Re: Victory

[Guest guest]

Ursula.....

CONGRATS to Macey on the GI check up!!!!!!!!

Keep up the good work )

Autumn (mom to Mark Cd5-Cd19 PID/ GERD, ASA, A1A)

[Guest guest]

Ursula:

I think that this is great news for Macey. If I remember right, just a few

weeks ago you were a little concerned that there was a new crop of GI

problems coming up and she would need another PH probe. Isn't it amazing

how our kids keep us all guessing and on our toes? The saying on the fifth

floor--the " sterile floor " --of our children's hospital when did the

unexpectedas far as tests and proceedures goes is " And then there's

Jake--Jake is Jake. " It would be great to get her intake down as an early

Christmas gift.

Congratulations!

--mom to --dysgammaglobulinemia, etc.

Victory

Macey has scored a big victory over the GI/PID monster. As of today she is

officially off all GI meds and has no GI symptoms to complain about. They

(pediatrician and ped GI) agreed today that she can come off her Lactulose,

Propulsid, and when this last week of Pepcid is over she doesn't have to

continue that. Hooray. This virus in October actually reversed her

motility. She is going everyday and sometimes twice a day.

Plus, we were told that since the Flovent is doing its job that we can stop

Intal nebs. That means no more nebs unless it’s a Xopenex neb as a rescue.

But lately I've been reading about albuterol Rotadisk so nebs may be a thing

of the past.

Next is to convince the immuno that Macey's iron levels have been stable for

the past 6 months and to let us take her off the prescriptive iron. We

tried to convince Dr. Harville of this but no go.

Then (yes we're on a roll) we are going to call the ENT and see if we can

stop the Vancenase since the MRI in March and September's sinus CT showed a

wonderful view. We will continue the Atrovent but since the Vancenase is

pretty much left over from her polyp days and those seem to be gone we hope

we can stop it.

Then this month is her VCUG anniversary so when we repeat that and show that

her kidney reflux is gone (optimistic aren't I!) we can stop the Septra.

But there may be the immunologist stepping in there to continue it as her

prophylaxis.

We hope by Christmas to knock 6 meds off her med list. She is on 15 right

now. 14 not including IVIG. So knocking out 6 would be great. So as of

today here's what she's gobbling down or snorting in each day. Some several

times a day.

Septra x 2

Pepcid x 2

Zyrtec x 1

Vancenase x 2

Albuterol PRN

Flovent Rotadisk x 2

Hydroxyzine x 1

May-Vita x 1

Atrovent x 3

Singulair x 1

DDAVP x 2

IVIG x 3 weeks

So hooray for zapping the GI monster in the rear end. Macey's in a

wonderful mood tonight, it's like she's clued in that something good was

accomplished.

But the cup is only half full. We also received at the peds today a blood

slip to have another full autoimmune workup done. They think she may have

JRA (Juvenile Rheumatoid Arthritis) plus we received a slip for her to start

PT. OT and PT have to get together this week to come up with separate goals

and to tell the truth her ped OT has been doing a lot of stuff PT could have

done along time ago. Hopefully this will free up the ped OT to do more SI

therapy. The ped is willing to diagnose her with JRA even if it is serum

negative if we can rule out the CP. So the plan is to do the autoimmune

workup at Saturday's infusion and if it comes back negative do the neuro/CP

workup at ish Rite. If the neuro says she doesn't have CP then the ped

will diagnose her with sero negative JRA. If the autoimmune panel comes

back positive then we won't even fool with the neuro workup.

All in all I think it's been a good visit today and much was accomplished.

Her forehead is healing well with the Dermabond and she's had several more

falls this week but it hasn't opened back up.

Hope everyone is well and staying warm.

Ursula Holleman

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

reflux, Sensory Integration Disorder, Diabetes Insipidus)

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.