tis the season for sinus nasties

[Guest guest]

Sinus season has hit and hit hard at the Holleman household. Finally over

my sinus woes and low and behold both girls get it. Macey was having

headaches last week and at her Endo appointment the Endocrinologist could

even see how nasty her nose looked. Add that the dark circles and swollen

lower lids (a new symptom for her) and walla more Ceftin.

Then yesterday I took in for her allergy follow up with the ENT. He

starts to ask her how things are, is she sleeping ok, is she having any

runny noses, any cough? says the runny noses are fine once she blows

her nose. At which point he asks, well what color is it when you blow?

doesn't bat an eye and says " Green " . EXCUSE ME!

Now realize is my healthy one and pretty much wouldn't know that green

isn't the color of choice. We have tried lately to keep Macey's medical

talk and symptoms between Les and myself so that doesn't feel like the

sky is falling in on her sister.

So the ENT rephrases the question thinking misunderstood him. But she

answers the same. So he turns to me and says " has she run any fever " . I

don't know, I don't take her temperature, she's my healthy one. She always

feels warm but she has a high metabolism and compared to Macey (who runs 96

or so) she's always warm.

So it's off to xray (which thankfully is in his office now that they're in

their new building) and 30 minutes later we have an xray with nasty

maxillary sinuses. So it's Cefzil for my little green snot monster.

Macey has her follow up for the pneumonia tomorrow and they'll either do

another xray of her chest or just go on and do a CT. Hopefully all will be

clear. We had initially seen an improvement in her peak flows after

starting the Pulmicort Respules but that has tapered off and she's back down

to her usual numbers.

Sorry to hear that pumpkins are unwell.

Annette - it's great hearing from you. I apply to RN school in January.

Just finishing up A & P now. Finals next week.

Jackie - congrats on 's CT and PFT results. Has he had complications

in the past? Low function or scarring in his lungs? Does he or did he have

bronchiectasis? maryellen.conley@... Her is what I have for Dr.

Conley if you still need it. I can't remember if it was Dale or Barb who

mentioned in an email that the IDF was giving Dr. Conley an award at the IDF

patient/family conference next year in Baltimore. I think it may have been

Barb in an email to another group.

Dale - Barb's from Virginia - she lives right outside of D.C. I'm so glad

you enjoyed the meeting. Georgia has been working for years to get an IDF

chapter started here but we are low priority to and will just wait

patiently until we can get something going. How is feeling?

Tina - Macey has also been off IVIG since May. She has had 6 sinus

infections, 4 ear infections, 2 pneumonias and 2 GI bugs. But she clears

them all with oral antibiotics and unless something looks worse on her chest

CT then we'll stay off the IVIG for now. We'll repeat blood work again soon

to look at IgG levels and subclasses. I wish he felt better and I hope that

things improve soon.

- how did 's surgery go?

- how is feeling?

More tomorrow when we see the ped for the chest.

Big bit of good news - today Macey had a small battle of wills about going

to OT therapy so after some discussion with the therapist over the phone we

decided that it might not be best to take her into the pool every week

during the winter since she had had so many infections lately and that the

therapist would call the ped to see if Macey could be discharged from

therapy with an order to reevaluate in 6 months for permanent discharge or

sessions again.

OT at the school will still follow her but that means no more pool therapy

needed. Hooray.

Cya'll tomorrow.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID