Re: Hello and a question about MRSA...

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In a message dated 4/13/2006 11:08:00 PM Pacific Daylight Time,

dmnnpohla@... writes:

How worried should I be about reoccurance?

The ID said his risk went up " exponentially " since he has had this

infection. Is this true? Advice? Suggestions? I would really

appreciate anything you can share with me. Thanks for your help!

Hi Melody,

I will share with you our experience. Right before starting IVIG, had

chronic infections, including strep. It didn't stop--but kept reoccurring

until he started infusions. That's not to say that will keep getting

staph. Just what our experience was. My son does not make antibodies for

strep.

At first, I was reluctant to start IVIG. But, like you, I reached a point

when I knew it was the only thing that was going to give him a good quality of

life. And you know what?? It did!! He no longer gets strep--not one

infection since starting IVIG. It is still possible, of course, but he is

basically

well with only a few sinus infections left. Listen to you gut--it sounds to

me like you're ready. Besides, if IVIG doesn't work for you, you can always

reconsider later. That's what I told myself but now I would never reconsider!

I'm hoping heals quickly. Please write in and let us know how you

are doing and what you decide.

Sandi, Mom to --age 13--CVID

[Guest guest]

Cellulitis is the pits. My boys have gotten it even while on IVIG...but I

think it was less severe than it would have been. I don't know if having

MRSA changes his immune status or not. If I were you, I would want to give

IVIG a try. Our hem was contemplating doing a trial off of IVIG for our

boys and the serious bout of cellulitis ph had to be hospitalized for

and having 2 bouts last summer was really the factor that made him

reconsider (I think). And from the sounds of it, your son's cellulitis

was/is much worse than our ph's was!!! Do you know what other studies

they have run on your son besides immunoglobulin levels?

Our doctors have told us to be sure to use antibacterial soap for the boys

when they bathe to cut down on the number of bacteria on their skin. We

also have to wash any scrapes and cuts several times for several days...

not that your son had a scrape..but you may want to ask them what they want

you to do when he gets scrapes and cuts. The last knee scrape was looking

like cellulitis and the hem told us to use alcohol prep pads to wipe 's

knee. It really worked at knocking back the infection. Not sure it would

work on MRSA-just telling you what we did. We use the antibacterial wash

and hydrogen peroxide along with gauze sponges to clean the cuts, etc.

I am sorry that you are having to deal with this!

~Pattie~

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

Family website: www.shwachman.50megs.com

_____

_____

[Guest guest]

>

Do you know what other studies

> they have run on your son besides immunoglobulin levels?

>

>~Pattie~

>

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

Lisieux

>

The whole thing was pretty odd actually. The surgeon just started

running the abx immediately without running any sensitivity testing

for abx or culture it or anything. I think his worry was more that

was immune deficient and he wanted to get him on the abx

ASAP. They did one CBC upon admitting him and another CBC and Ig

levels that the ID ordered after we were seen Mon. The culture was

done when the abcess broke during the ID's exam. Other than that, no

testing in the hospital.

The immuno was unreachable all weekend, which bothered me. Then,

when we were able to contact his office Mon to see what he wanted

done before we were d/c, he did not get around to returning our call

until after 1:00, even though my husband had called before office

hours and left a message, then again when they opened, and then again

when it was right before lunchtime. He was not really helpful,

except to be offended that they had not done a culture (even tho as

surgeons, I am sure they had no idea how to treat him properly) and

when I asked HIM if he thought that we should ask an ID to look at

him (which was the GI's idea), he agreed...but the suggestion was not

his and that also bothered me, along with the fact he was so lax

about returning our call. He opinion all along is that has

been fine and he put him on preventatives, which helped, only to take

him off in the middle of this past Jan (which I was against but did

anyway because he assured me it was ok). That resulted in an

immediate illness lasting 1.5 wks and leaving him pretty weak. Since

then, his GI issues have increased dramatically as well. I am not

sure what to do about the current dr situation, but did like the ID

we saw in the hospital, so we are considering getting a second

opinion from him. We still have yet to hear back from our current

immuno since the one call Mon afternoon. I a really disappointed in

him right now, because up until this hospitalization, I had mostly

been ok with him. Now I am not sure he has my son's best interest

and I wonder if he ever did. He has always assured us IVIG is not in

his best interest and he does not require any additional treatment at

this point. Is this right? I am just so confused right now... That

is why I posted. I was hoping I could find some help point me in the

right direction. Thx to everyone who has replied so far...I really

appreciate it.

Melody, mom to 3.5 yr old (THI, GERD, RAD,

DGE/Gastroparesis, gtube/pump fed, hypotonia) and 12.5 mo old

(GERD, DGE, Global Dev Delays, AFO's, Hypotonia, Myopia, ear tubes,

possible undx neuro issues and possible undx genetic issues -

awaiting testing results)

[Guest guest]

pohlarbear13 wrote:

> Hello everyone! I used to post here a bit ago, but since having the

> baby a year ago and dealing with all his issues in addition to my

> older son's, I have not had a lot of time for posting. I hope it is

> ok to jump back in to ask a question...

>

Welcome, Melody, it sounds like you've got your hands full with two!

Questions are always welcome -- I just wish they weren't this kind of

questions! I'd rather hear wonderful news that all is well!!! But,

that's what we're here for!

We are seriously considering getting another opinion

> from him at the follow-up appt.

I highly recommend it. If you feel comfortable with the ID doctor, then

go with him and check him out. If you don't, call the Immune Deficiency

Foundation at 1-800-296-4433 and ask for a recommendation in your area.

Or post your general location on this site and find out if other

people in your area have suggestions.

In your experiences, do you think

> IVIG is warrented at this time if it is suggested to us?

Yes, but the doctor should check to see if he is making antibodies to

his vaccinations before starting IVIG. That's something that cannot be

checked without going off IVIG for 3 months - and you don't want to have

to do that at a later date.

We have

> been trying to avoid it up until this point, but after this last

> scary hospitalization and seeing how sick he was, I am not opposed to

> anything at this point.

Sometimes it takes a scare to get us ready. I'm sorry it had to be this

way. Some kids can maintain on prophylactic antibiotic -- but in

actuality, without the ability to build antibodies -- these kids are

just very, very vulnerable out there in a world that is filled with

danger for them.

How worried should I be about reoccurance?

Sorry, I don't know. But I know that Staph is nasty stuff. Had an

acquaintance lose a child with CVID to overwhelming Staph infection.

Not a pretty story. So you are very fortunate to have survived this one!

> The ID said his risk went up " exponentially " since he has had this

> infection. Is this true?

I think any infection weakens the body - whether it's sinus infection,

pneumonia, gut infections, etc. That leaves you more vulnerable the

next time. But when it's a systemic infection, it raises the

vulnerability even more. I think that with Staph you have to be

concerned about residual pockets that can reoccur spontaneously for

quite a while.

Or, he may just be referring to the fact that the infection has shown

you that he doesn't have the necessary protection, and needs to get it

before something worse comes along.

Advice?

See a doctor -- either the ID or a clinical immunologist who know how to

care for PID.

A child that has been treated for PID and gets taken off antibiotic

prophylaxis SHOULD BE RETESTED at least every 6 months for quite a long

period of time. They should never be " assumed " healthy without periodic

testing. This is a case of medical neglect. PLEASE, PLEASE get your

son to a real doctor!!!!

Melody, there are many bad doctors out there. It's not your fault you

found one -- but it's your responsibility to get medical attention for

your son now that you know that this doctor is not a doctor to trust.

When I took Katy down to college, we were trying to find a new internist

to care for her while she was away from home. We set up an appointment

for an internist within walking distance from her school. So, we show

up and give him all the IDF stuff and he nods knowingly and asks lots of

questions and she liked him and all was well. Then he called us into

his office and said, " Okay, Katy, I'll be glad to be your doctor while

you are here, but I don't want to be constantly on-call, so I've written

you up a prescription for Zithromax -- (which is about the only

antibiotic that she doesn't react to). It's good for a year. Refill it

and use as much as you wish or think you need. Call me if you get into

trouble. " We RAN from his office!!!!! There are REALLY bad doctors

out there.

Also, Melody, have you ordered a Patient and Family Handbook from IDF.

Just call their number at 1-800-296-4433 and they'll send it free of

charge so that you can begin again your education concerning PID.

God bless you on this journey. It's hard to cope with the realization

that this is not transient. This is not going to take care of itself.

And you need to find a doctor who you trust to help you sort out the

testing and treatment plan.

In His service,

dale