Re: update...arrghhhhh

[Guest guest]

Then she says, there is just one problem.....Then she says, there is just

one problem.....<WBR>We are booked out until mid-September. So we are

scheduled for mid-Septemb

I would have her talk to the doctor about squeezing in a short appt. to

discuss this with you. The doctor may okay this. Tell her this cannot not wait

until Sept.

Janet, mom to Brittany CVID age 15

[Guest guest]

Hello everyone-

So I called Dr. S's office today and left a message for them stating that I

was concerned that Gwynn again has a fever and is complaining of abdominal pain.

I am hoping that the kidney infection is not a break through infection as this

is how it started before. So Gwynn is laying around and won't eat. I explained

that Gwynn had her follow up with the pediatrician Wednesday, (she did not do

anything but a routine exam) Gwynn said she was feeling fine at the time except

for the cough but I would have liked her to verify that the CRP was down etc and

recheck the urine to make sure the infection cleared. I also asked about IVIG

and explained that I was not comfortable with Gwynn's clinical picture, that

three hospitilizations in 8 weeks was a lot and that Gwynn is again not well. I

stated that the quality of life was being affected and that we needed to come up

with a new game plan. Suzanne called me back and said that Dr. Shapiro really

wanted to sit down and discuss it,

that it was not something we should do over the phone. Great I thought! We are

finally getting somewhere. Then she says, there is just one problem.....We are

booked out until mid-September. So we are scheduled for mid-September but on the

short call list if someone cancels. I asked what he thought about Gwynn's

current situation and if this could possibly be a break through infection? She

said, hmmm I don't know I will run it by him. She also said that he was on call

this weekend if she gets worse. Well that is not exactly what I was looking

for!!!! I know he is really busy but she is not healthy!

I could just scream.

I am prepping lab work to forward to another doc.

~~

Schulman <dietdoc@...> wrote:

-

Its me, , again. Just a few lingering thoughts...

1. I see that you are trying to prepare on all fronts (e.g., lung line, working

with Dr. S., exploring different possibilities with docs, etc.) and I think this

is very reasonable.

2. At the same time, I agree with your approach to matter-of-factly confront Dr.

S. (sorry, I thought you already did). Be methodical, tell him what you think,

and keep that back-up plan. My hope is that you will not need the back-up plan

-- but it may help your family to sleep at night. A letter to Dr. S., seems

justified, given that he has not responded to your call. In fact, his slowness

might be a blessing because it will give you an opportunity to provide him with

a " big picture " overview of the situation on paper -- perhaps one that he has

not had time to consider. It is not unusual for patients/moms to fax letters. In

fact, fax transmittals may be regarded as legal documents -- in contrast to

phone calls or emails. The template that Dayna provided is really well

organized.

3. If you chose to go elsewhere, I would encourage you to do so really

carefully. It is not worth going to another practice unless you are fairly

certain that you will get an honest re-evaluation -- an objective pair of

eyes/ears. Personally, I would not get another work-up unless I knew it was with

the " big guns " -- not just another immuno. Preferably a doc that is endorsed by

parents with kiddos who are WELL as a result of the doc's recommendations -- now

that would be a ringing endorsement! Also, I would talk with the doc over the

phone or communicate with them before packing your bags.

4. Ultimately, you have to follow your mom instinct. No one knows your child

better than you do. If you feel that this is truly a " blip " , and your daughter

is going to be fine, then you are in the right hands. However, if you feel that

you are not getting the right care for your sick child (and, I think, this is

why you joined our group) then you really have to confront the doc and, if

nothing constructive happens, move on. Perhaps you are writing to him right now!

= )

5. Just a reminder...there is a myth that IVIG is only for kiddos with

life-threatening diseases. Some of our guys decompensated over a longer period

of time -- but they did eventually need serious intervention. On the other hand,

it is possible for a kiddo to seem like they have a PID because their body was

weakened by a really bad bug -- but they are not PID. Sometimes, you have a

chicken or the egg problem but it is the child that suffers when action is not

taken. Somestimes the action is IVIG, sometimes it is considering other

diseases, and sometimes it simply monitoring the situation. All of these things

should be decided with an immuno -- there should be a plan in place, next steps,

etc. that you can hold the doc accountable to.

Again, I am hoping that this is just a blip, but I think you are wise to hope

for the best and prepare for the worst. btw, IVIG is not the worst thing --

having a child who is suffering is, as you know.

Please keep us posted.

[Guest guest]

" ...Then she says, there is just one problem.....We are booked out until mid

September. So we are scheduled for mid-September... "

-

Very frustrating! With your kiddos current circumstances you will be seeing

him shortly for an emergent visit. If you end up taking her to the hospital,

before resolving the problem(s), be prepared to fight for your kid (as

said, he responds to the crisis of the moment). Still, it might be worth faxing

him a letter -- which you can review at that visit -- whenever it may come.

If you go elsewhere, I encourage you to make sure it is a good fit.

Preferably someone that Dr. S. might listen to -- the " big guns " (e.g., Gelfand)

-- and one that will run ALL of the proper tests not give you false

reassurances. Remember, trends is what matters -- not one set of studies that

are incomplete when a kiddo has such a yucky clinical picture and history of

immune irregularities.

Sending get well wishes,

sarah larson <mom2gwynn@...> wrote:

Hello everyone-

So I called Dr. S's office today and left a message for them stating that I was

concerned that Gwynn again has a fever and is complaining of abdominal pain. I

am hoping that the kidney infection is not a break through infection as this is

how it started before. So Gwynn is laying around and won't eat. I explained that

Gwynn had her follow up with the pediatrician Wednesday, (she did not do

anything but a routine exam) Gwynn said she was feeling fine at the time except

for the cough but I would have liked her to verify that the CRP was down etc and

recheck the urine to make sure the infection cleared. I also asked about IVIG

and explained that I was not comfortable with Gwynn's clinical picture, that

three hospitilizations in 8 weeks was a lot and that Gwynn is again not well. I

stated that the quality of life was being affected and that we needed to come up

with a new game plan. Suzanne called me back and said that Dr. Shapiro really

wanted to sit down and discuss it,

that it was not something we should do over the phone. Great I thought! We are

finally getting somewhere. Then she says, there is just one problem.....We are

booked out until mid-September. So we are scheduled for mid-September but on the

short call list if someone cancels. I asked what he thought about Gwynn's

current situation and if this could possibly be a break through infection? She

said, hmmm I don't know I will run it by him. She also said that he was on call

this weekend if she gets worse. Well that is not exactly what I was looking

for!!!! I know he is really busy but she is not healthy!

I could just scream.

I am prepping lab work to forward to another doc.

~~

Schulman wrote:

-

Its me, , again. Just a few lingering thoughts...

1. I see that you are trying to prepare on all fronts (e.g., lung line, working

with Dr. S., exploring different possibilities with docs, etc.) and I think this

is very reasonable.

2. At the same time, I agree with your approach to matter-of-factly confront Dr.

S. (sorry, I thought you already did). Be methodical, tell him what you think,

and keep that back-up plan. My hope is that you will not need the back-up plan

-- but it may help your family to sleep at night. A letter to Dr. S., seems

justified, given that he has not responded to your call. In fact, his slowness

might be a blessing because it will give you an opportunity to provide him with

a " big picture " overview of the situation on paper -- perhaps one that he has

not had time to consider. It is not unusual for patients/moms to fax letters. In

fact, fax transmittals may be regarded as legal documents -- in contrast to

phone calls or emails. The template that Dayna provided is really well

organized.

3. If you chose to go elsewhere, I would encourage you to do so really

carefully. It is not worth going to another practice unless you are fairly

certain that you will get an honest re-evaluation -- an objective pair of

eyes/ears. Personally, I would not get another work-up unless I knew it was with

the " big guns " -- not just another immuno. Preferably a doc that is endorsed by

parents with kiddos who are WELL as a result of the doc's recommendations -- now

that would be a ringing endorsement! Also, I would talk with the doc over the

phone or communicate with them before packing your bags.

4. Ultimately, you have to follow your mom instinct. No one knows your child

better than you do. If you feel that this is truly a " blip " , and your daughter

is going to be fine, then you are in the right hands. However, if you feel that

you are not getting the right care for your sick child (and, I think, this is

why you joined our group) then you really have to confront the doc and, if

nothing constructive happens, move on. Perhaps you are writing to him right now!

= )

5. Just a reminder...there is a myth that IVIG is only for kiddos with

life-threatening diseases. Some of our guys decompensated over a longer period

of time -- but they did eventually need serious intervention. On the other hand,

it is possible for a kiddo to seem like they have a PID because their body was

weakened by a really bad bug -- but they are not PID. Sometimes, you have a

chicken or the egg problem but it is the child that suffers when action is not

taken. Somestimes the action is IVIG, sometimes it is considering other

diseases, and sometimes it simply monitoring the situation. All of these things

should be decided with an immuno -- there should be a plan in place, next steps,

etc. that you can hold the doc accountable to.

Again, I am hoping that this is just a blip, but I think you are wise to hope

for the best and prepare for the worst. btw, IVIG is not the worst thing --

having a child who is suffering is, as you know.

Please keep us posted.