Re: Appointment With Immuno/Dale & Everyone

May 11, 2006

In a message dated 5/11/2006 4:59:39 PM Pacific Daylight Time, dale@...

writes:

I'll be praying specifically for your wisdom to know whether to work

with this doctor or move on.

___________________________________________________________________________

Dale,

Thank you. I would have moved on already if there were any other Pediatric

Immunos who accept Bri's insurance here in Portland. I have thought of

calling ID docs.

Sandi, Mom to --age 13--CVID

May 11, 2006

I will be praying. Keep us posted.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

sassykay59@...

Sent: Thursday, May 11, 2006 7:47 PM

Subject: Appointment With Immuno/Dale & Everyone

Hi Everyone--

Just wanted to let you prayer warriors know that we have an appointment

with the Immuno tomorrow at 3 pm. I prayed before that his heart would

soften

and he would treat Bri (and accept his insurance). This time, I'm praying

that

his heart will soften and he will stop being so stubborn for the sake of my

child. I am armed with the CT scan results--this three month sinus

infection

has happened while on IVIG. I would also love to talk him into every three

weeks rather than four. Four doesn't seem to be working for us anymore.

But one

thing at a time, I guess?? BTW, his dose is more than adequate--even if he

were to gain more weight so that isn't the problem.

Sandi, Mom to --age 13--CVID

_____

May 11, 2006

Just wanted to let you prayer warriors know that we have an appointment

> with the Immuno tomorrow at 3 pm. I would also love to talk him into every

three

> weeks rather than four. Four doesn't seem to be working for us anymore.

>

I'll be praying specifically for your wisdom to know whether to work

with this doctor or move on. The half-life for IVIG has now been

proven to be 21 days -- so many, many immunologists have switched to an

every 3 week schedule. Let us know how it goes.

In His service,

dale

May 11, 2006

In a message dated 5/11/2006 7:35:19 PM Pacific Daylight Time,

MarloDarr@... writes:

I do have to say since we have been on SUBQ Chelsea IGG levels have never

been better. It has almost doubled. It is truly amazing. I just wish her ears

would behave :0(

Marlo--

Thank you for all of the information and encouragement. I hope Chelsea's

ears get better--quickly!! I know that is about the grumpiest Bri ever

gets--when his ears are infected.

Sandi, Mom to --age 13--CVID

May 11, 2006

Sandi & Group

I thought I would let you know that Chelsea was on IVIG through her Infectious

Disease/Pediatrician Doc for almost 9 years, we recently changed to an

Immunologist just this last December when we decided to go to SubQ and our ID

doc was not comfortable and asked for help from an immunologist. I remember

years ago how the immunologist (5 different ones) all said Chelsea look to

healthy and to allow time for her to grow out of it. Needless to say here we

are 10 years later (8years on IVIG) and the magic Doctor #50 is our new lease on

life and Chelsea just Adores him. The funny thing is the new immunologist

actually saw Chelsea back when she was only 2 years old. Funny how things work

out. So don't give up the fight and please send our prayers and thoughts

and he is definitely not alone.

I also wanted to let you know that Chelsea has been having ear & sinus trouble

again since December and is on her fourth round of ABX this time for 3 weeks.

We are scheduled to see a new ENT at UCLA on May 22 after waiting almost 6 weeks

to get in. It is very frustrating because Chelsea has always had terrible

Sinuses, Ear Infections which led to a Mastoidectomy, 7 pair of PE tubes, 4

Sinus surgeries and these infections got better over the last few years and then

all of sudden in December we started again with Ear infections and sinus gunk.

I do have to say since we have been on SUBQ Chelsea IGG levels have never been

better. It has almost doubled. It is truly amazing. I just wish her ears

would behave :0(

Take Care!!!

Marlo, Mom to Chelsea 11 (CVID) Brittany 15, Devin 14

Marlo

Independent Jewelry Consultant

Cookie Lee

818-425-7847

805-584-8251 (fax)

Re: Appointment With Immuno/Dale & Everyone

In a message dated 5/11/2006 4:59:39 PM Pacific Daylight Time, dale@...

writes:

I'll be praying specifically for your wisdom to know whether to work

with this doctor or move on.

___________________________________________________________________________

Dale,

Thank you. I would have moved on already if there were any other Pediatric

Immunos who accept Bri's insurance here in Portland. I have thought of

calling ID docs.

Sandi, Mom to --age 13--CVID

May 12, 2006

Sending prayers your way..........

~~

May 12, 2006

Sandi-

I will be praying for , you, and the doctor...does your dr give any reason

not to switch to 3 weeks? anything to do with your insurance? amanda's dr

actually thought it was a good idea and our insurance didn't need preapproval-

still seeking diagnosis for leg pain, but sinus infections improved- only

steroid meds for polyps. Most important, as Dale pointed out, they know now the

half-life for IVIG is 21 days, leaving them vulnerablen for a week. God with

your heart and tell the doc what you want and why - and we will be praying for

you all!

Keep us posted!

mom to amanda, 15, CVID, chronic daily migraine, chronic leg pain

sassykay59@... wrote: Hi Everyone--

Just wanted to let you prayer warriors know that we have an appointment

with the Immuno tomorrow at 3 pm. I prayed before that his heart would soften

and he would treat Bri (and accept his insurance). This time, I'm praying that

his heart will soften and he will stop being so stubborn for the sake of my

child. I am armed with the CT scan results--this three month sinus infection

has happened while on IVIG. I would also love to talk him into every three

weeks rather than four. Four doesn't seem to be working for us anymore. But

one

thing at a time, I guess?? BTW, his dose is more than adequate--even if he

were to gain more weight so that isn't the problem.

Sandi, Mom to --age 13--CVID

May 12, 2006

In a message dated 5/11/2006 9:35:19 PM Central Standard Time,

MarloDarr@... writes:

> Ear infections and sinus gunk. I do have to say since we have been on SUBQ

> Chelsea IGG levels have never been better.

Marlo:

Have you considered allergies in addition to the PID? Reason I ask is that

when I go through periods of back-to-back-to-back ear infections, for me, it's

due to mold exposure. Long story but we had a massive mold remediation a few

years ago (not our current home) and anything I couldn't bear to throw out but

didn't think was perfect was put in our new garage, not taken into the home. It

was only a couple of boxes! But during a period when I was storing stocked-up

canned goods in the garage, I got SIX ear infections in five months!!! It was

awful!!! My ENT said, " stop sticking your nose in boxes " (meaning the moldy

stuff) and my doc said " stop storing food in your moldy garage! " . I NEVER get

ear infections now, unless I've been poking around in those stupid boxes or

their vicinity.

Just a (long-winded) thought, since it seems to be coming on sort of suddenly

--

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

May 12, 2006

Hi ,

Yes Chelsea has been tested for allergies and shows alergies to Bactrim,

Benadryl & Adhesive tape only. I did ask about mold alergies specifically as we

had a ceiling colapse and had to move out of house into a Hotel for 3 months

during reconstruction. We have since moved and had the new house tested for

mold just for peace of mind. Chelsea has had problems with Ears, Sinus &

Tonsils since age 8 months. So once we started IVIG at age 2 the infections

were not as much, still had them hence the 7 pair of PE tubes. I think our

problem now is that Chelsea still has a PE tube in one ear that has hung on for

life apparently as her last pair were put in almost 6 years ago so the Doc

thinks the tube can be causing our problem in the left ear however the right ear

looks like she may have a cyst of some sort. Chelsea never complains and has a

very high pain tolerance. My main concern is that her hearing is being affected

and her pain is much worse than normal.

Today is day three on Cipro and I think it has kicked in as Chlesea did not wake

up during the middle of the night needing pain medicine.

Thank :-)

Marlo Mom to Chelsea (11 CVID) Britttay 15, Devin 14