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

[eljomom]

I was just thinking the other day, as I was searching in some older posts, that many of those posters are no longer on the forum. Of course, there are some of the regulars who post now that were posting back in 08 and 09, but wondering if this forum is mainly people who are NOT getting a cure....are all the old posters moved on and healed??? Does anyone know or keep in touch on the side with any of them?

[MomWithOCDSon]

I think some are "in remission" if not "cured" and are busy with their lives.

 

I also think some have moved on to participate more fully in other forums that they find more applicable, such as a number of PANDAS families who've discovered that Lyme is an issue for them and are thus on the Lyme forum more frequently than they are here anymore.

 

And finally, I know personally of at least a couple of families that are just taking an extended break. They feel they need to focus on family and home right now, and the forum, after months of participating and reading and sharing in ideas and research and exchanges of support has served its purpose for now, and they don't feel they have much to say anymore.

Edited March 15, 2011 by MomWithOCDSon

[chodnett]

we are 90% better and on the LYME board now.

Heading for 100% recovery.

[dcmom]

chodnett-

 

great news!

 

Would you mind sharing your story a bit?

 

How long were you treating pandas? What were your child's symptoms? Did you ever get full remission, although not permanent, from symptoms?

How long and how have you been treating lyme?

 

Thanks!!

 

Eileen

[thereishope]

Some of us are still here, actually I recognize a good number of names. It may be hard to remember who is at what stage in the illness or fully recovered, but there are some on here.

 

As for those that no longer post, I agree with Nancy's reasons or you actually don't feel you have anything to really add to the current threads. Some go on to help the cause in other ways annd that takes up time. Some don't care for the occassional drama that occurs. I do hope as people recover and improve they do continue to at least occassionally pop on here. One to keep up with anything new as it's hard to play catch up in the unfortunate event your child gets sick and and to make sure the pool of information stays accurate and the anecdotal info we have learned along the way continues to get passed on.

[MMWG]

Well, I have just popped back on here today after a year or so break, so I guess this applies to me! All the issues mentioned are true for us. My son (now 5) has not had strep in a year, and we have seen profound improvements in his behavior and emotions. We have been on abx once this year when he was exposed and showing behaviors, even when his strep test was negative, and back to the pedi a few times just to be sure when we were having a difficult time with behavior. For me, I felt like I was attributing everything to PANDAS when I spent too much time on the board, when some of our issues were due to that and others were not.

 

I do want to say that figuring out so early what we were dealing with has been huge for us. I was worried I wouldn't know when he was hit with strep, but I definitely did. I know the signs to look for now, as does his teacher, so we are all vigilant. His doctor is also helpful in talking me through what may be a strep reaction (such as a strange thing I thought was a bladder infection, which he connected to pandas, and defiant behavior, which probably wasn't!). I try not to cry wolf too often but I am always safe rather than sorry in getting him checked and pull him out of school whenever strep is going around.

 

I do want to give hope to other people out there--we feel like his condition is largely under control and although he is still a strong willed, hyper little boy, the extreme behaviors, tics, and emotionality are largely absent unless he is exposed. Our pedi told us he treated another patient with "our protocol" to much success, and a woman I work with contacted me when her stepson started showing similar symptoms after a positive strep test. so i think we are trailblazers in a way, and it no longer (at least right now) monopolizes our whole life.

 

We don't have our son on preventative abx because our pedi is against them given his young age and other abx allergies, but he is good about putting us on them when we are seeing symptoms.

 

I think early detection and management is a huge key to progress on this disorder!

[LNN]

Nancy and Vickie summed it up for me. I do check in but after so much time, you do run out of things to say or offer. You begin to repeat yourself and feel like an old-timer telling the same war stories over and over. It starts to feel like everyone at the dinner table rolls their eyes as you launch into yet another story about how rough it was walking 10 miles to school in the snow, up hill both ways.

[eljomom]

I was really curious if people dropped off because they were more or less "cured" and moved on, or just out of stuff to say...I don't ever hear anybody on here who is just "done" with pandas...do people "sign off" if they feel like they are cured? I know Diana P. swears there are kids who have been basically cured....where they don't even react anymore....just could really use some positive stuff about that...and what they did for treatment.

[thereishope]

Do you mean they get a documented strep infection while still a child and they don't have a reaction?

 

Otherwise, there are kids that get better, stop reacting to viruses, exposure, but I believe if the child themself have a strep infection they would get sick again (or at least parents assume the child would...who would really want to find out?).

[EmersonAilidh]

Even I'm not on nearly as often as I used to be. I think a huge part of it is getting cured or at least making progress & not wanting to focus on the problem by coming on here. As I've been on my way to getting better, I've noticed myself getting on here less & less. It's sad & sometimes it even feels like losing a friend but if I don't see someone on here for a while I take it as a good sign.

[eljomom]

Yes, I think it's a great sign...just wish they would share what treatments worked for them to get that far....everyone here posts about iVIG, steroids, etc....but not many are getting/staying well, so maybe the other people tried something else? or a different cocktail??

[Suzan]

I don't check in as often because we are thick into lyme treatment and hanging out on the lyme board. I hope to find that I can post our success sometime next year for my two girls and myself. We have seen great improvement with our treatment and I hope that the pandas does not rear it's head once the lyme is taken care of. After more than a year of thinking everything looks like pandas, now everything looks like lyme (and that was all after everything looks like celiac, etc..., LOL).

 

My dd9 was not getting better with her IVIG's and antiboitics and then we learned about the lyme. She has improved a lot within 3 months. Time will tell how far we will go to healing.

 

Susan

[wornoutmom]

Still here reading periodically, occasionally posting. Been busy providing support to our state group. I think we all post more when we feel lost and are needing answers, or just going through the emotionally horrid times of raising a kid in exacerbation. I will post that we "may" have finally hit remission. I thank the universe every day for progress and the parents here who held a huge part in that. What we have done:

 

March 2010: Petscan reading positive for inflammation in the basil ganglia and thalamus

Positive Myco P IgG found - 2 shorter courses of Biaxin

 

April 2010: 5 day steroid burst, another round of Biaxin for sinus infection

 

May 2010: Biaxin started daily (1000 mg) and we continue on it to this day.

 

June 2010: IVIG 1.5 gm/kg Last rage/terror attack this month.

 

Aug 2010: Last facial tic goes away after braces removed. Has not had a physical tic since. Very periodic vocal tics remain, but they are negligible.

 

Sept 2010: Added xanax .25 mg 3X day to other psych meds of Luvox CR 100 mg and .25mg Risperdal after horrible start to highschool resulting in panic attacks. Remain on this psych med cocktail since.

 

January 2011: 3-5 day flare up of symptoms with viral sickness. Came out of it rather abruptly.

 

Feb 2011: another 3-5 day flare up with viral illness. Do 5 day steroid burst.

 

March 2011: viral illness including fever. 2 MILD occassions of anxiety lasting 15-20 minutes or so. No further PANDAS symptom increase as result of illness

 

We continue to see upward progress as he heals. He is now attending highschool full time. He is no longer napping 3 hours a day. He is socializing at school comfortably now. He is able to verbalize and problem solve anxiety most of the time. He read a novel for the first time in 3 years and understood it. He continues in CBT therapy, and is engaging in it. He is learning to ride horses once a week. He is getting good grades, and becoming more independent. He puts himself to bed and sometimes does his own laundry. He is learning to drive. He does not really remember how bad things were last year. He is healing. I allow myself every now and then to feel hopeful for his future, while trying to remain realistic that this is a remission, and more hurdles could be ahead. I am overwhelmed with thanks at each day he has where he can live his life like anyone else, not hostage to the misfire in his brain. He has some more growing to do, but don't we all....

[Not_the_Same]

Hello ACN

 

I remember searching this forum for answers a year ago,when my family was blindsided by this disorder.

First affecting my youngest now 5, then my oldest at 13.

 

Funds were limited, faith in doctors vanishing, but in the end, with the commits and insight from this forum, both kids are back.

I would spend hours like many of you reading post after post.

 

 

Dr. T. had thrown many valuable pearls of information out on this forum, before he left, and this is when I understood that he was not a doctor just prescribing protocol,but he was still studying and learning, and most importantly he was sharing his information.

I do not want to sound like a commercial for anyone, my intention is to share a possible solution.

 

What did we do?

After switching to Dr. T.

We found the correct abx for the correct duration.(Not as easy as it may sound,my first Dr. offered a path that i feel we would still be on)

 

My Children have been off ABX since last June.Nothing Else.

Maybe we are just lucky.

 

I hope you all can find your remedies with the wisdom on this board.

 

John

[AmySLP]

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.