Advice for our PEX Tomorrow?

[brooke]

My son will receive PEX tomorrow morning. Does anyone have any retrospective advice? I am a nervous Mommy but know I am doing the right thing.

[peglem]

We haven't been there yet. But good luck and God bless!

[melanie]

My son will receive PEX tomorrow morning. Does anyone have any retrospective advice? I am a nervous Mommy but know I am doing the right thing.

 

 

Hi Good uck tommorrow.Please tell me how you got BCBS to cover this I have them too they covered 1 but wont do it again HELP

[thereishope]

I haven't gone down that path, but wanted to wish you the best. Let us know how it goes.

[Debbie1]

We have also not yet done PEX yet but wanted to wish you the best for tomorrow. Please let us know how it goes.

[dcmom]

Hi Brooke-

 

I really don't have a ton of advice.

 

Make sure they administer IV fluids in the few hours preceding the pheresis.

 

Ask the nurse, if they can do the vitals at 9pm and then not until morning. The first two nights, they woke Julia up twice in the middle of the night. Finally a smart nurse changed the orders, so she could get a night's sleep! Be prepared that they need a blood sample each early morning- it cannot be taken from the central line.

 

The pheresis nurses really know what they are doing, in our case- more so than the doctors, so listen to them.

 

Don't be alarmed if you have to skip a day between treatments- it seems many of us have had to do this for different reasons.

 

Since you are local- if your son is picky, bring some favorite foods and snacks from home- I did that, and it was very helpful, esp the first day. Be on top of ordering your son's meals, and don't hesitate to ask for something special.

 

Make use of the child life specialist to bring crafts and games to distract your son.

 

Keep up the daily antibiotics afterward. Keep up on dental visits to avoid any dental work. No vaccinations of any kind.

 

I would set an appt with Dr L for about one month post-pex. I think it is important to have her document any changes. At that time she also gave me a steroid burst prescription for just in case- which we ended up needing.

 

If I were you, I would consider keeping him out of school until January- if possible.

 

It is a stressful few days, for sure. Hang in there. Julia really had unbelievable improvement, although keeping it is what seems so hard.

 

Feel free to call me.... Good luck, and definately give me a ring when you get home. You, I and Tmom will get together in January...

 

Eileen

[melanie]

My son will receive PEX tomorrow morning. Does anyone have any retrospective advice? I am a nervous Mommy but know I am doing the right thing.

 

Brooke what is your childs dx? Is it PANDAS?

[FallingApart]

Just an FYI...they CAN get the blood sample out of the central line. We insisted on it because of my daughters terror of additional pokes. We had our ped with us for the first 36 hours and she instructed that it be done. We had no additional pokes.

 

This requires a special nurse to tap into this line, but it can be done. If your child is as terrified of needles as many are, you might consider this. But it is def not standard procdure.

 

Best of luck!

[sf_mom]

I too wanted to wish you all the best tomorrow!