Immunologist visit

[Guest guest]

,

Best advice is to take detailed notes, write your questions ahead of time, and

write a list of specific points of your childs case. Have copies of everything

for them.

Our immunlogist appointments are the easiest of any, except for the labwork she

wants sometimes - 2 of 3 times we have run blood tests. First to test for other

disorders, the last time to test liver enzymes after being on cimtidine for -

months. I wish we'd tried the emla cream that I've seen recommended - Dani

doesn't give blood easily. Last time they had to try 3 times to get enough. Make

sure your child is well hydrated and take juice or snacks with you for after.

While we spend a lot of time talking and going over the fever charts - we also

spend a decent amount in the waiting room. Luckily ours has cool fishtanks to

look at. The first time we waited 2.5 hours before going in and then only spent

20 minutes with the doctor.

Best of luck.

~Ginger

Systems Solutions Principal, CAR Financial Services

Work: (770) 828-1397

TREO: (404) 915-5035

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[Guest guest]

Thank you. Is it crazy to ask my Ped. to fax me the records of the

visits? I only know the dates of the Nov & Dec visits.

Also, last might she was running a mild fever and I thought this

cannot be happening, we just did this on the 27th of Dec. But this AM

it was gone (waiting to see if it pops back up and daycare calls!)

Has this happened to anyone. She was totally fine this morning. Last

night very weak, just wanted to sleep and did not eat. All the signs

an episode is starting.....

[Guest guest]

Thank you. Is it crazy to ask my Ped. to fax me the records of the

visits? I only know the dates of the Nov & Dec visits.

Also, last might she was running a mild fever and I thought this

cannot be happening, we just did this on the 27th of Dec. But this AM

it was gone (waiting to see if it pops back up and daycare calls!)

Has this happened to anyone. She was totally fine this morning. Last

night very weak, just wanted to sleep and did not eat. All the signs

an episode is starting.....

[Guest guest]

I don't think they could fax the entire records. My son's file is inches thick,

as I'm sure you daughter's is too.

I just signed a release and picked the records up a few days later.It certainly

in not unreasonable to ask for records. I'm in the process of taking my son's

records, putting them in " laymans " terms and putting it in a nice binder. Our

immunologist scheduled a consult this Saturday with a rheumatologist from the

NIH who is coming to his office to talk to all his " problem " patients and I'm

coming with my binder, including messages from this site!

If it makes you feel any better to have miserable company, my son started

fevering yesterday. I left work early yesterday and will be out today and

tomorrow. Still barely hanging onto employment by a string!

[Guest guest]

I called the Urgent Care Hospital they are mailing them, the Ped

office I have to pick them up. So I guess I am on the right track.

I am a AVP for one of the worlds largest bank, but last year I tried

to get away from missing work but as the year goes on -its

unavoidable. And I worry what will happen. My boss has a son less

than a year, so she NOW gets it when you have a sick kid and have NO

choice. My mother in law is retired and works one day for 4 hours a

week. So we have her to rely on -THANK GOD for that or I would be in

trouble. (I have a manager who reports to me out sick - we all know

what thats like caring for a baby while sick, she cried she was

afraid I would fire her, I said YOU have NO idea, not to be worried)

I just wish there was a solution. Then I saw Mom's post T & A that the

fevers returned. Now what???

[Guest guest]

I had my doctor's office run me all the office visits that my son ever

had - so I could go back and look at how long the fevers were

lasting . . .

Hannah

[Guest guest]

All sounds appropriate but I would say that function is more important than #s .

His level and chronicity of infections is a key to how sick he is. I would keep

educating your self with the materials through IDF so you can feel comfortable

with the care you are getting. Quality of life and keeping the organs healthy

for the future has always been my goal. Since the more damaged they get the

worse his future is going to be.  I would also get a second opinion in the

future. Have you seen a Pediatric GI doctor for his GI issues?

BARBIE  

From: stacy171 <stacy171@...>

Subject: Immunologist visit

Date: Tuesday, September 22, 2009, 12:21 PM

 

Maybe I should say allergist visit, because I don't think he's an official

immunologist. They do have immunology clinic though. Is that good enough?

My son is 5 and has low IgG (upper 300's) and low IgM (just below cut-off). He

didn't seem to think these values were too low and supposedly are average for

pediatric values. Does that make sense? If your immunoglobin values don't

usually change, then wouldn't they be the same when he's an adult too?

He mentioned that possibility of a rare condition, intestinal lymphangiectasia,

as a reason for his loss of immunoglobins. It's where the lymph in the bowel

busts and dumps its contents into the gi tract. So, you get low protein, low

lymphocytes and low immunoglobins. My son has significant bowel issues, but I'm

not sure this will fit.

We are doing tests to evaluate past immunity for pneumococcal vaccine but his

tetanus and diptheria are already low/none. We're doing testing for lymphocyte

subsets (complete B/T cell) and stool analysis for alpha-1-antitrypsin .

Does this sound right or anyone have any insight?

Thank you,

[Guest guest]

All sounds appropriate but I would say that function is more important than #s .

His level and chronicity of infections is a key to how sick he is. I would keep

educating your self with the materials through IDF so you can feel comfortable

with the care you are getting. Quality of life and keeping the organs healthy

for the future has always been my goal. Since the more damaged they get the

worse his future is going to be.  I would also get a second opinion in the

future. Have you seen a Pediatric GI doctor for his GI issues?

BARBIE  

From: stacy171 <stacy171@...>

Subject: Immunologist visit

Date: Tuesday, September 22, 2009, 12:21 PM

 

Maybe I should say allergist visit, because I don't think he's an official

immunologist. They do have immunology clinic though. Is that good enough?

My son is 5 and has low IgG (upper 300's) and low IgM (just below cut-off). He

didn't seem to think these values were too low and supposedly are average for

pediatric values. Does that make sense? If your immunoglobin values don't

usually change, then wouldn't they be the same when he's an adult too?

He mentioned that possibility of a rare condition, intestinal lymphangiectasia,

as a reason for his loss of immunoglobins. It's where the lymph in the bowel

busts and dumps its contents into the gi tract. So, you get low protein, low

lymphocytes and low immunoglobins. My son has significant bowel issues, but I'm

not sure this will fit.

We are doing tests to evaluate past immunity for pneumococcal vaccine but his

tetanus and diptheria are already low/none. We're doing testing for lymphocyte

subsets (complete B/T cell) and stool analysis for alpha-1-antitrypsin .

Does this sound right or anyone have any insight?

Thank you,