My heart is breaking . . .

[MomWithOCDSon]

DS13 has been doing so well, up until about 3 weeks ago. Over his spring break, he had several meltdowns, which we attributed primarily to him being unscheduled and feeling a bit at lose ends. Plus, even though some behaviors seemed to get worse, others continued to improve.

 

We had been slowly scaling him back after 5 months on high-dose abx (2,000 mg. of Augmentin XR daily), on which he had improved tremendously. It was at the point where he was down to 500 mg. of regular XR twice daily for about 2 weeks that we really noticed contamination becoming an issue again, even though he seemed fairly stable emotionally and kept his overall good attitude.

 

But after repeated stalemates over contamination issues we thought we'd long left behind, we called the doctor and stepped back up to the full dose of XR. Within a mere 48 hours, we saw the positive impact, and we were sure we were back on the right path again.

 

But for the last two days, he's been having major homework trouble. . . can't get through it, meltdowns, perfectionism (he's never sure he's answered the questions correctly, or thoroughly enough), dragging the process out so long that there's no way he can finish it and still get a good night's sleep, etc. And he started with the spastic sort of "jerks" and "twists" again (are these "tics"?), as well as the chorea-like fanning and fisting of his hand, over and over again.

 

He went to school this morning, like usual, and everything seemed fine, with the one minor exception that, I realized as I dropped him off, I'd forgotten to give him the Valerian Root we've given him the last two days to sort of encourage his sense of calm, even though the homework sessions the nights before have been tough.

 

He was at school for about 2.5 hours before he called me from the nurse's office. Said he was freaking out in class, feeling very anxious, was jerking and twitching and making little noises (vocal tics?), breaking his pencils, etc., and the other kids were looking at him. I didn't know what was best, but I went over to the school and picked him up, mostly with the thought that I could bring him home for lunch, give him a Valerian, and take it from there. When I picked him up I asked the nurse if there were any recent cases of strep in the school, and she said no; the last one was before spring break (4 weeks ago), and it was in a different grade (those kids are in a totally different part of the building, though they share spaces like the library and the cafeteria). She also acknowledged, however, that, at this age, parents don't always report the strep, though. Still, given the dose of abx he's on, how likely is it that there's been some "breakthrough"? Or could it be another strain that doesn't respond well to Augmentin?

 

So, he's been home for a couple of hours, had lunch, took a Valerian and some more probiotics, and we decided he'd just spend the afternoon here, working on some school work. He cannot get through his math at all; he is trying like crazy to avoid a writing assignment for language arts, even though he can do it on his computer. I gave him a couple of Ibuprofen, also, but it doesn't seem to be helping him in any measurable way.

 

I called our pediatrician who's been prescribing the abx to ask her about maybe going up (the adult XR dosage is double what we're giving him for sinus infections, etc., and he's technically adult-sized) or maybe trying something else, like azith. Also want to ask her to order strep testing (titers) for all of us in the family, since I'm pretty sure swabs/cultures for all of us will come back zip.

 

I also called Dr. K.'s office. We've not gone that route yet, but I'm terrified this is the beginning of the same downward spiral that we began about this same time last year, only now what arrested it a year ago (Augmentin) isn't doing that for us now.

 

Anybody else experienced something similar? Any advice? Can anyone tell me the specific test to request for Myco P, just in case it's THAT this time around instead of strep?

 

Thanks in advance for your help!

 

Nancy

[sf_mom]

Go to WHOLE FOODS, pick up Great Plains 'Bentonite Clay'. Give him a 1/2 cup in morning and 1/2 cup in evening (you can add almost anything so he'll drink it). Our older son drinks it straight and our younger twins drink it with Kefir and Apple Juice.

 

HANG in there. Could be die off reaction or reaction to new exposure.

Edited April 14, 2010 by SF Mom

[thereishope]

I am so sorry. We lived through a similar timeline surrounding spring break then a full "eruption" shortly sfter he returned to school. For my son, he had strep again.

 

I know your son is on antibiotics and that can cause a false negative on a strep test, but it may be something to do. If you do get him a strep test, make sure the doctor remembers that he may get a false negative.

 

As for school and classmates, the school nurse is correct. Often parents do not say the reason for absence. They simply say "Tommy isn't feeling good".

 

Has he ever done a steroid burst before? That is something to consider. You are wise to rule out strep in all family members as well.

 

If he is sick again, it may take longer to see the results you saw the first time he went on high dose Augmentin. Sometimes subsequent infections are a longer recovery. Finally, it was said on here befroe that high dose Augmentin actually starts to kill the strep as oppose to just slowing down reproduction of the bacteria. I don't know at what dose it switches gears.

[thereishope]

I will add that when my son has a strep infection, he will worsen for anywhere between 3-5 days before I see any improvement.

[Chemar]

does he have any seasonal allergies? In addition to whatever may be causing the exacerbation, if the immune system is also reacting to allergens, that can cause a flare of so many things in kids who are already hypersensitive to inflammation and immune stuff. For TS kids that can mean increased tics and OCD. Not sure if it is the same for PANDAS kids but just thought to mention it.

[MomWithOCDSon]

does he have any seasonal allergies? In addition to whatever may be causing the exacerbation, if the immune system is also reacting to allergens, that can cause a flare of so many things in kids who are already hypersensitive to inflammation and immune stuff. For TS kids that can mean increased tics and OCD. Not sure if it is the same for PANDAS kids but just thought to mention it.

Yes, he does have allergies. I guess I would sort of expect a little uptick in behaviors, but nothing this sudden and/or this extreme. Does a sudden and extreme ramp-up in behaviors fit with the TS model? If so, then maybe that is at least part of what's going on here.

 

However, we have him taking curcumin and quercitin, as well as taking a prescription nasal spray (Flonaze); he's not exhibiting any typical signs of being overwhelmed by allergies, though he did have a red eye a couple of days ago. It cleared up with a couple of doses of eye drops.

 

Do you have anything else to recommend for the allergy picture?

 

Thanks!

[Chemar]

yes, TS kids can show quite a flare at this time of year when they have allergies.

 

running hepa filters, especially in their rooms can help as can running air conditioning 24/7

 

some of the parents seem to find that "little Noses" product good

 

it is very possible that he has been exposed to strep at school and that may be the main culprit again.

 

just anything you can do to lessen other triggers is a good idea, and you seem to already be addressing the allergies so possibly they are not a major contributing factor at this time

 

 

I remember one time when my son had a major tourettic OCD flare every time he went to school....turned out they had just done a pesticide fumigation and some painting and new woodwork, plus new carpeting in his classroom....all known tic/OCD triggers for him. Like many kids with neuro disorders, the combination of his sensory issues plus multiple chemical sensitivity, make him react big to sometimes little things

Edited April 14, 2010 by Chemar

[thereishope]

When my son was recovering, allergies sent him over the edge. I still vividly remember the meltdown due to OCD he had that sent us to the dr for a strep test. Oh my goodness, it was one of his worst ones. I was dumbfounded when it said negative. It was odd, his PANDAS worsened BEFORE physical signs of seasonal allergies. One weeks after that meltdown his eyes were completely red. A few days after allergy meds got in his system, the eyes got better and the PANDAS symptoms got better.

 

Now that he is recovered, this year allergies did not affect his PANDAS! However, I should add we started allergy meds the second we thought they might be surfacing. Sure enough, a week later his brother's allergies were full force.

Edited April 14, 2010 by Vickie

[matis_mom]

does he have any seasonal allergies? In addition to whatever may be causing the exacerbation, if the immune system is also reacting to allergens, that can cause a flare of so many things in kids who are already hypersensitive to inflammation and immune stuff. For TS kids that can mean increased tics and OCD. Not sure if it is the same for PANDAS kids but just thought to mention it.

Yes, he does have allergies. I guess I would sort of expect a little uptick in behaviors, but nothing this sudden and/or this extreme. Does a sudden and extreme ramp-up in behaviors fit with the TS model? If so, then maybe that is at least part of what's going on here.

 

However, we have him taking curcumin and quercitin, as well as taking a prescription nasal spray (Flonaze); he's not exhibiting any typical signs of being overwhelmed by allergies, though he did have a red eye a couple of days ago. It cleared up with a couple of doses of eye drops.

 

Do you have anything else to recommend for the allergy picture?

 

Thanks!

This week we've been having trouble with ear infections, brought on by the allergies. Is he stuffy at all, any complain about the ears?

[kimballot]

I feel for you! It is scary. If you think it might be related to allergies - here are some things we do -

 

One thing we use for allergies (in addition to the usual zyrtec, rhinacort, and allergy low dose shots)... is Gastrocrom. It is good for food allergies - it is a mast cell stabilizer and it is supposed to prevent food allergies. For a while we used it before every meal - then down to once a day, now we use it as needed.

 

The thing with allergies is that it is that "barrel" effect - the allergies accumulate through out the day. If your allergy load is low, (meaning that you have not experienced any allergens yet that day) then if you go to school and sniff mold or dust mites, you can deal with it without a reaction...

 

But - if your allergy load is already high (meaning, you breathed pollen and dust mites when you were sleeping, got up and ate a food you were allergic to, went outside and sniffed the freshly mowed lawn) then went to school and sat in a room that had some mold... BAM - the mold (or whatever the most recent allergen is) sends you over... even though you seemed fine with it yesterday or last week.

 

So - we try to hit it at all levels... try to make his room as allergy-free as possible so he wakes up with as light a load as possible... and go from there - especially in the spring.

[MomWithOCDSon]

Thanks Chemar, Vickie, Kim and Mati's Mom for all the allergy info. I know that, in the past, his allergies could be especially annoying to him when they were in full force, but this is absolutely off the charts, and so sudden. I never would've thought the impact could be this big.

 

I'll take the suggested steps, though. The windows have been wide open (it's a beautiful, sunny, 70-degree day), but I guess I'll shut 'em and run our newer, hepa-filtered AC system nonetheless and see if that helps him at all.

 

This is just so weird . . . .

[thereishope]

Also, wash the sheets, change the pillow cases more often, and either vacuum more or sweep the hardwood. I have to get the curtains down in their bedroom and wash them. I can see the dust when I open them.

[MomWithOCDSon]

Also, wash the sheets, change the pillow cases more often, and either vacuum more or sweep the hardwood. I have to get the curtains down in their bedroom and wash them. I can see the dust when I open them.

There's no question about all of that! I did the "spring cleaning" thing two weeks ago and washed every linen, every curtain, etc., and our vacuum has not one but TWO hepa filters on it! We also make sure that DS's bed is made every day to keep the dust out of his sheets. But despite our best atttempts, with the windows open, I can see a fine layer of dust/pollen on our dark furniture.

 

Time to roll up my sleeves . . . AGAIN!

[Chemar]

remember the allergies are likely just part of the overall problem, adding their influence on his immune system/inflammation

 

it may still be worth doing that strep test, and also checking into other things that may have caused the flare

 

I do hope it stabilizes soon. I know only too well what it does to us when we see our child flaring and feel so helpless. Take care of yourself too!

[kimballot]

Be sure he showers at night before bed - my son hates this now that he is teen because it is not cool... but too bad - he can shower again in the morning if he wants to - we're getting the pollen out of his hair before bed!