Recent diagnosis, have some questions

[ziva]

Hi~I am pretty new to the PANDAS, and have a few questions.

 

Here's the scoop on my son so far....

 

My DS7 was recently diagnosed in Jan. with PANDAS.

His first episode started right when he got sick with strep for the fist time. Hallucinating, hearing things, and extreme anxiety (besides the "normal" strep symptoms..sore throat, vomiting, fever etc.). The Hallucinations stopped withing 24hrs of starting abx, but he continued to hear things (loud voices yelling in his ears) and have the anxiety...mostly at night. This lasted for about 2-3 weeks, then he returned to normal.

He got strep again three weeks after that. And the 2nd episode was almost exactly the same as the first, in severety and duration.

 

My pediatrician (who diagnosed PANDAS right away) said that this would be just how he would be with strep, but couldn't tell me if it would be just when he was sick, these same symptoms, or how it would really play out. We also started him on an anti-inflamitory diet 3 weeks ago.

 

I am now starting to see some severe anxiety/anger at about 5pm for the past few nights. He just gets really scared/sad/angry crying and says he just doesn't know what to do, or why he feels like that. It breaks my heart to see him so sad.

It has been about 6-8 weeks since his last strep. illness. So, I don't know if this is still lingering from the last episode, or something starting. He was swabbed about 1.5 weeks ago (culture) and came back neg. Also, his past bloodwork came back clean for strep, and his titers were not really out of range.

 

I guess my questions so far are to see how it progressed/started for other children with a similar pattern as my son. I know everyone is so different, but I'm just trying to prepare and learn as much as I can from others experiences.

 

He is not on long term abx.....should he be? He was only on for 10days each time he had strep.

 

Could he be reacting now to a virus/other bacterial stuff?

 

He is also sore in his elbows/legs so often. That has been for a year or so. Is that a PANDAS thing, or a Lyme thing?

 

He did have a tick last year that was on him overnight...it was deep in his scalp, and already burrowing but I got it out. I suggested a Lyme test to my ped., but she said Lyme is so rare here(Illinois), that unless I pushed for it, she would not worry about it.

Should he be tested for Lyme?

Right now I feel like I want to test him for almost anything/everything.

 

Thanks so much in advance for sharing and any info!

I feel like I have read so much out there (trying not to freak out), but am learning the most from others who have gone through it, or going through it now.

[lyme_mom]

So sorry that you are going through this. Your doctor is wrong about Lyme being rare in Illinois. I would find a lyme literate doctor and have your son evaluated because the right combo of antibiotics can be miraculous if this is Lyme and coinfections. With history of an embedded tick on the head I would definitely suspect Lyme. They say Lyme goes to the nearest spot to the bite sometimes. If u get bitten on the hip it causes hip pain. Bite on the head can go to brain faster. We never saw a tick on my son but we think he was bitten behind his ear because it swelled up and there was a dot there. He got Bells palsy on that side of the face a week after the swelling. You need a Lyme literate doctor to evaluate. Many kids diagnosed with pandas have other infections too like Lyme. A Lyme doctor (not infectious disease doctor) will know what to do.

[airial95]

This does sound like classic PANDAS. Some kids do return to "normal" as soon as the strep infection clears, for others, it's not that simple. My son had the infection that caused his PANDAS in May of 2009, dx with PANDAS in Jan 2010.He was on long term abx for 11 months, then off for 2 months, and now back on after getting a strep infection in January. He is now still only at about 80% back to normal - working with CBT to help with the OCD that is left. My son has never had elevaqted titres, even when he had a postivie throat culture.

 

Since PANDAS is actually an autoimmune reaction, once the bacteria clears, the immune system still believes that there is strep in the basal ganglia, and continue the attack. Considering he caught strep so quickly after the last infection makes me think it may never have completely cleared. Remember, strep can hang out in the nasal cavities, our pediatrician has often given us muciroprin (sp?) or another abx ointment to apply there if we have a particularly tough infection to clear.

 

Many kids also need a longer course than the 10 days to clear their system. In the beginning, our doctor would give us a 30 day rx at full dose, but now he goes with a full 90 days. This is usually enough in our case to get us at least back to 80% or so (residual OCD being our lingering problem, but not as severe).

 

If it were me, I would ask for a longer course of abx (30 days at least) and I would have a nother culture run, a 72-hour because the rapid is not always reliable.

 

What type of abx was he on? Often, PANDAS kids don't respond well to ammox, and something like azith, augmentin or omnicef works better. Some kids also respond better to certain abx than others, so it may take a trial and error.

 

Now, with all that being said, considering the tick bite I would push for the lyme testing too - just to be safe. I wouldn't wait to start PANDAS treatment, but you have reason to suspect that lyme may be a cause too. I can't help much there - since I'm not a lyme mom, but there are others on here that are, and you can also ask questions on the Lyme forum as well.

 

Good luck!

[nicklemama]

Sounds like PANDAS to me. The evening anxiety and anger after 5pm happened to my son and still does, but to a lesser degree since he's on long term antibiotics.

 

The NIH is conducting a clinical trial of IVIG (intraveneous immunoglobin therapy) to newly diagnosed children who meet the criteria. I'd look into and see if its something you might consider.

[KaraM]

We were just at Dr. B. the other day and discovered my PANDAS dd8 tested positive for Bartonella (a tick born disease). He said that IVIG is off the table until that is cleared - he said it would be pointless. So it seems to me you would want to rule Lyme or any TBI in addition to strep before jumping into IVIG. (if those are ruled out, then maybe the IVIG study would be a good opportunity.)

 

I second the recommendation above about getting long term abx. When we were trying to rule PANDAS out last year, our pediatrician prescribed 14 days of Omnicef. She began to improve around day 11, but backslid about a week after stopping. Six weeks later after getting positive strep and Cunningham results, she went on Zithromax prophylactically. she improved pretty rapidly. She stayed on the Zithro through the fall. Unfortunately, she went into exacerbation late fall/early winter. We've been playing around with different abx, but nothing seems to be helping. As of Monday, we learned about the Bartonella and are thinking this is the reason for the exacerbation. She is now back on Zithro. In addiiton to that she is on Bactrim.

 

In the end, though, you should really see an expert in PANDAS and/or Lyme. Since you are in Illinois, you may want to see Dr. K (www.webpediatrics.com), one of the leading PANDAS docs. I'm not sure where he is in terms of Lyme, but he should be able to order tests regarding that as well.

 

Kara

 

 

The NIH is conducting a clinical trial of IVIG (intraveneous immunoglobin therapy) to newly diagnosed children who meet the criteria. I'd look into and see if its something you might consider.

[JJMom39]

My ds had his first PANDAS episode at age 6 and his most prominent symptom was severe nighttime anxiety. It would start around 5:00 and he would just stare out the window and watch and watch. He would never say what he was looking for but he had a look of sheer terror on his face. This anxiety continued through bedtime and all through the night. He would shake, scream, cry, and say he was so afraid he was going to die. My ds's fear eventually became about the house burning down, but at first it was an unspecified fear. We did not have a PANDAS dx until recently so this first episode went completely undiagnosed. His extreme anxiety went on for months and months even though the strep infection he had about 5 weeks after his anxiety started was treated. He also had daytime separation anxiety for a long time, and that has never totally resolved. With therapy his anxiety eventually became manageable, but it took many months. Separation anxiety is a common symptom in PANDAS as well as anger and other anxiety.

 

Since your son is showing symptoms again it could be that his last strep infection did not completely clear or that it is a new infection. When he was swabbed recently was the swab negative or was the culture that was done after the swab negative? Even if there is no apparent strep infection there can still be neuropsych. symptoms since those are caused by the auto-antibodies attacking the basal ganglia, and the autoimmune reaction can continue for some time. Strep titers do not have to be out of range for there to be strep and/or PANDAS. Some kids with PANDAS do have worsening symptoms when they are just exposed to strep or other bacterial or viral infections so it could be that your ds doesn't have strep now but might be reacting to having been exposed to it or something else. Or he could have a viral infection that is stirring things up. And as others have said since you have a known tick bite consult an expert in Lyme to rule in or out other possible infections. The abx regimen would be different for different infections. The soreness in his legs/elbows could be a PANDAS symptom or a Lyme symptom, or possibly both. My ds has pain in his legs with strep infection. There was a recent thread here on body aches

http://www.latitudes.org/forums/index.php?showtopic=12993

 

I am sorry that you are going through this!!

 

 

I guess my questions so far are to see how it progressed/started for other children with a similar pattern as my son.

 

I am now starting to see some severe anxiety/anger at about 5pm for the past few nights. He just gets really scared/sad/angry crying and says he just doesn't know what to do, or why he feels like that. It breaks my heart to see him so sad.

It has been about 6-8 weeks since his last strep. illness. So, I don't know if this is still lingering from the last episode, or something starting. He was swabbed about 1.5 weeks ago (culture) and came back neg. Also, his past bloodwork came back clean for strep, and his titers were not really out of range.

 

I know everyone is so different, but I'm just trying to prepare and learn as much as I can from others experiences.

 

He is not on long term abx.....should he be? He was only on for 10days each time he had strep.

 

Could he be reacting now to a virus/other bacterial stuff?

 

He is also sore in his elbows/legs so often. That has been for a year or so. Is that a PANDAS thing, or a Lyme thing?

 

He did have a tick last year that was on him overnight...it was deep in his scalp, and already burrowing but I got it out. I suggested a Lyme test to my ped., but she said Lyme is so rare here(Illinois), that unless I pushed for it, she would not worry about it.

Should he be tested for Lyme?