new doc frustration

[Guest guest]

Hi, everyone! My 3 boys did great with our friends, they were all well

there, while we were in Haiti getting the girls, but within a few days of

being home, they were all sick again. Wes had been off abx for about 10

days, the other 2 had just finished theirs. So, we saw the new, stubborn,

conservative, argumentive, complaining, impatient doc. UGH! He's

treating and like it's real, but still, even yesterday, won't

acknowlege that Wes is sick. Poor wes, trying to be polite, told him

nothing was hurting. " How do you know he's sick?? " demanded the doc. I

wanted to scream at him, but as calmly as possible explained that i live

with him everyday, i know sick, i can hear it in his voice, see it on his

face, his activity, his appetite, his irritability, blah blah blah " you've

just given the perfect description of allergies " . We've seen 3 separaate

allegerist, " well, IgA def kids never present allergies in testing, so that

doesnt' matter " . Hm, selective arrogant knowledge of a PID! The bottom

line is that even if it starts allegenic, it goes bacterial! " Dont' be so

pessimistic " . I " m desparately wondering if there is a doctor who can

really care for us. We're having a CT scan doen tomorrow, i'm sure he'll

assert it's all allergies, cause that's the easy answer, that in his mind,

cannot be disproved...

On another note, i'm afraid the girls need to see a doc, and i cant' stand

this guy... what do i do???

The girls dont' speak english, but the older one is picking up a little

already. They are slipping well into our daily schedule, but what to do

with them while i'm schooling the brothers still needs to be worked out...

I'm waiting for our new normal to emerge. The pregnancy is going well, i'm

13 weeks, and everything is looking good. Sorry to offer so much off topic

info.

Thanks! Take care, hope most of you are missing the flu.. so far so good

here... warmly, maurita, mom to Wesley, , and , allof us IgA

def, and to Adah and Elsie, newly arrived from Haiti!!!!

[Guest guest]

Maurita - remind me how old Wes is again? It might be time to start making sure

he understands how his interview with the doc influences his care and how his

care influences his quality of life. Macey started about a year ago answering

the doctors questions and stating her symptoms. She even now has the decision

of whether we schedule and appointment (within reason, fever or other outwards

symptoms I overrule her). It's good for the chronic disease kids to take on

this so that their adult life is better.

Glad to hear the girls made it here and that all is well so far. Good to hear

the baby is doing well. Hope the school schedule figures out.

Ursula - mom to Macey (8,CVID)

[Guest guest]

Ursula, How does Macey do with the Dr. seems to downplay how she feels

when we get to the Dr's and when we leave she starts complaining again how bad

she feels, I can't seem to get her to open up to the Dr's and tell them how she

really feels.

Mom to , Sel IgA def, asthma gerd

Re: new doc frustration

Maurita - remind me how old Wes is again? It might be time to start making

sure he understands how his interview with the doc influences his care and how

his care influences his quality of life. Macey started about a year ago

answering the doctors questions and stating her symptoms. She even now has the

decision of whether we schedule and appointment (within reason, fever or other

outwards symptoms I overrule her). It's good for the chronic disease kids to

take on this so that their adult life is better.

Glad to hear the girls made it here and that all is well so far. Good to hear

the baby is doing well. Hope the school schedule figures out.

Ursula - mom to Macey (8,CVID)

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

-unsubscribe@groups<mailto:-unsubscribe@groups>.

To search group archives go to:

/messages<PedP\

ID/messages>

[Guest guest]

,

Hi I am one of the lurkers here. I read the post every night and get a lot of

comfort and advice by reading others. I rarley respond to post as I feel that

others on this site have more knowledge than I and are able to express

themselves better............although I do jump in every now and then. I don't

mean to offend anyone by not responding, we are all here for each other some are

just more visible than others.

is now 14 ! Wow we have been dealing with this for 8 years, I should say

we were diagnosed 8 years ago looking back I believe it was all along. IVIG

every three weeks.

Thankfully we were at a childrens hospital and all the doctors " talk " to the

kids. When would often say he is fine in front of the doctor, then I would

speak up and say what about so and so, then the doctor would question and

would open up and tell how he really is feeling.

You might need to prompt your daughter at first. We have also explained that

now is the time to tell him, as we only see him twice a year now.

When was first diagnosed he had a lot of anger issues and we found a

wonderful counselor. Well we had two lousy ones first then found the great one.

Its been 8 years and he is doing fantastic but we still have him see the

counselor once a month. Just to have someone to talk to .............they

usually go out to lunch. She has become a close friend to him and thankfully

insurance covers it. I share this because there are so many issues they go thru

let alone being a teen, I believe the counsel;or has helped him immensly.

Just recently he went in for an acne appoinment, nothing major yet just want to

keep on top of it, well the doc made a comment that due to his immune Def he

didn't want to put him on meds but there is a new treatment with a " blue light "

my older son has done this and it worked really well. when we left the doc I

asked if he had any questions He said , Mom please don't make any more

appointments on a school holiday and don't let me die. He was very matter of

fact and I told him we had a deal.

Well I let his counselor know and she will be working with him also ........What

a heavy thing for a young man to be thinking about.

just was nominated for a state award and he had to describe who he is. He

shares about his disease in this way................this was after he shared

what he has............... " I do not tell you this to receive your sympathy. I

tell you this because it is a major part of my life and who I am today. It does

not dictate how I live or who I am, but it has shaped the person I have become.

My illness is my motivation for me. Through my illness, I have gained endurance

and strength. I have learned to overcome struggles and push past the pain. I

try to take what I have learned through my illness and apply it to my life and

to help others. " Penne

Our kids are amazing , well Im sorry this got so long! I guess I m making up

for the times I haven't posted

le