Mission......?accomplished

[Guest guest]

Hi all,

Just wanted you to know about what has transpired with our situation

with Medical Services….I got a call back this morning from the

Governors’ office. I spoke at length with the person who deals with

complaints with Medicaid…..She was very supportive….Agreed that being on

speaker phone is inappropriate….Agreed that they aren’t making it “easy”

to get what Jake deserves…..Didn’t know how we were doing it…..handling

work, sick kid, other kids, and then the hassles…I felt very good about

our conversation. She is going to call the Nurse’s supervisor and speak

with him and wants me to keep her informed if I have any other

problems……I told her up front I was very upset/angry last Monday when I

was in there and trying to get approval for ’s appt….She said who

wouldn’t be….All of my concerns/reasons for the denial being STUPID she

agreed with! I’m sure glad I was talking to another MOTHER.

Then to follow up with the Hippa stuff, IE being on speaker phone and

not being told…I did call the Hippa rep for the State. I spoke to her

and explained the situation. I told her I was concerned about filing a

complaint as I had been told that being demanding and putting them on

the defensive was no way to get my son care…she reiterated that they

cannot RETALIATE…..She agreed that there isn’t a good working

relationship between us, due to the lack of information that they give

us. She said that if there are problems in the office it needs to be

reported. She is sending me the paperwork and said that we have a HIPPA

concern and a customer service concern. She will also give me the

supervisors name/number and if I want to do an informal complaint I

can….

I just feel better having talked to these people and hearing from those

in the “know” that my concerns are valid……I think I will pursue a formal

complaint……I am tired of taking all the crap that we have to deal with,

as if the medical stuff isn’t enough. I know Pattie can second that…..

I don’t know if I have won this battle, but I do feel like I am in the

lead here….

We are leaving sometime tomorrow morning for MPLS…..am very anxious to

get there…..I have a list of questions for Dr. K…..Our appt is at 9 on

Thursday. I imagine it will take all morning……we are also seeing the

infectious disease doctor along with hematology…. seems to be

getting sick…He was sneezing today and now this evening has a croupy

cough. I have the cool mist in his room and will need to remember the

nebulizer tomorrow just in case….He has lost almost all of the

fingernail now, yesterday he had a weird rash on his low back, above his

butt, but where the diaper still sits, it was in the middle and then

went to one side….now I’m wondering if that is related to the herpes in

his mouth……He had some new sores in his mouth today, but they too looked

different than normal. He didn’t eat all day till supper tonight and

then ate pretty good….I am just anxious to get going and maybe start to

get some answers……talk to you when we get back…I don’t know if the hotel

has wireless internet or not. We’re taking the lap top, but time will

tell…..I’ll try to check in if able if not, will update you when we get

back (hopefully Thursday nite) It will be a quick trip, 900 miles in 36

hours…….

I have to cook for 100 people for Friday nite, so looks like a busy day

for me…..

Take care,

--

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[Guest guest]

,

RE: Rash on Butt

Brief (or not) history: My youngest daughter had a complete immune workup

with Sam's immunologist because of re-occurring cold sores on her lip and a

light rash across her buttocks.

The cold sores and rash started occurring within a couple of months after an

initial outbreak of cold sores on her lips, gums, tongue, interior of mouth

and who knows how far down her throat. It seemed to occur in a regular

pattern, and - having suffered chronic EBV since I had an outbreak when I

was nineteen and familiar with the cyclical nature of it - I suggested that

it could be EBV. My doctor sent me to a dermatologist to find out if it

could be related. The dermatologist completely poo-poo'd my idea that it

could be related to EBV and said that the rash was folliculitis and the cold

sores were unrelated, but they both tended to be opportunistic, so one would

crop up when her system was being pulled down by the other one. He

prescribed 3 months of cephalexin (to which I am deathly allergic - I even

get a hive on my skin wherever it gets on it, so you can imagine what a pain

in the butt 3 months was) and acyclovir for the cold sores. It made enough

sense that I went with it. After all - he was the specialist, right? For

three months - no outbreaks. Two days after we stopped the meds....... cold

sore on the lip, followed by the light rash across the higher buttocks.

Next time I saw the immuno with Sam, I mentioned it to him because I had

been so concerned about Sam being exposed to something. He said that she

needed to get the full work-up. The good news was - no PID. The only thing

they could find wrong??????? Active EBV!!!!! And was the rash

related?????? I never thought I'd think it lucky that my kid had a rash,

but the day of the immuno aptmt, she broke out. Sure enough, it was

related. The rash does not carry the virus, but it is caused by it. I'm

not sure if it was the EBV or the HSV1, or the combination of the two that

causes it (hmmmm. I never though about the combo effect before....... Both

EBV & HSV1 are in the herpetic family of viruses..........) But, yes, the

rash was the result of the herpetic viruses in her system. They up'd her

acyclovir to valtrex because if she missed even one dose of the acyclovir,

she'd have a cold sore starting by the end of the same day. Now she holds

her own with it (They always occur in the same exact area of her lip), but

if she is sick, she ALWAYS gets cold sores despite the daily dose of

valtrex.

And by the way, is lucky to have an advocate like you. Things will

not change for the better for our kids without being willing to go into

battle when necessary. You go, girl!

God bless,

Wenoka

Mission......?accomplished

Hi all,

Just wanted you to know about what has transpired with our situation

with Medical Services….I got a call back this morning from the

Governors’ office. I spoke at length with the person who deals with

complaints with Medicaid…..She was very supportive….Agreed that being on

speaker phone is inappropriate….Agreed that they aren’t making it “easy”

to get what Jake deserves…..Didn’t know how we were doing it…..handling

work, sick kid, other kids, and then the hassles…I felt very good about

our conversation. She is going to call the Nurse’s supervisor and speak

with him and wants me to keep her informed if I have any other

problems……I told her up front I was very upset/angry last Monday when I

was in there and trying to get approval for ’s appt….She said who

wouldn’t be….All of my concerns/reasons for the denial being STUPID she

agreed with! I’m sure glad I was talking to another MOTHER.

Then to follow up with the Hippa stuff, IE being on speaker phone and

not being told…I did call the Hippa rep for the State. I spoke to her

and explained the situation. I told her I was concerned about filing a

complaint as I had been told that being demanding and putting them on

the defensive was no way to get my son care…she reiterated that they

cannot RETALIATE…..She agreed that there isn’t a good working

relationship between us, due to the lack of information that they give

us. She said that if there are problems in the office it needs to be

reported. She is sending me the paperwork and said that we have a HIPPA

concern and a customer service concern. She will also give me the

supervisors name/number and if I want to do an informal complaint I

can….

I just feel better having talked to these people and hearing from those

in the “know” that my concerns are valid……I think I will pursue a formal

complaint……I am tired of taking all the crap that we have to deal with,

as if the medical stuff isn’t enough. I know Pattie can second that…..

I don’t know if I have won this battle, but I do feel like I am in the

lead here….

We are leaving sometime tomorrow morning for MPLS…..am very anxious to

get there…..I have a list of questions for Dr. K…..Our appt is at 9 on

Thursday. I imagine it will take all morning……we are also seeing the

infectious disease doctor along with hematology…. seems to be

getting sick…He was sneezing today and now this evening has a croupy

cough. I have the cool mist in his room and will need to remember the

nebulizer tomorrow just in case….He has lost almost all of the

fingernail now, yesterday he had a weird rash on his low back, above his

butt, but where the diaper still sits, it was in the middle and then

went to one side….now I’m wondering if that is related to the herpes in

his mouth……He had some new sores in his mouth today, but they too looked

different than normal. He didn’t eat all day till supper tonight and

then ate pretty good….I am just anxious to get going and maybe start to

get some answers……talk to you when we get back…I don’t know if the hotel

has wireless internet or not. We’re taking the lap top, but time will

tell…..I’ll try to check in if able if not, will update you when we get

back (hopefully Thursday nite) It will be a quick trip, 900 miles in 36

hours…….

I have to cook for 100 people for Friday nite, so looks like a busy day

for me…..

Take care,

[Guest guest]

Ah ha!!!! I bet this is what we are dealing with--our peds doc said

folliculitis too! Ugh!!! She is due for IVIG (4.5 week interval--longest one

to date--and we are now very nervous as I see stuff on her bottom). Am going to

ask our immuno on Friday. What is the best way to test for this? PCR? Skin

test?

Wenoka & <yhwhworship@...> wrote:

,

RE: Rash on Butt

Brief (or not) history: My youngest daughter had a complete immune workup

with Sam's immunologist because of re-occurring cold sores on her lip and a

light rash across her buttocks.

The cold sores and rash started occurring within a couple of months after an

initial outbreak of cold sores on her lips, gums, tongue, interior of mouth

and who knows how far down her throat. It seemed to occur in a regular

pattern, and - having suffered chronic EBV since I had an outbreak when I

was nineteen and familiar with the cyclical nature of it - I suggested that

it could be EBV. My doctor sent me to a dermatologist to find out if it

could be related. The dermatologist completely poo-poo'd my idea that it

could be related to EBV and said that the rash was folliculitis and the cold

sores were unrelated, but they both tended to be opportunistic, so one would

crop up when her system was being pulled down by the other one. He

prescribed 3 months of cephalexin (to which I am deathly allergic - I even

get a hive on my skin wherever it gets on it, so you can imagine what a pain

in the butt 3 months was) and acyclovir for the cold sores. It made enough

sense that I went with it. After all - he was the specialist, right? For

three months - no outbreaks. Two days after we stopped the meds....... cold

sore on the lip, followed by the light rash across the higher buttocks.

Next time I saw the immuno with Sam, I mentioned it to him because I had

been so concerned about Sam being exposed to something. He said that she

needed to get the full work-up. The good news was - no PID. The only thing

they could find wrong??????? Active EBV!!!!! And was the rash

related?????? I never thought I'd think it lucky that my kid had a rash,

but the day of the immuno aptmt, she broke out. Sure enough, it was

related. The rash does not carry the virus, but it is caused by it. I'm

not sure if it was the EBV or the HSV1, or the combination of the two that

causes it (hmmmm. I never though about the combo effect before....... Both

EBV & HSV1 are in the herpetic family of viruses..........) But, yes, the

rash was the result of the herpetic viruses in her system. They up'd her

acyclovir to valtrex because if she missed even one dose of the acyclovir,

she'd have a cold sore starting by the end of the same day. Now she holds

her own with it (They always occur in the same exact area of her lip), but

if she is sick, she ALWAYS gets cold sores despite the daily dose of

valtrex.

And by the way, is lucky to have an advocate like you. Things will

not change for the better for our kids without being willing to go into

battle when necessary. You go, girl!

God bless,

Wenoka

Mission......?accomplished

Hi all,

Just wanted you to know about what has transpired with our situation

with Medical Services….I got a call back this morning from the

Governors’ office. I spoke at length with the person who deals with

complaints with Medicaid…..She was very supportive….Agreed that being on

speaker phone is inappropriate….Agreed that they aren’t making it “easy”

to get what Jake deserves…..Didn’t know how we were doing it…..handling

work, sick kid, other kids, and then the hassles…I felt very good about

our conversation. She is going to call the Nurse’s supervisor and speak

with him and wants me to keep her informed if I have any other

problems……I told her up front I was very upset/angry last Monday when I

was in there and trying to get approval for ’s appt….She said who

wouldn’t be….All of my concerns/reasons for the denial being STUPID she

agreed with! I’m sure glad I was talking to another MOTHER.

Then to follow up with the Hippa stuff, IE being on speaker phone and

not being told…I did call the Hippa rep for the State. I spoke to her

and explained the situation. I told her I was concerned about filing a

complaint as I had been told that being demanding and putting them on

the defensive was no way to get my son care…she reiterated that they

cannot RETALIATE…..She agreed that there isn’t a good working

relationship between us, due to the lack of information that they give

us. She said that if there are problems in the office it needs to be

reported. She is sending me the paperwork and said that we have a HIPPA

concern and a customer service concern. She will also give me the

supervisors name/number and if I want to do an informal complaint I

can….

I just feel better having talked to these people and hearing from those

in the “know” that my concerns are valid……I think I will pursue a formal

complaint……I am tired of taking all the crap that we have to deal with,

as if the medical stuff isn’t enough. I know Pattie can second that…..

I don’t know if I have won this battle, but I do feel like I am in the

lead here….

We are leaving sometime tomorrow morning for MPLS…..am very anxious to

get there…..I have a list of questions for Dr. K…..Our appt is at 9 on

Thursday. I imagine it will take all morning……we are also seeing the

infectious disease doctor along with hematology…. seems to be

getting sick…He was sneezing today and now this evening has a croupy

cough. I have the cool mist in his room and will need to remember the

nebulizer tomorrow just in case….He has lost almost all of the

fingernail now, yesterday he had a weird rash on his low back, above his

butt, but where the diaper still sits, it was in the middle and then

went to one side….now I’m wondering if that is related to the herpes in

his mouth……He had some new sores in his mouth today, but they too looked

different than normal. He didn’t eat all day till supper tonight and

then ate pretty good….I am just anxious to get going and maybe start to

get some answers……talk to you when we get back…I don’t know if the hotel

has wireless internet or not. We’re taking the lap top, but time will

tell…..I’ll try to check in if able if not, will update you when we get

back (hopefully Thursday nite) It will be a quick trip, 900 miles in 36

hours…….

I have to cook for 100 people for Friday nite, so looks like a busy day

for me…..

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.

To unsubscribe -unsubscribegroups (DOT)

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[Guest guest]

I think that " folliculitis " is the " I don't have a clue what this is but I

better come up with something for my $175 for 10 minute rate. " KWIM?????

Probably the best description of the kind of rash that Christi had was a

petechial skin rash.

There is a full panel of blood tests for EBV to be diagnosed. If I remember

correctly, there are four tests involved.

This is what I found on HSV diagnosis.

" HSV diagnosis is made on the basis of a culture, and immunotyping is

necessary for differentiation of the strain. Serological studies can yield

information on antibody formation a swab is taken of the lesion for culture;

tissue biopsy culture from the base of the lesion is obtained for

fluorescent antibody tests. It is sometimes confused with herpes zoster, but

the latter occurs with less frequency and is significantly more painful.

Other possible differential diagnoses include varicella, genital ulcers or

gingivostomatitis, herpetiform dermatitis, or drug reactions. "

They didn't need to do skin biopsies on Christi, but I believe that is also

a method of diagnosis (or of ruling out a diagnosis) for some skin rashes.

With us, the real clue was the fact that the rash appeared soon after the

cold sore broke out. Keep in mind that the rash did not have actual

blisters and the doc emphasized that it was not where the virus was carried.

Probably the immuno would be the best one to ask though, since you will be

seeing him anyway.

Let us know what he says.

Wenoka

Re: Mission......?accomplished

Ah ha!!!! I bet this is what we are dealing with--our peds doc said

folliculitis too! Ugh!!! She is due for IVIG (4.5 week interval--longest

one to date--and we are now very nervous as I see stuff on her bottom). Am

going to ask our immuno on Friday. What is the best way to test for this?

PCR? Skin test?