post ivig flare

[jaco]

hi i just got ivig im 18 had to leave college. i've prolly had PANDAS since feb of 2012 but first got the strep bout in 2010 with maybe four or five recurrent infections. I am writing this because all my symtpoms are flaring up again and I am doing IVIG low dose for six months ever three weeks as I have bcbs and the only way its being covered is by my Ig deficiency. I haven't had this bad of a flare in so long I forgot what it was like. i HATE the sun it makes me feel pressured to do things, i think people are constantly tlaking about me/thinking about me, don't wana shower/change my clothes. was anorexic my senior year of high school. Somethings have stayed the same throughout having flares or not having flares just the pandas "baseline" i guess you could say such as spotlesss room, rituals, many other things i don't even notice.

 

i just wanted to ask how long people saw flares after IVIG, dr. l prepared me and my mom for this, but didn' really say how long it lasted and if it happened after each time. Also at the time of the infusion i had a chloeriform movement or a tic?, i almost ripped my iv out! I just wanted to say for anyone that has that i had to up the benadryl and ended up taking a benzodiazapan.

 

Pandas is literally h*** on earth. I have never felt more alone in my life. I basiacally have stopped talking to my friends because they don't get it. I mean how can anyone get it unless you go hrough it right? I just wanted to say to all you parents out there you make the world a better place for your kids because without my mom I don't know what I would do, i would probably still be rocking back and forth in my dorm room not eating, exercising like a maniac, afraid people were watching me and feeling so depersonalized and not real it was so scary. also if anyone wants to send me a message feel free to because i think i could answer any questions well. and also i know i may seem calm right now speaking but just last night when my mom forced me into the shower after rollling around in the dirt with my dog i was having a rage and throwing bottles of shampoo and yeah well of course you all know what that is like.

 

okay well my love and blessings to your family. oh yeah and i have a therapist i reccomend it because it helps me becuase at first i didn't believe this was a real disease i thought i was doing this to myself but now i finally believe that this hapened to me not that it is my fault because of her.

and really i know this message may make me sound not very educated but i was always an ap student i am just having trouble with formin sentences.

 

love and blessings

Edited April 16, 2012 by jaco

[Fixit]

Jaco..Love and Blessing to you too!

 

My children have different presentaions than you, tics are our main issue.

I am sure others will be here shortly with some info and words of wisdom.

We have not done ivig, so i cannot comment. I know that there is some thought process into the ig defecencies and hd vs ld. Again i'm sure someone will let you know the information they have.

I do know ALOT/most people see flares with HD too. Sometimes the flare comes on quick, sometimes comes later and i think they can last a while for some patients, unfortunately. Again, that is just from what i remember reading.

How long ago did you have your first ivig?

 

Can you clarify the dates of your strep and probable onset?

Has it only been a couple months of pandas symptoms? it is good that you were able to get help quickly.

 

I wanted to let you know, that it is strong people like yourself, that also help the parents out here.

It is good you are asking questions. Knowledge is power.

I am glad that you have found a DR who will listen to you! That is a HUGE step for you and your future care too!

Good work on your parents part too!

Edited April 10, 2012 by Fixit

[jaco]

IVIG thursday at Dr. Latimers office by Medpro on the 4th

 

My strep was Fall/Winter of 2009-2010

 

Anxiety onset was February 2012 (anorexia, school preformance decrease, generalized anxiety, obsessions)

 

Became Unmanageable in August ( that's when the regression began, i could no longer take care of myself, keep myself healthy etc, constant crying/worrying/fear)

 

September left college, depersonalization, derealization,

 

October (extreme fear, waking up in the middle of the middle of the night, not recognizing mom, night terrors, tics, "what if...", i've gotta get away, handwriting deterioration in episodes,

 

 

and more, i dont even remember everything it's hard to remember it feels like a different lifetime, each episode feels like a different person. thats probably part of the depersonalization its hard to remember that i am who i am and i was who i was yesterday if that makes sense?

[Fixit]

IVIG thursday at Dr. Latimers office by Medpro on the 4th

 

My strep was Fall/Winter of 2009-2010

 

Anxiety onset was February 2012 (anorexia, school preformance decrease, generalized anxiety, obsessions)

 

Became Unmanageable in August ( that's when the regression began, i could no longer take care of myself, keep myself healthy etc, constant crying/worrying/fear)

 

September left college, depersonalization, derealization,

 

October (extreme fear, waking up in the middle of the middle of the night, not recognizing mom, night terrors, tics, "what if...", i've gotta get away, handwriting deterioration in episodes,

 

 

and more, i dont even remember everything it's hard to remember it feels like a different lifetime, each episode feels like a different person. thats probably part of the depersonalization its hard to remember that i am who i am and i was who i was yesterday if that makes sense?

 

You are in very good hands with Dr L!!!!!!!

We use most of the main Drs and she pulls alot of weight.

I know it is very difficult, but it will take some time. You just had the ivig a couple of days ago, so i am not surprised that you are currently flaring.

TRY to find a peaceful place in your head. Or try to get distracted from it with some other activity or tv or music, if that helps. Right now its a patience game.

[fightingmom]

I don't know a thing about IVIG or have the experience that the rest of the members here do, so I can't comment on that (though I too have read there is some discrepancy about HD or LD IVIG -- but you'll find that with just about anything, I suppose!). Just wanted to tell you that you are not alone, quite a few of your symptoms seem eerily similar to my son's who is 14. The other thing I wanted to say is that you have a good head on your shoulders, you are very mature, and it takes a lot of guts and determination to be proactively looking for information about your illness at your age. Kudos to you, and your parents. I wish I could offer you more, but I'll just wish you the best and hope that you get some reassurance and some helpful answers from the others.

Edited April 10, 2012 by fightingmom

[amyjoy]

Dear jaco

 

you are so brave and amazing. i am impressed that with everything you have been through, that you have not given up, you do still have hope, you believe that you can get well - you're just in the middle of a flare that makes you almost forget all that. but even in the middle of this flare, you are reaching out, you are inspiring and touching others with your story and your courage. that takes tremendous faith.

 

you are in good hands with dr. latimer as you know.

maybe with this flare, you all can consider a little prednisone burst?

have you talked with dr. L about how bad it is this time?

 

you have so many people cheering you on and rooting for you and caring about you, people you will never meet or see from afar.

 

i know alot of boys with pandas that started in late teens and even 20 and have been through ###### also, and are getting so much better now and are back in school. you will do this, you will get through, just hang on, and let dr. latimer know exactly where you're at so she can help you as much as possible. and your parents, too.

 

LOVE

amy

[ptcgirl]

Hi Jaco, thank you for sharing your situation with all of us. It is inspirational and helpful to hear the perspective of an actual PANDAs patient on the forum. My DD12 has said so many of the same comments that you wrote. It helps me to remember that her feelings (and yours!) are normal given the horrible situation. It must feel like h***. I know that as a parent, watching our child go through it, I feel like our whole family is living in h***. BUT, you will get better and the future will be SO bright for you. You seem like a very intelligent person. Who knows? Maybe you will be the one to solve all the mysteries in PANDAs. Don't give up. You are in a flare and things will improve. Hang in there. I will say a prayer for you tonight that your symptoms calm down and that the IVIG is effective and acts quickly.

[jaco]

Thank ALL of you for your kind words. It is your support, my doctos, my family that help get me through this. And i really feel for the younger kids because I feel fortunate that I can understand things like autoimmune disease and antibodies etc, but I can only imagine how you would explain that to younger children. Yes I will work on this when I get older, when I think about how much of a differnce all these amazing dr.s and psychiatrists and therapists have had in our lives I want to do the same

Edited April 13, 2012 by jaco

[Kyle_Hamam]

Hi Jaco,

My name is Kyle and I have the same symptoms you had in 2012. I am 19 and have suffered with PANS, POTS, PI, and possible Lyme, after returning ill from a family vacation to Costa Rica. I have done 3 HD IVIG treatments that have only made me worse especially with my derealization feeling. In Feb I tried 10gm of SCIG which I was able to tolerate a bit better but wasn’t enough to make a difference in my recovery.  Recently I completed 10 plasmapheresis treatments with some improvement but got worse again after they tried to give me LD IVIG yesterday.

Your post validated how I feel and sounds very similar to what I experience on a daily basis. Are you feeling any better now? What treatments worked for you? If you could provide me with some guidance and hope, I would really appreciate it. Like you mentioned, my life is like H*** right now and it’s hard for people to understand what I am going through. I have literally been physically/mentally disable from my condition for the past year and half.

Thanks for sharing your story with us and being willing to help others,

Kyle