I think Im going to give up on the IVIG

[JAG10]

That's a great idea, Alex!

 

Melanie- if you don't already have an email address for your immunologist, try to get one before the weekend. That might make it easier for two busy docs to make initial contact.

[wornoutmom]

Melanie:

 

One more thought. Go to Dr K's website and print out the page about IVIG - he specifically states his dose there. I printed it out for the neurologist we are seeking IVIG from and told him Dr K has treated over 500 PANDAS patients. He took the papers I presented and agreed to look into it, since his experience is only a handful, with about a 50% success rate. The Dr. bristled a bit at first, but the nurse pract. asked to read the printout out and show it to the folks who do the IVIG. So even if your doc wont accept it at first, maybe having something in writing to review later might help. You might also think about emailing Dr. B to see if he'll give you something to print out?

[momofgirls]

Melanie

Good plan to speak with the Dr in person on Monday but...also maybe if you could get Dr K or Dr Bouboulis to speak with your immunologist regarding the use of the higher dose then she will budge. Dr B is now using the higher dose and maybe she will respect hearing it from another immunologist. He is really flexible and would probably be willing to help. He is treating my daughter and if you are interested PM me and I will give you his contact info. I would even be willing to talk to him for you just to see if he could make the call. He would totally do it.

You are not giving up.

 

Thanks so much for all of your love.I need it.I have an appointment on Monday with the immunologist 3 pm.I want to speak to her face to face. I spoke with her nurse about the IVIG and she keeps saying Swedo doesnt speak of these dosages only on the 1999n study Thats it! I told her all of the people that had success on this site ,anyway Ill go monday (spring break) THANK GOD I can spend he week at drs offices without taking time off of work

 

I need papers people ,papers of studies successes I need to go in armed with info !!!

 

Melanie

[dee45]

Hang in there Melanie! hoping you can get this all figured out.

 

Deanna

[3boysmom]

Melanie:

 

Heart breaking over here for you...I can really relate to your post, and we haven't even started the IVIG yet. I really do question how long a person can go on in "supermom" mode without cracking. Maybe you need a little vacation from PANDAS?? Not that you aren't living with the reality of PANDAS daily, but I mean taking a break from the reading and charting and calling and doctors appointments etc. etc. Seems like the horrible thing about this disease is that we have hope that we can fix this if we just work hard enough (do enough research, talk to enough people,convince enough doctors), and so we work and work and work. And we turn to the doctors for answers and half the time time (or more) they don't have them and wont spend the time energy we need for them to figure it out. We isolate, we forget to take care of ourselves, we question our own sanity, we don't grieve, we burn out. So maybe after this last infusion, you can take a break. Give yourself some time to just live. Do some things with your time you haven't done in a long while - for you and your family. Maybe Danny could use a break also. It may be really hard to do that (I find it hard to go even one day "pandas free" right now) But then when you feel more refreshed (could be a few days, a week, could be a month could be longer) you'll know if your ready to get back in the game and continue to pursue more answers. ((HUGS))

 

 

Well written...does anything else even exist anymore?? Feeling isolated and empty and almost in a state of moarning...the loss of something...peace, laughter, friends, ...Must put my "super mom" cape back on and continue on!!! My heart aches for all of us moms...and what about the dads? They are the ones in quiet pain...don't often blog, call friends on the phone, express their fears out loud...Pray for them too!