IVIG

[MichaelTampa]

Can anyone speak to what it's like the few days following IVIG? Are people able to do their same routine right away (school, work, whatever), or is there a recovery time? Headaches, tired, ...? Experience with adults might be more applicable to me, but interested to hear whatever experiences ya'all have to talk about.

 

Michael

[melanie]

Hi Michael,

 

Dannys 16 140lbs so thats pretty close to an adult.He gets IVIG 1g every 21 days in our home.Hes fine during and after goes right back to whatever he wants.The 1st 2 times I think he was tired but not to bad.We usually go out to eat after(what ever he wants).IUnless you have an adverse reaction I wouldnt worry at all.

 

Are you planning treatments?

 

Melanie

[EAMom]

For our child (who had 2 days of high dose IVIG 1 gram/kg each day--2 gram/kg total dose) it was flu-like symptoms, headache, low grade fever...helpful to keep up the advil/tylenol (can alternate every few hours) and benedryl. Assuming similar symptoms for an adult, I wouldn't plan on working for at least a couple of days afterwards.

 

Maybe you could schedule it for a Wednesday/Thurs. take Friday off, and have the weekend to recover?

 

The higher the dose, the worse the symptoms (or so I've been told).

 

Also, many PANDAS kids have a rough 1-2 weeks after IVIG (turning back the pages, resurgance of symptoms, etc.)...so it might be good to take it easy in that respect as well.

Edited May 27, 2010 by EAMom

[Joan Pandas Mom]

My son is 5 days post IVIG. He is feeling better as far as headache an low grade fever. That only last the day after IVIG. Dr. K anticipated it so had us fill a script for 2 50mg tablets of prednizone. He woke up with a really bad headache the day after IVIG and one dose of the prednizone took care of it. He slept more over the weekend, but now is fine except for the turning back the pages. It is pretty bad. He is taking 1 mg of clonazepam in the am and pm to help calm him down a little. He said,"OCD WILL NOT leave him alone." I know a 60 year old that has IVIG every few months for an autoimmune disorder and goes hiking after.

How did you discover you had PANDAS? I am wondering if I had/have it.

[MichaelTampa]

I'm guessing 1 gram/kg means 1 gram for every kg of weight the person's body is? Melanie--1 gram total, which would be a lot less than 1 gram/kg? Maybe this is the difference between "high-dose" and "low-dose" that I remember reading about on here. My impression was for PANDAS "high-dose" was more common, "low-dose" has backfired (at least for someone)? (Think I remember reading something like that.)

 

My situation is the lyme doc gave me the strep vaccine challenge to see if my immune system would properly react and make antibodies. If my body after a month hasn't done that, then it demonstrates to the health insurance company a real immune problem worthy of IVIG treatment. My sense was, he really thought I could benefit from the treatment, but it's so expensive he's working on proving the need. Anyway, going over results of this 1 month test with one of my docs tomorrow, just trying to be prepared for a discussion on it. I'm in a bit of a precarious situation at work, was off 4 months, just returned last week, am still struggling but basically need to tough it out and be productive or will lose my job (unless disability company changes mind and approves disability). So, if it can really help me get better quickly, great. But, if it's going to make me stay home away from work for a week, that could be terrible.

 

Michael

[MichaelTampa]

My son is 5 days post IVIG. He is feeling better as far as headache an low grade fever. That only last the day after IVIG. Dr. K anticipated it so had us fill a script for 2 50mg tablets of prednizone. He woke up with a really bad headache the day after IVIG and one dose of the prednizone took care of it. He slept more over the weekend, but now is fine except for the turning back the pages. It is pretty bad. He is taking 1 mg of clonazepam in the am and pm to help calm him down a little. He said,"OCD WILL NOT leave him alone." I know a 60 year old that has IVIG every few months for an autoimmune disorder and goes hiking after.

How did you discover you had PANDAS? I am wondering if I had/have it.

 

Joan,

 

I have had a lot of health issues since childhood, they started getting much worse a few years ago. A lot of symptoms were psychiatric, some were sensitivities to fluorescent lights, perfumes, wireless devices. The symptoms eventually led me to a psychiatrist who diagnosed me with Tourette's, something I was completely unfamiliar with until then. While I might have technically squeaked in as qualifying as Tourette's, most psychiatrists would never have looked at me as Tourette's, in some ways it does not fit. Eventually ended up on the TS board of this forum, looking for a way to really fix it rather than take the antipsychotics, and then heard enough discussion on PANDAS there to start considering it. The PANDAS symptom list fits a lot better, as does the lyme symptom list.

 

Michael

[EAMom]

I'm guessing 1 gram/kg means 1 gram for every kg of weight the person's body is? Melanie--1 gram total, which would be a lot less than 1 gram/kg? Maybe this is the difference between "high-dose" and "low-dose" that I remember reading about on here. My impression was for PANDAS "high-dose" was more common, "low-dose" has backfired (at least for someone)? (Think I remember reading something like that.)

 

I think Melanie means 1 gm/kg...so her son gets about 1/2 the dose of my dd.

 

Low dose is usually 0.4gm/kg.

 

Usually PANDAS kids get a high dose: (Dr. K's dose) 1.5gm/kg over 2 days or even (Swedo's dose) 2gm/kg over 2 days.

 

1gm/kg is sort of an in between dose.

[melanie]

Michael If the lymes md thinks you are immune deficient insurance will cover it.I dont know that they will cover Dr Ks or Swedos dosages? Im not sure.Dannys dosage is 1/2 of their dosage = .60)hes 140 lbs. 1 day of treatment every 21 days.

 

Good Luck I sure hope this helps you.

It has helped danny tremendously.Id say right now 60% Its been along time of treatments but all woth it

Melanie

[Fixit]

hi melanie...

i don't remember..or if you've answered this...

your ds is going every 21 days....

is that till x time...ie 18, 21 or just a year..

or is this something that he will need to do a lifetime....

did your doc give you any thoughts on that.....

[melanie]

hi melanie...

i don't remember..or if you've answered this...

your ds is going every 21 days....

is that till x time...ie 18, 21 or just a year..

or is this something that he will need to do a lifetime....

did your doc give you any thoughts on that.....

 

Im not 100% positive what time limit this is.I see her for blood work in JUly .I know the insurance has oked it until Nov 2010 so far.I take allof this one day at a time.

 

Melanie

[Fixit]

thanks for the reply...i hear ya....

I AM SO HAPPY..your ds is getting better........Reallyy....