Re: Donovans levels

[Guest guest]

Valarie - We have two chronic " snifflers " in the house. DH and Macey. Both

have awful sinuses and Macey has shown bone disease on her CT's. Les is more of

an acute sinus infection person so sooner or later he'll start to wear down

those sinus bones too. The sinuses are coated with IgA. Since we have one on

and one off IgG replacement we get to see that with or without, the sinuses are

still an issue.

since IgA isn't replaced by infusion it is best treated in our case with sinus

specific prophylactic medicine. this is what Les is doing. He takes daily

Biaxin and rotates every 2 years. But he's also almost 40 years old. Macey

takes a daily chest prophylactic because her sinuses tend to drain into her

chest. So that's where we need to stop infections. Les keeps all his crud

upstairs and won't drain. So the infection sets in there.

Macey's daily med keeps pneumonia way. Plus her IgG replacement. If she kept

sinus infections then we'd probably have to alter her daily coverage.

I guess what I'm saying is that IgG replacement hasn't done much for the

infections that are caused by a lack of IgA. The mucus coated areas (ears and

sinuses in Macey's case).

We've had a lot of luck with Omnicef for sinuses. But there have been times

when they are on a " rescue " antibiotic for a current infection and their daily

maintenance antibiotic. When that doesn't seem to knock things out then the

Rhinoflow is brought out. After that it's a nasal spray and after that comes

the IV antibiotics. In Macey's case I've yet had the immuno tell me to move up

her infusion date because of a sinus infection. It just doesn't seem to do any

good.

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

[Guest guest]

Valarie,

Correct me if I did not get this right but are you saying that trough levels

(before IVIG) but after starting IVIG treatment (not baseline numbers) have been

in the upper 400s-500s? And he is having clinical symptoms?

Quoting IDF's Diagnostic and Clinical Care Guidelines for PIDs:

http://www.primaryimmune.org/pubs/book_diag/diag_and%20clin.htm

" An immunologist should participate in the determination of the proper dose and

interval for each patient. Typical total monthly doses are in the range of 400

to 800 mg/kg body weight...Dose adjustments are obviously necessary during

childhood...trough level should be at least at or above the lower range of

normal for IgG levels or >500 mg/dl. This may vary depending on the judgment of

an immunologist as to the patient¢s clinical condition...Higher trough levels

(>800 mg/dl) may also have the potential to improve pulmonary outcomes. "

mom to CVIDer

[Guest guest]

No, both Les and Macey are allergic to Penicillin.

" Can my child take OMNICEF if he or she is allergic to penicillin?

Although OMNICEF is not a penicillin, if your child is allergic to penicillin,

you should talk to your doctor before giving your child OMNICEF. Anyone who is

allergic to any cephalosporin antibiotic should not take OMNICEF. Be sure to let

the doctor know about any allergies your child may have. "

http://www.omnicefforkids.com/parents_about_14.2.1.cfm?p=b

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

[Guest guest]

Ooops... Sorry, Valarie. I got your sons confused. I have one PID child and

that gets hectic! LOL. / (Dani's mom, CVID)

Donovans levels

,

Donovan is the ONE that isnt on IVIG.........yet.I know my houseful

gets confusing:) half the time I cant recall who is who.

We are attempting to decide if we should start him, as we have the

other two, which are Savannah and Brennan. They started in April and

we have seen so much improvement.

I almost WANT him to start.

But what an awful idea!!

THREE of them screaming......................

valarie

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[Guest guest]

-:

Firstly.....it is not just the numbers....if that were the

case....none of us would be on IVIG. There is much more to PID than

the Ig levels....yes, we have some sub class issues....but our

overall Ig level is within normal limitis pre-IVIG. However....some

people could have all the Ig in the world....but it does not do them

any good.....like us....because the body has no way to access

it...there is a communication breakdown elsewhere. For us....we have

B and T Cell issues and our bodies cannot access the Ig that we do

have on our own.....(hence why the idea is now that we have

CID....not CVID). Our family does not present like a typical CVID

case. Additionally, we all have antibody specific disorder that is

quite broad.....antibody specific disorder.....even in the presense

of normal Ig levels, is consider by most docs as reason to begin Ig

replacement. So you have to look beyond Donavan's Ig levels alone

and see if there may be other problems in his immune system or immune

reponse.

Second....you made a comment about the fact that you see that some

kids sinuses have not gotten better since IVIG. I wanted to chime in

on that.....prior to IVIG....Molly alwyas had sinus issues....she

would get a cold that would start in the sinuses.....that within

about 48 hours would turn to pnuemonia.....the one time that they

cultured her....it was mycoplasm pnuemonia.....a type that is common

to immune disorders. Since beginning IVIG, she still has the chronic

pan sinusitis, the pnuemonia things has gone by the wayside....now it

is limited to the sinuses. I think I read someone elses post that Ig

does not tend to reach the sinuses....not sure who said that.

BUT....funny thing....when I was getting IVIG....or when I get my

infusion....my eyes and my sinuses get all wierd DURING

infusion...don't know how to explain it....they just feel

wierd.....my eyes get sort of foggy.....and my nose

feels....well....wierd. So something must get there....not sure

what. The docs have asked us....now that we are on subq, to start

placing a drop or two of leftover product into our noses....we were

doing that on IVIG and it did seem to make a difference. There is a

nother mother here who tried it too and said she noticed a pretty

profound difference. The problem was...when we were on IVIG...there

was no way to make a syringe full of Ig last a month.....once out of

the bottle...it was only good for two days....but now that we are

subq, we need to try it again since we have a readily available daily

dose of Ig product.

Anyway....it does seem that most of the kids with pansinusitis don't

get over it with IVIG....but I can tell you that the secondary

infections have definately gone away....it was those secondary

bacterial infections that were the huge problem for us. During the

one year that Molly has been on Ig replacemet, she has had one bout

with pnuemonia.....not 6-8.

Terri

-- In , " osdbmom " <osdbmom@...> wrote:

>

> So, , now that we have the right kid, looking at those

levels,

> what do you think? would you think that is low enough to start?

> I guess Im just trying to be prepared in case he(dr) says yes, just

> bring him on down with the others this month on infusion day.

>

> Now, I see a lot of people have had little success with sinus

> infections since beginning IVIG. We have had the opposite

> experience--Brennan typically would start with sinus infections

> leading to bronchial infections (and he has severe asthma,

> tracheobroncholaryngomalacia) in August and thru multiple

antibiotics

> and constant prednisone, would usually remain sick until June. the

> ONLY thing that ever helped him was the two times he had a bronch

and

> was " vacuumed " out clean and then restarted on a different abx.

> Obviously, we cant just keep doing that.

> But since starting IVIG, he hasnt been on pred ONCE--not since

> MAY--that is the longest stretch of time in his ENTIRE life--and

> typically, most of his sinus infections have cleared with one round

of

> abx. this last infection has been a bugger but all of us got it and

we

> all have had a hard time getting rid of it, so I tend to think its

> more the strain than his CVID. I would LOVE to see that kind of

> improvement with Donovan.

> Its just that IVIG day is so difficult to begin with ........and

with

> Savannah and her issues.........its just such a draining day

already.

> But I would do it if it would help him the way it has brennan.

>

> thanks,

> valarie

> mom to

> olivia, asthma

> savannah, cvid, asthma, spd,(on IVIG)

> donovan, cvid, asthma, tbm

> brennan, cvid, asthma, tblm, spd(on IVIG)

>

[Guest guest]

Just chiming in that b/c I get subq and thus, once I mix the gamma, I have it

ready - I actually 'snort' in a few drops in each of my nostrils when I'm

starting to get a cold. I get enough in that I can atually feel it run a little

bit down my throat - this has really helped me keep the colds from turning into

infections or from becoming horrible horrible colds.

Anne R

Re: Donovans levels

-:

Firstly.....it is not just the numbers....if that were the

case....none of us would be on IVIG. There is much more to PID than

the Ig levels....yes, we have some sub class issues....but our

overall Ig level is within normal limitis pre-IVIG. However....some

people could have all the Ig in the world....but it does not do them

any good.....like us....because the body has no way to access

it...there is a communication breakdown elsewhere. For us....we have

B and T Cell issues and our bodies cannot access the Ig that we do

have on our own.....(hence why the idea is now that we have

CID....not CVID). Our family does not present like a typical CVID

case. Additionally, we all have antibody specific disorder that is

quite broad.....antibody specific disorder.....even in the presense

of normal Ig levels, is consider by most docs as reason to begin Ig

replacement. So you have to look beyond Donavan's Ig levels alone

and see if there may be other problems in his immune system or immune

reponse.

Second....you made a comment about the fact that you see that some

kids sinuses have not gotten better since IVIG. I wanted to chime in

on that.....prior to IVIG....Molly alwyas had sinus issues....she

would get a cold that would start in the sinuses.....that within

about 48 hours would turn to pnuemonia.....the one time that they

cultured her....it was mycoplasm pnuemonia.....a type that is common

to immune disorders. Since beginning IVIG, she still has the chronic

pan sinusitis, the pnuemonia things has gone by the wayside....now it

is limited to the sinuses. I think I read someone elses post that Ig

does not tend to reach the sinuses....not sure who said that.

BUT....funny thing....when I was getting IVIG....or when I get my

infusion....my eyes and my sinuses get all wierd DURING

infusion...don't know how to explain it....they just feel

wierd.....my eyes get sort of foggy.....and my nose

feels....well....wierd. So something must get there....not sure

what. The docs have asked us....now that we are on subq, to start

placing a drop or two of leftover product into our noses....we were

doing that on IVIG and it did seem to make a difference. There is a

nother mother here who tried it too and said she noticed a pretty

profound difference. The problem was...when we were on IVIG...there

was no way to make a syringe full of Ig last a month.....once out of

the bottle...it was only good for two days....but now that we are

subq, we need to try it again since we have a readily available daily

dose of Ig product.

Anyway....it does seem that most of the kids with pansinusitis don't

get over it with IVIG....but I can tell you that the secondary

infections have definately gone away....it was those secondary

bacterial infections that were the huge problem for us. During the

one year that Molly has been on Ig replacemet, she has had one bout

with pnuemonia.....not 6-8.

Terri

-- In , " osdbmom " <osdbmom@...> wrote:

>

> So, , now that we have the right kid, looking at those

levels,

> what do you think? would you think that is low enough to start?

> I guess Im just trying to be prepared in case he(dr) says yes, just

> bring him on down with the others this month on infusion day.

>

> Now, I see a lot of people have had little success with sinus

> infections since beginning IVIG. We have had the opposite

> experience--Brennan typically would start with sinus infections

> leading to bronchial infections (and he has severe asthma,

> tracheobroncholaryngomalacia) in August and thru multiple

antibiotics

> and constant prednisone, would usually remain sick until June. the

> ONLY thing that ever helped him was the two times he had a bronch

and

> was " vacuumed " out clean and then restarted on a different abx.

> Obviously, we cant just keep doing that.

> But since starting IVIG, he hasnt been on pred ONCE--not since

> MAY--that is the longest stretch of time in his ENTIRE life--and

> typically, most of his sinus infections have cleared with one round

of

> abx. this last infection has been a bugger but all of us got it and

we

> all have had a hard time getting rid of it, so I tend to think its

> more the strain than his CVID. I would LOVE to see that kind of

> improvement with Donovan.

> Its just that IVIG day is so difficult to begin with ........and

with

> Savannah and her issues.........its just such a draining day

already.

> But I would do it if it would help him the way it has brennan.

>

> thanks,

> valarie

> mom to

> olivia, asthma

> savannah, cvid, asthma, spd,(on IVIG)

> donovan, cvid, asthma, tbm

> brennan, cvid, asthma, tblm, spd(on IVIG)

>

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[Guest guest]

It tastes gross...doesn't it Ann? A little sweet.....a little

salty.....I guess is is more of what it is that grosses me out when I

snort it and it runs down the back of my throat....LOL

Terri

> >

> > So, , now that we have the right kid, looking at those

> levels,

> > what do you think? would you think that is low enough to start?

> > I guess Im just trying to be prepared in case he(dr) says yes,

just

> > bring him on down with the others this month on infusion day.

> >

> > Now, I see a lot of people have had little success with sinus

> > infections since beginning IVIG. We have had the opposite

> > experience--Brennan typically would start with sinus infections

> > leading to bronchial infections (and he has severe asthma,

> > tracheobroncholaryngomalacia) in August and thru multiple

> antibiotics

> > and constant prednisone, would usually remain sick until June. the

> > ONLY thing that ever helped him was the two times he had a bronch

> and

> > was " vacuumed " out clean and then restarted on a different abx.

> > Obviously, we cant just keep doing that.

> > But since starting IVIG, he hasnt been on pred ONCE--not since

> > MAY--that is the longest stretch of time in his ENTIRE life--and

> > typically, most of his sinus infections have cleared with one

round

> of

> > abx. this last infection has been a bugger but all of us got it

and

> we

> > all have had a hard time getting rid of it, so I tend to think its

> > more the strain than his CVID. I would LOVE to see that kind of

> > improvement with Donovan.

> > Its just that IVIG day is so difficult to begin with ........and

> with

> > Savannah and her issues.........its just such a draining day

> already.

> > But I would do it if it would help him the way it has brennan.

> >

> > thanks,

> > valarie

> > mom to

> > olivia, asthma

> > savannah, cvid, asthma, spd,(on IVIG)

> > donovan, cvid, asthma, tbm

> > brennan, cvid, asthma, tblm, spd(on IVIG)

> >

>

>

>

>

______________________________________________________________________

__

> Check out the new AOL. Most comprehensive set of free safety and

security tools, free access to millions of high-quality videos from

across the web, free AOL Mail and more.

>

>

>

[Guest guest]

Hi, Valarie.

I was just thinking about how to respond to your last note (to me) and am **so**

glad that you saw the ID doc. He sounds reasonable. And your kiddo may very

well be on the fence. That is a cruddy place to be and you have done right by

them by seeking out help. Donovan needs a safety net of trustworthy docs.

Going to CCHMC sounds like a fine idea. We took Dani there for her GI stuff and

were happy with by Dr. Putnam. People come from all over the country to see

him -- we did.

As far as immunology...they have a sophisticated research lab. I have not seen

Dr. Filopovich (sp?) but she has an outstanding reputation -- known

internationally and does the whole spectrum of PID.

If your ID doc encourages a visit, I would follow his lead. : ) AND, get

yourself checked while you're there. I don't believe that you have ever had a

thorough work up -- from what you have said.

Keep us posted!

mom to CVIDer

[Guest guest]

Hey Valarie,

We live in Minnesota. My son needed a 2nd opinion for diagnosis and

treatment options. We have been out to Cincinnati Children's

Hospital twice so far and need to go back out there after the

holidays. He saw both Dr Filipovich and Dr Risma. If you want to

personally email me we can talk more about the doctors, hospital,

labs, etc...

Mom to 2 year old with a PID

hypogamma with spec antib defic.

newly suggested CVID and many other problems

www.caringbridge. org/visit/ matthewfranson

>

> Ok, so ID dr called me today.

> He spoke with pulmo and they are both still on the fence about

> starting Donovan. Since his levels are not so clear cut as the

other

> two kids were........

> basically, a long conversation shortened, ID feels like he needs to

> talk to another immuno regarding my funky kids. He

just.........wants

> to confer with someone about their symptoms, their labs..their

funky

> everything and see what they might do. He's not convinced he needs

it

> just yet......and he's not convinced he doesnt.

> So, he said he would like to confer with the immunos at cincinatti

> childrens(I think--is that right? its a childrens hospital?) and

toss

> some ideas around. At first I had the horrible thought he was

thinking

> the IVIG wasnt the right thing for Savannah and Brennan and

started to

> freak a little:) but he quickly assured me that no, he isnt

planning

> to start OR stop anyone just now.........he just thinks,

basically, in

> a nice, roundabout way he is telling me my kids are wierd, and he

> wants to speak with someone else who specializes in particularly

weird

> children:)

> See if there is anything else he is missing, should be doing, etc.

>

> I dont have a problem with this.......I would rather have a dr say

> they arent positive they know every single thing and want to ask

other

> experts opinions, than to constnatly insist they are always right:)

>

> In the meantime, should Donovan worsen, call back. Other than

that ,we

> plan to chat them all up and what he finds from the Cincy drs on

next

> IVIG day, which is Dec 27.

>

> And oh, Brennans labs we were waiting on came back, for the

autoimmune

> stuff, and he does NOT make " attackers " for his own neutrophils,

which

> is what we thought might be going on, so, whew!! thats good.

>

> valarie

>