Update on PANS daughter, 11

[dut]

Hello.

 

It's been a while since I've posted but thought I'd post a tentative "we may be out of the woods post" for my dd.

 

Background is that I have 2 kids with PANS. Ds7 is flaring at the moment with his most OCD flare to date. Lots of touching and evening up etc.

 

Dd 11 was a classic PANS onset (strep) at 4 with some micro flares prior, with hindsight. After her lightening strike flare at 4 and a second a few months later, the later flares were less intense but we would have more chronic low level 'symptoms' that would remain. We have used ibuprofen, abx and steroids for flares with usually good, if not always complete results. We did proph abx for a 2 years but she still flared with viruses and so stopped those.

 

My dd hit puberty this past summer and (fingers crossed) hasn't had a flare since and nothing even major in the few months preceding. We had a number of infections that would normally have led to some symptom uptick if not major flaring but so far nothing The only thing that we have changed is we've really upped her Vit D. I haven't got the guts to lower it too see what happens.

 

I am quietly hopeful that we may be truly be past it all for her. Maybe pregnancy or other biggies may impact her later (Dr T I think said he often saw upticks with pregnancy).

 

I wouldn't say she has any symptoms left but I do feel PANS has informed her personality, however, she is an outgoing, happy, confident child, doing well academically and socially.

 

I know she would probably look a bit different had PANS never been in her life but those few fragments that we have left feel manageable and ultimately beatable with some time to heal and forget.

 

I've been loathe to post an update as I'm always waiting for the other shoe to drop and it still may but just want to offer up some hope to those in the throes of this nasty disorder. When my dd first got ill, she really just fell off the cliff. We couldn't imagine her going to school, being able to ever work, form/maintain friendships or relationships and now (if it weren't for ds7) I might somehow wonder what all the heartache was about... the really bad first 2-3 years or so are somehow lost in a haze and she's so well now.

 

 

 

 

[MomWithOCDSon]

That's great news, dut! So happy for you and your family!

[cara615]

dut - I tried to PM you but you aren't accepting messages. Can you PM me?

[awilliams74]

This was a great post to read, thank you so much. My DS is 10 yo and we have battling this horrible disease for a little over a year. He had a very classic/overnight OCD onset with multiple correlating difficulties (eating, sleeping, OCD being the absolute worst and crippling, etc.). We are currently 3 months without a big flare, just had a mild blip after a Halloween party and sleep over where a couple of the kids ended up being sick a day or two later. In hindsight, he had many signs for several years (rigid thinking, diagnosed ADHD inattention, etc.) along with many infections so I'm thinking the episode that "tipped it" was just a major flare - took several months for diagnosis and treatment. I would put him at 85-90% of his baseline for the past 3 months on antibiotics, probiotics, vitamins with supplements (omega 3s, vit D and B12), and zyrtec and singulair for allergies. I always question ourselves if we should not be pushing more for full recovery (at the expense of more poking and prodding and interruption to his daily routine). Our pediatrician who first realized what this was is trying to manage his care, we have a local MD who initially diagnosed, and our DS is one session away from completing CBT with pretty good results. Most of the providers/specialists I am finding are "out of network" and cash only. We are hesitant to try any ADHD meds for fear we will be just covering up symptoms but considering low dose abilify to see if it helps DS - can do the work just can't focus (failed adderal so stimulants are out/kicked up OCD, intuniv not effective enough to justify the side effects). Your post gives me encouragement that maybe full recovery might come with puberty as it seems no one is able to predict if permanent damage/difficulties will remain. I keep hearing we should be thrilled with 90% and trust me we are - we would have given anything to be at this point a year ago. He is currently in school and just rejoined a sports activity for the first time since this onset. This recent "blip" also reminds me how fragile he can be.

Again, thanks so much, this is the kind of story I was searching for today.

[MaryAW]

Hi dut - Can you tell us what stage of "puberty." Is it full on with her menstrual period? I'm hopeful that my DD will also outgrow this at puberty, as she is doing sooo well. I know they technically begin puberty when they start to sprout on their chest, and it lasts for a few years. My DD is 10, at the earlier stage of puberty.

[dut]

Hello

 

Yes, she had her 1st and so far only period in September.. I know it's early days yet but this is by far the longest stretch PANS symptom free since she started 7 years ago. I hope this is a healing time for your dd too

[qannie47]

dut.: I have never met you, however, as with many of us...you wrote our story....Can't express how big my smile is....

 

Thank you for your inspiring update....

[dut]

I'm glad that my dd's story is giving some hope. I had felt we were moving away from PANS for a while with diminishing flares, less often and less intense.. probably coinciding with the earliest hints of puberty but was hesitant to post in case it all went to pot but it really does feel as though this may be it....

 

I can remember a telephone conversation with Diana Pohlman from PANDAS network many years ago, when she said they may grow out of it at puberty and coming off the phone and crying my eyes out with the relief I felt in just hoping that could be true.

 

Seeing it in action in dd, makes it so much easier to deal with my ds with some emotional calm.

 

Hoping for healing for all our children.