How long do exacerbations last?

[matis_mom]

OK, so we did steroids, saw improvement, now he's going through an exacerbation. At this point I have to accept this as a part of life, at least until he gets IVIG, we can't live in a bubble...

So, what do you do when your child is going through an exacerbation?

DS12 is already on Augmentin 875 2xday. Should I add ibuprofen daily? Should I just wait it out? Will he get back to where he was before this just with the abxs?

[Buster]

OK, so we did steroids, saw improvement, now he's going through an exacerbation. At this point I have to accept this as a part of life, at least until he gets IVIG, we can't live in a bubble...

So, what do you do when your child is going through an exacerbation?

DS12 is already on Augmentin 875 2xday. Should I add ibuprofen daily? Should I just wait it out? Will he get back to where he was before this just with the abxs?

 

In our case, exacerbations seem to last 4-6 weeks. The ramp is pretty abrupt and we could reduce the amplitude of the exacerbation by adding ibuprofen (it did seem to help) and ensuring strep positive siblings were treated quickly -- we called her our canary because when she ramped her sister was positive. When she wasn't in an exacerbation, her sister was negative for GABHS.

 

This will seem really odd and has no scientific basis, but we also found a 1/2 dose of clorotrimaton (an antihistamine) was also helpful. We don't know exactly why it worked. It could be that the antihistamine reduced pro-inflammatory cytokines. It could have just made her drowsy -- we don't know. But it seemed to help. We didn't use it often, but it seemed to help calm a ramp (i.e. reduce amplitude).

 

Best regards,

 

Buster

[thereishope]

My son first two excaerbation also lasted somewhere between 4-6 weeks. The third one took longer because of allergies surfacing during recovey and residual OCD we had to tackle.

 

I would add the Ibuprofen. You can give it every 6 hours for a week or so then taper down to once daily. I say if that helps, give it.

 

If his main symptoms are OCD, give him Omega 3's too. That helps with OCD. Also, the basics, like sleep is very important.

[matis_mom]

Thanks Buster, having a timeframe gives me some perspective. The kicker is since late October, we've been having someone sick in the house every four weeks for one reason or the other, in spite of all our efforts to erradicate strep! So at this rate the poor child will go from exacerbation to exacerbation... hopefully we'll figure out what's up with his sister and that will keep things under control.

[dabel]

What the heck? My kids exacerbations last over a year! We have had a couple of shorter ones but typically I need to prepare myself for a long haul. Hopefully he never has another one and if he does I can use some of these tricks to help with the duration.

[FallingApart]

Dabel, our exacerbation lasted for a full year as well. It was horrible. But, we got things under control a bit here with the monthly IVIG and then got an exacerbation even during the monthly IVIG. I was convinced the blip would last all the way until the next IVIG dose. But, it lasted 9-10 days.

 

I would like to chime in again about the colostrum. We have been doing this here for several months. It's a battle to get DD to take it regulalry. But DH takes it regulalry and he has been the healthiest of all of us. It is definitely noticable that his immune system is stronger from it. If we can keep one family member healthy and not spread a cold or other things, then that is great. We are trying to get PANDAS DD to take it but it isn't consistent.

 

Also, in this last exacerbation, ibuprofen did seem to work for us. This is the first time we've seen an improvement from ibuprofen.

[dcmom]

My dd's first episode- with positive strep- lasted about 12 weeks. She clearly needed a month of zithromax to clear (or hopefully so) the strep infection. After the twelve weeks, she was not at baseline, but very close.

 

Her second episode induced by T&A lasted close to 8 weeks, appeared to possibly be starting to remit (on abx daily entire time), and then fully remitted with steroid burst.

 

Her third episode from H1N1 was stopped in its tracks after 3 days with a steroid burst.

 

She has had other shorter, milder flare ups from exposure to strep of classmates, which seem to last from 3 days to a week.

 

Hopefully if you resolve your daughter's strep- Mati will settle down quickly. Would you consider zithromax for her- possibly her strep has gone intracellular? In our situations- I would not hesitate to give her a 30 day course of zithromax. I imagine Dr L will concur.

 

Take care of yourself, with that little baby on the way

[Worried_Dad]

Our son really seemed to have "chronic" PANDAS similar to Sammy Maloney. We never saw any signs that his exacerbations were waning until we intervened with treatments (IVIG, mega-dose augmentin). We believe this may be due to the fact that the underlying strep infection was never fully eradicated. And each exacerbation has been more severe, unfortunately.

 

Ibuprofen did seem to help our son. Might be worth a shot? Have you considered upping the augmentin dose to 1000 mg of XR twice daily? If that's not working, maybe try a different antibiotic (zithromax, omnicef).

[thereishope]

I should add that with my son, I did get the sudden onset/strep connection rather quickly. With the first exacerbation, his behaviors were off for 2 weeks then we found he had strep. The 4-6 weeks of recovery began after we started meds and I think the fact that we caught the strep rather quickly helped a lot.

 

With his second exacerbation, he received a steroid within 3 days of contracting strep again in addition to the antibiotic. That recovery I think was about 6-8 weeks.

 

With his third strep triggered exacerbation, it took about 5 months. But, like I said, he had other triggers occur during recovery which set him back and I realized he had residual OCD that had to be dealt with with ERP.

[Buster]

OK, so we did steroids, saw improvement, now he's going through an exacerbation. At this point I have to accept this as a part of life, at least until he gets IVIG, we can't live in a bubble...

So, what do you do when your child is going through an exacerbation?

DS12 is already on Augmentin 875 2xday. Should I add ibuprofen daily? Should I just wait it out? Will he get back to where he was before this just with the abxs?

I guess I should add that the 4-6 week item only applied when we had cleared the strep and kept her on prophylactic antibiotics. In situations where we had overlapped illness (i.e., someone else in the house had strep), there was no remission. We plotted symptoms religiously on a daily basis, so after 72 weeks of graph points, you can see the exacerbation points and the sawtooth pattern. Unfortunately, we also saw an increased baseline if there wasn't a sufficient down-time between exacerbations.

 

Buster

[matis_mom]

I guess I should add that the 4-6 week item only applied when we had cleared the strep and kept her on prophylactic antibiotics. In situations where we had overlapped illness (i.e., someone else in the house had strep), there was no remission. We plotted symptoms religiously on a daily basis, so after 72 weeks of graph points, you can see the exacerbation points and the sawtooth pattern. Unfortunately, we also saw an increased baseline if there wasn't a sufficient down-time between exacerbations.

 

Buster

I guess that's were I feel we are losing this battle, in trying to have enough time during exacerbations. I did start keeping a journal and am writing things down to help see the ups and downs, and keep track of other things going on in the family. I tend to notice the downs more than the ups!!! I would have a hard time putting a number to how well he's doing, though, but I guess I could just list his typical symptoms and rate each daily to see how things correlate.

[thereishope]

It also becomes harder when you sadly forget what your child was like pre-PANDAS and you have to get to know them all over again...their natural quirks and all.

[matis_mom]

It also becomes harder when you sadly forget what your child was like pre-PANDAS and you have to get to know them all over again...their natural quirks and all.

Fortunately the steroid burst we finished over Christmas put him almost back to his old self so that memory is not too distant, and it was so good to see that yes, he's still in there. But yes, definitely hard to see it coming back and displacing your normal child with this mess of nerves you can't really help out.