Going earlier for IVIg-Monday!

[cobbiemommy]

We are taking DS in for his first IVIG with Dr. B on Monday and Tuesday. He previously had one with Dr. K, before we knew about the primary immunodeficiency.

 

DD, 15, will also be having an appt to see if we can figure out why she is not getting over the Bartonella and the accompanying symptoms. My daughter went from straight a's and three sports, plus band and FFA, to the girl who could hardly get out of bed and could not remember anything from one moment to the next. Her freshman year in basketball, she would easily score 18-28 points a game. Last year, she barely got to play at all, and the coach questioned her "work ethic". DD didn't want anyone to know she has bart.

 

I feel truly blessed that someone cancelled their IVIg. We will get help for one and start getting answers for the other!!

 

If any of you will be there Mon and Tues, we will see you there!

 

Cobbie

[DeterminedMomVA]

What great news! Congratulations! Hope your whole family is feeling better soon!

[Dedee]

I am so happy you are getting in early! What a blessing! Hope you find some answers for your daughter. I am so sorry for what she is going through. Sounds really tough, especially for a teenager. Praying for healing for your family. Let us know how things go.

 

Dedee

[tpotter]

YEAHHHHH!

 

If it's a primary immune deficiency, can't you get something closer to home from a local immunologist? I would think that would be readily acceptable as a dx for them to treat? Is this something you're going to consider in the future (you might even be able to do it through home care?

Edited June 22, 2012 by tpotter

[cobbiemommy]

YEAHHHHH!

 

If it's a primary immune deficiency, can't you get something closer to home from a local immunologist? I would think that would be readily acceptable as a dx for them to treat? Is this something you're going to consider in the future (you might even be able to do it through home care?

 

I did find a doc in St. Louis that will treat, but want to stick with Dr. B through the first few treatments. I am not happy with docs at Children's Mercy in KC, so trying to avoid that place.

[tpotter]

YEAHHHHH!

 

If it's a primary immune deficiency, can't you get something closer to home from a local immunologist? I would think that would be readily acceptable as a dx for them to treat? Is this something you're going to consider in the future (you might even be able to do it through home care?

 

I did find a doc in St. Louis that will treat, but want to stick with Dr. B through the first few treatments. I am not happy with docs at Children's Mercy in KC, so trying to avoid that place.

 

 

I totally get it :-) How often is she going to need it, and is it going to be HD or LD, given that it's a primary ID?

[minimaxwell]

Cobbie, how is it going? Hope all is well.

[cobbiemommy]

We just got home and are pooped. It is 10 p.m. Central time. He did very well during the infusion, but is extremely cranky and tired. Can't imagine why... No headache, no nausea!!! Yeah.

 

Hoping the effects kick in as quickly as they did two years ago. We had signinificant improvement in one week.

 

Time to go get ready for work, tomorrow. Thanks for the good thoughts.