OCD is back?

[NMom]

My son (6) has his first real PANDAS episode last May. He was put on Augmentin and over a period of weeks the symptoms all went away. He's been doing so well ... no OCD symptoms at all...and then he told me last night that he may feel it coming back a little. It's still manageable and he's not entirely sure that's what it is...but I'm having flashbacks to May. I can't stop crying. I'm literally in full-blown panic mode. I don't know if I should increase his dosage and, if so, by how much. He's on 1000 mg of Augmentin XR right now (recently lowered from 1200 mg of Augmentin ES). If this is a second exacerbation...do I call Dr. Latimer or just increase the medication now? Please help!!

[dcmom]

Give it 24 hours. If you think it is coming back, increase the dosage and give advil every 8 hours. I would try this for 5 days, and then slowly try to wean back down (one thing at a time). You probably wont be able to get to Dr L in time (I usually do this on my own)- but I would set up an appt with her sometime in the next month- you can always cancel if he is fine.

 

Does he have a loose tooth? exposed to strep at school? another illness? Lots of kids have what I call "blips", not full blow episodes, from exposures.

 

Stay calm- you need to see a pattern over the next 3 days. Was it a false alarm? Is it a small increase in symptoms that plateaus? Or is it continuing to get worse daily?

 

Update this thread often- and everyone here will walk you through this...

[NMom]

Thank you for replying. I needed to hear that this can happen and it might be minor. When you increase the dosage..what do you increase it to? He just started Augmentin Extended Release (tablets - 1000 mg). Before that he was on Augmentin ES (suspension - 1800 and then 1200 mg). I don't know if those are basically the same drug so not sure if I can take him up to 1500 mg on the Augmentin tablets.

 

I just got complacent over the summer when we seemed to have it all under control. I keep telling myself that this is different - we have a diagnosis, a doctor (Dr. L) and he's on medication. It won't be as bad and we'll deal with it much faster. But I still can't stop sobbing.

[airial95]

I agree with dcmom. Wait 24 hours and see how he does. Whenever my son is even exposed to strep - he has a "blip". His is a bit more extreme than most. If on a scale of 1-10, 10 being full blown exacerbation - when he's exposed, he swings up to a 6-7. But it has never lasted longer than 48-72 hours when it's just an exposure. If it lasts longer than 2 days - we call the Dr. and get a throat culture/adjust his meds.

 

We found we can handle those exposures with ibuprofen, patience, and a couple of glasses of wine after bedtime

 

Hang in there - You'll get through!

[Megs_Mom]

We have this all the time - but the spikes are not there (so far) anymore. Know your feeling of panic, but we see small hills, not huge mountains. You may find that he gest sick in the next 3-5 days. We increase our abx, do motrin every 6 hours, and make sure we are on top of vitamins, omegas, and vitamin D. If you find you are in a mess in 5 days, then you can use prednisone. Do you have it on-hand? If your child has a chronic issue, which he may, you just need to be prepared for these mini-bursts.

 

Hope we are right - we'll all be thinking of you. Good luck!

 

By the way, I panicked the first 3 times, my best friend can tell you! My dd could feel it coming too - even a few panic attacks on her part - but now she is pretty calm about it as well. For the most part. As a parent, once you have been through the worst, and then things are calm - when it comes back, you are a little PTSD. Usually the first time, you are in the trenches, with no time to mourn. When it comes back, everything comes out. It's totally normal. You might want to go talk to someone about it - there are all kinds of therapists training in helping parents with a sick child - whatever the reason. Talking - chocolate - wine - they all work for me.

Edited September 20, 2010 by Meg's Mom

[NMom]

Thanks to all of you for replying. I'm holding it together a bit better this afternoon because of your replies. I think this really is like PTSD. I was so happy to be past our initial exacerbation this summer and I think in the back of my head I was just hoping that was it...not realistic, I know. Judging by my very extreme emotional reaction today...I guess I'm not exactly over the shock of this summer.

 

I do have a prescription for steriods but have not yet filled it - think I will do that in the morning. I asked him how his day was after school today and he said fine...didn't feel the OCD...but he was saying that right up until last night too. I sometimes wonder if I've asked him so many times whether something he was doing was related to the OCD...that I've now confused him. He's only six and I think he's genuinely questioning what is OCD and what is not. Think I'm now OCD about his PANDAS!

 

One question about increasing the antibiotics..how do you know what dosage to increase it to? My son just switched from Augmentin ES (suspension) to Augmention XR (tablets) and I don't know how much to increase his tablet dosage to. Our doctor (Dr. L) is not easy to reach for questions like this so I'm feeling very panicked about not knowing what to do if this continues to progress over the next 23-48 hours.