Does PANDAS cause sudden severe depression? suicidal ideation?

[Hopeny]

Previously normal, happy (sigh) DD8 diagnosed with Lyme and 2 co-infections, Anaplasmosis and Echirliosis. Also has super high Myco, 5. Major symptoms leg pain and sudden severe depression. I must have received 30 notifications of Strep in the class this year. Has had strep twice in 2012 so far, the last time strep came on she began expressing frequent suicidal thoughts. On a hunch I said to myself I wonder if has Strep and is it related to this depression and sure enough LLMD looked in her throat and said "That's quite a dramatic presentation of Strep". Titer was high at 192 but from what I have seen of others that does not seem to be off the charts. DD treated with 2 rounds of Amox and recently 5 days of Doxy for Lyme. Was remarkably better on Doxy. Psych extremely concerned, put her on Zoloft. She has obsessions (talks about the same 3 things that upset her over and over and over and over) but does not seem to have rituals or germ aversions etc. (LOL I think I do though) No facial tics, but lots of picking at her skin. Has had a few really paranoid thoughts, world was dangerous and really odd statement that she was afraid of her clothing. At a crossroads trying to figure out is the suicidal stuff Lyme, PANDAS, both? What to treat? Our LLMD refered us to Dr B and seeing his PA in 2 weeks. Have a Neurologist appointment as well with someone who seems Lyme and PANDAS knowledgeable. Also getting a second Lyme opinion and trying to decide if we should go for IV antibiotics. DD was on Augmentin in October for sinus infection, concurrently with inhaled steriods for mild asthma, went into a depression. Saw therapist recovered quickly, tapered off therapy, completly began tanking in Jan/feb around the time of the first Strep and Lyme Dx. (Based on what I now know, can trace Lyme to 2010) Now in a crisis state and put on Zoloft. PANDAS moms can you please tell me, is depression/suicidal ideation part of PANDAS? Appreciate any feedback. Thank you.

[DeterminedMomVA]

It can. That was my DS10's main presentation at first, along with very mild OCD and an extraordinarily severe deterioration in handwriting (which was really what enabled us to identify it retrospectively as the first PANDAS episode). We think that was the first exacerbation. It lasted about 3 months, and wasn't identified as PANDAS at the time. The first suicide threat was exactly 10 days after a strep throat diagnosis, and the depression lasted 3 months before he returned to normal. That was followed by a mostly normal 6 months, then all xxxx broke lose with the second exacerbation, which included basically every symptom on the list (except bedwetting) with one of the main presentations being suicidal ideation, emotional lability, OCD, rage, and impulsivity. Child was normal and very happy before all of this started. No red flags at all.

 

Edited to add: We do not appear to have any co-infections, such as lyme, complicating things.

Edited April 20, 2012 by DeterminedMomVA

[LNN]

Is your DD on a combo abx treatment for her lyme and co-infections? It sounds from your post that the abx has been intermittent. The ehrlichiosis/anaplasma can be awful and all of the infections you mention can cause imbalances in neurotransmitters that could lead to severe depression.

 

It sounds like you may have a patchwork of doctors. Do you have one doctor who's aggressively treating the infections and giving you the guidance you need? Without that, I think it can get very confusing.

[tpotter]

Yes, it can. DS19 also had that symptom...3 separate times. The first time he was hospitalized and put on psych meds. Did either nothing for him or made him worse. Then we figured out the possible correlation, and voila...abx worked almost overnight. Two more times, we got the same response (within hours of putting him on abx, he was better.)

 

Unless you really feel the zoloft is working, I would consider asking the doctor if you could try just the abx (with supervision, of course), and see how it works. If it happens again...same thing...just the abx. Now we do a combo of nutrition and acupuncture (and will do chiropractic if necessary.) Unfortunately, DS19 now gets c-diff every time he's put on abx, but if it was life and death, we would do it, and deal with the consequences afterwards.

[nicklemama]

The short answer is yes. My DS was severely depressed and voiced that he hated himself many, many times. Also had an episode of suicidal behavior but it was linked to an SSRI med. He was only 6 at the time.

[Hopeny]

It can. That was my DS10's main presentation at first, along with very mild OCD and an extraordinarily severe deterioration in handwriting (which was really what enabled us to identify it retrospectively as the first PANDAS episode). We think that was the first exacerbation. It lasted about 3 months, and wasn't identified as PANDAS at the time. The first suicide threat was exactly 10 days after a strep throat diagnosis, and the depression lasted 3 months before he returned to normal. That was followed by a mostly normal 6 months, then all xxxx broke lose with the second exacerbation, which included basically every symptom on the list (except bedwetting) with one of the main presentations being suicidal ideation, emotional lability, OCD, rage, and impulsivity. Child was normal and very happy before all of this started. No red flags at all.

 

Edited to add: We do not appear to have any co-infections, such as lyme, complicating things.

[/quote

 

Thank you, DD has not so neat handwriting to begin with but I definitely noticed a few times it looked really bad. DD wet the bed last week, last time she did that I think was pre-k. She has a number of obsessions, but not the OCD rituals and food rituals that I have read about on this board.

[Hopeny]

Is your DD on a combo abx treatment for her lyme and co-infections? It sounds from your post that the abx has been intermittent. The ehrlichiosis/anaplasma can be awful and all of the infections you mention can cause imbalances in neurotransmitters that could lead to severe depression.

 

It sounds like you may have a patchwork of doctors. Do you have one doctor who's aggressively treating the infections and giving you the guidance you need? Without that, I think it can get very confusing.

 

Thank you. We have gone to one LLM who got worried about her amox reaction and does not want to restart, gave her Doxy for 5 days which seemed to help tremendously. I know they don't like to give it to kids but i would like to try a second 5 day course. I have an appt with another LLMD for a second opinion who is known to be very agressive, will see what he says about the PANDAS and other treatment. Going to a Lyme/PANDAS Neurologist (he seems to be expert in both) to get her evaluated, just to rule out any other possible issues. Using acupressure (she is scared of the needles but hoping to convert to acupuncture). Something is definitely mis-firing, was an extremely sudden onset and deterioration with no other major triggers. What combo abx treatment were you thinking of?

[Hopeny]

Yes, it can. DS19 also had that symptom...3 separate times. The first time he was hospitalized and put on psych meds. Did either nothing for him or made him worse. Then we figured out the possible correlation, and voila...abx worked almost overnight. Two more times, we got the same response (within hours of putting him on abx, he was better.)

 

Unless you really feel the zoloft is working, I would consider asking the doctor if you could try just the abx (with supervision, of course), and see how it works. If it happens again...same thing...just the abx. Now we do a combo of nutrition and acupuncture (and will do chiropractic if necessary.) Unfortunately, DS19 now gets c-diff every time he's put on abx, but if it was life and death, we would do it, and deal with the consequences afterwards.

 

Psychiatrist was so alarmed about the rapid onset, frequency of thoughts and how to carry them out that she really pushed for Zoloft. That said, Doxy really seemed to make a difference, but things have been so bad that I agreed to Zoloft. We went to Disney two weeks ago and i hugged her and said I hope all your wishes come true and her response was, well, a chilling wish I can't even bring myself to type, my heart actually went cold. We are doing acupressure and working on nutrition too.

[Hopeny]

Thank you everyone for your responses. We are going to actively go after the Lyme keeping the Strep in mind, also will do a second titer. She had active strep at the time of the 192 titer, which I was told by someone today is not that high. So maybe Strep is a factor but not the major one.

[Worried_Dad]

When our ds was in full PANDAS exacerbation, he repeatedly begged us to kill him and said he "just wanted to die." Unfortunately, this is not unusual: when their brains are literally on fire from the autoimmune attack / inflammation, they are as overwhelmed as we parents.

 

A few words of warning from painful experience. If your child expresses suicidal thoughts, take it seriously and monitor closely. Our ds did try to act on those feelings one time, grabbed a kitchen knife (luckily a dull one) and dragged the blade across his wrist. Absolutely terrified us!

 

Also, many of the traditional psych meds prescribed to combat OCD and depression have an opposite effect in PANDAS kids. They're actually activating or dis-inhibitory, especially at "normal doses." So if your psych pushes this option, it's vital to go "low and slow" with dosage.

 

You have our prayers. Nothing is more horrifying to a parent than hearing your formerly happy, healthy, well-adjusted child express a desire to die. With treatment, that nightmare does go away!!!

[tpotter]

Thank you everyone for your responses. We are going to actively go after the Lyme keeping the Strep in mind, also will do a second titer. She had active strep at the time of the 192 titer, which I was told by someone today is not that high. So maybe Strep is a factor but not the major one.

 

 

I'm glad you're going to look at lyme and co-infections, because honestly, if doxy is working, that would lead me to believe you may very well be dealing with lyme (that's the main drug used for it.) That doesn't mean, though, that strep or other infections and/or environmental triggers are part of the picture.

[Hopeny]

Thank you everyone for your responses. We are going to actively go after the Lyme keeping the Strep in mind, also will do a second titer. She had active strep at the time of the 192 titer, which I was told by someone today is not that high. So maybe Strep is a factor but not the major one.

 

 

I'm glad you're going to look at lyme and co-infections, because honestly, if doxy is working, that would lead me to believe you may very well be dealing with lyme (that's the main drug used for it.) That doesn't mean, though, that strep or other infections and/or environmental triggers are part of the picture.

 

DD is sooo much better today, for the first time in 4 weeks I feel like I have my daughter back. It cannot possibly be the Zoloft, has only been 3 days. I think it is the Doxy... amazing she only took 5 days of it. She has high Myco IGG (5) too. A perfect storm. But I agree, the Doxy success has to be strongly consdidered. It's all sometimes hard to believe it is happening.

[Hopeny]

When our ds was in full PANDAS exacerbation, he repeatedly begged us to kill him and said he "just wanted to die." Unfortunately, this is not unusual: when their brains are literally on fire from the autoimmune attack / inflammation, they are as overwhelmed as we parents.

 

A few words of warning from painful experience. If your child expresses suicidal thoughts, take it seriously and monitor closely. Our ds did try to act on those feelings one time, grabbed a kitchen knife (luckily a dull one) and dragged the blade across his wrist. Absolutely terrified us!

 

Also, many of the traditional psych meds prescribed to combat OCD and depression have an opposite effect in PANDAS kids. They're actually activating or dis-inhibitory, especially at "normal doses." So if your psych pushes this option, it's vital to go "low and slow" with dosage.

 

You have our prayers. Nothing is more horrifying to a parent than hearing your formerly happy, healthy, well-adjusted child express a desire to die. With treatment, that nightmare does go away!!!

 

Thank you, we are watching her closely. I am hoping to look back one day and see this time in the past. Today was a good day. Praying for yours too and all of these children.

[EAMom]

definitely!

 

My dd (7 years old in 2008) had these symptoms when her PANDAS was at its worse.

 

I hope your dd continues to improve on abs!

 

Doxy would also help if mycoplasma were a factor...so it could be that or Lyme.

 

I thought they used Azith. in young kids with Lyme. Has that been considered? Azith. can also get Mycoplasma.

[Hopeny]

definitely!

 

My dd (7 years old in 2008) had these symptoms when her PANDAS was at its worse.

 

I hope your dd continues to improve on abs!

 

Doxy would also help if mycoplasma were a factor...so it could be that or Lyme.

 

I thought they used Azith. in young kids with Lyme. Has that been considered? Azith. can also get Mycoplasma.

 

They don't seem to like to use Doxy in kids but it worked so much faster/better than Amox, could also be that Amox did a lot of the work and Doxy given after is getting all the glory, hard to know, we just saw such a major improvement. DD's emotional state was going off the charts on Amox but this may have been a Lyme herx, not sure. Azith does not work in Lyme at all but I can't recall why. DD has very high Mycoplasma (labs were a 5, normal cut off range was under 2) We are seeing Dr. B's PA in 10 days, seeing a PANDAS/Lyme (I think/hope) literate neurologist and have an appointment with a well known agressive Lyme "guru" next week. Today I went through the Neurologist's patient questionaire symptom checklist and was completely alarmed to see that I had checked many, many boxes in the neurological symptoms section. I really appreciate this forum, this is the best I have found for answers. Thank you, I hope your DD is healthy and happy.