Now I'm Seeking Reassurance...

[airial95]

Follow your gut, if you are worried about bi-polar, talk to the doctors and see what they think- absolutely. Every time we had a "new" symptom crop up that could be explained away by PANDAS, we still followed up on the more traditional/expected causes for those symptoms. We always wanted to make sure we weren't missing something else because we were looking at everything through the lens of PANDAS. If you do follow up on the bi-polar concern, just ask yourself prior to going in to see the doctor "how am I prepared to deal with it if it is bi-polar?" Are you comfortable medicating, etc...? It's a good idea to be prepared with what you're comfortable with if the doctors suspect that. And also, keep in mind, most traditional psychiatrists feel more comfortable with a bi-polar dx than PANDAS, so also ask yourself if the doctor seems to be pushing bi-polar because it makes them comfortable, or because it fits (are they ignoring all of the other symptoms and past history?).

 

In the meantime, I would start up the journaling again, it may give you some insight as to what you're dealing with. Also, my son has had PANDAS since he was 19 months old (dx at 26 months), so we have been at this for quite a while, and for the first 2 years, he was getting strep infections every 6-8 weeks. So just as we thought things were getting better - BAM, we were back at square one. So it did feel an awful lot like cycling.

 

I will also say that my son's presentation has changed over the years. Some things have stayed the same (food related OCD), but his tics and other compulsions have morphed over the years. If you look at our original list from when he was 2, it looks nothing like the list we would put together today. But while the symptoms changed, the patterns/triggers didn't.

 

Additionally, my daughter was dx with PANDAS 2 years after her brother, and their presentations/symptoms couldn't look more alike. My daughter looks far more bi-polar than anything, but it is classic PANDAS.

[ibcdbwc]

Thank you airial95. I appreciate your advice. I think I am just going to keep pressing, keep searching. Yes, I will journal again for sure. I think PANS is related but I want to make sure our path is helping and not hurting. Our psychiatrist isn't pushing bipolar but it's a thought. She sees it more as inflammation based which is wonderful but that could be because of our more classic history. We just want to make sure we are not missing things. It's so confusing. I do not feel comfortable with psych meds but i cannot stand the misery DS is experiencing. We'll keep pressing… and we'll need a new therapist too for more psychological support… I very much appreciate this forum!!

[mommybee]

I only skimmed the chain, but have you checked for Lyme and co-infections? I've heard that Dr. T. isn't the best for diagnosing and treating tick borne diseases. The headaches sound more like Lyme than PANDAS, however a sinus infection could cause spirochetes to gain momentum which would cause a worsening of symptoms. Just a thought.

Edited January 6, 2014 by mommybee

[MomWithOCDSon]

ibcdbwc --

 

You seem very well-informed, along with your good instincts, so I would say you're doing right to follow your gut. It certainly does sound as though your DS is fighting through another infection/autoimmune assault, but my own experience with a 12-yo boy in a major PANDAS exacerbation would suggest that you are still in the right ballpark. My DS had most of the same symptomology you're indicating now, and it was the result of PANDAS/PANS, not bipolar or ASD or anything else.

 

Maybe it feels different because the developmental differences in your 7 yo versus your 12.5 yo are quite different, too, you know? He's been exposed to more of the world, more people and their viewpoints, probably more media, as well. And its put his obsessive thinking on a different track.

 

I do have one concrete suggestion that you might discuss with your doctor/psych. At about the same age, our DS had been through about 6 mos. of abx and though dramatically better than he had been prior, he still contended with very strong obsessive thinking and anxieties. The abx wasn't able to set it all aside, even in conjunction with some very frequent and pretty "in-your-face" therapy. Until we added lamictal, an anti-seizure medication that is thought to help modulate glutamate through sodium channels in the brain. The lamictal didn't make the obsessive thoughts or OCD go away, but it did lessen the strength of their grip over DS so that he was better able to stop the "verbal diarrhea" and employ some of the tools and techniques his therapy had given him for "moving on" instead of getting all hung up over things.

 

Personally, I think my DS (and maybe some other kids, too) get caught up in something of a "glutamate storm" because of all the inflammation, etc., and we needed some strong help to quell it sufficiently and get DS back on solid ground again. So many of the behaviors you mention smack of potential glutamate issues to me (particularly lack of memory, urinary accidents, insomnia and strong obsessions), I just wonder if it might not be part of what you're contending with, as well.

[Dedee]

I only have a minute and didnt get to read all the responses. I am sure you have gotten some great advice. I only want to respond to your initial post. My second son went through exactly what you describe right down to the excessive worry that kept him awake while worrying about not sleeping. He literally worried about world peace and believed somehow that he should do something to change things. The insomnia and urinary issues were huge. The constant rushing thoughts would not stop. Long story shorter......this ended up being a result of a long term Mycoplasma P infection. We treated him for strep, but found out many many months later that he also had chronic Myco P and then months later found out he had lyme. So, call it what you will......my guess is that somewhere there lurks an infectious process causing inflammation and wrecking havoc on that body. Best of luck.....

 

Dedee

[ibcdbwc]

@mommybee- Thank you for your question. It's on the radar but... lyme in 2011 via Western blot had one IgM band number 23 which is lyme specific and one band IgG band 41. In 2013 all lyme (not via Western Blot) and coinfections were "negative."

 

@momwithocdson and @deedee - thank you very much for your responses. I feel newly inspired to continue the PANS/PANDAS path and will be working on looking closer at lyme (myco P negative), resolving ongoing sinus and allergy issues, investigating MTHFR et cetera-- but will certainly also veer additionally toward more intensive CBT and traditional support. Lamictal is one I had not heard of and will certainly keep that in mind as well. Have read up-- it could be certainly worth a try.

 

Right now, we are spirally down... but we found out today his sinus infection is back! Hmmm...

[MomWithOCDSon]

FWIW, in retrospect, I suspect strep in the sinuses was part of my DS's issue, as well, and likely why he required nearly 2 solid years of antibiotics. He was always prone to upper respiratory issues, commencing with chronic ear infections beginning at about 18 months of age and continuing until we finally submitted him to ear tube surgery at 3. But even then, colds, allergies, chronic congestion, etc. were part of the picture, right up through the PANDAS diagnosis. Finally, after 2 years of abx and NAC (biofilm buster and mucus buster, along with its psych properties), he's considerably improved in that respect and doesn't have that chronic stuffy, congested feeling that he'd had in previous years.

 

Kimballout, I know, went to the extent of having her son's sinuses scoped, and they actually found some sort of infection-harboring something (can't remember the proper terminology for it), not unlike an infected tonsil, but in the sinus cavity rather than the throat.

 

All the best to you as you continue to root out what's behind his flare!