Flaring again...thought I was done here

[BeeRae22]

I haven't been on this forum in a very long time, but there are some who may remember me. October 2013 my dd "caught pans" and we were on a horrific long road to recovery.

 

The past year has been good. Ups and downs, a few rough patches, but all in all pretty good. In fact, for several months (maybe 4 or 5) dd(now 10) was 99.9% back to baseline. Even had the flu and a fever for the first time since onset and made it through with NO issues.

 

So, about 4 1/2 weeks ago we stopped Bactrim. Still on zith, s acetal glutathione and probiotics. Somewhere around this time dd, ds and I all got a cold.... Se was first, then ds, then me. She is fine now, ds and I still have a cough. Anyway, around the 1-1 1/2 week mark off Bactrim, dd started showing signs of increased anxiety, more frequent hand washing, more worries about getting sick, etc. these behaviors became worse and worse.... Complaining of not feeling well, stomach ache and headache. Missed most of the last week of school because her stomach hurt.... Stupid me, I thought she may have had a stomach bug or something- until she had a complete anxiety attack, including some aggression which she hasn't had in a long time, on her last day of school. I then realized that there wasn't anything wrong with her stomach, she's full-on flaring

 

We've had difficulty taking her off of Bactrim before-- can't figure out why. She's been on zith the whole time too-- 2 1/2 years now. Just out her back on yesterday..... Here's hoping it works.

 

Another panic/anxiety attack this morning- missed yet another fun event because she "doesn't feel well". Started pharma GABA drops yesterday-- I thought they were helping last night, but apparently not doing anything this morning dosing her with Motrin as well- doesnt seem to be helping.

 

I am so VERY tired of all of this..... She was completely back to herself, and here we are again with anxiety, OCD, aggression, etc. I just can't even believe it.

 

This is never going to be over, is it?

[MomWithOCDSon]

Yes, Beerae, it WILL be over, one day. It truly will. Never fast enough, or solidly enough for any of us, but it will. And then it'll take you a while to realize . . . to BELIEVE . . . that it actually is over at that point!

 

I don't know if it's because our kids' bodies, minds and immune systems are still maturing, I don't know if it's because they're constantly subject to new assaults by various microbes, allergens, etc., or if hormones tied to impending or full-scale puberty are a factor, but I do believe your DD will come out the other side of this. Unfortunately, for us, ages 12 - 13 were particularly rough, and then, slowly but surely, each year thereafter got better and better with respect to DS's ability to weather the storms, bounce back after a fresh strep exposure, etc. By 16, he was pretty much 100% on the other (good) side, but even then, PTSD had us walking on eggshells at times.

 

Hang in there, and hang onto the knowledge that you're doing all the right things, and you'll make it through. Our kids are more resilient than we give them credit for, sometimes . . . if only us more "mature" folks can hold on and share in some of that!

 

Take care!

[dcmom]

I am so sorry. I remember your daughter's story.

 

I can share Nancy's sentiment. Although we are not there yet with my daughters, things are a lot better. Both girls still flare with pandas, but the episodes are limited to ocd only. While this is still extremely disruptive and sometimes debilitating- both girls no longer have food restriction or mood issues (tantrums, etc) with a flare. It makes life at home happy again, even if ocd is making life outside the home difficult for them.

 

My hope is that episodes continue to get milder and milder, until they are just a bump.

 

My thoughts are with you and your girl.

[lw47]

I am right there with you. This feels like it is never going to end. My daughter is 11. She's had problems since age 4. Her second IVIG was last year, and we had 3 good months where the compulsions went away, though still some obsessive thoughts, but much better. Then it all came back. She does well in school, and doesn't have any tics or tantrums, but OCD is present despite treatment. I am holding out hope that puberty/ age will help lessen this, and eventually it will all be gone.

I wonder if your child has Bartonella, and that's why things worsened when the Bactrim was stopped? Mine used to take that- had Lyme and Bart, along with strep causing PANS/PANDAS.

I keep reading things about how many grow out of this when older, as long as you've done the appropriate treatments, which we have. My thoughts are with you!

[BeeRae22]

MomwithOCDson, thanks for the encouragement.... I think I am particularly frustrated because I was in such awe just a month ago with how great she was doing-- she was truly returning to herself and it was an amazing, unbelievable feeling. The whole ordeal was actually starting to feel like a bad nightmare, like something that had happened to someone else, at a different time. It was a solid 4-5 months. No anxiety, no OCD. Zero aggression. Happy at school. Accepting "no". Sweet! Kind. Happy.

This morning??? Quivering, anxious, unglued mess. Aggressive, hitting. Cheerios thrown all over the house. Game pieces thrown all over the house. Dilated pupils. Hurting the dog (picking at his nails). ANGRY. Refusal to go perform her dance which she LOVES. Cancelled play date.... Had to cancel ds's play date too.... Just seems so,,,, well.... Unfair. Pans has robbed so much from her, it's hard to have it take away even more. But thanks, I do appreciate the positive words, and am trying my hardest to hold on to the thought that its going to get better again.

 

DCmom, thanks to you too I remember talking to you.... Dd is fully recovered from restricted eating, and I thank God for that. Raging, OCD, etc. are bad enough but having her not eat was pure ... Glad to hear things are better with you on that as well!

 

Lw47- we (her doctor and I) have suspected Bart from the beginning, and have been treating based on symptoms, but the testing we did came up negative-- I can't afford Igenix, but am quite convinced that Bart is part of what's going on with her.... Every time we pull Bactrim she struggles. I'm surprised at the severity of her issues after doing so well though.... And why would she handle the flu completely fine, and become such a mess with just a cold? Because she had Bactrim on board then maybe? (I think that was in February?). There are so many variables, I often wonder how everyone seems so confident about what's going on with their kiddos. I can only assume my dd is struggling because of removing Bactrim, but is that really it?? Could it be? I just don't know.

Edited June 13, 2016 by beerae22

[dcmom]

beerae- I will throw this out there also- I can't remember how old your daughter is...

 

My two girls are now on prozac. I do credit the prozac for keeping mood issues in check. My younger needs it as she does have baseline anxiety, but my oldest has no baseline issues.

 

I have found at a low dose, It lifts and stabilizes mood for my daughter(s) in and out of pandas flares. We no longer get aggression, hitting, yelling, temper, anger. We only get ocd. While ocd is horrific in itself, it is much easier on everyone when there is not that horrible mood stuff along with it.

 

I know many on here don't like the ssri's - but I wish that I didnt wait so long to give them a try. Life changing for us, and at very low dose so I feel really good about it.

[SSS]

Yep, my PANS dd11 had a great year too, so removed Biaxin (taken daily with Augmentin)

see 'stuff' slowly creeping in, I think 'yeast', play around there, but finally after 2 weeks,

*I know* even tho I *still can't quite believe it, again!* that the bloody Biaxin calms this child and tamps it down to pretty darn good, with Augmentin.

Back on Biaxin, about day 3 back on, and it's definitely better-

the worry being- will it work again?

Quality of life, not tormented, and self esteem from good actions, all a 1,000 times worth being on the antibiotics.

And she's been on it a long time. And yes, we've treated and treated and treated Lyme, Bart, mold, etc. etc. etc.

If it works, keep it!

[SSS]

And to all you 'old Moms'

By being here,

by responding,

by reaching out with your experiences,

is an amazing and beautiful service.

Thank you---

 

Nancy, I was thinking of you

telling of removing Augmentin w/ your son,

how you slowly tapered it down.

I'll remember that when I try in 10 years! Ha ha :-/

But much love to us all.

[qannie47]

Beerae22 I wish I had the magic words. Something that could wash away the dread and heartbreak when we as parents realize once again it is not over. Hope. That is what keeps me going after I have a good cry and pull up the bootstraps AGAIN, as I know you will. I try to tell myself that I have come to terms and have accepted that our Journey will not be truly over with for some time. Yet, when long periods of time go by and I see a happy 100% back to baseline child, I start to believe that it is indeed over for good this time around. Hope. Hope is what makes those period of times when our children are in remission so much more miraculous and Hope is what gets us through when the sky has fallen once again.

 

Don't forget Hope.

[ibcdbwc]

I just wanted to say you are not alone. We have experienced joyous periods of remission but gut wrenching recurrences. The roller coaster is unreal.

[BeeRae22]

Thanks everyone. ... Dd is still struggling, although today wasn't as bad as the past few. Day 5 back on Bactrim and regular doses of Motrin... Appears to now have a breathing tic (past few days)-- this is completely new (never had much in the way of any obvious tics in the past- at least not this noticeable). The best way to describe it is that she "pauses" when she's breathing out. I asked her about it yesterday and she told me that she'd been "thinking about her breathing a lot". She doesn't have a cough, a sneeze, a cold, nothing. Still lethargic, sat on the couch all day, but she did go to dance class tonight with barely any resistance (past few days she resisted- anxiety about being sick) so there's some improvement. Becoming a little concerned about her appetite and eating (might just be me having flashbacks from her restricted eating which was severe at one time, for a long time) but she doesn't seem to be eating very much, and worries about getting sick.

 

So that's the update. Not going to be too quick to pull that Bactrim again!