What happened to people on here from a year or so ago?

[JAG10]

Still here....find myself coming back recently as I wonder if my now 4 yr old DD is developing PANDAS in the same way as my now 6.5 DD did when she was 4. My oldest is on an ABX regimine, with backslides here and there. Took a break from the board when things were a bit more settled here,but things are ramping up currently in both my girls.

 

 

Hey Amy!

 

I met your friend in Dr. B's center. DD11 goes back 3/30-31 for next treatment. She is doing okay, some recent math fluctuations with the loss of a babytooth. While these significant changes in processing and performance are so frustrating as a family, it really is facinating as a clinician. I feel like this whole experience has made me grow as a therapist.

 

You are so fortunate to obtains treatment for your daughters upon onset!

 

Kudos to you!

Jill

[JAG10]

double post

 

 

Edited March 19, 2011 by JAG10

[JAG10]

triple...sorry; too much coffee!

 

 

Edited March 19, 2011 by JAG10

[kferricks]

I just want to thank those of you who posted your successes. We need to hear it.

[Doug]

We are still here..

We went back for IVIG # 2 with Dr.k

and we are seeing good signs again..

What are we doing different this time?

We pulled her back out of school, we are not letting her play with anyone who is sick

and I am going to home school her for first grade next year

so we hope she can get a full year or more of healing..

other than that?

we just wait and see...and we enjoy all of the "good days"

and pray for the bad days to be gone.

Tracie

[mom md]

We are now 5 months without any symptoms post-IVIG and doing well. He is completely symptom free. I still check in periodically but honestly am trying to be "normal" and still heal the damage done. I talk to 1-2 new families a week and try to point them to the right doctors and info. I always mention this forum which was so helpful to our family.

We are planning to do IVIG again in the next month to see if we can get a full year without symptoms. My son had it for much longer than some and that may be why we have relapsed post treatment in the past. Because this is an autoimmune disease it will always have the possibility to flare. If I have learned one thing, it does not play by the rules. For his case though...he always responds to steroids, IVIG, and plasmaphoresis. Each time he gets IVIG (he has had three) he goes longer and longer without a relapse.

[peglem]

We are now 5 months without any symptoms post-IVIG and doing well. He is completely symptom free. I still check in periodically but honestly am trying to be "normal" and still heal the damage done. I talk to 1-2 new families a week and try to point them to the right doctors and info. I always mention this forum which was so helpful to our family.

We are planning to do IVIG again in the next month to see if we can get a full year without symptoms. My son had it for much longer than some and that may be why we have relapsed post treatment in the past. Because this is an autoimmune disease it will always have the possibility to flare. If I have learned one thing, it does not play by the rules. For his case though...he always responds to steroids, IVIG, and plasmaphoresis. Each time he gets IVIG (he has had three) he goes longer and longer without a relapse.

Happy to hear your update!

[Suzan]

We are now 5 months without any symptoms post-IVIG and doing well. He is completely symptom free.

 

That is great news, I'm so happy to see your update!

 

Susan

[lynn]

Mom MD, what part do you think PEX played as opposed to the other interventions? Just trying to plot a course through all the possibilities. Specifically, I'm wondering if PEX was necessaray to make the IVIGs more effective, or if it was successful on its own, or effectless?

 

Great to hear that an older child is recovering! I'm so glad for you!

[mom md]

I have no data to base this on but I do think doing PEX pre-IVIG may have helped us. We removed most of the antibodies with PEX and then when he relapsed 4 months later the IVIG was able to target a much lower antibody load. Dr. L had said it would probably take 6-9 months and several IVIG treatment to accomplish what PEX did in 4 days. I do think our response to IVIG has been better and quicker than several other patients. I don't know if we were purely strep induced and did not have any other co-infections or if the antibodies we were targeting had not been around as long and therefore easier to get to. I know the process was pretty drastic but we are in a good place now. We have come so far but I know that even if we step backwards, IVIG has been successful and pulled him back to baseline within a week twice. Our neurologist here thinks this is like all other chronic autoimmune diseases...he will always be susceptible to flares. Our immunologist thinks that if we can retrain his immune system he may improve and be cured after puberty. I hope she is right!

[Mary M]

I would agree with others here that as the exacerbation becomes more intense, the posts increase and vice versa. I also give myself vacations from this forum as the information is daunting and as much as I'd like to help I also need to cleanse myself from the tragedy that is this disease so I can continue to be effective in dealing with it at home and in the community (web community too).

 

But you also want to know what has worked:

For us, dd had reached a point last year that was so intense that waiting any longer to see if abx alone would do it simply wasn't an option. Dd had IVIg June 2010, had five tough post IVIg weeks and then began to be able to live again, little by little. From that point forward she had marvelous successes (4 pointed her first semester of Middle School, had all ones in citizenship, went to activity nights/dances, laughed and sang and played her musical instruments). Then I witnessed symptoms beginning a week after school resumed after the holiday break in January. She had a confirmed illness (clinically looked like strep throat but tested neg) on Nov 18 and then a sinus infection Feb 1. On Feb 23 she told me her PANDAS were giving her a really hard time. We scheduled IVIg #2 and I am now sitting with her in a quiet house as her brain heals one more time. This time she has confirmed basal ganglia inflammation on a PET Scan, last time her cam K score was 166.

 

I hope this helps...

Mary

from Michigan

[SSS]

I would agree with others here that as the exacerbation becomes more intense, the posts increase and vice versa. I also give myself vacations from this forum as the information is daunting and as much as I'd like to help I also need to cleanse myself from the tragedy that is this disease so I can continue to be effective in dealing with it at home and in the community (web community too).

 

But you also want to know what has worked:

For us, dd had reached a point last year that was so intense that waiting any longer to see if abx alone would do it simply wasn't an option. Dd had IVIg June 2010, had five tough post IVIg weeks and then began to be able to live again, little by little. From that point forward she had marvelous successes (4 pointed her first semester of Middle School, had all ones in citizenship, went to activity nights/dances, laughed and sang and played her musical instruments). Then I witnessed symptoms beginning a week after school resumed after the holiday break in January. She had a confirmed illness (clinically looked like strep throat but tested neg) on Nov 18 and then a sinus infection Feb 1. On Feb 23 she told me her PANDAS were giving her a really hard time. We scheduled IVIg #2 and I am now sitting with her in a quiet house as her brain heals one more time. This time she has confirmed basal ganglia inflammation on a PET Scan, last time her cam K score was 166.

 

I hope this helps...

Mary

from Michigan

 

 

Mary - it does help, thank you-

May I please ask: are you keeping her from school while she heals from #2 IVIG? Are you keeping on daily antibx. after your IVIG's?

Thank you-----Sarah

[airial95]

We're still here and post fairly regularly - although I don't post as often.

 

I retreated a bit when the focus started to shift to Lyme. Since we're not dealing with it, I don't really have too much to contribute there, but have read a few different threads and posts of interest because I do think that it's important to be aware of all of these things.

 

I don't want that to be read as a knock to any of the Lyme posters here (I remember how heated that got once or twice before!! ) - it's just one of the reasons my posts became more infrequent - if I didn't have anything to contribute to the Lyme discussion, there was no need to post!!

 

Now, I tend to post primarily when something new is happening for us, new symptom, new strep infection, etc... for support and new insight. We were at about 80% over the holidays, and he got hit with another strep infection about a month ago, but we're bouncing back much quicker this time - don't know if it's from knowing what we're dealing with/what to expect and having the proper tools to deal (thanks to this forum) or if he's just getting over it quicker.

 

I'll add some insight to newcomers if I notice that no one else had mentioned this or that that could be helpful, but often if what I have to add has already been said, I don't chime in as often as I used to.

 

I don't know if it's that people are "cured"- so much as when you finally get a "handle" on what you're dealing with (if that's even possible!!) you're not so lost looking for the direction and support that's so often found here.

[pixiesmommy]

We discovered this board sometime during the spring/summer of 2009.

 

My daughter had been tested for Kawasaki, Lupus, Lyme, Leukemia, allergies..... we had run the gamut. Her symptoms were neuro-behavioral and fevers w/no other symptoms other than occasional bouts of bed-wetting. She had done an 11 day outpatient stint in a ped psych ward the summer before for aggression. She had been dx there w/ODD, ADD, Bipolar, Tourette's, and Sensory Intergration/Processing disorder along with high IQ. We tried Zoloft and then Abilify, but things were worsening.

 

By the time we found Dr K and did the steroid burst in Sept of 09, she was violent and paranoid to the point we were literally sitting on her for hours each day. Her tics had progressed from a simple eye-blink that started at 7 yrs old to, at 9 yrs old, complex shoulder toss, writhing motions that had her squirming out of seats and writhing on the floor. She was day-wetting, bed-wetting, baby-talking and speaking made-up languages when she did speak, mostly non-verbal, grunting, refusing to drink..... etc. We got the dx from Dr K and one week later did hdIVIG and the tics were gone within 2 days- totally. We did a year + a few months of prophylactic abx, changing several times as the whole family seemed to constantly test positive for strep.

 

After 6 weeks of an explosion of symptoms, she gradually got "90% better" over the course of the year. The number is courtesy of Dr. K. She still has sensory issues, though not as severe, an occasional mild tic like a finger-flick or eye-blink, lots of spaciness, inability to sit still for very long, emotional lability, and is EXTREMELY fatigued and has debilitating joint pain.

 

We got our Lyme dx in Dec '10 and started treatment about a month ago (Feb '11.) She is actually having days with sustained energy now and is starting to even appear healthy in the way she looks outwardly. I also tested positive for Lyme, and we believe hers is congenital. She tested positive on 5 bands, and I tested positive on 3, if anyone is keeping count

 

I am definitely more active on the Lyme board now. We do take breaks because it's hard to read sometimes and "relive" the height of symptoms when you are just trying to cope with your own crazy life. I am active in other ways more than here, and focus my energy on those too- like groups on FaceBook and my food blog for autoimmune health (you'll see in my signature.)

[Buster]

Interesting question... We're doing well and I'm not on the forum all the time. When I do check in, there's a lot of great advice and I'm finding I don't have a lot to add -- this is frankly a bit of a relief.

 

Back in 2010, I started documenting everything I had collected or learned in hopes that I'd save someone the hours I spent searching.

• History: http://www.latitudes.org/forums/index.php?showtopic=5144&st=0&p=36300entry36300
  
• Summary: http://www.latitudes.org/forums/index.php?showtopic=6265
  
• FAQ: http://www.latitudes.org/forums/index.php?showtopic=6266
  
• Flowchart: http://www.latitudes.org/forums/index.php?showtopic=6688
  
• Comparison: http://www.latitudes.org/forums/index.php?showtopic=11715&view=findpost&p=98115
  
• How IVIG works: http://www.latitudes.org/forums/index.php?showtopic=7855&view=findpost&p=63932
  
• Survey Results: http://www.latitudes.org/forums/index.php?showtopic=9495&st=0&p=79704entry79704
  

 

I hope these resources continue to be beneficial and I update them occasionally.

 

 

Buster

Edited March 23, 2011 by Buster