Not sure if this is Pandas

[lss]

Last week my son was tic tree, still had some anxiety, night time dreams not so bad, overall a pretty good week, then he caught a cold. His tics are horrible again. Is this due to the cold? Does anyone else see symptoms getting worse when the kids get sick with other things than strep or are Panda symptoms only noticable when or after strep?

[Worried_Dad]

We've definitely seen our son's symptoms worsen significantly when any kind of viral or bacterial infection made its way through our household. I know others on this forum have posted similar experiences as well. Unfortunately, seems like anything that stimulates these kids' immune systems causes big problems!

 

 

Last week my son was tic tree, still had some anxiety, night time dreams not so bad, overall a pretty good week, then he caught a cold. His tics are horrible again. Is this due to the cold? Does anyone else see symptoms getting worse when the kids get sick with other things than strep or are Panda symptoms only noticable when or after strep?

[michele]

We have definately seen my son's symptoms get worse with illness especially with fevers. What I am wondering is why if they are on an antibiotic they are still getting these symptoms after illness? Are others here seeing the worsening of symptoms while on antibiotics daily? I wonder if a different antibiotic is needed, or possibly is the antibiotic not helping at all. Are others wondering what would happen if the antibiotics were stopped? Do they make a difference? Should we up the amount of antibiotics daily for a few weeks during these episodes? I am getting worried we are also seeing the tics getting much worse for a period of time(now six weeks) after illness. Is there being damage done to the brain? Is something crossing the brain/blood barrier? Why can't we get more solid answers on how to help these kids from the medical community.

 

We've definitely seen our son's symptoms worsen significantly when any kind of viral or bacterial infection made its way through our household. I know others on this forum have posted similar experiences as well. Unfortunately, seems like anything that stimulates these kids' immune systems causes big problems!

 

 

Last week my son was tic tree, still had some anxiety, night time dreams not so bad, overall a pretty good week, then he caught a cold. His tics are horrible again. Is this due to the cold? Does anyone else see symptoms getting worse when the kids get sick with other things than strep or are Panda symptoms only noticable when or after strep?

[lss]

We've definitely seen our son's symptoms worsen significantly when any kind of viral or bacterial infection made its way through our household. I know others on this forum have posted similar experiences as well. Unfortunately, seems like anything that stimulates these kids' immune systems causes big problems!

 

 

Last week my son was tic tree, still had some anxiety, night time dreams not so bad, overall a pretty good week, then he caught a cold. His tics are horrible again. Is this due to the cold? Does anyone else see symptoms getting worse when the kids get sick with other things than strep or are Panda symptoms only noticable when or after strep?

 

 

Worried Dad,

 

We were just in the process of having the steriod burst done, per Dr. K's instructions when he caught this cold. Does it make any difference, and did you see more or less of the tics during the steriod burst?

 

Linda

[michele]

Iss,

Has your Dr. been consulting with Dr. K or did you see him or talk with him personally? What kind of a Dr. did you find that would consult with Dr. K? How long have you been dealing with this and what other treatments have you tried? Just curious you seem to have made a lot of progress in a short time. How is your child doing now?

 

We've definitely seen our son's symptoms worsen significantly when any kind of viral or bacterial infection made its way through our household. I know others on this forum have posted similar experiences as well. Unfortunately, seems like anything that stimulates these kids' immune systems causes big problems!

 

 

Last week my son was tic tree, still had some anxiety, night time dreams not so bad, overall a pretty good week, then he caught a cold. His tics are horrible again. Is this due to the cold? Does anyone else see symptoms getting worse when the kids get sick with other things than strep or are Panda symptoms only noticable when or after strep?

 

 

Worried Dad,

 

We were just in the process of having the steriod burst done, per Dr. K's instructions when he caught this cold. Does it make any difference, and did you see more or less of the tics during the steriod burst?

 

Linda

[michele]

delete

[lss]

Michele,

 

My son has had the vocal tics since last year, after he received the varicella vaccine in June of 07. We moved from Florida to the Dallas area after consulting with a neurologist who is associated with Miamia Childrens Hospital who in June suspected Pandas. He told us he thought it might be just stress from the move, but also added that we should have his ASO-Titers checked in Dallas if after a while it didn't stop. Long story short, I asked the new ped dr. in Dallas if he thought it was Tourettes, he said no, but never mentioned Pandas, I researched and found Pandas, so when I asked the ped dr. again, he said yes, he thought it was Pandas, referred me to a neurologist who wanted to put my son on anti-psychotic drugs. We no longer see him, as I will NEVER put my son on these drugs. I researched, talked to drs at Duke, University of Florida, so forth. Duke would like for us to come during the summer. We had a phone consult with Dr. K and I gave the information to my NEW ped doctor who is wonderful and is not afraid to think outside the box, she spoke with Dr. K as well as emailed him. She would rather have him on antibiotics than anti-phsychotic drugs. We also were fortunate in finding another child in our school who has a tic, I spoke with the parents who gave me the name of drs at Duke, and a psychiatrist here in Dallas, who prescribed Clonodine (high blood pressure meds that work for tics) as well as Tenex. He did not do well with the Clonodine, but seemed to do better on the Tenex, however, I don't like to use drugs and would rather find a solution than apply a band-aide. Our doctor ordered all the blood work that Dr. K recommended as well as a MRI of the brain, which we are doing tomorrow. I also took him to see a DAN doctor who also happens to be a Allergy doctor (my son also has asthma) just to make sure he didn't have heavy metals, or other toxins. We are waiting for results as well as scheduling allergy testing.

 

If Dr. K is correct, and the IVIG needs to be done before the age of 10, that is where we will be before he turns 10 next year, but in the mean time I will continue to research and possibly see Dr. Murphy in Florida, just to make sure we are doing the right thing. If I could, I would schedule to see Dr. Swedo. As all parents here, I would go to the ends of the earth to find something to cure or at least help with Pandas. By the way, I posted the names of the doctors here in Texas that we have seen in a post titled "Doctors"

 

Linda

 

Iss,

Has your Dr. been consulting with Dr. K or did you see him or talk with him personally? What kind of a Dr. did you find that would consult with Dr. K? How long have you been dealing with this and what other treatments have you tried? Just curious you seem to have made a lot of progress in a short time. How is your child doing now?

 

We've definitely seen our son's symptoms worsen significantly when any kind of viral or bacterial infection made its way through our household. I know others on this forum have posted similar experiences as well. Unfortunately, seems like anything that stimulates these kids' immune systems causes big problems!

 

 

Last week my son was tic tree, still had some anxiety, night time dreams not so bad, overall a pretty good week, then he caught a cold. His tics are horrible again. Is this due to the cold? Does anyone else see symptoms getting worse when the kids get sick with other things than strep or are Panda symptoms only noticable when or after strep?

 

 

Worried Dad,

 

We were just in the process of having the steriod burst done, per Dr. K's instructions when he caught this cold. Does it make any difference, and did you see more or less of the tics during the steriod burst?

 

Linda

[Worried_Dad]

Hi, Linda:

 

I'm afraid that our steroid burst results were tainted somewhat, because our local psychiatrist had just prescribed a couple of psych meds (ativan, zyprexa) that made everything worse right before we started the prednisone. And even though twitching / tics were one of the most severe of our son's original symptoms in June of 2007, we had not been seeing much of that with this latest symptom explosion.

 

So - for what it's worth - here's what we saw. The main symptoms before starting the burst were OCD, emotional lability, anorexia, separation anxiety. For 4-5 days during the prednisone, all of these symptoms improved dramatically. We did not notice a change (increase or decrease) in the tics, but they were minor at that time compared to the other stuff.

 

After those 4-5 great days, things steadily went downhill again (but we were still on the psych meds). We were getting pretty desperate and frightened about how we'd even manage the trip to Chicago for IVIG. Dr. K warned us via e-mail that he'd seen psych meds like these (ativan, neuroleptics like zyprexa and haldol) put PANDAS kids "over the edge" and he advised us to taper off these meds before IVIG. We did that. Within 2 days of discontinuing the meds, our son's symptom's improved dramatically again, especially the scariest stuff: the rages, the hour-long crying jags, the suicidal talk completely vanished, and he stopped pacing non-stop all day long. What a relief!!!

 

So - unfortunately - the effect of the psych meds really makes it hard for us to assess the full effect of the prednisone. What we can say with confidence is that, for our son, the steroid burst made his symptoms much milder for a short period of time and we did not see an increase in tics / twitching. If we had not been on the psych meds, we believe that the steroid burst improvement would have lasted longer (but that's just a guess).

 

Hope that helps. Wish we had better, more clear-cut info to share!

 

 

Worried Dad,

 

We were just in the process of having the steriod burst done, per Dr. K's instructions when he caught this cold. Does it make any difference, and did you see more or less of the tics during the steriod burst?

 

Linda

[lss]

Hi, Linda:

 

I'm afraid that our steroid burst results were tainted somewhat, because our local psychiatrist had just prescribed a couple of psych meds (ativan, zyprexa) that made everything worse right before we started the prednisone. And even though twitching / tics were one of the most severe of our son's original symptoms in June of 2007, we had not been seeing much of that with this latest symptom explosion.

 

So - for what it's worth - here's what we saw. The main symptoms before starting the burst were OCD, emotional lability, anorexia, separation anxiety. For 4-5 days during the prednisone, all of these symptoms improved dramatically. We did not notice a change (increase or decrease) in the tics, but they were minor at that time compared to the other stuff.

 

After those 4-5 great days, things steadily went downhill again (but we were still on the psych meds). We were getting pretty desperate and frightened about how we'd even manage the trip to Chicago for IVIG. Dr. K warned us via e-mail that he'd seen psych meds like these (ativan, neuroleptics like zyprexa and haldol) put PANDAS kids "over the edge" and he advised us to taper off these meds before IVIG. We did that. Within 2 days of discontinuing the meds, our son's symptom's improved dramatically again, especially the scariest stuff: the rages, the hour-long crying jags, the suicidal talk completely vanished, and he stopped pacing non-stop all day long. What a relief!!!

 

Worried Dad,

 

I couldn't agree with you more. Soooo glad to hear your son is doing better. My concern with the prednison is that one of the times that my son had strep, he also got pneumonia and they gave him a steriod inhaler to use. This made his tics worse! Also, my son doesn't seem to have some of the other symptoms that your son and other kids on this forum have. I know no 2 people are alike and so therefore some symptoms would differ. My son has had the dilated eyes, the terrible nightmares, where he actually gets out of bed, hits himself, talks about thing that I don't understand, his writing has gotten worse, doesn't like to sleep by himself and of course his vocal tics. During his second strep infection in March he did have motor tics and that was the only time he had them. The only drugs that we tried for the tics were Clonodine and Tenex which are high blood pressure meds given to him to try by a psychiatrist, but only for a few days. The Conodine made him very hyper, the Tenex seemed to work, but I didn't really give it a big chance, stopped after only 3 days, due to the fact the Dr. K spoke with our new ped dr here and she ordered all the blood work he needed and also a MRI. So now I wait to hear from her and then possibly start the burst. If we only had a crystal ball to look into our kids future, wouldn't that be grand.

 

So - unfortunately - the effect of the psych meds really makes it hard for us to assess the full effect of the prednisone. What we can say with confidence is that, for our son, the steroid burst made his symptoms much milder for a short period of time and we did not see an increase in tics / twitching. If we had not been on the psych meds, we believe that the steroid burst improvement would have lasted longer (but that's just a guess).

 

Hope that helps. Wish we had better, more clear-cut info to share!

 

 

Worried Dad,

 

We were just in the process of having the steriod burst done, per Dr. K's instructions when he caught this cold. Does it make any difference, and did you see more or less of the tics during the steriod burst?

 

Linda