life update

[Guest guest]

- 's mom - glad to hear that there is some direction ahead.

Macey's immune doc was at UF-ville at one time I think.

Sue G - M & M's mommy - how did the talk with the ped go? Any new thoughts?

I was hoping the week break would help but still think it might take up to a

month before you'd see any difference.

- glad everything was negative. when you mentioned the 2.7 WBC my

mind screamed " VIRUS " . it can zap the best of the kids. Macey had the flu

in January and I'm scared of what it could have progressed to if she hadn't

started the Flumodine (antiviral). Sounds like Zach was sick enough for

both of them. We're still thinking of Stone Mountain for the night of the

28th. I'll check back with you later.

Autumn - Is any better? How's the swelling? Looking forward to those

faxes. Hope Mark's stomach is easing up. good luck this weekend. Anything

more develop with the " Strep-child " ?

Barb Ballard put me onto a really neat service tonight. At www.efax.com you

can sign up for free fax service. They assign you a telephone number and

you can have people send your faxes to this number and it's converted to an

email and sent to you. Check it out if you have a chance. They make their

money by advertisement on the web page and the ads don't come up o your

faxes.

My fax number through them is . Now those of you who know me

know that 603 is know where near my phone number. They assign numbers out

of the Midwest. So anyone who comes across a good PID article in print can

fax it to me and I can post it on the PedPID page.

I've started creating the Acronym page so bear with me. should be

http:www.netpage.org/PedPID/acronyms.htm

Kathleen - good luck with Lucas's surgery. I'll keep the date in mind.

what have they discussed doing during it? I hope you can rest easy

afterwards and this will help gain some headway.

Ursula Holleman

Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I

left kidney reflux, Sensory Integration Disorder)

ICQ # 28592349

http://www.icq.com

 

PedPID email list archives

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[Guest guest]

Dear Friends,

Thank you for all the support with . Unfortunately, he is the same. I

took him to the Pediatrician Thursday for severe angioedema of the face, nose

and eyes and moderate angioedema of the throat, blood in the stool, GERD

symptoms...and really bad asthma. They did a nasal culture...as he had so

much thick green pus (as they referred to it) in the left side of the nose.

They also did a rapid strep and a three day strep and a blood count. The

blood count suggested bacterial infection and the two streps were negative

(as of today). The nasal is pending. My feeling, along with 's

immunologist is that it is H-flu...something that he has been battling for a

long time. They started him back on his antibiotic and added Atarax to his

Zyrtec. He will be restarted on the Prelone Wednesday..too soon to start him

now, being just post chicken pox. WE had a very long talk with 's doctor

yesterday. He is going to meet with my husband and I on May 24th to " talk "

to us and go over his next plan for . All of 's physicians agree

that despite all of the medications (and get a load of some of these

doses.....Atarax 1 tsp 4 x day, Zyrtec 1 tsp 2 x a day, Singuliar 5 mg 2 x a

day, Prevacid 30 mg, Zantac 3 ml 2 x a day, Nasalnex 2 puffs 2 x a day,

saline washes...as much as possible, Flovent 220 2 puffs 2 x's a day, Intal

and Proventil by neb 4 x's a day and more when needed, maalox 1 TBS 6 x a

day, Zithromax) that continues to be a very sick little boy. His PFT

tests were low despite being on high doses of Prelone and antihistamines,

inhalers, and singuliar. He is getting worse by the day and this has been

ongoing but since birth but constant since October. The plan is to contact

to of the leading doctors (one by the way is from National Jewish and knows

of from a previous presentation) in respiratory mucosal disease. I am

so disheartened as are his doctors. 's immunologist told me yesterday

that this is very difficult for him as well as he has gotten to know so

well and is worried and frustrated that 's body is not responding to

treatment anymore. Please keep in your prayers.

I really need to vent about the Strep issue....you would not believe the

outcome of that but I need to run for now. I will write more later.

THANKS for letting me get this off my chest..I know does not have PID

but he does have an immune system dysregulation and I am so lost right now

with worry for him.