Son had recent PANDAS episode, now confused and inattentive

[McMom]

Need some advice! My 14 year old son was finally diagnosed with PANDAS last year after many years of being alternately treated for school anxiety, general anxiety disorder, and OCD. About three weeks ago, he started with manic behaviors (excessive talking, staying up all night, dramatic increase in OCD behaviors, elevated mood). Two days into it, even though he didn't complain of feeling sick, I brought him to the pediatrician who diagnosed him with bilateral ear infections and prescribed Augmentin. Augmentin has settled his episodes quickly in the past. Five days later he still had barely slept, so we called his neurologist who put him on Clyndamycin as well as his psychiatrist who gave him Clonidine to help him sleep, which didn't help at all. (Just for background he also takes 100 mg of Zoloft and 2.5 mg of Abilify daily and we just switched from Penicllin VK 250 mg a day to Azithromycin 250 mg once a day.) We saw a gradual improvement on the Clyndamycin, and he got back to school after missing a week of school and out another for spring break. He did somewhat okay the first two days back at school this week, but the past few days he acted like he can't think straight--can't begin to do his assignments, can't remember what went on in class or instructions for homework, can't remember how to do easy equations that he definitely knows how to do, is constantly flipping through his textbooks and papers in folders, stares at us blankly when we ask him questions.

 

I asked him tonight if he is feeling anxious and if these "sticky thoughts", as we call them, are getting in the way of him being able to concentrate. But he says he is just so confused and can't concentrate and that the confusion is in turn causing him to feel anxious. This is new for him. He has had difficulty in school before because his anxiety and the OCD thoughts have been so overwhelming, but not like this.

 

This is my first time posting. I have read many posts on this forum and let me tell you, it has been a godsend. Hope someone has some insight!

 

 

 

[Chemar]

Hi

I am bumping up your first post so others can respond

[4Nikki]

When our DD starts with the neuro symptoms we Iook for the anti iinflammatory the slow down. We cut out gluten and sugar which seem to help so pay attention to his foods and check for allergies if you haven't. When we fall of the wagon, we notice an increase in symptom intensity. Fish oil may help too. Has he had a Cunningham panel done? We haven't found anything for DD's anxiety.

[McMom]

Thank you! It's funny, just this week, we have focused on his diet and have been trying to follow an anti inflammatory diet and look for any triggers. Kind of a hard sell for a 14 year old boy but I think he feels as desperate as we do and will try anything at this point. He hasn't been tested for food allergies but it's on my list since he's always has stomach issues. As far as the Cunningham panel, we saw his neurologist last week and he ordered a ton of blood work that we're waiting on results. I will see exactly what he tested for, compare, and follow up with the doctor. And we started with fish oil too!

 

I just noticed that his seasonal allergies are really kicking in too...maybe that's a trigger? This PANDAS stuff isn't easy!

[reactive]

Unfortunately all kids are different.

First, unsure if you are treating with a PANS/PANDAS physician

But for my DS14, he did have an exacerbation mid March (post IVIG 8-2014)

It happened when the snow melted here and mold allergens would have been high, and he had a viral URI right before that

He had a sinus nose smell that led us to get sinus CT and rx for diflucan 100mg daily X 14 days (already on treatment dose augmentin since June 2014)

Sinus CT: chronic allergic changes

His exacerbation: tics, OCD, age regression and baby talk, and a purely encephalitis like reaction you would need to see to believe

He was put on a steroid taper and it stopped his symptoms

WE are seeing an ENT this Wed to look up there

I put him on benadryl and night, loratidine in am, flonase at bedtime

His vitamin D was low so he is now on 50,000 iu D3 weekly X 12 weeks

He is taking 10mg prednisone daily now...tried to wean down to 5mg but can't

May need IVIG if can't get off steroids

That is our story but yes allergies can trigger for us

I know steroids are not "recommended" for PANS/PANDAS per se but they are working for us right now- lot of side effects for sure and need to be used with respect

 

[MomWithOCDSon]

Yes, allergies can certainly trigger PANDAs/PANs behaviors, in our experience; the allergies do set off the immune system which is, after all, part of the problem.

 

We would call the confusion your son is experiencing "brain fog," and yes, we've seen a lot of that, too. I suspect that's a result of excess glutamate and/or histamine, flooding his receptors and making it difficult to focus and/or "separate the wheat from the chaff," as it were. I think you're on the right path with antihistamines, and I might also suggest you try Pepcid (famotidine - an H2 antagonist that blocks uptake of histamine in the gut) for a period; make sure to provide some good probiotics along with the Pepcid, however, so that the flora balance doesn't get thrown out of whack. We find it to be very helpful at peak allergy season(s), though.

 

Have you tried n-acetylcysteine (NAC)? It doesn't work for everyone, but it works well for our DS, and my son and yours seem to have a good bit in common with respect to symptomology. NAC is a glutamate modulator, it's easily available OTC, and there've been a couple of Yale/NIMH studies on its use and effectiveness in addressing OCD. It might be worth a shot.

[McMom]

Thank you. I will look into the Pepcid and NAC too...like I said, whatever helps! Seeing Dr. Trifiletti in NJ next month and will hopefully get more answers.