Ursula

[Guest guest]

Hi Ursula,

Thanks for asking about the boys. I sat down to the computer this morning

and was not sure if I wanted to scream or cry. I suppose that one could

blame such emotions on sleep deprivation, however, I am quite frustrated

over the recent weeks events.

is a mess. I do not know any other way to put it. has had 8

confirmed sinus infections since September. We are suppose to take him to

ENT today for a follow-up, but now immunology wants us to bring him to their

office for a C & S and an extended ( 1 hour) appointment. I have not

mentioned this to the group previously as I felt that it was not an

issue...however, I am mentioning it now and that is that 's IgA

subclasses 1 and 2 were both well below the normal values. I did not think

it was an issue as his over all number was 77 and the norms for him began at

73. Now I am beginning to wonder. is in the midst of a horrible

infection (I can tell by the smell of the pus) and a culture and sensitivity

will help but I am sorry to say that I do not see a light at the end of this

tunnel. Some of you have followed the saga for some time and know that

he has had a difficult road. His face looks like Rocky Balboa's today

(extremely swollen). gets incredibly nasty infections. O2 sats at the

PEDS office yesterday were 92, although treatments did bring it back up to

98. A CT showed that the sinuses with blocked, yadda, yadda, yadda. I

don't want another sinus surgery...I want an ANSWER to this #$% & * problem.

already has airway remodeling of the lungs and his function is low. I

am so afraid that if someone does not figure out how to control his

infections, he is going to have more (of which he CANNOT afford) lung

damage. Sorry to " chew " your ear off, I just really needed to vent I guess.

Mark.....well, that is another story. I did not end up taking him for the

lab tests (yes, I do believe the immunologist was a BIT upset with me). I

took him to the PED with me yesterday when went in. The PED examined

him and ran the mycoplasmal antibody titer test, but not the others. My

husband thinks that Mark might have EBV. I don't know what to think. All I

know is that he looked pretty good yesterday, but then starting coughing

again last night (croupy sounding) and woke up at 3am unable to breathe and

with a severe sore throat. He has had a bad pain in his right side for over

2 weeks now. I suppose I should have taken him in, however, before he gets

poked again (that would be 4th time in 1 week) I want the doctors to

consider the EBV or whatever and run everything at the same time instead of

thinking of something and sending him to get poked again. Our immunologist

is a GREAT guy and he has always shown me respect in my opinions....we have

a great partnership in that we all work together with our efforts in helping

M & K. I am a bit conservative, as is the immunologist. I suppose, I

should have followed his orders yesterday, but there are other things to

consider here and I really don't know if we could do another 2 weeks like

the previous two. The PED agrees with the immune doc, in that she suspects a

Mycoplasmal infection that caused the bacterial tracheitis. We were lucky

this time, but we may not be the next time. OK, I better get off my soap

box here. Thanks for letting me " unload " here, better here then the

doctor's office.

Autumn (Mom to Mark Cd5-Cd19 PID and )