Panicking a little bit... advice?

[monarchcat]

DS(8) is now at one week on azith 250mg/day. I posted about how I thought the tics were decreasing but the behavior/moods were up and down. Well, the last couple days he's been complaining of a leg tic that is bothering him. He has said it bothers him at school, especially when he is sitting, and it seems to bother him most in the evenings (homework time). Tonight I am really freaked out because he has been crying all evening because he can't stop ticcing and I can see/feel his legs tic/contort. He is absolutely suffering with homework - MAJOR anxiety over stuff that should be really easy for him. Anxiety/crying/ticcing... vicious cycle.

 

This is the first time I've really looked at him and said, "he really is *sick* with PANDAS." It's been a little abstract to me before this, but this is as bad as he's ever been. I'm so worried and I don't know what to do. I've been giving him advil but not consistently. I gave him one tonight when he was bothered by the tics, but an hour or so later and it hasn't seemed to help.

 

I know in the other thread we talked about giving it a full month to see results, but he has NEVER had tics like this. Do I ask his dr to change to another antibiotic? Do I ask for a steroid burst? Do I wait longer? I can't bear to see him get worse as I'm trying so hard to help him get better. He's had tics before, but never leg tics and these REALLY bother him.

 

Thanks for listening to a panicky mother tonight... My pediatrician really doesn't know anything about PANDAS and I feel very alone in all this....

[colleenrn]

I am not sure what to tell you about switching antibiotics at this time. Is this the 1st time he has been on Zithromax and, if not, how did he respond to it previously? There are some (not a lot) of strep strrains that are resistant to Zithromax, so that could be happening, but not likely.

 

Is it possible that he had an initial positive response to Zithromax b/c it is working, then got exposed to strep and is reacting to that? My kids are on Zithromax prophylactically (250mg/day for 11 months), but when exposed closely to strep, do have a big flareup.

 

If he is 8 years old, and if you see that Ibuprofen helps him, I would feel safe in giving him 200mg of ibuprofen, up to 3 times/day.

 

Hang in there!

Colleen

[monarchcat]

He's never been on zithromax before. Before I started the antibiotics he was dong "ok", not in a real exacerbation, but his CaM Kinase II score was 193 and 3 out of the 4 anti-neuronal antibody titers were high. I felt like that was the "proof" I needed to start treatment with antibiotics. He's been a stress ball ever since starting school this year, though (which was a week before starting the meds) and so I feel like anxiety could be contributing, too, but something is definitely going haywire. I just don't know if i need to hang in there longer.

 

He's in the tub now and being goofy, so that's a good sign. I think most of the horrible ticcing was due to homework anxiety. He is really bright and this stuff should be very easy (it's not tough for anyone this early in the year) but he gets so...mentally stuck... that he can't process even the simplest work without panicking.

 

These new tics scare me, though... he's never seemed to notice or be bothered by tics before, but these make him cry. :-(

 

I am not sure what to tell you about switching antibiotics at this time. Is this the 1st time he has been on Zithromax and, if not, how did he respond to it previously? There are some (not a lot) of strep strrains that are resistant to Zithromax, so that could be happening, but not likely.

 

Is it possible that he had an initial positive response to Zithromax b/c it is working, then got exposed to strep and is reacting to that? My kids are on Zithromax prophylactically (250mg/day for 11 months), but when exposed closely to strep, do have a big flareup.

 

If he is 8 years old, and if you see that Ibuprofen helps him, I would feel safe in giving him 200mg of ibuprofen, up to 3 times/day.

 

Hang in there!

Colleen

[acdrobert]

Thomas suffers all kinds of tics but the seem to change on an everyday or every other day basis. Good days are when he has faint vocal tics with some eye blinks. Bad days are when we have both arm and legs flapping tics. (He is 8 too by the way with very similar Cam Kinase scores.) I am hoping your sons tics will at least change so his legs will get some relief. Homwork anxiety definitely makes our tics worse !

 

 

 

 

 

DS(8) is now at one week on azith 250mg/day. I posted about how I thought the tics were decreasing but the behavior/moods were up and down. Well, the last couple days he's been complaining of a leg tic that is bothering him. He has said it bothers him at school, especially when he is sitting, and it seems to bother him most in the evenings (homework time). Tonight I am really freaked out because he has been crying all evening because he can't stop ticcing and I can see/feel his legs tic/contort. He is absolutely suffering with homework - MAJOR anxiety over stuff that should be really easy for him. Anxiety/crying/ticcing... vicious cycle.

 

This is the first time I've really looked at him and said, "he really is *sick* with PANDAS." It's been a little abstract to me before this, but this is as bad as he's ever been. I'm so worried and I don't know what to do. I've been giving him advil but not consistently. I gave him one tonight when he was bothered by the tics, but an hour or so later and it hasn't seemed to help.

 

I know in the other thread we talked about giving it a full month to see results, but he has NEVER had tics like this. Do I ask his dr to change to another antibiotic? Do I ask for a steroid burst? Do I wait longer? I can't bear to see him get worse as I'm trying so hard to help him get better. He's had tics before, but never leg tics and these REALLY bother him.

 

Thanks for listening to a panicky mother tonight... My pediatrician really doesn't know anything about PANDAS and I feel very alone in all this....

[dcmom]

I am so sorry you are going through this.

 

I would hang in there with the meds. Really, in theory, the zithromax should be used to eradicate the strep infection, and then to prevent contracting strep. I know others on the forum use it daily to manage symptoms, though. But, I guess what I am saying is, it doesn't necessarily address the brain inflammation so quickly. I would hang in there and give it thirty days. At that point I would definately consider a steroid burst.

 

Also, try to look at the weekly trend, rather than a daily trend- it will help you keep your sanity. It seems if these kids are tired and/or stressed, they will have a temporary uptick in symptoms. The other thing is school is just loaded with strep. My pandas, and non pandas daughter have already had several kids in their classes out with strep this year. My pandas daughter definately has a temporary increase in symptoms when exposed to strep. Send emails to all classmates and teachers of your child's to alert you if someone has strep. This will help you track what is going on.

 

Homework: I would discuss your child's issues with the teacher. I don't think it is worth stressing him with homework in an exacerbation. School is enough to handle. Possibly he could complete the homework weekly, doing some on the weekend. I did read a book that suggested this type of accomodation for kids with pandas.

 

Good luck and keep us posted...

[bronxmom2]

Don't make him do the homework.

 

My son also panics in the face of work that I know is easy for him. Imagine how it would feel to be mysteriously unable to process work you know you should easily understand. When you're already so anxious anyway. I think homework given by schools is uniquely torturous for PANDAS kids, who often can't write or do simple computations but are still very very bright.

 

I try to find ways for him to "show what he knows" without provoking this panic-- for example I ask him questions about a book he's reading rather than having him fill out the comprehension forms, or play math games. This reassures us both.

 

As far as azith... I am having some strange reaction too. It seems to have made him more emotional.

 

Last year we used Cefdinir and it did not seem to have that affect. But the suggestion seems to that zithromax, like IVIG or steroids, might make things worse as it makes things better?

 

Good luck!

[mama2alex]

I'm not sure what to tell you, but here are a few possibilities that come to mind:

 

- Take him off the antibiotics for a bit, and see if these new symptoms disappear or improve - that will tell you something.

- Talk to a doctor who really knows what they're doing with PANDAS; I've heard doctor Latimer does phone consults, so that might be an option.

- Also, if you can work it out with his teacher, I like bronxmom2's idea about giving him a break on the homework for now - either reduce it or change it to something more manageable for him - then once you get this figured out maybe go back to the regular homework

 

Hope this helps!

[T_Mom]

I am so sorry you are facing this--It is so, so hard.

Re: the leg tics, could this be a form of chorea? The Cam Kinase is so high it is almost in the Sydenham's range, has that been considered?--

 

I do not know if leg tics or cramps can be an antibiotic side-effect, but it certainly is not normal, and I'd check with a neurologist since these are new and sudden. May be well worth a phone consult with Dr.Latimer.

[sf_mom]

I agree with T.Mom and would definitely give Dr. Latimer call for some perspective and possibly a more aggressive treatment based on CaM results.

[monarchcat]

Thanks, guys. I did call Dr. Latimer's office this morning and have a phone consultation set up for Oct 2nd. It's going to be hard to wait, but I'm really excited to have that ahead of us now. The woman I spoke with in the office was so nice.

[T_Mom]

Thanks, guys. I did call Dr. Latimer's office this morning and have a phone consultation set up for Oct 2nd. It's going to be hard to wait, but I'm really excited to have that ahead of us now. The woman I spoke with in the office was so nice.

 

 

Hi--That is great, but if he has this new leg ticcing -- and he is crying it is bothering him, I think he needs to be seen sooner, can a neurologist there see you? What did you find out re: could it be a reaction to antibiotics? ... All the best to you as you sort this out.

[monarchcat]

I was so worried about him today while he was at school, but he came home at 1pm (half day on Wednesdays in our town) and for the first time so far this year said he had a GOOD day! The tics didn't bother him at school, and except for one period of irritability/anger this afternoon, he has been pretty calm and sweet. Homework went much, much smoother (though I still had to coach him through everything to avoid him getting mentally frozen). Leg tic showed itself only once as he got a bit anxious, but he calmed down and it didn't happen again. Hands are ticcing, but not terribly. I gave him an advil at 7am, and another when he got home at 1pm. I think that probably helped quite a bit.

 

I wouldn't force the issue of homework, except that ramps up his anxiety even more. He can't NOT have it done... that would be completely unacceptable to him, but at the same time he suffers doing it. I'm glad today was better. He didn't like doing it, but we got through it without fuss.

 

I think the leg tic was one that he noticed, so once he began focusing on it it got very bad. I believe the advil probably helped minimize that today.

 

You guys are soooo right that I have to look at this weekly, and not day by day. Yesterday scared the crap out of me.... LOL... thanks for being here!

[MMC]

We know what you are going through. Our son (11), has had the same type of tic terrors at night...half a dozen times now, since April. Very scary. He eventually "Passes out" and goes to sleep. Tics will be from head to toe...head jerk, stomach roll, hand tics, leg and foot tics. He can cry and scream for 30 mins to an hour, fighting to get to sleep. All my wife can do is hold him on the bed. All I can do is pray and feel despair like have never felt before...then can't sleep myself. This stuff will wear you out.

 

We have learned to try and head this off by giving him Benadryl early in the evening...about 7:30 to 8:30. This really helps, but if he has a bad night, it still may not prevent it altogether. He is now also on clonadine, and has been on amitriptyline in the past...don't resolve tics, but calm and make sleepy.

 

He has a lot of the tics during the day, in school and certainly get worse in evening with homework. Some days are better than others of course. I am starting to give advil again, after stopping for about a week...found a better flavor he likes. Will give in morn and eve. I think this may have helped, after giving it for 2 weeks straight.

 

He just fell asleep on the couch (9:20pm)...after ticcing and tossing around a bit, but nothing major. He can no longer go to sleep in his bed like normal...he has to watch tv and be distracted. I would give the Benadryl a try if you haven't. Drs say it is safe, no side effects.