Is there a difference between ADHD and PANDAS ADHD?

[ibcdbwc]

Interesting conversation here. My DS12 has been around this block a few times. OCD started at age 5. It was an on/off switch. At the time no one suspected PANDAS. He also would have periods of "SEVERE ADHD." I remember in first grade meeting with his teacher in the fall. She said so many wonderful comments about his attentiveness and how on task and bright he was.... Fast forward SEVERAL months (january I believe) and they called to tell me he was racing around the cafeteria and had eaten the bird seed meant for a science project. They said, although they are not supposed to, "he needs testing for ADHD now!."

Yes, the "hyper" is so much more and it's very on and off. After several months I met with the teacher again and she thought I had put him on medication because he was so calm and focused. Nope, no meds. He had just switched off.

 

We've been down the traditional path and down the PANDAS path. DS was symptom free for well over a year (meaning no dramatic flares)in sixth grade. Now in seventh grade, we are back in the thick of things times 5 months. We are starting over.

 

I had not seen that hyperactive piece in a long while but it came back even at this age. DS is now either hyperactive (at school he doesn't get in too much trouble but his focus is reduced and his teachers say he is much more chatty and "fast" than his usual), mad or obsessionally pessimistic. To us he seems to cycle through these phases now rather than turn them off or on - which is why we began heavy duty journaling. It's perplexing but probably because DS is an adolescent on top of everything else. He has chronic sinus infections, severe allergies to dust mites. Looking into MTHFR and healing...He has a host of physical issues now too - flushing red cheeks and joint pain. He does have confirmed autoimmune issues. We are checking lyme...

 

I will say that when he is hyperactive and just all around strange I see him running to the kitchen and eating every carb in sight. So yeast is definitely a consideration to look at.

 

Quannie, not to highjack the thread but I find it interesting about your nephew as I've considered a bipolar type issue in my now adolescent son. He was classic PANDAS from age 7-10. On and off no question. But things look different now. Is it possible your nephew does indeed suffer from auto immune inflammation?

Edited February 4, 2014 by ibcdbwc

[JoyBop]

Ibc thank you so much for posting all of that. I can totally relate to returing you said. Right down to DS eating the science project! My son does all that you mentioned. It sound a like your school is supportive and communicative about your son and for that you are lucky' my son just gets swept under the rug. Were pulling the plug this week and I can't wait! Although holding my breath for when the behaviors start again in the new school. Hopeful I am met with compassion and support. Do you have any advise for me going forward with a child much like yours currently in third grade. Does your child receive services ?

 

Here is a link to the questionnaire many doctors use to screen for bipolar just to give you an inkling. http://www.psycheducation.org/depression/BSDS.htm

[ibcdbwc]

Joybop, what I didn't mention is that we too changed school after that first grade experience. We went toa very small and very new private school. The curriculum and teaching style was to be very structured, very teacher led. I initially worried about what might happen if DS fell off the cliff again but we found that the smaller structured environment helped greatly. DS was able to establish himself academically in this setting and he was placed in signif. higher level classes. He did very well. I think even when he's not in a flare he is more sensitive to his surroundings. So minimizing all the hub bub of a big crazy school really helped in a general sense.

 

I was able to develop one on one personal relationships with the staff. So when DS did flare, they could see the change and not beat him down. They knew his baseline. They knew a flare. That being said, we worked to still hold him accountable and I learned that he could hold it together even though he was compromised. DS would require warnings but was able to redirect in this school setting. We typically had a major flare in Dec/Jan and then another in the spring.

 

Thank you for the bipolar link. In my opinion most mental illness, especially those types that cycle or start dramatically (schizophrenia) have roots in autoimmune insult. I do know that most traditional drugs have a paradoxical reaction for us. Zoloft, prozac-- really made him hyperactive and even suicidal. The only things that have ever helped are anti-inflammatory approaches like tumeric, NSAIDS, and antibiotics (azith, augmentin and suprax). So we press on.

 

I will say though that one thing I wish I had done when DS was your age, was to get plugged in with an understanding and gifted pediatric therapist. I wish we had been able to establish that relationship early on. Because even if the OCD/anxiety switched on and off due to autoimmune issues - he still needed to learn how to deal with these issues. I read and read and read and we did a bit of therapy here and there but nothing could help because he was not able to grasp concepts of therapy when in the grips of a flare. We were never able to find that person that could offer therapeutic support. And in between flares, we didn't really want to talk about it. I pulled wool over my eyes and in retrospect that was a mistake. Because as an adolescent it's much much harder to convince them to talk to someone -- when this syndrome (or whatever this is!!) comes barreling back.

[riffleshell]

I just wanted to tell Nancy that this comment ...

 

 

For our DS, we discovered that what looked like ADHD was really just his trying to combat a whole host of compulsions and obsessions . . . he was distracting himself on purpose to avoid all the anxiety-provoking people, things and situations!

 

was an incredibly valuable insight for me. A lot of his behavior makes more sense now that I look at it like this. Thank you so much for this. Thank you thank you thank you.

 

(And yes, I have been noodling over this one for two whole weeks.)

[JoyBop]

Ibc I feel like our stories are so similar. Tomorrow ss starts his new smaller private school and I am hoping he finds everything he needs there and less of what he doesn't. My son was also suicidal and agitated on Prozac and Zoloft. We have found everything is much easier to accept and deal with without the side effects of the drugs which make everything messier. He is allergic to Amox and is on Keflex for the long term

 

We have a therapist who is great with DS. She tends not to be quite as talented at handling me, but everytime she helps him score a victory and take a step farther back. She's definitely won over my trust and in learning to just let him go with her alone. I used to want to be in the room with them and glad how to help him but she notices that he is a different child with me there. At first that was very hard to swallow, but when I saw he last week sniffing gum, and touching wrapped pieces of gum, I knew I had to get over if. Gum is the one thing (ok and the thought of someone vomitting) that will send him over the edge.

 

I'm amazed at how similar our stories are. Thanks again for posting in this thread!

 

Riff, I also agree that the distractanikity can be avoidance and distraction from anxiety and OCD. But there is also a motoric hyperactivity that accompanies it which I think makes it even more complex. There is so much going on at once in these kids bodies and brains its enough to make us all crazy. I wish it were just plain old adhd and that there were a magic pill that could make it all go away.

[3bmom]

Just read all the posts. When we first started this journey 9 years ago today we had the voracious eating. That was one of the behaviors I kept telling Drs that didn't make sense. He shoved food in his mouth with his hands as if I had not fed him in a week. I believe it has to do with inflammation in the brain effecting Leptin. Not sure its been awhile. Never saw it again after that flare in fact his 3rd flare he went the anorexia route and would not eat.

 

We have also experienced the weird ADHD. Some I agree is the spinning in circles from OCD but we also severely lost Math and reading skills. Our Dr put him on Intuniv which has helped. Everything is back except some Math. He is able to do computer programming but struggles with Algebra concepts.

 

We have found GMO free diet along with Dairy and wheat has helped the most. When we changed diet our IgG numbers went from life threatening to almost normal. If you are having bleeding in the gut I highly recommend you watch "Genetic Roulette ".

 

We still continue antibiotics and antivirals.

 

Good Luck.