5th IVIG today

[peglem]

Aye, yi yi- it was very difficult to get the IV port in today! But we left it in for tomorrow, so that should really help. My daughter has hypermobility in her joints and even with 5 of us in there- could not hold the arm still enough to get a line in! Finally brought in ultrasound to locate a vein above her elbow. Once we got the line in, everything went great!

 

The immunologist has decided to continue every 4 weeks at this dose (1.5g/kg), they are going to place a port under her skin, so we won't have to do the stick every time, and we're going to try to do the whole dose in one infusion (one day/month instead of 2).

[melanie]

why every 4 weeks.Dr B told me today every 8 weeks.Oh No dont confuse me Peg!!

 

Glad it went well

 

melanie

[kimballot]

I am so glad they will put a port in. It will make it much easier. I am so glad Allie is doing well with this!

[peglem]

why every 4 weeks.Dr B told me today every 8 weeks.Oh No dont confuse me Peg!!

 

Glad it went well

 

melanie

I don't know. At the lower dose we were doing every 3 weeks, and when the decision was made to go with a higher dose, it was ordered for every 4 weeks. Frankly, I was so floored that they were willing to do the higher dose, it never occurred to me to ask! But, isn't the half life of the IgG @ 4 weeks?

[tapiash]

Aye, yi yi- it was very difficult to get the IV port in today! But we left it in for tomorrow, so that should really help. My daughter has hypermobility in her joints and even with 5 of us in there- could not hold the arm still enough to get a line in! Finally brought in ultrasound to locate a vein above her elbow. Once we got the line in, everything went great!

 

The immunologist has decided to continue every 4 weeks at this dose (1.5g/kg), they are going to place a port under her skin, so we won't have to do the stick every time, and we're going to try to do the whole dose in one infusion (one day/month instead of 2).

 

 

My son is having his 1st IVIG on Wed. It is a high dose but we are only scheduled for a one day infusion. This scares me. Shoulder it take two days. How do you know when it is time for anther IVIG. What symptoms do you look for?

[peglem]

Aye, yi yi- it was very difficult to get the IV port in today! But we left it in for tomorrow, so that should really help. My daughter has hypermobility in her joints and even with 5 of us in there- could not hold the arm still enough to get a line in! Finally brought in ultrasound to locate a vein above her elbow. Once we got the line in, everything went great!

 

The immunologist has decided to continue every 4 weeks at this dose (1.5g/kg), they are going to place a port under her skin, so we won't have to do the stick every time, and we're going to try to do the whole dose in one infusion (one day/month instead of 2).

 

 

My son is having his 1st IVIG on Wed. It is a high dose but we are only scheduled for a one day infusion. This scares me. Shoulder it take two days. How do you know when it is time for anther IVIG. What symptoms do you look for?

Our immunologist is doing them every 4 weeks because of both immune deficiency and PANDAS, so we are preventing symptoms, I guess. I hope your child does well w/ the one day infusion. I think it will be okay for my daughter because she has done well with infusions so far and has had no problems when they increase drip rate. On the 2 day, the actual drip time is about 3 hours each day. I'm thinking drip time on the 1 day will be about 5 hours.

 

I was pretty apprehensive about the 1st IVIG, but I see now that the nurses really know what they are doing and they monitor the procedure very closely.

[wornoutmom]

My son is having his 1st IVIG on Wed. It is a high dose but we are only scheduled for a one day infusion. This scares me. Shoulder it take two days. How do you know when it is time for anther IVIG. What symptoms do you look for?

 

 

Can I ask why one day? The nurse at the infusion center we used told me they would never infuse a 1.5 dose in one day, even when the doctor wrote the order that way. She actually wanted to split it into 3 days just in case (we did just 2 days). She said the risk of adverse reaction would be too high when doing that dose in one day...