the kids have food allergies, so I need to be careful there, too.
Terri, do you struggle with fatigue and aches? Honestly, I just feel like I could stand the  viral and fungal infections, Im used to it, and can deal with those things. But the fatigue and pain! I get so frustrated and its sometimes so hard to not get down about that. I hate that I want to do things with my kids and so often, Im just so tired, I cant imagine walking into my kitchen, let alone biking to the park. Even if IVIG could just help me with that--I would be so grateful. I want so much to try it. Other than that, I dont know what to do that might help----any suggestions? I was recently offered a job interview, at my kids school. I kind of wanted it.......but even as I went for the interview(it was a 10-15 hr a week job), I was thinking to myself..........there is no way I can do this. Even aside from the kids medical issues and appts, I just really have no stamina.....everything wears me out. I was glad I didnt get the job-----I would have had to decline it anyway, bc of the pay. But I cant believe Im only 32 and have to constantly think about how tired I am.
I am just way too talkative today:)

[Mark Leventhal]

I thought this was interesting

 

 December 5, 2007: In the News

In the news

Most Sinus Infections Not Helped by Antibiotics: JAMA

According to new research, most routine sinus infections are not significantly helped by the use of antibiotic or other prescribed treatments. Researchers found that most people with sinus infections with symptoms of facial pain and green or yellow mucous generally improved in approximately 2 weeks whether were treated with amoxicillin, steroid nasal spray, or placebo. The study, which appears in the Journal of the American Medical Association, also pointed out that the presence of greenish or yellowish mucous does not always mean the infection is bacterial.

As Reported by CNN