Is it still PANDAS or "regular" OCD now?

[mariamacko]

I posted a few weeks ago about our son Ryan....He had sudden onset OCD and we found out his ASO and Anti DN-ase titers were really high! This was back in December. He started Minocycline and for the first few weeks, he was back to normal. Then some behaviors started again but not as bad. We have tried Augmentin but he couldn't tolerate well. I have heard there is a new FDA warning for Azythromycin.

BUT...we are now at a point where his titers are coming down. So he hasn't been reinfected with strep. They are almost back to normal range with Minocycline and a lot of things have improved but he still has inappropriate and aggressive thoughts that he verbalizes.

 

My question is....could a strep infection triggered the OCD and now he no longer has PANDAS, but has "regular" OCD????

 

I am not sure what to do at this point?

 

 

[LNN]

I think it's more likely there's an additional infection that isn't being hit by current abx or a yeast infection or a negative response to the "other things" you're using. In my own experience, there's always been an underlying cause to the OCD - not "just regular OCD" My son is fighting a current bout of OCD which we suspect is yeast. My daughter has had OCD-like anxiety (but no compulsions) due to mold, methylation problems and a chronic infection we never named but tracked by following rises and drops in her C3d immune complexes.

 

Is he still on minocycline? What are the other things you're using? And don't forget the value of CBT and ERP as a support tool, regardless of medications. Perhaps if you can share more details, others can help you brainstorm.

[Dedee]

I agree with LLM that you should investigate other possible infections as a potential cause for the behaviors. Also, there are other antibiotics that could be helpful such as clindamycin, or biaxin that you could try. Many PANS parents find they have to use a combination of medical treatment and CBT / ERP. Some OCD behaviors get "stuck" even after the trigger has been resolved. Giving the child the tools to help himself with these issues is very empowering. There are several programs just for PANS kids or you can try someone local who is trained in CBT / ERP for children. Many parents on this forum have found it very helpful.

 

In regards to your statement about the FDA warning on Zithromax.....I pasted below one of my responses from a previous thread on this topic. Hope it is helpful......

 

I think there is being far to much made about the Zith topic. I am a cardiac nurse and so we are aware of many drugs with this alert. We have a list in every nurses station. You can google it and you would be suprised how many medications have the same issue. These are medications that (in medical terminology)lengethen the Q-T interval, putting the heart at risk for rhythm problems. There are many other medications that your children may take that do the same things.......Benadryl, Biaxin, Cipro, Diflucan, Celexa, plus many more.....Again, google "drugs that lengthen Q-T interval" and they will list them for you. The problem is usually with people who have pre-existing cardiac issues. Some may or may not know they have these issues. Those people born with some sort of congenitial defect and do not know it, then are placed on several different types of meds that cause the same problem are at risk for life threatening complications. So for instance you have congenitial long Q-T syndrome and then you get a terrible sinus infection. You start taking an antibiotic that causes lengethening Q-T, and a sinus medicine that does the same, then some diflucan for the yeast from the antibiotic, and maybe you are already on a blood pressure medicine that legethens Q-T, and then you get dehydrated on top of it and your electrolytes get out of whack......well then you get the "perfect storm" and it's a set up for life threatening rhythm problems.

So you need to look at your family history. Have there been people in your family that have had sudden unexpected death unrealted to a specific illness or disease? Have there been members of the family with sudden cardiac death at a very young age? Do you know of family members with an Internal Cardiac Defibrillator? If you are still unsure, speak to your physician about your risk for sudden cardiac death. Just remember, it's rarely the drug alone. It's a combination of the medication and a genetic and /or physiologic defect. Hope this helps clear thing up.

 

Dedee

[dcmom]

Hi maria-

 

How long was he on the antibiotics? At initial onset of pandas, my dd needed 1-2 months of daily antibiotics before we saw improvement to 100%. It could be he needs more time, on the abx.

 

I am wondering why minocylclene? Most kids seem to do zithromax (we use) or augmentin. I would say those are the two on this board that have been used most successfully.

 

The other issue is- in our experience, pandas is an autoimmune disorder. For my dd, it is not enough that we get rid of infection (most of the time) we also need to calm the immune system. (ie steroids)

 

Lastly, we have seen ocd "stick". Kids get in habits, they "learn" from their ocd/ fear, and just because the medical reason behind having it goes away, does not always mean they can let go of it on their own. This is when a really good therapist using ERP (exposure and response prevention) is essential.

 

We have found hitting pandas with everything: antibiotics, immune modulation, ERP along with plenty of sleep, exercise, eating healthy, and not having a crazy schedule, and of course firm (but compassionate) parenting- is what works,

[MomWithOCDSon]

In our experience, even if you successfully rid the body of infection, the immune system isn't always so quick to "bounce back," especially if it has been tipped to imbalance for some time . . . maybe quite a while before you even knew it. Not to mention, all sorts of other "common" issues can, unfortunately, continue to trigger an immune response that can aid and abet the existing imbalance, such as viruses, seasonal allergies, etc.

 

Also, like dcmom says, OCD can "stick," especially if it's gone on for some time. But as the parent of a boy who was dxed with "regular OCD" at 6, dxed with PANDAS at 12, and doing quite well now at 16, I personally don't believe in "regular OCD" anymore, even in the instances in which you're left with some "sticky" obsessions/compulsions. If you hit this with everything at your disposal in a compassionate but relentless way -- medicine, immunomodulatory therapies and supplements, and ERP -- you can arrive at "subclinical," if not completely eradicate it.

 

Don't give up!

[pr40]

regular OCD? Living in PANDAS world for a year now, I am no longer sure there is such a thing as a regular OCD.

I mean, alternative to PANDAS is a belief that our kids (who have not been physically or physically traumatized) have mental problems seems outgrageous.

Developemnetnal issues, perhaps.

[airial95]

_{My son is younger - but he gets a lot of "residual OCD". After all the symptoms are gone, there are still some ritualistic behaviors remaining. Our therapist described it as more learned behavior than anything. She correlated it to someone getting addicted to pain killers - initially - they need the drugs (rituals) to help with the pain (anxiety), eventually, they continue to use the painkillers long after they are needed b/c they know they will feel "bad" if they don't. It's the same with the rituals - he may not really feel the anxiety anymore, or need to perform the rituals, but he remembers that he feels "bad" if he doesn't, so he continues to do the behaviors. CBT helped us immensely with that part of the OCD, and has even given us tools to use when flares come back around.}

[mariamacko]

Thank you everyone for your posts!! I really appreciate it. With my son, it is not really any compulsions, though, it is saying the inappropriate or aggressive things that he says. Do you still think it might just be "learned?" He has been doing better I think...he doesn't say these things nearly as often as he did but they are still there sometimes. He will say things like "I had a thought of killing/hurting my brother, my dog, etc..." or "I had a thought about someone's pee pee" What is the best way to handle this? It usually makes him feel bad or anxious so I just try to reassure him that it is just his brain making him think these things and it's ok....

[pr40]

we are strugling with the same issues related to aggressive talk. cbt drs want to treat it. thing is, however, that when he is OK, he is not aggressive at all. so, how you treat somethign that is only seldom there? I think that the answer is that you treat PANDAS not behavior.

It may be different with behaviors or feelsings like anxiety that are there with more consistancy.

[MomtoJake]

Sorry you are going through this, we had this issue as well! It sounds like to me that you son is having intrusive thoughts and that he is telling you what they are vs. just having agressive/innapropriate OCD talk. My son would have a physical jolt reaction to intrusive thoughts and I encouraged him to tell me what they were no matter how bad. He would say "Goofy Face (his name for his OCD/intrusive thoughts) is telling me to tell you to wreck the car, but I don't want you to) I wanted him to share them with me so we could talk about them. I also cautioned him from telling others because they would not understand. He is only 7 but he "got" it after awhile. I also agree with other posters that it could be a new infection or just being exposed to someone else that has strep even if he does not have it anymore. His immune system is "in that mode" and it does take time and treatments to stop reacting that way.

[mariamacko]

Just got the rest of the bloodword results! His ASO titers are normal but the Anti DNAse titers barely fell at all. He initially showed symtpoms in October but by the time we found a doctor to help us it was December. His DNAse titers were over 700. Then in Feb, he had bloodwork again and the DNAse titers fell to 497. So it appears they fell almost 200. However, we just had them tested again, about two months later again, and they have only fallen to 459. Any ideas why the level hasn't fallen as much even though he is on Minocycline????

 

Tx!