Re: Viral Meningitis

[Guest guest]

Kim,

I can't really think of any forms of viral meningitis that are passed

from one person to another, without the underlying virus being

responsible for the presenting symptoms, so I believe that you're

correct in assuming that it usually arises from another viral infection

and travels to the meninges and coating around the brain after it's not

contained to its original site of infection and " escapes " into the

bloodstream to go visiting to new and welcoming bodily nooks and

crannies -- specifically, in this case, the nervous system.

Is on IVIG? If so, he should have fairly decent protection

against some viruses (including coxsackie), particularly if he has had

his infusion recently. But the further out he is on his IVIG cycle, the

less protection he has, of course. So that's one thing to keep in mind

when responding to the situation (either yourself, or you and your docs).

BUT, I don't know if you saw my message to you the other day, about some

of the similarities and differences between CVID and XLA (and

similarities in treatments)? One of the differences I stated is that

people with XLA have an inexplicable susceptibility to (and then, an

inability to contain or completely eradicate) some viruses, and one of

those is a family of viruses called enteroviruses. sackie is an

enterovirus.

That doesn't mean you should panic, but it might be worth a call to the

on-call doc this weekend, just to see if/what he/she recommends (I would

call the immuno rather than the ped, unless your ped is really familiar

with both types of PIDs, because very few people outside the immunology

world know about the XLA-Enterovirus issue).

Generally, you would begin to see the vescicles on hands, feet, and in

the mouth, then the headache of the encephalitis/meningitis takes a

little while longer to develop, (if it is *going* to develop, because

that's not automatic... many people with PIDs, even XLA, have overcome

coxsackie, so don't get too upset). So, the neuro stuff usually appears

within days, sometimes weeks, though of course everyone's experience is

different.

I had enteroviral meningo-encephalitis about three years ago, after a

case of coxsackie I couldn't fight off completely. I got GI symptoms

(major diarrhea - to the tune of a 20+ lb weight loss in about 6 weeks),

at the same time the vescicles showed up on the palms of my hands. As

the next few weeks went on, I received high dose IVIG, to see if they

could kick this virus, because at the time, no one knew what they were

dealing with (this was before Enterovirus PCR tests were widely

available, so the type of infection was simply assumed based on my

symptoms, spinal tap cell counts, etc). But the diarrhea kept getting

worse, and about two weeks into it, I started to get excruciating

headaches. This prompted a number of neuro appointments, but no one

ever found anything obvious, other than to say that I almost certainly

had an enterovirus out of control in my GI system, and the virus was

probably causing bad headaches, like any virus would, only bigger. A

week after that, I was admitted to the hospital because I started having

seizures and started experiencing a problem called " expressive aphasia, "

which means that I knew exactly what I wanted to say, but couldn't get

it out, and it's very specific for certain kinds of brain damage, which

is the same place they believe the viral damage to my brain is that

causes the seizures (which are now very well controlled on meds). It

was very frustrating to me. I was treated symptomatically (because at

the time, that was the only option for enteroviruses -- symptomatic

treatment and high dose IVIG) -- and I got better to some extent (though

then had to gain back about 25lbs). Even though I really was getting

better all the time, when I entered med school I felt like my world was

out of control, because half the time I couldn't even talk to people

without having one of my embarrassing speech issues, and I used to get

myself so worried and stressed out (with comments to myself like, " how

can you be a doctor if you can't even communicate properly?! " ) that only

it made it worse. As time went on, and I healed, and I stopped getting

panicked every time it happened, it started to fade. So, my

intellectual skills returned, and then it was a matter of physical

ones.... though we took all the recommended ideas from the Infectious

Disease docs, etc., we never were able to completely eradicate the

infection in my nervous system, and I ended up with 5 more cases of

enteroviral encephalitis/meningitis in the next 18 months or so. At

that point, I was so frustrated, but by pure

luck/chance/fate/God/whatever, I was lead to an article about an

experimental medication to kill enteroviruses, especially in the nervous

system. I got an FDA waiver for a compassionate care use of the med,

and I took it for 10 days (3x/day, oral syrup), and (knock wood) I've

not had another case of this in almost 18 months. (Yeahhh!!!).

So, the point of this long-winded message is that - you probably will

NOT see encephalitis or meningitis as Chris' first symptom, if he really

does get coxsackie -- chances are, it would present as vescicles on the

palms and soles, ulcers in the mouth, and maybe GI upset. The neuro

issues usually show up later. But if starts to show any of these

symptoms for coxsackie, you really do need to call your doc, because

they might be able to set you up for a preventative mega-dose of IVIG,

to try to kick the virus before it takes hold systemically and in the

nervous system, or something else that might help contain the infection

-- I'm not sure what that might be, but there may be treatments I've not

heard of, since I haven't deal with this actively in the last 1.5 years.

The issue here is simply that if he has XLA, you want to avoid this

getting out of control by nipping it in the bud, because there's

significantly less protection against this particular virus for people

with XLA. If you knew for sure that had CVID, I would say there's

more room to wait and see what his body can do with it (though some docs

don't think that, so that's my opinion, which may or may not be correct,

especially since I'm not a doctor yet!), but unfortunately, you don't

know which underlying disease he has, so it's best to take a cautious approach.

I hope that the IVIG has protected him, though, and that he will not get

stuck with a nasty virus. I think you're probably all going to be fine,

but let us know if there's anything we can help with!

Take care,

[Guest guest]

Kim,

I can't really think of any forms of viral meningitis that are passed

from one person to another, without the underlying virus being

responsible for the presenting symptoms, so I believe that you're

correct in assuming that it usually arises from another viral infection

and travels to the meninges and coating around the brain after it's not

contained to its original site of infection and " escapes " into the

bloodstream to go visiting to new and welcoming bodily nooks and

crannies -- specifically, in this case, the nervous system.

Is on IVIG? If so, he should have fairly decent protection

against some viruses (including coxsackie), particularly if he has had

his infusion recently. But the further out he is on his IVIG cycle, the

less protection he has, of course. So that's one thing to keep in mind

when responding to the situation (either yourself, or you and your docs).

BUT, I don't know if you saw my message to you the other day, about some

of the similarities and differences between CVID and XLA (and

similarities in treatments)? One of the differences I stated is that

people with XLA have an inexplicable susceptibility to (and then, an

inability to contain or completely eradicate) some viruses, and one of

those is a family of viruses called enteroviruses. sackie is an

enterovirus.

That doesn't mean you should panic, but it might be worth a call to the

on-call doc this weekend, just to see if/what he/she recommends (I would

call the immuno rather than the ped, unless your ped is really familiar

with both types of PIDs, because very few people outside the immunology

world know about the XLA-Enterovirus issue).

Generally, you would begin to see the vescicles on hands, feet, and in

the mouth, then the headache of the encephalitis/meningitis takes a

little while longer to develop, (if it is *going* to develop, because

that's not automatic... many people with PIDs, even XLA, have overcome

coxsackie, so don't get too upset). So, the neuro stuff usually appears

within days, sometimes weeks, though of course everyone's experience is

different.

I had enteroviral meningo-encephalitis about three years ago, after a

case of coxsackie I couldn't fight off completely. I got GI symptoms

(major diarrhea - to the tune of a 20+ lb weight loss in about 6 weeks),

at the same time the vescicles showed up on the palms of my hands. As

the next few weeks went on, I received high dose IVIG, to see if they

could kick this virus, because at the time, no one knew what they were

dealing with (this was before Enterovirus PCR tests were widely

available, so the type of infection was simply assumed based on my

symptoms, spinal tap cell counts, etc). But the diarrhea kept getting

worse, and about two weeks into it, I started to get excruciating

headaches. This prompted a number of neuro appointments, but no one

ever found anything obvious, other than to say that I almost certainly

had an enterovirus out of control in my GI system, and the virus was

probably causing bad headaches, like any virus would, only bigger. A

week after that, I was admitted to the hospital because I started having

seizures and started experiencing a problem called " expressive aphasia, "

which means that I knew exactly what I wanted to say, but couldn't get

it out, and it's very specific for certain kinds of brain damage, which

is the same place they believe the viral damage to my brain is that

causes the seizures (which are now very well controlled on meds). It

was very frustrating to me. I was treated symptomatically (because at

the time, that was the only option for enteroviruses -- symptomatic

treatment and high dose IVIG) -- and I got better to some extent (though

then had to gain back about 25lbs). Even though I really was getting

better all the time, when I entered med school I felt like my world was

out of control, because half the time I couldn't even talk to people

without having one of my embarrassing speech issues, and I used to get

myself so worried and stressed out (with comments to myself like, " how

can you be a doctor if you can't even communicate properly?! " ) that only

it made it worse. As time went on, and I healed, and I stopped getting

panicked every time it happened, it started to fade. So, my

intellectual skills returned, and then it was a matter of physical

ones.... though we took all the recommended ideas from the Infectious

Disease docs, etc., we never were able to completely eradicate the

infection in my nervous system, and I ended up with 5 more cases of

enteroviral encephalitis/meningitis in the next 18 months or so. At

that point, I was so frustrated, but by pure

luck/chance/fate/God/whatever, I was lead to an article about an

experimental medication to kill enteroviruses, especially in the nervous

system. I got an FDA waiver for a compassionate care use of the med,

and I took it for 10 days (3x/day, oral syrup), and (knock wood) I've

not had another case of this in almost 18 months. (Yeahhh!!!).

So, the point of this long-winded message is that - you probably will

NOT see encephalitis or meningitis as Chris' first symptom, if he really

does get coxsackie -- chances are, it would present as vescicles on the

palms and soles, ulcers in the mouth, and maybe GI upset. The neuro

issues usually show up later. But if starts to show any of these

symptoms for coxsackie, you really do need to call your doc, because

they might be able to set you up for a preventative mega-dose of IVIG,

to try to kick the virus before it takes hold systemically and in the

nervous system, or something else that might help contain the infection

-- I'm not sure what that might be, but there may be treatments I've not

heard of, since I haven't deal with this actively in the last 1.5 years.

The issue here is simply that if he has XLA, you want to avoid this

getting out of control by nipping it in the bud, because there's

significantly less protection against this particular virus for people

with XLA. If you knew for sure that had CVID, I would say there's

more room to wait and see what his body can do with it (though some docs

don't think that, so that's my opinion, which may or may not be correct,

especially since I'm not a doctor yet!), but unfortunately, you don't

know which underlying disease he has, so it's best to take a cautious approach.

I hope that the IVIG has protected him, though, and that he will not get

stuck with a nasty virus. I think you're probably all going to be fine,

but let us know if there's anything we can help with!

Take care,

[Guest guest]

Kimberley,

Thanks so much for the message. First of all, is overdue for his

IVIG. He was due Thursday, but it was the first day of school, so it was

bumped to this coming Tuesday. I did call Children's Hospital twice since

this all started. First when the sister first came down with

coxsackievirus - the Dr. said that his IVIG should protect him and he might

night even get it, but if he does, not to panic, it doesn't mean it will

lead to anything. They said they probably wouldn't do anything different

even if he did get it, just to watch him close and call if he gets severely

ill. Ok, then my neighbor felt better, we let our guard down because the

Dr. wasn't concerned and I now exposed my son to the younger brother, who

got sick hours after we were with him. That was one week ago Friday.

Within two days, he had signs of meningitis. That was a whole other story

of useless hospitals that know nothing. Needless to say, one week and three

hospitals later, he was diagnosed with meningitis. They feel it's viral,

but they won't know for sure until the cultures come back in a few days.

I called children's hospital this morning. The immunologist, (not mine, but

the one on call), was concerned. He said he was going to up his IVIG amount

from 400 - 500 just to give him an extra boost. He did mention the

seriousness of coxsacki in certain deficiencies. I asked how long before I

am out of the woods. He told be about 3 weeks since exposure. He said

meningitis is contagious. I asked about bacterial vs. viral. He said they

treat them the same as far as that is concerned. My neighbor said her son

is in isolation, they all have to wear masks and he is considered

contagious!

I can't imagine that I have to go through this terror forever! I think I

will have a nervous breakdown first. Then to top it off, I take my older

son to Karate last night, and my two other kids were playing (very close

contact) with a friends little boy. We no sooner walk in the door and she

calls to tell me he is burning up with fever! I can't win. Maybe it gets

easier after a few years of dealing with this, but I walk around thinking if

he gets sick, he will die. Even though, he made it 4 years without IVIG,

without knowing he even had a deficiency, I still panic. He started

Kindergarten Thursday, and I guess I will know within a few weeks if the

IVIG will protect him. I feel like he is a live experiment. I guess in a

way he is. I have notice from a lot of the messages on this site, that it

really depends on your diagnosis and each individual person as to how

healthy they become on IVIG.

My immuno at Children's has given us ZERO restrictions. That makes me

nervous. He said we could go to ball pits and everything. I asked him if I

should have the school nurse notify me of any exposure to the bigger stuff

like Chicken Pox etc. He said no, not necessary, that his IVIG will protect

him. Well, then why do so many people on this forum get sick through

IVIG??? Well, I did it anyway. The nurse will contact me if there is

anything going around. Just so I know what to pay attention to. (Not that

I'm not paying attention...probably too much at this point). It's amazing

at how different a response you can get from on Dr. to another. Not

necessary difference in facts, more so approach. One Dr. wants to know of

exposure, the other doesn't. Which one do I follow? At this point, it's my

own gut reaction that I follow. I figure, better to error on the side of

caution.

Oh, one more thing, I read in some archived messages that you can develop

aseptic meningitis from IVIG. Do you have any idea how common that is?

Just another thing for me to worry about. I'll add it to the list of about

4 million.

Thanks for listening.

Kim - Mom to Nick, (XLA?/CVID?) and

Re: Viral Meningitis

> Kim,

>

> I can't really think of any forms of viral meningitis that are passed

> from one person to another, without the underlying virus being

> responsible for the presenting symptoms, so I believe that you're

> correct in assuming that it usually arises from another viral infection

> and travels to the meninges and coating around the brain after it's not

> contained to its original site of infection and " escapes " into the

> bloodstream to go visiting to new and welcoming bodily nooks and

> crannies -- specifically, in this case, the nervous system.

>

> Is on IVIG? If so, he should have fairly decent protection

> against some viruses (including coxsackie), particularly if he has had

> his infusion recently. But the further out he is on his IVIG cycle, the

> less protection he has, of course. So that's one thing to keep in mind

> when responding to the situation (either yourself, or you and your docs).

>

> BUT, I don't know if you saw my message to you the other day, about some

> of the similarities and differences between CVID and XLA (and

> similarities in treatments)? One of the differences I stated is that

> people with XLA have an inexplicable susceptibility to (and then, an

> inability to contain or completely eradicate) some viruses, and one of

> those is a family of viruses called enteroviruses. sackie is an

> enterovirus.

>

> That doesn't mean you should panic, but it might be worth a call to the

> on-call doc this weekend, just to see if/what he/she recommends (I would

> call the immuno rather than the ped, unless your ped is really familiar

> with both types of PIDs, because very few people outside the immunology

> world know about the XLA-Enterovirus issue).

>

> Generally, you would begin to see the vescicles on hands, feet, and in

> the mouth, then the headache of the encephalitis/meningitis takes a

> little while longer to develop, (if it is *going* to develop, because

> that's not automatic... many people with PIDs, even XLA, have overcome

> coxsackie, so don't get too upset). So, the neuro stuff usually appears

> within days, sometimes weeks, though of course everyone's experience is

> different.

>

> I had enteroviral meningo-encephalitis about three years ago, after a

> case of coxsackie I couldn't fight off completely. I got GI symptoms

> (major diarrhea - to the tune of a 20+ lb weight loss in about 6 weeks),

> at the same time the vescicles showed up on the palms of my hands. As

> the next few weeks went on, I received high dose IVIG, to see if they

> could kick this virus, because at the time, no one knew what they were

> dealing with (this was before Enterovirus PCR tests were widely

> available, so the type of infection was simply assumed based on my

> symptoms, spinal tap cell counts, etc). But the diarrhea kept getting

> worse, and about two weeks into it, I started to get excruciating

> headaches. This prompted a number of neuro appointments, but no one

> ever found anything obvious, other than to say that I almost certainly

> had an enterovirus out of control in my GI system, and the virus was

> probably causing bad headaches, like any virus would, only bigger. A

> week after that, I was admitted to the hospital because I started having

> seizures and started experiencing a problem called " expressive aphasia, "

> which means that I knew exactly what I wanted to say, but couldn't get

> it out, and it's very specific for certain kinds of brain damage, which

> is the same place they believe the viral damage to my brain is that

> causes the seizures (which are now very well controlled on meds). It

> was very frustrating to me. I was treated symptomatically (because at

> the time, that was the only option for enteroviruses -- symptomatic

> treatment and high dose IVIG) -- and I got better to some extent (though

> then had to gain back about 25lbs). Even though I really was getting

> better all the time, when I entered med school I felt like my world was

> out of control, because half the time I couldn't even talk to people

> without having one of my embarrassing speech issues, and I used to get

> myself so worried and stressed out (with comments to myself like, " how

> can you be a doctor if you can't even communicate properly?! " ) that only

> it made it worse. As time went on, and I healed, and I stopped getting

> panicked every time it happened, it started to fade. So, my

> intellectual skills returned, and then it was a matter of physical

> ones.... though we took all the recommended ideas from the Infectious

> Disease docs, etc., we never were able to completely eradicate the

> infection in my nervous system, and I ended up with 5 more cases of

> enteroviral encephalitis/meningitis in the next 18 months or so. At

> that point, I was so frustrated, but by pure

> luck/chance/fate/God/whatever, I was lead to an article about an

> experimental medication to kill enteroviruses, especially in the nervous

> system. I got an FDA waiver for a compassionate care use of the med,

> and I took it for 10 days (3x/day, oral syrup), and (knock wood) I've

> not had another case of this in almost 18 months. (Yeahhh!!!).

>

> So, the point of this long-winded message is that - you probably will

> NOT see encephalitis or meningitis as Chris' first symptom, if he really

> does get coxsackie -- chances are, it would present as vescicles on the

> palms and soles, ulcers in the mouth, and maybe GI upset. The neuro

> issues usually show up later. But if starts to show any of these

> symptoms for coxsackie, you really do need to call your doc, because

> they might be able to set you up for a preventative mega-dose of IVIG,

> to try to kick the virus before it takes hold systemically and in the

> nervous system, or something else that might help contain the infection

> -- I'm not sure what that might be, but there may be treatments I've not

> heard of, since I haven't deal with this actively in the last 1.5 years.

> The issue here is simply that if he has XLA, you want to avoid this

> getting out of control by nipping it in the bud, because there's

> significantly less protection against this particular virus for people

> with XLA. If you knew for sure that had CVID, I would say there's

> more room to wait and see what his body can do with it (though some docs

> don't think that, so that's my opinion, which may or may not be correct,

> especially since I'm not a doctor yet!), but unfortunately, you don't

> know which underlying disease he has, so it's best to take a cautious

approach.

>

> I hope that the IVIG has protected him, though, and that he will not get

> stuck with a nasty virus. I think you're probably all going to be fine,

> but let us know if there's anything we can help with!

> Take care,

>

>

>

> 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.

>

>

[Guest guest]

Kimberley,

Thanks so much for the message. First of all, is overdue for his

IVIG. He was due Thursday, but it was the first day of school, so it was

bumped to this coming Tuesday. I did call Children's Hospital twice since

this all started. First when the sister first came down with

coxsackievirus - the Dr. said that his IVIG should protect him and he might

night even get it, but if he does, not to panic, it doesn't mean it will

lead to anything. They said they probably wouldn't do anything different

even if he did get it, just to watch him close and call if he gets severely

ill. Ok, then my neighbor felt better, we let our guard down because the

Dr. wasn't concerned and I now exposed my son to the younger brother, who

got sick hours after we were with him. That was one week ago Friday.

Within two days, he had signs of meningitis. That was a whole other story

of useless hospitals that know nothing. Needless to say, one week and three

hospitals later, he was diagnosed with meningitis. They feel it's viral,

but they won't know for sure until the cultures come back in a few days.

I called children's hospital this morning. The immunologist, (not mine, but

the one on call), was concerned. He said he was going to up his IVIG amount

from 400 - 500 just to give him an extra boost. He did mention the

seriousness of coxsacki in certain deficiencies. I asked how long before I

am out of the woods. He told be about 3 weeks since exposure. He said

meningitis is contagious. I asked about bacterial vs. viral. He said they

treat them the same as far as that is concerned. My neighbor said her son

is in isolation, they all have to wear masks and he is considered

contagious!

I can't imagine that I have to go through this terror forever! I think I

will have a nervous breakdown first. Then to top it off, I take my older

son to Karate last night, and my two other kids were playing (very close

contact) with a friends little boy. We no sooner walk in the door and she

calls to tell me he is burning up with fever! I can't win. Maybe it gets

easier after a few years of dealing with this, but I walk around thinking if

he gets sick, he will die. Even though, he made it 4 years without IVIG,

without knowing he even had a deficiency, I still panic. He started

Kindergarten Thursday, and I guess I will know within a few weeks if the

IVIG will protect him. I feel like he is a live experiment. I guess in a

way he is. I have notice from a lot of the messages on this site, that it

really depends on your diagnosis and each individual person as to how

healthy they become on IVIG.

My immuno at Children's has given us ZERO restrictions. That makes me

nervous. He said we could go to ball pits and everything. I asked him if I

should have the school nurse notify me of any exposure to the bigger stuff

like Chicken Pox etc. He said no, not necessary, that his IVIG will protect

him. Well, then why do so many people on this forum get sick through

IVIG??? Well, I did it anyway. The nurse will contact me if there is

anything going around. Just so I know what to pay attention to. (Not that

I'm not paying attention...probably too much at this point). It's amazing

at how different a response you can get from on Dr. to another. Not

necessary difference in facts, more so approach. One Dr. wants to know of

exposure, the other doesn't. Which one do I follow? At this point, it's my

own gut reaction that I follow. I figure, better to error on the side of

caution.

Oh, one more thing, I read in some archived messages that you can develop

aseptic meningitis from IVIG. Do you have any idea how common that is?

Just another thing for me to worry about. I'll add it to the list of about

4 million.

Thanks for listening.

Kim - Mom to Nick, (XLA?/CVID?) and

Re: Viral Meningitis

> Kim,

>

> I can't really think of any forms of viral meningitis that are passed

> from one person to another, without the underlying virus being

> responsible for the presenting symptoms, so I believe that you're

> correct in assuming that it usually arises from another viral infection

> and travels to the meninges and coating around the brain after it's not

> contained to its original site of infection and " escapes " into the

> bloodstream to go visiting to new and welcoming bodily nooks and

> crannies -- specifically, in this case, the nervous system.

>

> Is on IVIG? If so, he should have fairly decent protection

> against some viruses (including coxsackie), particularly if he has had

> his infusion recently. But the further out he is on his IVIG cycle, the

> less protection he has, of course. So that's one thing to keep in mind

> when responding to the situation (either yourself, or you and your docs).

>

> BUT, I don't know if you saw my message to you the other day, about some

> of the similarities and differences between CVID and XLA (and

> similarities in treatments)? One of the differences I stated is that

> people with XLA have an inexplicable susceptibility to (and then, an

> inability to contain or completely eradicate) some viruses, and one of

> those is a family of viruses called enteroviruses. sackie is an

> enterovirus.

>

> That doesn't mean you should panic, but it might be worth a call to the

> on-call doc this weekend, just to see if/what he/she recommends (I would

> call the immuno rather than the ped, unless your ped is really familiar

> with both types of PIDs, because very few people outside the immunology

> world know about the XLA-Enterovirus issue).

>

> Generally, you would begin to see the vescicles on hands, feet, and in

> the mouth, then the headache of the encephalitis/meningitis takes a

> little while longer to develop, (if it is *going* to develop, because

> that's not automatic... many people with PIDs, even XLA, have overcome

> coxsackie, so don't get too upset). So, the neuro stuff usually appears

> within days, sometimes weeks, though of course everyone's experience is

> different.

>

> I had enteroviral meningo-encephalitis about three years ago, after a

> case of coxsackie I couldn't fight off completely. I got GI symptoms

> (major diarrhea - to the tune of a 20+ lb weight loss in about 6 weeks),

> at the same time the vescicles showed up on the palms of my hands. As

> the next few weeks went on, I received high dose IVIG, to see if they

> could kick this virus, because at the time, no one knew what they were

> dealing with (this was before Enterovirus PCR tests were widely

> available, so the type of infection was simply assumed based on my

> symptoms, spinal tap cell counts, etc). But the diarrhea kept getting

> worse, and about two weeks into it, I started to get excruciating

> headaches. This prompted a number of neuro appointments, but no one

> ever found anything obvious, other than to say that I almost certainly

> had an enterovirus out of control in my GI system, and the virus was

> probably causing bad headaches, like any virus would, only bigger. A

> week after that, I was admitted to the hospital because I started having

> seizures and started experiencing a problem called " expressive aphasia, "

> which means that I knew exactly what I wanted to say, but couldn't get

> it out, and it's very specific for certain kinds of brain damage, which

> is the same place they believe the viral damage to my brain is that

> causes the seizures (which are now very well controlled on meds). It

> was very frustrating to me. I was treated symptomatically (because at

> the time, that was the only option for enteroviruses -- symptomatic

> treatment and high dose IVIG) -- and I got better to some extent (though

> then had to gain back about 25lbs). Even though I really was getting

> better all the time, when I entered med school I felt like my world was

> out of control, because half the time I couldn't even talk to people

> without having one of my embarrassing speech issues, and I used to get

> myself so worried and stressed out (with comments to myself like, " how

> can you be a doctor if you can't even communicate properly?! " ) that only

> it made it worse. As time went on, and I healed, and I stopped getting

> panicked every time it happened, it started to fade. So, my

> intellectual skills returned, and then it was a matter of physical

> ones.... though we took all the recommended ideas from the Infectious

> Disease docs, etc., we never were able to completely eradicate the

> infection in my nervous system, and I ended up with 5 more cases of

> enteroviral encephalitis/meningitis in the next 18 months or so. At

> that point, I was so frustrated, but by pure

> luck/chance/fate/God/whatever, I was lead to an article about an

> experimental medication to kill enteroviruses, especially in the nervous

> system. I got an FDA waiver for a compassionate care use of the med,

> and I took it for 10 days (3x/day, oral syrup), and (knock wood) I've

> not had another case of this in almost 18 months. (Yeahhh!!!).

>

> So, the point of this long-winded message is that - you probably will

> NOT see encephalitis or meningitis as Chris' first symptom, if he really

> does get coxsackie -- chances are, it would present as vescicles on the

> palms and soles, ulcers in the mouth, and maybe GI upset. The neuro

> issues usually show up later. But if starts to show any of these

> symptoms for coxsackie, you really do need to call your doc, because

> they might be able to set you up for a preventative mega-dose of IVIG,

> to try to kick the virus before it takes hold systemically and in the

> nervous system, or something else that might help contain the infection

> -- I'm not sure what that might be, but there may be treatments I've not

> heard of, since I haven't deal with this actively in the last 1.5 years.

> The issue here is simply that if he has XLA, you want to avoid this

> getting out of control by nipping it in the bud, because there's

> significantly less protection against this particular virus for people

> with XLA. If you knew for sure that had CVID, I would say there's

> more room to wait and see what his body can do with it (though some docs

> don't think that, so that's my opinion, which may or may not be correct,

> especially since I'm not a doctor yet!), but unfortunately, you don't

> know which underlying disease he has, so it's best to take a cautious

approach.

>

> I hope that the IVIG has protected him, though, and that he will not get

> stuck with a nasty virus. I think you're probably all going to be fine,

> but let us know if there's anything we can help with!

> Take care,

>

>

>

> 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.

>

>

[Guest guest]

Kim,

We get different responses from different doctors as well. It's really

difficult when you want concrete answers and can't get them from anyone. Our

immuno is great but the residents that we see before he comes in are always

saying one thing and then I check w/ the immuno and he always agrees w/ me

and disagrees w/ the resident. What hospital are you at? We are at

Cincinnati Children's. So far so good.

Grace 8/97 (IgA deficiency, poor t-cell response, poor pneumococcal

antibodies, EA's, recent adenoidectomy, resolving almost total hair loss,

penicillin allergy)

Caelan 8/99 ((IgA deficiency, poor t-cell response, poor pneumococcal

antibodies,eosinophilic esophagitis, GERD, anaphylaxis milk , egg, peanut,

Biaxin, allergy to tomato, peas, carrots, squash, penicillin, EA's,

adenoidectomy)

[Guest guest]

Kim,

We get different responses from different doctors as well. It's really

difficult when you want concrete answers and can't get them from anyone. Our

immuno is great but the residents that we see before he comes in are always

saying one thing and then I check w/ the immuno and he always agrees w/ me

and disagrees w/ the resident. What hospital are you at? We are at

Cincinnati Children's. So far so good.

Grace 8/97 (IgA deficiency, poor t-cell response, poor pneumococcal

antibodies, EA's, recent adenoidectomy, resolving almost total hair loss,

penicillin allergy)

Caelan 8/99 ((IgA deficiency, poor t-cell response, poor pneumococcal

antibodies,eosinophilic esophagitis, GERD, anaphylaxis milk , egg, peanut,

Biaxin, allergy to tomato, peas, carrots, squash, penicillin, EA's,

adenoidectomy)

[Guest guest]

We are going to Children's Hospital in Philadelphia. I am in New Jersey.

The immuno seems okay (I've only seen him twice so far), but a little casual

about things. Maybe because this is old hat for him, but not for me. Not

that I want an alarmist either, I don't. He does seem very thorough and

answers all my questions (and I have lot's of questions...)

Kim - Mom to Nick, (XLA?/CVID?) and

Re: Viral Meningitis

> Kim,

>

> We get different responses from different doctors as well. It's really

> difficult when you want concrete answers and can't get them from anyone.

Our

> immuno is great but the residents that we see before he comes in are

always

> saying one thing and then I check w/ the immuno and he always agrees w/ me

> and disagrees w/ the resident. What hospital are you at? We are at

> Cincinnati Children's. So far so good.

>

>

> Grace 8/97 (IgA deficiency, poor t-cell response, poor pneumococcal

> antibodies, EA's, recent adenoidectomy, resolving almost total hair loss,

> penicillin allergy)

> Caelan 8/99 ((IgA deficiency, poor t-cell response, poor pneumococcal

> antibodies,eosinophilic esophagitis, GERD, anaphylaxis milk , egg, peanut,

> Biaxin, allergy to tomato, peas, carrots, squash, penicillin, EA's,

> adenoidectomy)

>

>

>

> 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.

>

>

[Guest guest]

We are going to Children's Hospital in Philadelphia. I am in New Jersey.

The immuno seems okay (I've only seen him twice so far), but a little casual

about things. Maybe because this is old hat for him, but not for me. Not

that I want an alarmist either, I don't. He does seem very thorough and

answers all my questions (and I have lot's of questions...)

Kim - Mom to Nick, (XLA?/CVID?) and

Re: Viral Meningitis

> Kim,

>

> We get different responses from different doctors as well. It's really

> difficult when you want concrete answers and can't get them from anyone.

Our

> immuno is great but the residents that we see before he comes in are

always

> saying one thing and then I check w/ the immuno and he always agrees w/ me

> and disagrees w/ the resident. What hospital are you at? We are at

> Cincinnati Children's. So far so good.

>

>

> Grace 8/97 (IgA deficiency, poor t-cell response, poor pneumococcal

> antibodies, EA's, recent adenoidectomy, resolving almost total hair loss,

> penicillin allergy)

> Caelan 8/99 ((IgA deficiency, poor t-cell response, poor pneumococcal

> antibodies,eosinophilic esophagitis, GERD, anaphylaxis milk , egg, peanut,

> Biaxin, allergy to tomato, peas, carrots, squash, penicillin, EA's,

> adenoidectomy)

>

>

>

> 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.

>

>

[Guest guest]

Every time I thought I was on the last thread and if one more thing

happened, I was going to have a breakdown, I would find that I was stronger

than I had thought or that God provided the strength I needed when I needed

it. Of course, there was more than one time when I hid myself and cried my

heart out. That's allowed.

With 's diagnosis came such a mix of emotions. Relief from knowing

what was wrong with him. Sorrow that it wasn't just a string of unrelated

illnesses and exposures. Terror and grief at the thought of what might

happen. That was the worst. Then I realized that I was tearing myself up

over what *might* happen. There I was, grieving and fearing about

something that hadn't happened yet, and, by the grace of God, still hasn't

happened. My grief and terror didn't and doesn't change anything. If I

dwell on what *might* happen, I still get those terrible feelings. But

when I go day by day - how is feeling *today*?; is he coughing

*today*?; is his nose bleeding *today*? - boy, does it make life easier on

me emotionally. When I know he has been exposed to something, I really

work to take a " wait and see " attitude. It is so much easier that trying

to hide my fears from my child for 3 days, or a week or 21 days.

My mom came down with shingles recently. Although shingles is not SUPPOSED

to be very contagious, since two ladies from her church have recently

recovered from them, we are suspecting that this is a more contagious

variety. We know that has been exposed (he spent the night at

Grandma's the night before she broke out and fell asleep next to her). If

this had happened in the beginning, I wouldn't be able to sleep at night.

I'd be checking him every couple of hours. And then, if he DID get it, I'd

be worn out even before we got started.

I know I'm just kind of rambling. What I really want to suggest to anyone

who is not already doing this (and to remind myself, as well) is to take it

one day at a time. When we jump into the future, we just create more

stress for ourselves.

I'm glad that you are following your gut feelings. I'm very lucky in that

our family doctor listens to me. He really respects the " mother's

instinct " . You've known longer and better than anyone else. You are

his first defense, and it sounds like he's got a good one.

God bless,

Wenoka (AMY, Sam-Hyper IgM, Christi)

At 01:32 PM 09/08/2001 -0400, you wrote:

>Kimberley,

>

>Thanks so much for the message. First of all, is overdue for his

>IVIG. He was due Thursday, but it was the first day of school, so it was

>bumped to this coming Tuesday. I did call Children's Hospital twice since

>this all started. First when the sister first came down with

>coxsackievirus - the Dr. said that his IVIG should protect him and he might

>night even get it, but if he does, not to panic, it doesn't mean it will

>lead to anything. They said they probably wouldn't do anything different

>even if he did get it, just to watch him close and call if he gets severely

>ill. Ok, then my neighbor felt better, we let our guard down because the

>Dr. wasn't concerned and I now exposed my son to the younger brother, who

>got sick hours after we were with him. That was one week ago Friday.

>Within two days, he had signs of meningitis. That was a whole other story

>of useless hospitals that know nothing. Needless to say, one week and three

>hospitals later, he was diagnosed with meningitis. They feel it's viral,

>but they won't know for sure until the cultures come back in a few days.

>

>I called children's hospital this morning. The immunologist, (not mine, but

>the one on call), was concerned. He said he was going to up his IVIG amount

>from 400 - 500 just to give him an extra boost. He did mention the

>seriousness of coxsacki in certain deficiencies. I asked how long before I

>am out of the woods. He told be about 3 weeks since exposure. He said

>meningitis is contagious. I asked about bacterial vs. viral. He said they

>treat them the same as far as that is concerned. My neighbor said her son

>is in isolation, they all have to wear masks and he is considered

>contagious!

>

>I can't imagine that I have to go through this terror forever! I think I

>will have a nervous breakdown first. Then to top it off, I take my older

>son to Karate last night, and my two other kids were playing (very close

>contact) with a friends little boy. We no sooner walk in the door and she

>calls to tell me he is burning up with fever! I can't win. Maybe it gets

>easier after a few years of dealing with this, but I walk around thinking if

>he gets sick, he will die. Even though, he made it 4 years without IVIG,

>without knowing he even had a deficiency, I still panic. He started

>Kindergarten Thursday, and I guess I will know within a few weeks if the

>IVIG will protect him. I feel like he is a live experiment. I guess in a

>way he is. I have notice from a lot of the messages on this site, that it

>really depends on your diagnosis and each individual person as to how

>healthy they become on IVIG.

>

>My immuno at Children's has given us ZERO restrictions. That makes me

>nervous. He said we could go to ball pits and everything. I asked him if I

>should have the school nurse notify me of any exposure to the bigger stuff

>like Chicken Pox etc. He said no, not necessary, that his IVIG will protect

>him. Well, then why do so many people on this forum get sick through

>IVIG??? Well, I did it anyway. The nurse will contact me if there is

>anything going around. Just so I know what to pay attention to. (Not that

>I'm not paying attention...probably too much at this point). It's amazing

>at how different a response you can get from on Dr. to another. Not

>necessary difference in facts, more so approach. One Dr. wants to know of

>exposure, the other doesn't. Which one do I follow? At this point, it's my

>own gut reaction that I follow. I figure, better to error on the side of

>caution.

>

>Oh, one more thing, I read in some archived messages that you can develop

>aseptic meningitis from IVIG. Do you have any idea how common that is?

>Just another thing for me to worry about. I'll add it to the list of about

>4 million.

>

>Thanks for listening.

>

>Kim - Mom to Nick, (XLA?/CVID?) and

>

>

>

> Re: Viral Meningitis

>

>

>> Kim,

>>

>> I can't really think of any forms of viral meningitis that are passed

>> from one person to another, without the underlying virus being

>> responsible for the presenting symptoms, so I believe that you're

>> correct in assuming that it usually arises from another viral infection

>> and travels to the meninges and coating around the brain after it's not

>> contained to its original site of infection and " escapes " into the

>> bloodstream to go visiting to new and welcoming bodily nooks and

>> crannies -- specifically, in this case, the nervous system.

>>

>> Is on IVIG? If so, he should have fairly decent protection

>> against some viruses (including coxsackie), particularly if he has had

>> his infusion recently. But the further out he is on his IVIG cycle, the

>> less protection he has, of course. So that's one thing to keep in mind

>> when responding to the situation (either yourself, or you and your docs).

>>

>> BUT, I don't know if you saw my message to you the other day, about some

>> of the similarities and differences between CVID and XLA (and

>> similarities in treatments)? One of the differences I stated is that

>> people with XLA have an inexplicable susceptibility to (and then, an

>> inability to contain or completely eradicate) some viruses, and one of

>> those is a family of viruses called enteroviruses. sackie is an

>> enterovirus.

>>

>> That doesn't mean you should panic, but it might be worth a call to the

>> on-call doc this weekend, just to see if/what he/she recommends (I would

>> call the immuno rather than the ped, unless your ped is really familiar

>> with both types of PIDs, because very few people outside the immunology

>> world know about the XLA-Enterovirus issue).

>>

>> Generally, you would begin to see the vescicles on hands, feet, and in

>> the mouth, then the headache of the encephalitis/meningitis takes a

>> little while longer to develop, (if it is *going* to develop, because

>> that's not automatic... many people with PIDs, even XLA, have overcome

>> coxsackie, so don't get too upset). So, the neuro stuff usually appears

>> within days, sometimes weeks, though of course everyone's experience is

>> different.

>>

>> I had enteroviral meningo-encephalitis about three years ago, after a

>> case of coxsackie I couldn't fight off completely. I got GI symptoms

>> (major diarrhea - to the tune of a 20+ lb weight loss in about 6 weeks),

>> at the same time the vescicles showed up on the palms of my hands. As

>> the next few weeks went on, I received high dose IVIG, to see if they

>> could kick this virus, because at the time, no one knew what they were

>> dealing with (this was before Enterovirus PCR tests were widely

>> available, so the type of infection was simply assumed based on my

>> symptoms, spinal tap cell counts, etc). But the diarrhea kept getting

>> worse, and about two weeks into it, I started to get excruciating

>> headaches. This prompted a number of neuro appointments, but no one

>> ever found anything obvious, other than to say that I almost certainly

>> had an enterovirus out of control in my GI system, and the virus was

>> probably causing bad headaches, like any virus would, only bigger. A

>> week after that, I was admitted to the hospital because I started having

>> seizures and started experiencing a problem called " expressive aphasia, "

>> which means that I knew exactly what I wanted to say, but couldn't get

>> it out, and it's very specific for certain kinds of brain damage, which

>> is the same place they believe the viral damage to my brain is that

>> causes the seizures (which are now very well controlled on meds). It

>> was very frustrating to me. I was treated symptomatically (because at

>> the time, that was the only option for enteroviruses -- symptomatic

>> treatment and high dose IVIG) -- and I got better to some extent (though

>> then had to gain back about 25lbs). Even though I really was getting

>> better all the time, when I entered med school I felt like my world was

>> out of control, because half the time I couldn't even talk to people

>> without having one of my embarrassing speech issues, and I used to get

>> myself so worried and stressed out (with comments to myself like, " how

>> can you be a doctor if you can't even communicate properly?! " ) that only

>> it made it worse. As time went on, and I healed, and I stopped getting

>> panicked every time it happened, it started to fade. So, my

>> intellectual skills returned, and then it was a matter of physical

>> ones.... though we took all the recommended ideas from the Infectious

>> Disease docs, etc., we never were able to completely eradicate the

>> infection in my nervous system, and I ended up with 5 more cases of

>> enteroviral encephalitis/meningitis in the next 18 months or so. At

>> that point, I was so frustrated, but by pure

>> luck/chance/fate/God/whatever, I was lead to an article about an

>> experimental medication to kill enteroviruses, especially in the nervous

>> system. I got an FDA waiver for a compassionate care use of the med,

>> and I took it for 10 days (3x/day, oral syrup), and (knock wood) I've

>> not had another case of this in almost 18 months. (Yeahhh!!!).

>>

>> So, the point of this long-winded message is that - you probably will

>> NOT see encephalitis or meningitis as Chris' first symptom, if he really

>> does get coxsackie -- chances are, it would present as vescicles on the

>> palms and soles, ulcers in the mouth, and maybe GI upset. The neuro

>> issues usually show up later. But if starts to show any of these

>> symptoms for coxsackie, you really do need to call your doc, because

>> they might be able to set you up for a preventative mega-dose of IVIG,

>> to try to kick the virus before it takes hold systemically and in the

>> nervous system, or something else that might help contain the infection

>> -- I'm not sure what that might be, but there may be treatments I've not

>> heard of, since I haven't deal with this actively in the last 1.5 years.

>> The issue here is simply that if he has XLA, you want to avoid this

>> getting out of control by nipping it in the bud, because there's

>> significantly less protection against this particular virus for people

>> with XLA. If you knew for sure that had CVID, I would say there's

>> more room to wait and see what his body can do with it (though some docs

>> don't think that, so that's my opinion, which may or may not be correct,

>> especially since I'm not a doctor yet!), but unfortunately, you don't

>> know which underlying disease he has, so it's best to take a cautious

>approach.

>>

>> I hope that the IVIG has protected him, though, and that he will not get

>> stuck with a nasty virus. I think you're probably all going to be fine,

>> but let us know if there's anything we can help with!

>> Take care,

>>

>>

>>

>> 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.

>>

>>

[Guest guest]

Wenoka

Thanks for the advise. I can relate completely to the worry of might

happen. I am trying to come to terms with all of this. When this all first

started coming together, (he got a severe virus that landing him in the

hospital in May and was diagnosed with a PID in July). My husband kept

saying, " Its nothing, he will be fine " . That's the wrong thing to say to a

mother who's instincts are saying otherwise. As a matter of fact, I think

he refused to accept the potential enormity of this until our first IVIG

treatment at Children's Hospital. He went downstairs with the other parents

to get lunch and found out that the other mother lost two children to XLA.

One was an infant, one was four. He was horrified! That was when he really

started asking me questions and started to accept delivery on the diagnosis.

I also met a women while getting IVIG who's son had XLA and developed polio

from his vaccine. Well I won't go into the long story in detail, but in

short, when was 2 months old and perfectly healthy, I saw an episode

of Dateline that warned parents of the potential dangers of live Polio. I

went to my Ped and refused the live version and insisted on the dead virus.

He gave me a hassle but I stuck to my guns. Well, now five years later, I

found out that that live immunization would have very likely infected him

with polio. (Talking about feeling like someone is watching over me!!!)

And by the way, we left that pediatrician...

Sorry, I didn't mean to ramble. But your advise is good. I am trying to

take it one day at a time. And I have also learned in a very short time

that " I " am his best advocate. I have done lots of research and this site

has been wonderful and a big help. I will never stop researching on my own

and asking tons of questions. The more I know, the better I can take care

of him.

Thanks for listening.

Kim - Mom to Nick, (XLA?/CVID?) and

Re: Viral Meningitis

> >

> >

> >> Kim,

> >>

> >> I can't really think of any forms of viral meningitis that are passed

> >> from one person to another, without the underlying virus being

> >> responsible for the presenting symptoms, so I believe that you're

> >> correct in assuming that it usually arises from another viral infection

> >> and travels to the meninges and coating around the brain after it's not

> >> contained to its original site of infection and " escapes " into the

> >> bloodstream to go visiting to new and welcoming bodily nooks and

> >> crannies -- specifically, in this case, the nervous system.

> >>

> >> Is on IVIG? If so, he should have fairly decent protection

> >> against some viruses (including coxsackie), particularly if he has had

> >> his infusion recently. But the further out he is on his IVIG cycle,

the

> >> less protection he has, of course. So that's one thing to keep in mind

> >> when responding to the situation (either yourself, or you and your

docs).

> >>

> >> BUT, I don't know if you saw my message to you the other day, about

some

> >> of the similarities and differences between CVID and XLA (and

> >> similarities in treatments)? One of the differences I stated is that

> >> people with XLA have an inexplicable susceptibility to (and then, an

> >> inability to contain or completely eradicate) some viruses, and one of

> >> those is a family of viruses called enteroviruses. sackie is an

> >> enterovirus.

> >>

> >> That doesn't mean you should panic, but it might be worth a call to the

> >> on-call doc this weekend, just to see if/what he/she recommends (I

would

> >> call the immuno rather than the ped, unless your ped is really familiar

> >> with both types of PIDs, because very few people outside the immunology

> >> world know about the XLA-Enterovirus issue).

> >>

> >> Generally, you would begin to see the vescicles on hands, feet, and in

> >> the mouth, then the headache of the encephalitis/meningitis takes a

> >> little while longer to develop, (if it is *going* to develop, because

> >> that's not automatic... many people with PIDs, even XLA, have overcome

> >> coxsackie, so don't get too upset). So, the neuro stuff usually

appears

> >> within days, sometimes weeks, though of course everyone's experience is

> >> different.

> >>

> >> I had enteroviral meningo-encephalitis about three years ago, after a

> >> case of coxsackie I couldn't fight off completely. I got GI symptoms

> >> (major diarrhea - to the tune of a 20+ lb weight loss in about 6

weeks),

> >> at the same time the vescicles showed up on the palms of my hands. As

> >> the next few weeks went on, I received high dose IVIG, to see if they

> >> could kick this virus, because at the time, no one knew what they were

> >> dealing with (this was before Enterovirus PCR tests were widely

> >> available, so the type of infection was simply assumed based on my

> >> symptoms, spinal tap cell counts, etc). But the diarrhea kept getting

> >> worse, and about two weeks into it, I started to get excruciating

> >> headaches. This prompted a number of neuro appointments, but no one

> >> ever found anything obvious, other than to say that I almost certainly

> >> had an enterovirus out of control in my GI system, and the virus was

> >> probably causing bad headaches, like any virus would, only bigger. A

> >> week after that, I was admitted to the hospital because I started

having

> >> seizures and started experiencing a problem called " expressive

aphasia, "

> >> which means that I knew exactly what I wanted to say, but couldn't get

> >> it out, and it's very specific for certain kinds of brain damage, which

> >> is the same place they believe the viral damage to my brain is that

> >> causes the seizures (which are now very well controlled on meds). It

> >> was very frustrating to me. I was treated symptomatically (because at

> >> the time, that was the only option for enteroviruses -- symptomatic

> >> treatment and high dose IVIG) -- and I got better to some extent

(though

> >> then had to gain back about 25lbs). Even though I really was getting

> >> better all the time, when I entered med school I felt like my world was

> >> out of control, because half the time I couldn't even talk to people

> >> without having one of my embarrassing speech issues, and I used to get

> >> myself so worried and stressed out (with comments to myself like, " how

> >> can you be a doctor if you can't even communicate properly?! " ) that

only

> >> it made it worse. As time went on, and I healed, and I stopped getting

> >> panicked every time it happened, it started to fade. So, my

> >> intellectual skills returned, and then it was a matter of physical

> >> ones.... though we took all the recommended ideas from the Infectious

> >> Disease docs, etc., we never were able to completely eradicate the

> >> infection in my nervous system, and I ended up with 5 more cases of

> >> enteroviral encephalitis/meningitis in the next 18 months or so. At

> >> that point, I was so frustrated, but by pure

> >> luck/chance/fate/God/whatever, I was lead to an article about an

> >> experimental medication to kill enteroviruses, especially in the

nervous

> >> system. I got an FDA waiver for a compassionate care use of the med,

> >> and I took it for 10 days (3x/day, oral syrup), and (knock wood) I've

> >> not had another case of this in almost 18 months. (Yeahhh!!!).

> >>

> >> So, the point of this long-winded message is that - you probably will

> >> NOT see encephalitis or meningitis as Chris' first symptom, if he

really

> >> does get coxsackie -- chances are, it would present as vescicles on the

> >> palms and soles, ulcers in the mouth, and maybe GI upset. The neuro

> >> issues usually show up later. But if starts to show any of these

> >> symptoms for coxsackie, you really do need to call your doc, because

> >> they might be able to set you up for a preventative mega-dose of IVIG,

> >> to try to kick the virus before it takes hold systemically and in the

> >> nervous system, or something else that might help contain the infection

> >> -- I'm not sure what that might be, but there may be treatments I've

not

> >> heard of, since I haven't deal with this actively in the last 1.5

years.

> >> The issue here is simply that if he has XLA, you want to avoid this

> >> getting out of control by nipping it in the bud, because there's

> >> significantly less protection against this particular virus for people

> >> with XLA. If you knew for sure that had CVID, I would say

there's

> >> more room to wait and see what his body can do with it (though some

docs

> >> don't think that, so that's my opinion, which may or may not be

correct,

> >> especially since I'm not a doctor yet!), but unfortunately, you don't

> >> know which underlying disease he has, so it's best to take a cautious

> >approach.

> >>

> >> I hope that the IVIG has protected him, though, and that he will not

get

> >> stuck with a nasty virus. I think you're probably all going to be

fine,

> >> but let us know if there's anything we can help with!

> >> Take care,

> >>

> >>

> >>

> >> 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.

> >>

> >>

[Guest guest]

Wenoka

Thanks for the advise. I can relate completely to the worry of might

happen. I am trying to come to terms with all of this. When this all first

started coming together, (he got a severe virus that landing him in the

hospital in May and was diagnosed with a PID in July). My husband kept

saying, " Its nothing, he will be fine " . That's the wrong thing to say to a

mother who's instincts are saying otherwise. As a matter of fact, I think

he refused to accept the potential enormity of this until our first IVIG

treatment at Children's Hospital. He went downstairs with the other parents

to get lunch and found out that the other mother lost two children to XLA.

One was an infant, one was four. He was horrified! That was when he really

started asking me questions and started to accept delivery on the diagnosis.

I also met a women while getting IVIG who's son had XLA and developed polio

from his vaccine. Well I won't go into the long story in detail, but in

short, when was 2 months old and perfectly healthy, I saw an episode

of Dateline that warned parents of the potential dangers of live Polio. I

went to my Ped and refused the live version and insisted on the dead virus.

He gave me a hassle but I stuck to my guns. Well, now five years later, I

found out that that live immunization would have very likely infected him

with polio. (Talking about feeling like someone is watching over me!!!)

And by the way, we left that pediatrician...

Sorry, I didn't mean to ramble. But your advise is good. I am trying to

take it one day at a time. And I have also learned in a very short time

that " I " am his best advocate. I have done lots of research and this site

has been wonderful and a big help. I will never stop researching on my own

and asking tons of questions. The more I know, the better I can take care

of him.

Thanks for listening.

Kim - Mom to Nick, (XLA?/CVID?) and

Re: Viral Meningitis

> >

> >

> >> Kim,

> >>

> >> I can't really think of any forms of viral meningitis that are passed

> >> from one person to another, without the underlying virus being

> >> responsible for the presenting symptoms, so I believe that you're

> >> correct in assuming that it usually arises from another viral infection

> >> and travels to the meninges and coating around the brain after it's not

> >> contained to its original site of infection and " escapes " into the

> >> bloodstream to go visiting to new and welcoming bodily nooks and

> >> crannies -- specifically, in this case, the nervous system.

> >>

> >> Is on IVIG? If so, he should have fairly decent protection

> >> against some viruses (including coxsackie), particularly if he has had

> >> his infusion recently. But the further out he is on his IVIG cycle,

the

> >> less protection he has, of course. So that's one thing to keep in mind

> >> when responding to the situation (either yourself, or you and your

docs).

> >>

> >> BUT, I don't know if you saw my message to you the other day, about

some

> >> of the similarities and differences between CVID and XLA (and

> >> similarities in treatments)? One of the differences I stated is that

> >> people with XLA have an inexplicable susceptibility to (and then, an

> >> inability to contain or completely eradicate) some viruses, and one of

> >> those is a family of viruses called enteroviruses. sackie is an

> >> enterovirus.

> >>

> >> That doesn't mean you should panic, but it might be worth a call to the

> >> on-call doc this weekend, just to see if/what he/she recommends (I

would

> >> call the immuno rather than the ped, unless your ped is really familiar

> >> with both types of PIDs, because very few people outside the immunology

> >> world know about the XLA-Enterovirus issue).

> >>

> >> Generally, you would begin to see the vescicles on hands, feet, and in

> >> the mouth, then the headache of the encephalitis/meningitis takes a

> >> little while longer to develop, (if it is *going* to develop, because

> >> that's not automatic... many people with PIDs, even XLA, have overcome

> >> coxsackie, so don't get too upset). So, the neuro stuff usually

appears

> >> within days, sometimes weeks, though of course everyone's experience is

> >> different.

> >>

> >> I had enteroviral meningo-encephalitis about three years ago, after a

> >> case of coxsackie I couldn't fight off completely. I got GI symptoms

> >> (major diarrhea - to the tune of a 20+ lb weight loss in about 6

weeks),

> >> at the same time the vescicles showed up on the palms of my hands. As

> >> the next few weeks went on, I received high dose IVIG, to see if they

> >> could kick this virus, because at the time, no one knew what they were

> >> dealing with (this was before Enterovirus PCR tests were widely

> >> available, so the type of infection was simply assumed based on my

> >> symptoms, spinal tap cell counts, etc). But the diarrhea kept getting

> >> worse, and about two weeks into it, I started to get excruciating

> >> headaches. This prompted a number of neuro appointments, but no one

> >> ever found anything obvious, other than to say that I almost certainly

> >> had an enterovirus out of control in my GI system, and the virus was

> >> probably causing bad headaches, like any virus would, only bigger. A

> >> week after that, I was admitted to the hospital because I started

having

> >> seizures and started experiencing a problem called " expressive

aphasia, "

> >> which means that I knew exactly what I wanted to say, but couldn't get

> >> it out, and it's very specific for certain kinds of brain damage, which

> >> is the same place they believe the viral damage to my brain is that

> >> causes the seizures (which are now very well controlled on meds). It

> >> was very frustrating to me. I was treated symptomatically (because at

> >> the time, that was the only option for enteroviruses -- symptomatic

> >> treatment and high dose IVIG) -- and I got better to some extent

(though

> >> then had to gain back about 25lbs). Even though I really was getting

> >> better all the time, when I entered med school I felt like my world was

> >> out of control, because half the time I couldn't even talk to people

> >> without having one of my embarrassing speech issues, and I used to get

> >> myself so worried and stressed out (with comments to myself like, " how

> >> can you be a doctor if you can't even communicate properly?! " ) that

only

> >> it made it worse. As time went on, and I healed, and I stopped getting

> >> panicked every time it happened, it started to fade. So, my

> >> intellectual skills returned, and then it was a matter of physical

> >> ones.... though we took all the recommended ideas from the Infectious

> >> Disease docs, etc., we never were able to completely eradicate the

> >> infection in my nervous system, and I ended up with 5 more cases of

> >> enteroviral encephalitis/meningitis in the next 18 months or so. At

> >> that point, I was so frustrated, but by pure

> >> luck/chance/fate/God/whatever, I was lead to an article about an

> >> experimental medication to kill enteroviruses, especially in the

nervous

> >> system. I got an FDA waiver for a compassionate care use of the med,

> >> and I took it for 10 days (3x/day, oral syrup), and (knock wood) I've

> >> not had another case of this in almost 18 months. (Yeahhh!!!).

> >>

> >> So, the point of this long-winded message is that - you probably will

> >> NOT see encephalitis or meningitis as Chris' first symptom, if he

really

> >> does get coxsackie -- chances are, it would present as vescicles on the

> >> palms and soles, ulcers in the mouth, and maybe GI upset. The neuro

> >> issues usually show up later. But if starts to show any of these

> >> symptoms for coxsackie, you really do need to call your doc, because

> >> they might be able to set you up for a preventative mega-dose of IVIG,

> >> to try to kick the virus before it takes hold systemically and in the

> >> nervous system, or something else that might help contain the infection

> >> -- I'm not sure what that might be, but there may be treatments I've

not

> >> heard of, since I haven't deal with this actively in the last 1.5

years.

> >> The issue here is simply that if he has XLA, you want to avoid this

> >> getting out of control by nipping it in the bud, because there's

> >> significantly less protection against this particular virus for people

> >> with XLA. If you knew for sure that had CVID, I would say

there's

> >> more room to wait and see what his body can do with it (though some

docs

> >> don't think that, so that's my opinion, which may or may not be

correct,

> >> especially since I'm not a doctor yet!), but unfortunately, you don't

> >> know which underlying disease he has, so it's best to take a cautious

> >approach.

> >>

> >> I hope that the IVIG has protected him, though, and that he will not

get

> >> stuck with a nasty virus. I think you're probably all going to be

fine,

> >> but let us know if there's anything we can help with!

> >> Take care,

> >>

> >>

> >>

> >> 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.

> >>

> >>

[Guest guest]

Wenoka

Thanks for the advise. I can relate completely to the worry of might

happen. I am trying to come to terms with all of this. When this all first

started coming together, (he got a severe virus that landing him in the

hospital in May and was diagnosed with a PID in July). My husband kept

saying, " Its nothing, he will be fine " . That's the wrong thing to say to a

mother who's instincts are saying otherwise. As a matter of fact, I think

he refused to accept the potential enormity of this until our first IVIG

treatment at Children's Hospital. He went downstairs with the other parents

to get lunch and found out that the other mother lost two children to XLA.

One was an infant, one was four. He was horrified! That was when he really

started asking me questions and started to accept delivery on the diagnosis.

I also met a women while getting IVIG who's son had XLA and developed polio

from his vaccine. Well I won't go into the long story in detail, but in

short, when was 2 months old and perfectly healthy, I saw an episode

of Dateline that warned parents of the potential dangers of live Polio. I

went to my Ped and refused the live version and insisted on the dead virus.

He gave me a hassle but I stuck to my guns. Well, now five years later, I

found out that that live immunization would have very likely infected him

with polio. (Talking about feeling like someone is watching over me!!!)

And by the way, we left that pediatrician...

Sorry, I didn't mean to ramble. But your advise is good. I am trying to

take it one day at a time. And I have also learned in a very short time

that " I " am his best advocate. I have done lots of research and this site

has been wonderful and a big help. I will never stop researching on my own

and asking tons of questions. The more I know, the better I can take care

of him.

Thanks for listening.

Kim - Mom to Nick, (XLA?/CVID?) and

Re: Viral Meningitis

> >

> >

> >> Kim,

> >>

> >> I can't really think of any forms of viral meningitis that are passed

> >> from one person to another, without the underlying virus being

> >> responsible for the presenting symptoms, so I believe that you're

> >> correct in assuming that it usually arises from another viral infection

> >> and travels to the meninges and coating around the brain after it's not

> >> contained to its original site of infection and " escapes " into the

> >> bloodstream to go visiting to new and welcoming bodily nooks and

> >> crannies -- specifically, in this case, the nervous system.

> >>

> >> Is on IVIG? If so, he should have fairly decent protection

> >> against some viruses (including coxsackie), particularly if he has had

> >> his infusion recently. But the further out he is on his IVIG cycle,

the

> >> less protection he has, of course. So that's one thing to keep in mind

> >> when responding to the situation (either yourself, or you and your

docs).

> >>

> >> BUT, I don't know if you saw my message to you the other day, about

some

> >> of the similarities and differences between CVID and XLA (and

> >> similarities in treatments)? One of the differences I stated is that

> >> people with XLA have an inexplicable susceptibility to (and then, an

> >> inability to contain or completely eradicate) some viruses, and one of

> >> those is a family of viruses called enteroviruses. sackie is an

> >> enterovirus.

> >>

> >> That doesn't mean you should panic, but it might be worth a call to the

> >> on-call doc this weekend, just to see if/what he/she recommends (I

would

> >> call the immuno rather than the ped, unless your ped is really familiar

> >> with both types of PIDs, because very few people outside the immunology

> >> world know about the XLA-Enterovirus issue).

> >>

> >> Generally, you would begin to see the vescicles on hands, feet, and in

> >> the mouth, then the headache of the encephalitis/meningitis takes a

> >> little while longer to develop, (if it is *going* to develop, because

> >> that's not automatic... many people with PIDs, even XLA, have overcome

> >> coxsackie, so don't get too upset). So, the neuro stuff usually

appears

> >> within days, sometimes weeks, though of course everyone's experience is

> >> different.

> >>

> >> I had enteroviral meningo-encephalitis about three years ago, after a

> >> case of coxsackie I couldn't fight off completely. I got GI symptoms

> >> (major diarrhea - to the tune of a 20+ lb weight loss in about 6

weeks),

> >> at the same time the vescicles showed up on the palms of my hands. As

> >> the next few weeks went on, I received high dose IVIG, to see if they

> >> could kick this virus, because at the time, no one knew what they were

> >> dealing with (this was before Enterovirus PCR tests were widely

> >> available, so the type of infection was simply assumed based on my

> >> symptoms, spinal tap cell counts, etc). But the diarrhea kept getting

> >> worse, and about two weeks into it, I started to get excruciating

> >> headaches. This prompted a number of neuro appointments, but no one

> >> ever found anything obvious, other than to say that I almost certainly

> >> had an enterovirus out of control in my GI system, and the virus was

> >> probably causing bad headaches, like any virus would, only bigger. A

> >> week after that, I was admitted to the hospital because I started

having

> >> seizures and started experiencing a problem called " expressive

aphasia, "

> >> which means that I knew exactly what I wanted to say, but couldn't get

> >> it out, and it's very specific for certain kinds of brain damage, which

> >> is the same place they believe the viral damage to my brain is that

> >> causes the seizures (which are now very well controlled on meds). It

> >> was very frustrating to me. I was treated symptomatically (because at

> >> the time, that was the only option for enteroviruses -- symptomatic

> >> treatment and high dose IVIG) -- and I got better to some extent

(though

> >> then had to gain back about 25lbs). Even though I really was getting

> >> better all the time, when I entered med school I felt like my world was

> >> out of control, because half the time I couldn't even talk to people

> >> without having one of my embarrassing speech issues, and I used to get

> >> myself so worried and stressed out (with comments to myself like, " how

> >> can you be a doctor if you can't even communicate properly?! " ) that

only

> >> it made it worse. As time went on, and I healed, and I stopped getting

> >> panicked every time it happened, it started to fade. So, my

> >> intellectual skills returned, and then it was a matter of physical

> >> ones.... though we took all the recommended ideas from the Infectious

> >> Disease docs, etc., we never were able to completely eradicate the

> >> infection in my nervous system, and I ended up with 5 more cases of

> >> enteroviral encephalitis/meningitis in the next 18 months or so. At

> >> that point, I was so frustrated, but by pure

> >> luck/chance/fate/God/whatever, I was lead to an article about an

> >> experimental medication to kill enteroviruses, especially in the

nervous

> >> system. I got an FDA waiver for a compassionate care use of the med,

> >> and I took it for 10 days (3x/day, oral syrup), and (knock wood) I've

> >> not had another case of this in almost 18 months. (Yeahhh!!!).

> >>

> >> So, the point of this long-winded message is that - you probably will

> >> NOT see encephalitis or meningitis as Chris' first symptom, if he

really

> >> does get coxsackie -- chances are, it would present as vescicles on the

> >> palms and soles, ulcers in the mouth, and maybe GI upset. The neuro

> >> issues usually show up later. But if starts to show any of these

> >> symptoms for coxsackie, you really do need to call your doc, because

> >> they might be able to set you up for a preventative mega-dose of IVIG,

> >> to try to kick the virus before it takes hold systemically and in the

> >> nervous system, or something else that might help contain the infection

> >> -- I'm not sure what that might be, but there may be treatments I've

not

> >> heard of, since I haven't deal with this actively in the last 1.5

years.

> >> The issue here is simply that if he has XLA, you want to avoid this

> >> getting out of control by nipping it in the bud, because there's

> >> significantly less protection against this particular virus for people

> >> with XLA. If you knew for sure that had CVID, I would say

there's

> >> more room to wait and see what his body can do with it (though some

docs

> >> don't think that, so that's my opinion, which may or may not be

correct,

> >> especially since I'm not a doctor yet!), but unfortunately, you don't

> >> know which underlying disease he has, so it's best to take a cautious

> >approach.

> >>

> >> I hope that the IVIG has protected him, though, and that he will not

get

> >> stuck with a nasty virus. I think you're probably all going to be

fine,

> >> but let us know if there's anything we can help with!

> >> Take care,

> >>

> >>

> >>

> >> 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.

> >>

> >>

[Guest guest]

Kim,

Not to be nosey, but where are you from? My son was in the hospital in

May and my mom stayed at the hospital with us. She had two sons die

from XLA (an infant and a 3-4 year old). It just sounded too much like

my mother. We are from Indiana.

Kim, mom to Linz and Graham (Bruton's)

[Guest guest]

Kim,

Not to be nosey, but where are you from? My son was in the hospital in

May and my mom stayed at the hospital with us. She had two sons die

from XLA (an infant and a 3-4 year old). It just sounded too much like

my mother. We are from Indiana.

Kim, mom to Linz and Graham (Bruton's)

[Guest guest]

Kim, Mom to Linz and Graham (Bruton's)

I am in New Jersey and go to Children's Hospital in Philadelphia. This

woman had five children, 4 boys and a girl. The infant boy died before they

knew it was XLA. Then the other boy died at 4 yrs old, she said they

thought it might have been echo virus, not sure. She had three other

children, one more boy with XLA, a girl who was a carrier and another boy

that was OK. (I think I got that right.) It was a very, very sad story. A

bit scary to hear at my first IVIG treatment, I must say.

Kim - Mom to Nick, (XLA?/CVID?) and

Re: Viral Meningitis

> Kim,

> Not to be nosey, but where are you from? My son was in the hospital in

> May and my mom stayed at the hospital with us. She had two sons die

> from XLA (an infant and a 3-4 year old). It just sounded too much like

> my mother. We are from Indiana.

>

> Kim, mom to Linz and Graham (Bruton's)

>

>

>

> 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.

>

>

[Guest guest]

Kim, Mom to Linz and Graham (Bruton's)

I am in New Jersey and go to Children's Hospital in Philadelphia. This

woman had five children, 4 boys and a girl. The infant boy died before they

knew it was XLA. Then the other boy died at 4 yrs old, she said they

thought it might have been echo virus, not sure. She had three other

children, one more boy with XLA, a girl who was a carrier and another boy

that was OK. (I think I got that right.) It was a very, very sad story. A

bit scary to hear at my first IVIG treatment, I must say.

Kim - Mom to Nick, (XLA?/CVID?) and

Re: Viral Meningitis

> Kim,

> Not to be nosey, but where are you from? My son was in the hospital in

> May and my mom stayed at the hospital with us. She had two sons die

> from XLA (an infant and a 3-4 year old). It just sounded too much like

> my mother. We are from Indiana.

>

> Kim, mom to Linz and Graham (Bruton's)

>

>

>

> 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.

>

>

[Guest guest]

Kim, Mom to Linz and Graham (Bruton's)

I am in New Jersey and go to Children's Hospital in Philadelphia. This

woman had five children, 4 boys and a girl. The infant boy died before they

knew it was XLA. Then the other boy died at 4 yrs old, she said they

thought it might have been echo virus, not sure. She had three other

children, one more boy with XLA, a girl who was a carrier and another boy

that was OK. (I think I got that right.) It was a very, very sad story. A

bit scary to hear at my first IVIG treatment, I must say.

Kim - Mom to Nick, (XLA?/CVID?) and

Re: Viral Meningitis

> Kim,

> Not to be nosey, but where are you from? My son was in the hospital in

> May and my mom stayed at the hospital with us. She had two sons die

> from XLA (an infant and a 3-4 year old). It just sounded too much like

> my mother. We are from Indiana.

>

> Kim, mom to Linz and Graham (Bruton's)

>

>

>

> 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.

>

>

[Guest guest]

Wenoka,

I just wanted to share that shingles is contagious if you haven't had chicken

pox or immunosuppressed. My husband had shingles and my son who is healthy got

chicken pox a few days after. As a nurse in a nursing home, shingles is common,

and any healthcare worker who hasn't had chicken pox is not allowed in the room.

Just a little info from my experience.

Re: Viral Meningitis

>

>

>> Kim,

>>

>> I can't really think of any forms of viral meningitis that are passed

>> from one person to another, without the underlying virus being

>> responsible for the presenting symptoms, so I believe that you're

>> correct in assuming that it usually arises from another viral infection

>> and travels to the meninges and coating around the brain after it's not

>> contained to its original site of infection and " escapes " into the

>> bloodstream to go visiting to new and welcoming bodily nooks and

>> crannies -- specifically, in this case, the nervous system.

>>

>> Is on IVIG? If so, he should have fairly decent protection

>> against some viruses (including coxsackie), particularly if he has had

>> his infusion recently. But the further out he is on his IVIG cycle, the

>> less protection he has, of course. So that's one thing to keep in mind

>> when responding to the situation (either yourself, or you and your docs).

>>

>> BUT, I don't know if you saw my message to you the other day, about some

>> of the similarities and differences between CVID and XLA (and

>> similarities in treatments)? One of the differences I stated is that

>> people with XLA have an inexplicable susceptibility to (and then, an

>> inability to contain or completely eradicate) some viruses, and one of

>> those is a family of viruses called enteroviruses. sackie is an

>> enterovirus.

>>

>> That doesn't mean you should panic, but it might be worth a call to the

>> on-call doc this weekend, just to see if/what he/she recommends (I would

>> call the immuno rather than the ped, unless your ped is really familiar

>> with both types of PIDs, because very few people outside the immunology

>> world know about the XLA-Enterovirus issue).

>>

>> Generally, you would begin to see the vescicles on hands, feet, and in

>> the mouth, then the headache of the encephalitis/meningitis takes a

>> little while longer to develop, (if it is *going* to develop, because

>> that's not automatic... many people with PIDs, even XLA, have overcome

>> coxsackie, so don't get too upset). So, the neuro stuff usually appears

>> within days, sometimes weeks, though of course everyone's experience is

>> different.

>>

>> I had enteroviral meningo-encephalitis about three years ago, after a

>> case of coxsackie I couldn't fight off completely. I got GI symptoms

>> (major diarrhea - to the tune of a 20+ lb weight loss in about 6 weeks),

>> at the same time the vescicles showed up on the palms of my hands. As

>> the next few weeks went on, I received high dose IVIG, to see if they

>> could kick this virus, because at the time, no one knew what they were

>> dealing with (this was before Enterovirus PCR tests were widely

>> available, so the type of infection was simply assumed based on my

>> symptoms, spinal tap cell counts, etc). But the diarrhea kept getting

>> worse, and about two weeks into it, I started to get excruciating

>> headaches. This prompted a number of neuro appointments, but no one

>> ever found anything obvious, other than to say that I almost certainly

>> had an enterovirus out of control in my GI system, and the virus was

>> probably causing bad headaches, like any virus would, only bigger. A

>> week after that, I was admitted to the hospital because I started having

>> seizures and started experiencing a problem called " expressive aphasia, "

>> which means that I knew exactly what I wanted to say, but couldn't get

>> it out, and it's very specific for certain kinds of brain damage, which

>> is the same place they believe the viral damage to my brain is that

>> causes the seizures (which are now very well controlled on meds). It

>> was very frustrating to me. I was treated symptomatically (because at

>> the time, that was the only option for enteroviruses -- symptomatic

>> treatment and high dose IVIG) -- and I got better to some extent (though

>> then had to gain back about 25lbs). Even though I really was getting

>> better all the time, when I entered med school I felt like my world was

>> out of control, because half the time I couldn't even talk to people

>> without having one of my embarrassing speech issues, and I used to get

>> myself so worried and stressed out (with comments to myself like, " how

>> can you be a doctor if you can't even communicate properly?! " ) that only

>> it made it worse. As time went on, and I healed, and I stopped getting

>> panicked every time it happened, it started to fade. So, my

>> intellectual skills returned, and then it was a matter of physical

>> ones.... though we took all the recommended ideas from the Infectious

>> Disease docs, etc., we never were able to completely eradicate the

>> infection in my nervous system, and I ended up with 5 more cases of

>> enteroviral encephalitis/meningitis in the next 18 months or so. At

>> that point, I was so frustrated, but by pure

>> luck/chance/fate/God/whatever, I was lead to an article about an

>> experimental medication to kill enteroviruses, especially in the nervous

>> system. I got an FDA waiver for a compassionate care use of the med,

>> and I took it for 10 days (3x/day, oral syrup), and (knock wood) I've

>> not had another case of this in almost 18 months. (Yeahhh!!!).

>>

>> So, the point of this long-winded message is that - you probably will

>> NOT see encephalitis or meningitis as Chris' first symptom, if he really

>> does get coxsackie -- chances are, it would present as vescicles on the

>> palms and soles, ulcers in the mouth, and maybe GI upset. The neuro

>> issues usually show up later. But if starts to show any of these

>> symptoms for coxsackie, you really do need to call your doc, because

>> they might be able to set you up for a preventative mega-dose of IVIG,

>> to try to kick the virus before it takes hold systemically and in the

>> nervous system, or something else that might help contain the infection

>> -- I'm not sure what that might be, but there may be treatments I've not

>> heard of, since I haven't deal with this actively in the last 1.5 years.

>> The issue here is simply that if he has XLA, you want to avoid this

>> getting out of control by nipping it in the bud, because there's

>> significantly less protection against this particular virus for people

>> with XLA. If you knew for sure that had CVID, I would say there's

>> more room to wait and see what his body can do with it (though some docs

>> don't think that, so that's my opinion, which may or may not be correct,

>> especially since I'm not a doctor yet!), but unfortunately, you don't

>> know which underlying disease he has, so it's best to take a cautious

>approach.

>>

>> I hope that the IVIG has protected him, though, and that he will not get

>> stuck with a nasty virus. I think you're probably all going to be fine,

>> but let us know if there's anything we can help with!

>> Take care,

>>

>>

>>

>> 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.

>>

>>

[Guest guest]

I wondered if that might not happen. Thanks for confirming that it can.

I left a message about the exposure at Day Med last week, but haven't heard

anything back about it. Right now Christi (9 months) is still sick. She

had a high fever a couple of weeks ago. Seemed to be an upper sinus

infection. She's been on Cefzil for 10 days (what a pain to give meds to

babies). Fever broke up soon after putting her on abx, but yesterday her

nose filled up with snot and this morning it dropped into her upper

respitory a bit. Her daddy has a URI too. So far so good as far as Sam's

concerned though. Guess I'll have to keep an eye on both Christi and Sam

about the chicken pox 8-(

God bless,

Wenoka (AMY, Sam - Hyper IgM, Christi)

At 07:19 PM 09/09/2001 -0500, you wrote:

>Wenoka,

>

>I just wanted to share that shingles is contagious if you haven't had

chicken pox or immunosuppressed. My husband had shingles and my son who is

healthy got chicken pox a few days after. As a nurse in a nursing home,

shingles is common, and any healthcare worker who hasn't had chicken pox is

not allowed in the room. Just a little info from my experience.

>

>

[Guest guest]

I wondered if that might not happen. Thanks for confirming that it can.

I left a message about the exposure at Day Med last week, but haven't heard

anything back about it. Right now Christi (9 months) is still sick. She

had a high fever a couple of weeks ago. Seemed to be an upper sinus

infection. She's been on Cefzil for 10 days (what a pain to give meds to

babies). Fever broke up soon after putting her on abx, but yesterday her

nose filled up with snot and this morning it dropped into her upper

respitory a bit. Her daddy has a URI too. So far so good as far as Sam's

concerned though. Guess I'll have to keep an eye on both Christi and Sam

about the chicken pox 8-(

God bless,

Wenoka (AMY, Sam - Hyper IgM, Christi)

At 07:19 PM 09/09/2001 -0500, you wrote:

>Wenoka,

>

>I just wanted to share that shingles is contagious if you haven't had

chicken pox or immunosuppressed. My husband had shingles and my son who is

healthy got chicken pox a few days after. As a nurse in a nursing home,

shingles is common, and any healthcare worker who hasn't had chicken pox is

not allowed in the room. Just a little info from my experience.

>

>

[Guest guest]

Well, fortunate or unfortunate, it was not us. Although it sounds so

similar. My mom had 5 boys and a girl (me). She had 2 sons die from

Bruton's and has a 30 year old living with it and doing well. The other

2 boys are just fine. I turned out to be a carrier and now my daughter

will have to be tested at a later date to help her make an informed

decision as to whether she wants kids or not.

Hope things are going well. Look on the bright side. My son has

Bruton's and since he started IVIG he has been very healthy (NO

INFECTIONS). My brother is also very healthy. He lives a perfectly

normal life, never worries about who he's been exposed to. His IVIG is

every 4 weeks and is done in his home. No one knows at work that he is

any different from anyone else. He does get a cold now and then but

it's few and far between.

Kim, mom to Linz and Graham (Bruton's)

[Guest guest]

Well, fortunate or unfortunate, it was not us. Although it sounds so

similar. My mom had 5 boys and a girl (me). She had 2 sons die from

Bruton's and has a 30 year old living with it and doing well. The other

2 boys are just fine. I turned out to be a carrier and now my daughter

will have to be tested at a later date to help her make an informed

decision as to whether she wants kids or not.

Hope things are going well. Look on the bright side. My son has

Bruton's and since he started IVIG he has been very healthy (NO

INFECTIONS). My brother is also very healthy. He lives a perfectly

normal life, never worries about who he's been exposed to. His IVIG is

every 4 weeks and is done in his home. No one knows at work that he is

any different from anyone else. He does get a cold now and then but

it's few and far between.

Kim, mom to Linz and Graham (Bruton's)

[Guest guest]

Kim,

Thanks for sharing your positive family experiences. It is nice to hear of

people in their 30's or older doing well. I pray my son will be healthy

throughout his life even with getting IVIG!

Temme

Re: Viral Meningitis

Well, fortunate or unfortunate, it was not us. Although it sounds so

similar. My mom had 5 boys and a girl (me). She had 2 sons die from

Bruton's and has a 30 year old living with it and doing well. The other

2 boys are just fine. I turned out to be a carrier and now my daughter

will have to be tested at a later date to help her make an informed

decision as to whether she wants kids or not.

Hope things are going well. Look on the bright side. My son has

Bruton's and since he started IVIG he has been very healthy (NO

INFECTIONS). My brother is also very healthy. He lives a perfectly

normal life, never worries about who he's been exposed to. His IVIG is

every 4 weeks and is done in his home. No one knows at work that he is

any different from anyone else. He does get a cold now and then but

it's few and far between.

Kim, mom to Linz and Graham (Bruton's)

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.