Can someone give me some advise?

[cub]

We are on day 7.5 of antibiotics, since day 2.5 he has had significant reduction in tics, as in here and there vs major ticking for 2 hours every night where he can only just lay in a recliner with all limbs and his body constantly moving, and he had also been starting to have them noticeably during the day at school. These are so exhausting. He did have some last night but the episode was much shorter. Touch has been another trigger and I have given him several hugs and no tics. He has had some tremors but these can be a manifestation of his dysautonomia, adrenaline dumps or surges. He also has some major anxiety but comes and goes with less frequency over the last 10 months since he has been on Clonidine, but when it is there, OH Boy! Last night there was some increase in his vocal tics. It was raining out and he felt agitated. Weather also can affect dysautonomia but with all the recent info on being diagnosed with tourettes last month I am not sure what to think of symptoms. Dr. put him on antibiotics for a sinus infection but I was also talking to her about this panda/pans possibility and she is open to it, took blood work last week to check titres and other inflammatory markers. All blood work and titres have come back fine. Now that the titres have come back fine I don't know if she will look further into this and I don't know what if anything to expect from 1 week of antibiotics. Thursday morning will be his last dose of antibiotic and I won't be able to talk to the Dr. until Monday. Should I try to talk her into extending the antibiotics or should I just let it go and see what happens when he goes off of them? We are just trying to determine if the tics showing up when his dysautonomia flared was coincidence or tourettes that existed but showed up because of the insult to his body from all his other symptoms or if this might be PANDAS/PANS as a result of some infection or virus that caused the dysautonomia. I do know that over a couple of months he was a way different kid, ticking and super anxious and depressed. That was 2 years ago and my son is 17.

Edited September 26, 2012 by cub

[kos_mom]

Just my two cents. I'd try to get the abx extended--my DD has never had a sinus infection that cleared up within a month, let alone 10 days. This would tide you over for the other step I'd take, consultation. I'd call today to get a phone consult with either Dr. T or Dr. K; I don't know about Dr. K, but it's fairly easy to get a timely consult with Dr. T, and he is very open to patients working with other doctors. (Not sure about D. K--I emailed him once saying DD had far off appt with Dr. L but I wanted some information in the meantime, and he wrote back saying he wouldn't offer opinions on someone who had another doctor.) One of these doctos could make some transition recommendation for medication while you'd await results of tests he'd recommend.

 

Onset of tourettes at 15 I think is pushing the Tourette's boundaries a bit. Tics plus very significant anxiety at that age would make me suspicious of PANDAS/PANS. Not sure what tests your doctor ordered--were they just limited to strep or did they look at other things like myco p and lymes? Sinus infections would be another marker for possible PANDAS/PANS. The dysautonomia is interesting--as you point out this can come from a virus. Some of those viruses like EBV and cox sackie are known triggers for PANDAS/PANS--I am sure both Dr. K and Dr. T would suggest testing for these.

 

I absolutely do not think it is off base to investigate the possibility that a virus triggred both dysautonomia and PANS. As a side note, my DD, 19, recently dx'ed PANDAS/PANS but with symptoms going back at least three years if not seven or so, has been told by her cardiologist that she has neurogenic orthostatic hypotension--she has fainting episodes and is incredibly heat intolerant. I can find very little on this but it looks like a form of dysautonomia that may be related to her PANDAS/PANS.

[Missmom]

Agree with ko's mom, extend the abx for as long as you can. If all they checked for was strep titers and your sons trigger was a sinus infection it would make sense that the titers were not elevated. You will need to fight for your son. It is not easy and it may take some time but do a lot of research on this site and others and print out whatever necessary to take with you to your appt. or consult. There is a list of treating doctors on this site and others that may help you find a knowledgable doctor close by. Good luck.

[peglem]

Well, I'm of a little bit different opinion-coming from the perspective of having had a huge deal of trouble getting treatment for my child w/o laboratory evidence... Doctor's often feel they need some kind of justification for treatment and in the absence of labs to back her up, the doc may be hesitant to extend the abx. But if you can say you observed improvements on abx and worsening when off, that may give the doc the justification she needs to rx a longer trial of abx. So you may want to take that one step back in order to confidently move forward.

[cub]

Last night was horrible with tics but he was so tired all evening he could barely stay awake. In fact after the tics quieted down he fell asleep in the chair and stayed there all night.

 

He is still stuffy and his cheeks are tender so I did call and requested she extend the antibiotic. We'll see what she says, she might not. Thanks for all the help! Really, you just don't know where to turn. I don't know if he has this but I know you all understand having a chronically sick child with few answers.

 

 

Update, Well, she refused to extend the antibiotics ;(

His strep titres were 160 with a normal range of 1-200.

Edited September 27, 2012 by cub

[AmySLP]

Last night was horrible with tics but he was so tired all evening he could barely stay awake. In fact after the tics quieted down he fell asleep in the chair and stayed there all night.

 

He is still stuffy and his cheeks are tender so I did call and requested she extend the antibiotic. We'll see what she says, she might not. Thanks for all the help! Really, you just don't know where to turn. I don't know if he has this but I know you all understand having a chronically sick child with few answers.

 

 

Update, Well, she refused to extend the antibiotics ;(

His strep titres were 160 with a normal range of 1-200.

 

 

Read the "helpful info for pandas at the top of this forum. Every child does not rise and titers and this was never needed for dx. I'm pretty sure there is an explanation there in one of the articles at the top of the forum. Many docs and I believe sue Swedo herself states in her work, that a titer rise is not necessary. Print those and highlight those areas and give to your doc.

[tpotter]

Has your dr. checked for staph, MRSA or anything else? Strep is not the only thing with PANS, and in fact with sinuses, it is frequently not strep.

 

I would also take the next step, and that is to get an appointment with a PANS specialist. They are listed at the top of this thread (PM me for several names, as well.) Appointments take a long time to get (months in some cases,) so I would get the appointments now...you can always cancel. It's great that your doc is willing to treat, but it doesn't sound like s/he has the understanding of what it takes to treat this disorder (which is not slighting the doc, but rather just an observation based on experience.) Just like if your child had seizures, diabetes, etc, you would expect to see a specialist, so too should you do that with a PANS specialist.)

 

Good luck.

[cub]

No she hasn't really checked him for anything other than the typical blood panels and the aso. When she said she was going to look into it, I was hoping she would look for more but the ASO was the only titre on there other than a couple of the regular things they order, blood counts, liver enzymes, etc...

 

I'm not really hopeful now. She is pretty good when I ask her for stuff but will only go so far. She is much too busy treating viruses and colds, I think. I stay with her because my son has such a complicated history and she I feel she does care. But some Drs. are so locked into having to see scientific proof and the good Drs do get too many patients, but that is another story. She admitted right out when my son was diagnosed with tourettes she wouldn't have ever thought of that (or tics). I know she was thinking anxiety. Thing is his presentation is so atypical, so maybe because of that she might look into other things. She ordered test for pheochromocytoma when I asked before he was diagnosed with Dysautonomia, because when you look symptoms are similiar. So I can't discount how much help I can get from her, I think I just have the be the one with the specific requests and then see what happens.