Restlessness/PANDAS?

[mom md]

My son Carter was diagnosed with PANDAS in February and is almost 90% improved now on azithromycin. We have been to multiple neurologists to confirm the diagnosis and they all agree. After 8 weeks of antibiotics he is almost perfect at home...no more mood swings, tics are gone, obsessions and anxiety is gone. For some reason though his teacher says she sees no real change at school. At the docotr today I caught a glimpse of I think what she is referring to. Carter was extremelly restless and could not sit still. He showed aome mild hyperactivity and impulse control issues too. After we left the stressful situation he was back to being my "perfect"child again. We even went to a restaurant and he was able to maintain self control. Has anyone seen this after treatment with antibiotics...when the child is in a "stressful" situation some issues come back but even that same day in an unstressful environment the restlessness is gone? Our plan is to stay on antibiotics for 4-6 months and do IVIG next time he has a bad flare.

Thanks,

Mommd

[T_Mom]

After 8 weeks of antibiotics he is almost perfect at home...no more mood swings, tics are gone, obsessions and anxiety is gone. For some reason though his teacher says she sees no real change at school.

That is great news MomMD!!! Yey! I know you are relieved there has been some respite.

 

Is your son on half strength (preventative) Azithro. or therapeutic strength?

You said he was now at 90%...what remains other than the restlessness?

Did the school issues ever include the aforementioned moods, tics, obsessions and anxiety? Does the teacher see a difference in his school work, writing?

 

Our daughter was at 90% after 3 months on full strength Amoxicillan--a steroid burst put her at 100% again, then the teacher noticed. I do think I see a tendency to have some break-through ripples of "stuff" when she is really tired or stressed.

Otherwise, she is doing really well thankfully--I am happy for your break through as well,

T.Mom

[ShaesMom]

T.Mom,

 

OUr dd just started PenVK 2 days ago. Her separation anxiety has been down since she finished a 10 day round of amoxicillin but I've noticed in the last week that her raging is getting worse. Yesterday I heard her say "mommy doesn't like me" when I went to her room to get her pj's and I believe the day before that she said "mommy is mean" because I told her she had to wait until after dinner for a snack. We don't allow that kind of talk in our home (she ia almost 7) and I'm concerned what other thoughts are now in her head.

 

Have you done IVIG or are you managing her care with abx? Do you try other abx before the amoxicillin?

 

Sam

[mom md]

Carter is on full strentgh azithromycin. He has an occasional mood swing but nothing like before. It is hard to know too what is normal and what is not. He continies to have some tics but they are subtle. Carter's tics were more chorea like with large arm movements. His are now slight shoulder rolls. I am sure I am the only one who notices. His MRI was normal and his ASO has dropped from 1750 to 950. His teacher has frankly not been too much help. His school work has not suffered at all and his handwriting has improved. Getting info from her is like pulling teeth. I am interested in trying the steroid burst just to see what it would do. I think it gives you an idea if IVIG would be helpful. I spoke to Dr. K and he said when a kid gets to the point where the tics are present they usually need IVIG to be cured.

After 8 weeks of antibiotics he is almost perfect at home...no more mood swings, tics are gone, obsessions and anxiety is gone. For some reason though his teacher says she sees no real change at school.

That is great news MomMD!!! Yey! I know you are relieved there has been some respite.

 

Is your son on half strength (preventative) Azithro. or therapeutic strength?

You said he was now at 90%...what remains other than the restlessness?

Did the school issues ever include the aforementioned moods, tics, obsessions and anxiety? Does the teacher see a difference in his school work, writing?

 

Our daughter was at 90% after 3 months on full strength Amoxicillan--a steroid burst put her at 100% again, then the teacher noticed. I do think I see a tendency to have some break-through ripples of "stuff" when she is really tired or stressed.

Otherwise, she is doing really well thankfully--I am happy for your break through as well,

T.Mom

[mom md]

After talking to many of the pediatricians out there there are a lot of strep that is resistant to penicillin. I would try to switch to omnicef or azithromycin. We noticed improvement within 48 hours on azithromycin that we did not see on penicillin. We have not done IVIG but we are considering it. I want to be 100% sure this is PANDAS before I go there. We saw a new neurologist yesterday and he wanted to rule out a few other things like metal metabolism issues and other autoimmune diseases. Carter had a normal MRI and his ASO titer has fallen to 950 from 1750. I have spoken to experts and apparently once they get to the point of having tics they are harder to treat with antibiotics alone. My guess is we will be doing IVIG this summer or fall if this continues.

Claire

T.Mom,

 

OUr dd just started PenVK 2 days ago. Her separation anxiety has been down since she finished a 10 day round of amoxicillin but I've noticed in the last week that her raging is getting worse. Yesterday I heard her say "mommy doesn't like me" when I went to her room to get her pj's and I believe the day before that she said "mommy is mean" because I told her she had to wait until after dinner for a snack. We don't allow that kind of talk in our home (she ia almost 7) and I'm concerned what other thoughts are now in her head.

 

Have you done IVIG or are you managing her care with abx? Do you try other abx before the amoxicillin?

 

Sam

[lismom]

After talking to many of the pediatricians out there there are a lot of strep that is resistant to penicillin. I would try to switch to omnicef or azithromycin. We noticed improvement within 48 hours on azithromycin that we did not see on penicillin. We have not done IVIG but we are considering it. I want to be 100% sure this is PANDAS before I go there. We saw a new neurologist yesterday and he wanted to rule out a few other things like metal metabolism issues and other autoimmune diseases. Carter had a normal MRI and his ASO titer has fallen to 950 from 1750. I have spoken to experts and apparently once they get to the point of having tics they are harder to treat with antibiotics alone. My guess is we will be doing IVIG this summer or fall if this continues.

Claire

T.Mom,

 

OUr dd just started PenVK 2 days ago. Her separation anxiety has been down since she finished a 10 day round of amoxicillin but I've noticed in the last week that her raging is getting worse. Yesterday I heard her say "mommy doesn't like me" when I went to her room to get her pj's and I believe the day before that she said "mommy is mean" because I told her she had to wait until after dinner for a snack. We don't allow that kind of talk in our home (she ia almost 7) and I'm concerned what other thoughts are now in her head.

 

Have you done IVIG or are you managing her care with abx? Do you try other abx before the amoxicillin?

 

Sam

 

Mom Md, I read your comment about speaking to experts about the point of having tics and it being harder to treat with abx. Can you elaborate. My son is having a hard time jump starting his immune system on zith. It starts to improve then we fall back a few steps. Twice this has happened. He is now tired and ticcing again. We are going into week 3 of full strength. Is there anyone I could have my pediatrician talk to you know? Any help would be appreciated, getting desperate. Kathy

[EAMom]

Hi Claire,

 

I'm glad your son is doing better!

 

Re stress: Yes, we've experienced this. One theory...stress (epinephrine?) can temporarily disrupt the blood brain barrier. Here's an article http://www.thefreelibrary.com/Stress+may+w...rier-a018976941 So perhaps the stress opens up the blood brain barrier allowing the antibodies or toxins (or whatever) to enter the brain, causing symptoms. Of course it can turn into a viscious cycle, since PANDAS causes the child to feel more stress (anxiety, tics, adhd, depression, anger etc.) thus keeping the bbb more chronically open.

 

It makes total sense that my dd did so well last summer after we discovered Azith/advil...in addition to the meds getting the strep and inflammation, summer tends (hopefully) to be a low stress time for kids (no school) and also (yay!) less exposure to strep (and other illnesses).

 

So, one of my theories is that, as much as possible, keeping these PANDAS kids in a low stress environment is really helpful to their healing.

 

Also, have you seen these seats? http://www.amazon.com/Isokinetics-Exercise...5094&sr=8-2 They can be good for kids that "need to wiggle". One 1st grade teacher in dd's school has almost her whole class using them!

[EAMom]

Kathy,

what dose of Azith are you using (and how much does your son weigh?). Also, are you doing Ibuprofen (advil)?

[T_Mom]

Hi Sam--

No, we have never tried any other antibiotic other than Amoxicillan.

 

Our experience is that my daughter had a very bad episode (sudden severe OCD) last summer. She was so bad that a doctor suggested a steroid burst, we did that and at the same time tried Amoxicillan due to sinusitis that showed up on the MRI, also low zoloft from a psych. She suddenly recovered.

 

Then, in the fall our daughter (who typically never gets sick) had 3 episodes of symptoms of OCD and mild tics coupled with colds, each time we put her on 10 days of Amoxicillan...(only about 10 days inbetween times of getting a cold though)...Until December, when she got a cold with a high temp. and the OCD symptoms came back full force and she was badly affected. This time 10 days of full Amoxicillan did not clear the OCD symptoms. The doctor we were seeing at the time put her then on half-strength Amoxicillan and she went down-hill fast -- stopped speaking due to OCD, etc.

 

That doctor would not provide Azithromycin--So we gave her full strength Amoxicillan again and within 4 days she was able to go to school. We continued full strength Amoxicillan for about 2 months (Jan-Feb) and she was 90% herself again, every week there was noticeable improvement--though not 100%.

That was when we tried the steroid burst again, and she came back 100%. We have never done IVIG but I can see us needing to if this keeps coming back. I pray it does not come back.

 

I believe inflammation has been the culprit -- causing the OCD and tics. Keeping her on full strength Amoxicillan for a few months now really seems to have helped, and when she plateaued a steroid burst made a huge difference. This past month I feel like I am getting to know my 11 year old daughter who has been away much of the year.

Blessings to us all--as we persevere.

T.Mom

[T_Mom]

Re stress: Yes, we've experienced this. One theory...stress (epinephrine?) can temporarily disrupt the blood brain barrier. Here's an article http://www.thefreelibrary.com/Stress+may+w...rier-a018976941 So perhaps the stress opens up the blood brain barrier allowing the antibodies or toxins (or whatever) to enter the brain, causing symptoms. Of course it can turn into a viscious cycle, since PANDAS causes the child to feel more stress (anxiety, tics, adhd, depression, anger etc.) thus keeping the bbb more chronically open.

 

 

Oh my gosh EAMom! this is a really scary thought isn't it! Fascinating.

 

I totally agree with you that stress or fatigue makes a HUGE difference for these kids as their brains heal...they need to rest. There have been mornings when (if my daughter was up too late the night before) I have taken her to school late, just to ensure extra sleep. We cut back on expectations and activities -- I guess most families do after a major illness hits, we all needed a break.

Best--

T.

[mom md]

We have one of those seats already! It is a great device. I appreciate your response and the blood brain barrier thing makes sense. I spoke to Dr. K and that is exactly what he said. I am thinking our next course is to try the steroid burst and move toward IVIG. I think this is the only true cure. I know the summer will be better and I am trying to deicide if I should stick with my docotr here who wants to wait to see a big flare on antibiotics (we see little ones every day) or if I should just move towards IVIG. The only benefit to waiting is this neurologist here might be able to get it paid for. I am getting to think though that it is worth the money to be done with this and close this chapter!

Hi Claire,

 

I'm glad your son is doing better!

 

Re stress: Yes, we've experienced this. One theory...stress (epinephrine?) can temporarily disrupt the blood brain barrier. Here's an article http://www.thefreelibrary.com/Stress+may+w...rier-a018976941 So perhaps the stress opens up the blood brain barrier allowing the antibodies or toxins (or whatever) to enter the brain, causing symptoms. Of course it can turn into a viscious cycle, since PANDAS causes the child to feel more stress (anxiety, tics, adhd, depression, anger etc.) thus keeping the bbb more chronically open.

 

It makes total sense that my dd did so well last summer after we discovered Azith/advil...in addition to the meds getting the strep and inflammation, summer tends (hopefully) to be a low stress time for kids (no school) and also (yay!) less exposure to strep (and other illnesses).

 

So, one of my theories is that, as much as possible, keeping these PANDAS kids in a low stress environment is really helpful to their healing.

 

Also, have you seen these seats? http://www.amazon.com/Isokinetics-Exercise...5094&sr=8-2 They can be good for kids that "need to wiggle". One 1st grade teacher in dd's school has almost her whole class using them!

[mom md]

I totally agree with rest but you can't keep an 8 year old down and I feel the more I keep him out of sports, etc, the more "abnormal" he feels. I can't continue to live in a bubble and keep fearing minor changes in schedule, etc. I think I am mentally moving towards IVIG. I spoke to James Leckman at Yale and I agree on his points that antibiotics are not the way to treat an autoimmune disease. The antibodies are already there and will continue to cause a problem until they are gone. Has you considered IVIG?

 

Re stress: Yes, we've experienced this. One theory...stress (epinephrine?) can temporarily disrupt the blood brain barrier. Here's an article http://www.thefreelibrary.com/Stress+may+w...rier-a018976941 So perhaps the stress opens up the blood brain barrier allowing the antibodies or toxins (or whatever) to enter the brain, causing symptoms. Of course it can turn into a viscious cycle, since PANDAS causes the child to feel more stress (anxiety, tics, adhd, depression, anger etc.) thus keeping the bbb more chronically open.

 

 

Oh my gosh EAMom! this is a really scary thought isn't it! Fascinating.

 

I totally agree with you that stress or fatigue makes a HUGE difference for these kids as their brains heal...they need to rest. There have been mornings when (if my daughter was up too late the night before) I have taken her to school late, just to ensure extra sleep. We cut back on expectations and activities -- I guess most families do after a major illness hits, we all needed a break.

Best--

T.

[T_Mom]

I totally agree with rest but you can't keep an 8 year old down and I feel the more I keep him out of sports, etc, the more "abnormal" he feels. I can't continue to live in a bubble and keep fearing minor changes in schedule, etc. I think I am mentally moving towards IVIG. I spoke to James Leckman at Yale and I agree on his points that antibiotics are not the way to treat an autoimmune disease. The antibodies are already there and will continue to cause a problem until they are gone. Has you considered IVIG?

 

HI Claire--

Yes, we have considered IVIG, we are ready to do something more if there is another exacerbation.

 

I so agree with you that you can't keep an 8 year old down:) !! nor an 11 year old! (Soccer game this morning, etc) --perhaps instead of "rest" the word should be "stress" we avoid? -- though thankfully she is now able to deal with things so much better.

 

At the start of this thread you had noted that your dear son was "diagnosed with PANDAS in February and is almost 90% improved now on azithromycin. and that your "plan is to stay on antibiotics for 4-6 months and do IVIG next time he has a bad flare."

 

Is he still at 90% and have any of the neurologists suggested a steroid burst yet to bring him back to 100% -- if even for a time?

Best to you --

T.

[dcmom]

Mom MD- I am following your story- please continue to update us regarding your research on IVIG.

 

My dd is 5, and had her first pandas episode starting in mid January this year. She is also at least 90% improved after months of antibiotics. She is not 100%. She is having her tonsils out this June (my pandas drs encourage this). I am seriously considering IVIG if she has another flare....

[michele]

How are you finding neuros who believe in PANDAS? I have been to many and none want to treat it as PANDAS. They will diagnose Tourettes, ADHD, Aspergers, Mood Disorders but they don't get PANDAS. I have been to over four and none of them think it makes sense. They certainly won't give antibiotics because they don't see the connection to why it would work. We live in a small city and I have traveled two hours to Cleveland and still not got any Dr's who want to treat PANDAS. I did find a rheum who would give antibiotics long term but he is now doing research only so I had to fall back on the ped for antibiotics who really says this is out of her realm. We are using Omnicef 300 mgs day what are you using? I also can't get the azith.

 

I have talked to Dr. K and Dr. leckman and Diana P. myself. We have seen a DAN! We have went to Florida and been diagnosed with PANDAS by T. Murphy. Now we are being treated by a local child psychiatrist. Can repeat exposure to episodes cause Aspergers? It seems to get worse with time. Maybe it is the blood brain barrier. Things do get worse with stress! The meds are helping him alot finally. I don't know if he will ever be cured though. I wonder if we should try the steroids Dr. K suggested? I wonder if we should go to Dr. K for the IVIG or who else we could get to do it? How can this be covered by insurance? So many questions. We have already been dealing with this for 6 years. It doesnot get better.

 

We have one of those seats already! It is a great device. I appreciate your response and the blood brain barrier thing makes sense. I spoke to Dr. K and that is exactly what he said. I am thinking our next course is to try the steroid burst and move toward IVIG. I think this is the only true cure. I know the summer will be better and I am trying to deicide if I should stick with my docotr here who wants to wait to see a big flare on antibiotics (we see little ones every day) or if I should just move towards IVIG. The only benefit to waiting is this neurologist here might be able to get it paid for. I am getting to think though that it is worth the money to be done with this and close this chapter!

Hi Claire,

 

I'm glad your son is doing better!

 

Re stress: Yes, we've experienced this. One theory...stress (epinephrine?) can temporarily disrupt the blood brain barrier. Here's an article http://www.thefreelibrary.com/Stress+may+w...rier-a018976941 So perhaps the stress opens up the blood brain barrier allowing the antibodies or toxins (or whatever) to enter the brain, causing symptoms. Of course it can turn into a viscious cycle, since PANDAS causes the child to feel more stress (anxiety, tics, adhd, depression, anger etc.) thus keeping the bbb more chronically open.

 

It makes total sense that my dd did so well last summer after we discovered Azith/advil...in addition to the meds getting the strep and inflammation, summer tends (hopefully) to be a low stress time for kids (no school) and also (yay!) less exposure to strep (and other illnesses).

 

So, one of my theories is that, as much as possible, keeping these PANDAS kids in a low stress environment is really helpful to their healing.

 

Also, have you seen these seats? http://www.amazon.com/Isokinetics-Exercise...5094&sr=8-2 They can be good for kids that "need to wiggle". One 1st grade teacher in dd's school has almost her whole class using them!