got test results...?

[Rachelle]

I don't know what to think. My son had some sort of low markers on IgG (IgG2 was 182 and IgG4 was 52...which are flagged red but I'm looking and those seem to still be in the normal range). Dr. T mentioned low strep responder as a possibility and is prescribing Augmenten. He said to give it 10 days and if no response we'll try an anti-viral because he had coxsackie positives/high indicating past infection markers on the labs.

 

He has gotten worse as he got a cold but that could be that it is interfering with his sleep and the OCD then kicks in at night so less sleep and it's resulting in more OCD? I don't know.

 

This is my old post. http://www.latitudes.org/forums/index.php?showtopic=18187

 

I don't know what to think. Does it seem like maybe this is just inherited OCD given the family history of OCD?

 

This kid carries c. diff and tends toward nasty GI bugs so I'm worried about the antibiotic effects.

 

I asked Dr. T if it might be regular OCD and he said it needs to be a diagnosis of exclusion...meaning we rule out low strep responder and viral before we assume it's "regular" OCD. He did mention he could prescribe something for that like luvox if it ends up he doesn't respond to treatment.

 

Can anyone help me with their thoughts? Does this seem like it's not PITANDS/PANDAS really? Would you just try the treatments and see if you get response so you know you've ruled infectious causes out?

Edited August 30, 2012 by Rachelle

[MomWithOCDSon]

Rachelle --

 

We have a family history of mild/subclinical OCD also, but in our experience, that does not rule out PANDAS. It's even possible that the inherited genetics may contribute to either PANDAS or, at a minimum, the manifestation of the PANDAS behavior set. Some kids with a family history of Tourettes develop PANDAS also and have tics as a primary PANDAS behavior. It sort of adds up, doesn't it?

 

I'm in the camp that feels that we may all eventually find out there's no such thing as "regular OCD" or "regular Tourettes" . . . that it may all be at least infection/auto-immune triggered, and then our inherent wiring or genetic make-up picks up and runs with it.

 

The comorbidity of your DS's issues that you outline in your other post also corresponds well with the comorbid list of PANDAS behaviors that Dr. Swedo has identified and that many of us have seen in our kids, especially during exacerbation.

 

I think Dr. T. is wise on this topic. Try the Augmentin and see how your DS responds. Really, you've got nothing to lose and a world to gain.

 

Good luck, and let us know how things go from here . . .

[MomWithOCDSon]

This kid carries c. diff and tends toward nasty GI bugs so I'm worried about the antibiotic effects.

 

 

Sorry, I failed to note this initially, and I suppose this issue does suggest that you might have "something to lose" after all.

 

Given your DS's history, are you familiar with high-quality probiotics and other supplements/remedies like charcoal and bentonite clay that you can use to help the gut maintain good-quality bacteria during antibiotic use? If you also give your DS some abx-resistent probiotics (like sach boulardis) and potentially a detox agent (like charcoal or bentonite) away from the abx dose, those should help keep the nasty stuff at bay.

[Rachelle]

Thank you for your reply. I think we do need to try just to see if there is response. Dr. T said give it 10 days.

 

I'm just wondering if we hit a dead end and it's discouraging to think this is forever. He's really severe.

Edited August 30, 2012 by Rachelle

[MomWithOCDSon]

Thank you for your reply. I think we do need to try just to see if there is response. Dr. T said give it 10 days.

 

I'm just wondering if we hit a dead end and it's discouraging to think this is forever. He's really severe.

 

My DS was mild to moderate OCD from the age of 6 to 12; we asked about PANDAS but were blown off at the time and given the "regular OCD" diagnosis instead. DS also had some ADHD and ASD behaviors, particularly when the OCD was more pronounced, but again, the ped, therapist and psych told us "sometimes that comes with the territory."

 

At 12, however, his OCD became severe, and general anxiety and panic disorder joined it, as well. To anyone who didn't know him, he probably also looked full-bore autistic at times because he couldn't speak in full sentences (would repeat words or phrases over and over again), walked oddly (dragged one leg behind himself), was oblivious to other people, etc. He couldn't go to school, couldn't play, couldn't sleep, couldn't shower, couldn't eat. Everything caused him anxiety. It was surreal.

 

Finally got a PANDAS diagnosis 5 months after the severe "waxing" of his condition began, and we started Augmentin. Within 48 hours, he was a different kid . . . not suddenly "all better," but a different kid, nonetheless. On the second night (Augmentin dose No. 4), he came down to the dinner table and ate a meal with us for the first time in 3 months. He cleaned his plate, didn't examine the silver ware to make sure it was spotless, didn't get up from the table to wash his hands a dozen times in the middle of the meal, didn't have a meltdown because his hair got in his food and contaminated it, etc.

 

I won't sugar coat it . . . it's been a long road. And we've employed EVERYTHING at our disposal over the last 3 years: abx and other meds, supplements, dietary changes, therapy, IEP at school, lots of coaching at home, etc. And he's worked hard at it, too. But now DS is a sophomore in high school, all honors and AP classes, going all day, every day and liking it, having friends over to hang out and play video games, laughing, enjoying his life. So we can actually enjoy ours as well.

 

Don't mean to ramble . . . just mean to encourage you that your DS doesn't necessarily have to stay "stuck" in his current state, that it may not be overnight and it may take some tweaking, but Dr. T. is kind and curious and dedicated to helping these kids, and if you're an active participant and willing to do a little digging and researching yourself (hey, you made it to this forum, so that seems to be the case, right?), then the combined compassion and intellect of all of you can get your DS to a better place. Hang in there and try not to get too discouraged! Hopefully, you'll see some changes with the abx soon. Keep a journal and note even the subtlest differences, 'cause they can add up!