Canary and Catch -22

[norcalmom]

Last Tuesday/Wednesday I noticed an up-tic (pun intended) in my son's symptoms. He has one mild infrequent tic and irritability as ongoing symptoms, but on Tuesday he added a new tic and both of the tics he was doing frequently (but not constantly like when in exacerbation) he also had insomnia on Wednesday night - up until after mid night, and tough time falling asleep on Thursday. He woke Friday morning and said he didn't feel well, no fever, he said his throat hurt a little bit(he has never tested positive for strep throat, I don't think it was strep) I kept him out of school mostly because of the lack of sleep. He behaved perfectly fine(except tics) and as soon as he got a couple more hours of sleep he said his throat didn't hurt anymore and wanted to play baseball in the yard. Still ticcing more than usual. He woke at 4:00am vomiting. By Saturday his second tic had gone away. Today only one infrequent tic. Mood great, no sore throat, appetite good, slept fine.

 

This is the fourth time I have seen this happen. I know that I've seen posts about kids who react to strep before a positive throat culture, but are your kids reacting BEFORE they get VIRUSES? It seems like the last few times he's had increased symptoms it was within a few days of getting a cough or cold. And, his pandas symptoms seem to go away before the cough or cold is finished. This is unlike the first two times - when he had major exacerbations - those followed being sick, and they were bad. They didn't last days, but weeks, and tics were constant, violent, and he had host of symptoms along with that.

 

It makes me wonder about the steroid bursts too. I'm afraid to do it, because the first time I tried one I did it when I saw an increase in his pandas symptoms(this was early on, and I thought he was going into a full exacerbation) . Day 3 of the burst it was apparent he was getting a cold so I stopped the steroids. In retrospect, I think he was symptomatic because he was fighting the virus and the steroids made the virus worse, if not the pandas stuff (we didn't see any change in 3 days).

 

He has low IGG, but dr. said it is considered inside normal for some of the published ranges but not others. It seems like it could be a catch-22. The steroids lower his immunity, if there is a virus he is exposed to he'll probably get it, and the virus will cause and increase in pandas stuff.

 

I want to try another steroid burst in the summer when he is healthy and virus season is over, but I'm wondering if maybe kids with low IGG shouldn't do steroid bursts? Alsow wondering if low IGG kids are canaries for viruses?

[wornoutmom]

My son ALWAYS shows symptoms before the physical signs of illness show. It's how we know he's going to be sick. My theory is that the virus/bacteria is already there, already causing havoc, before the immune system kicks into high gear and the resulting physical symptoms show up.

[norcalmom]

My son ALWAYS shows symptoms before the physical signs of illness show. It's how we know he's going to be sick. My theory is that the virus/bacteria is already there, already causing havoc, before the immune system kicks into high gear and the resulting physical symptoms show up.

 

Dear Wornoutmom - Does he have low IGG? Have you done any steroid bursts - how did that go?

kerry

[wornoutmom]

His IGG levels are normal and he passed his serotypes for Prevnar. We did try the steroid burst twice. First time was not on purpose - he had poison ivy. The effect was an unusual calm while on it. Then we tried again 2 weeks ago after a peak (he's really either been in exacerbation since August or in and out since then - not really sure how to call it). This time his OCD symptoms slowly remitted over the 5 days and day 6 was wonderfully symptom free (except for the fact that his facial tic had decidedly increased with the burst) but day 7-16 were just so so but managable. Then the OCD and anxiety and mood swings started up again and 2 days later - boom - sick with sinus infection. Again - I think he is actually more hyper immune and that PANDAS symptoms start to activate with the exposure before the immune system kicks into gear and we "see" the sickness.

[norcalmom]

Do you think burst could have lowered immunity and brought on sinus infection? Are you considering IVIG?

My son is 11, and I am in holding pattern. I almost wish there was another clear exacerbation so I could get the cunningham test done and just do the IVIG... It just hasn't gotten nearly as bad on antibiotics, he often has minor ticking/compulsions/irritability and all of them wax just before getting sick (and he gets the other symptoms like insomnia, bedwetting, obsessions when that happens) its like he is just on the edge all the time.

I am thinking of doing the steroid burst to try to heal him further, but seems like mixed reviews on the steroids -I've read a number of posts where kids are coming down with infections after they have a little remission, and if your child has pitand (which mine does) I am fearful of sending him backward.

Maybe your son was really heathly (immunity wise) when he got steroids for poinson ivy and thats why it worked better.

[wornoutmom]

well I suppose the steroid did leave him open to the sinus infection. My dh developed a double ear infection and then my younger son caught a cold and then ds got hit - but he seems to be prone to sinus infections - seems a slightly deviated septum traps stuff in there. We are finally all set to do IVIG - orders have been written for 1.5 gm dose and we found an infusion center that will do it at cost (around $10,000) but are now in a holding pattern because he seems to be responding to the Biaxin again and we are wondering if we might be able to get somewhere stable again if he remains on this long term vs. on and off again. I supsect he has some type of chronic underlying infection(mycoplasma or something else) that is being helped by this drug but regrows/resurfaces after we take him off of it. He has made enough progress not to consider it a dire emergency, but honestly, I'm not sure what to do at this point. I'm not sure if withholding/waiting on IVIG is the absolute worst thing we could do, or if it's a ton of money and trauma to go through for only temporary benefit. our doc continues to emphasize IVIG is not a cure, but a way to get things cooled down (until the next trigger). We have a lead on a state service that may help pay for treatment and at this point are leaning towards waiting until school is out and to see if we can get this covered. For some reason, IVIG scares the crap out of me.

[norcalmom]

Me too. There is a thread going on IVIG right now at top of board that considers same question - boy age 11, "mild" case. I am very interested in what happens there, and with your son. Very similar to my ds situation. Things are OK (or relative to what they were they are OK) but alot of what we consider "OK" is what you get used to. One person's 80% is another's "he does WHAT?!"

 

There is suppossed to be a study out shortly that follows 60 or so pandas kids over 8 years - Swedo I'm pretty sure. The study ends this month. I hope they don't take forever to publish. I'm really interested in adolecence - what % of kids pandas totally disappears in, and is that # affected by IVIG or antibiotics. My docotor - phychiatrist that diagnosed ds - has over 20pandas kids she has treated. She says will probably resolve itself. She is OCD specialist and professor at Stanford (although not nearly as expert on pandas I would like). She had helped some pateints get IVIG and is totally willing to help us get it done too if thats what we want to do. We have to weigh that against Dr K's warning of "if untreated may cause permament damage".

 

Plese keep us updated!