Hizentra - Can you guys educate me on this ?

[thomasmom]

Hello everyone.

 

Once again I am on this website looking for answers and support. My ds9 has started ticcing again after exposure to a fairly virulent virus he got exposed to at school (and brought home to me unfortunately) Titers were drawn-no change, Ibuprofen doesn't work this time. So we started on some steroids today No change as of yet. (me too on the steroids, I just can't shake this virus) Thomas remains on same prophylactic dose of Augmentin. The continuous tics are driving me crazy.

 

I came across some information about Hizentra tonight. I read on the drug info website that is is used for Primary Imunnodeficiency Disease as is IVIG. My ds gets great releif from IVIG it just doesn't last that long (2 months this time) This Hizentra seems to be given weekly over a shorter infusion. Anyone tried it ? Does it work for PANDAS kids ? Is it expensive ? Do you have to get it in a medical facility ?

 

Thanks for any info !

[browneyesmom]

Hi there,

 

I'm kind of new at using Hizentra for my dd with PANDAS - we've been unable to clear strep infections for her since spring 2010, but I see you have no responses yet, so I'll give it a shot...

 

My dd has IgA & IgG deficiency. Our Immunologist ordered Ig infusions... said we could either do monthly IVIg that is quite a distance from our home, or we could do weekly infusions at home that I can do myself. I'm an RN & there is already so much time stress on her, so I chose weekly at home.

 

It took about a month for our insurance companies to approve it through a specialty pharmacy as it is of course, expensive - we're approved with primary & secondary - not completely certain at the moment what, if anything we will have to pay, but there isn't much choice in the matter at this point - she needs it. If you are already approved for the monthly IVIg, I would think it might go faster for you to switch to this, if that is appropriate for your son's case... but, that's just a guess.

 

They mail it directly to our home (can't sit outside too long as it's best stored at room temp. Everything we need is in the box. Our nurse came out for the first and second infusion, basically watched me do it and left her phone number to call for any future questions; otherwise, we're on our own now - I did write up a procedure sheet for my own use. There is a 24 hour line we can call for a nurse or pharmacist - I used it tonight - works great.

 

It's still a bit early for us to say how well this will work for her as they told us it would take at least 2 infusions before she begins to achieve a steady state of the Ig. So, just too soon to tell anything yet.

 

My dd is 11 years old & they base it on weight. For her, she takes 4 grams (which is 20 ml) and she has 120 tubing. Both infusions took about 2.5 hours for her - this really depends on the tubing as that is what determines the rate. There are 2 sites for her. The needles for her are 4 mm. They sent me Lidocaine to help numb the site before infusing. She does not want me to stick her because she said she wants to keep me for "comfort", not the one who sticks needles in her tummy. No problem... I've already taught her how to monitor her blood sugar for hypoglycemia - I offered to teach her how to insert the needles herself & she said that would be fine. lol... she is already refusing to let anyone else remove the tape or needles, so we just stand in front of her and watch, available if she needs help - she does let me apply the bandaid afterward.

 

I think that's all I can really say about it at this point... I hope to have more info over the coming weeks. Feel free to inbox me anytime for further info as I'm not always on here & sometimes don't see responses to my posts. I hope this helps. Take care.