I SERIOUSLY think I have PANDAS!

[Stephanie2]

Does anyone else think they have pandas??? I have wondered about this for the past year and I am seriously thinking it is a big possibility. I mean I get some very subclinical tics/compulsions from time to time, that seem to happen with the boys' strep infections. But ever since my oldest boy's first strep infection, I have gone into 4 rages myself that always seem to happen when we have documented strep or I highly suspect strep (meaning someone is very sick and exacerbating). When I say rages, I mean throwing things against the wall, screaming on top of my lungs (not at anyone in particular, just screaming very loudly, saying I can't take anymore, etc...). There is usually some hyperventilating involved, along with my husband trying to calm me down which only makes me worse.

 

This loss of self-control is so very unlike my usual nature. All along I have said that this happens simply because I am being pushed to the edge by my boys but I am really starting to think that there is something else going on here. Mainly b/c I seem to feel so much better when I start an abx, even if my boys are still a disaster!!! For example, my anxiety is completely gone after starting amoxicillin this past week (after myself and my son had strep). The boys are still a mess, but my anxiety is gone.

 

I don't want to spend $400 on the cunningham test. I just want to know everyone's thoughts and experiences with this. I am starting to wonder if I need to go on a prophylactic dose of an abx...

[Fixit]

as i mentioned before...i Know dh has pandas as per his continued streps

and family history of strep and numerous autoimmune conditions...

JMHO those who still have ocd/tics as adults did not grow out of their pan/pits/autoimmune/allergy completley!!

[Stephanie2]

Yes, but this would be adult-onset for me (I'm 36, started when I was 32 during ds5's second exacerbation). Maybe that is b/c I have never had strep before? I don't recall having it as a child or an adult until the kids came along.

 

The only strange history I have is Reye Syndrome when I was about 9, after having chic pox and being given aspirin, of course. My mom described my behavior as delusional, having hallucinations, acting very angry toward her, acting very confused, in a fog. They did some tests at Phila. Children's and determined that I had Reye Syndrome. Maybe I had pandas instead?

 

Any other adult-onset cases???

[Fixit]

Yes, but this would be adult-onset for me (I'm 36, started when I was 32 during ds5's second exacerbation). Maybe that is b/c I have never had strep before? I don't recall having it as a child or an adult until the kids came along.

 

The only strange history I have is Reye Syndrome when I was about 9, after having chic pox and being given aspirin, of course. My mom described my behavior as delusional, having hallucinations, acting very angry toward her, acting very confused, in a fog. They did some tests at Phila. Children's and determined that I had Reye Syndrome. Maybe I had pandas instead?

 

Any other adult-onset cases???

 

Sure..why not..your system is down and you are susseptible..its just rarer as most have developed systems by adulthood..it just takes the perfect storm..

[AmySLP]

I'm pretty sure I had a misdiagnosis at age 12-I was diagnosed as pediatric fibromyalgia at CHOP-now does that even really exist??? I had joint pain that they could not find a reason for- a few years before I had leg/knee pain and saw an ortho ( I was probably 10)-they called it growing pains. I was a sick kid-lots of strep, sore throats, tonsillitis-had to have a near emergency T& A one day after christmas when I was in 8th grade b/c a large abcess kept growing and blocking my airway after it had been lanced twice. I was better in high school, but did have that type A personality...I always blamed it on my dad-a perfectionist himself with OCD tendencies. My Dad shared some of his OCD behaviors from when he was a kid and new ones that continue today~I can't believe we actually had this conversation (not liek my Dad but he'll do anything to help my daughters as we try to figure out where this all started). I just learned when I was questioning my 85 yr old grandma about my Dad's childhood that he had many many sore throats-always sick! She said he had strep alot, but did they really have a way to test that or was that just assumed-I wouldn't doubt it. I told Dr B my DAd's hx & current state & he felt strongly that he was/is likely PANDAS. My daughter has had more tics, choreiform movements & emotional lability than anything else, but she's just 6 (dx at age 4).

 

I'm pretty sure that from my Dad to me to my girls. I also was thinking how my grandmother is a bit OCD herself (I always thought of her as stuck in her ways, but it's probably more than that. SHe's so routine, inflexible, a bit of a hoarder. I wonder if it started there??

 

Amy

Edited September 13, 2010 by AmySLP

[Stephanie2]

Amy, we have so much OCD-type stuff in our family as well. But so does my husband's family - just like you said, hoarding, inflexible, major anxiety when the routine of the day is broken. On my side, my cousin's son (5) has OCD and Tourette's (they are not interested in testing him for pandas (???), and my greatgrandmother had to sit in a chair and count to 13 every time she entered the house. Is it possible that every family has this type of history? Or maybe it really is genetic?

 

I don't know...I just don't know how far to take it. Do I go on abx and risk the whole yeast/bacteria issue for myself? Maybe staying on abx would eradicate my need for lexapro, which would be nice, but then maybe my gut would be screwed up. I just don't want to feel and act so out of control everytime one of the kids gets strep...which is twice a year around here, prophylactic azith or not...

 

DS5 was really impacted by my last "episode". He acts like he wants to protect me all the time now and he gets scared of my reactions. How sad that he now has to worry about mommy's mental health when he has his own mental health issues to deal with.

[norcalmom]

I'm pretty sure I had a mild case when I was a kid. 4th grade was a nightmare for me, I mean literally, I had very vivid nightmares for several months so I would try not to fall asleep. I can remember having to pee all of the time, and nothing coming out. I also would pluck all the hair out of my knee caps with a tweezer, and sometimes pulled hair out of my head. I hid all these things. I remember feeling persecuted by kids at achool, but in reality I wasn't, I just had anxiety that I might get teased. All these memories are from around the same time, so I'm pretty sure I had a mild case. Whatever it was - it went away.

[KaraM]

HI Stephanie,

 

Dr Bouboulis told us he treats adults with PANDAS. Maybe you should consult with him?

 

Kara

[Fixit]

HI Stephanie,

 

Dr Bouboulis told us he treats adults with PANDAS. Maybe you should consult with him?

 

Kara

 

Really!!!!!

i've been blowing my husbands off ...as he is mild and has a full life...

but as i go farther with ds...dh and i serioulsy see a need for him to be treated!!

i think it would help ds and i am concerned dh is developing other health problems in relation to pandas...

but he's not a spring chicken like steph

[thereishope]

I've been curious about the possibility because of what I would consider my symptoms along with have MANY bouts of tonsilitis as a child....or maybe it was strep. They never swabbed me and just automatically gave penicillin.

Edited September 13, 2010 by Vickie

[PhillyPA]

Perhaps I am wrong in my thinking, but I thought PANDAS was caused in children with an auto-immune problem related to strep. Once the immune system matures, PANDAS symptoms go away for many, especially if they have had treatment. I would think that at age 32-36 your immune system would be mature enough and stable enough to not have this problem. But what do I know - nothing. Maybe it is PANDAS. I know that I lose it sometimes and I relate it to stress. Before you get antibiotics, I would try Xanax or Valium and see if that helps.

 

I believe that I had PANDAS as a child. Every month I had fevers of unknown origin from age 2-7. I was on an antibiotic every month. I would have to go to the hospital and get penicillian shots. My fevers went away when my brother got his tonsils out for chronic strep. This was in the 1970's. I remember my hallucinations as a child. I remember developing a "checking" type of OCD as a teenager. I also could not have anything pointed at me. Couldn't have a cabinet door open or it would bother me. If we were at a restaurant and someone's straw was pointing in my direction it would drive me nuts. It was mild OCD. I remember taking state exams in school and the guidance counselor calling me in his office and saying "Someone told you you could not do math but you can do it - you scored in the 99% for math last year;" I just couldn't do it anymore. I was in the gifted program and could no longer do math. All symptoms disappeared one day in college. I just woke up and was totally fine. ( I actually chose to go to Gettysburg College based on the fact that they did not require any math courses to graduate). Never had a problem since then. Except of course now - both of my boys have PANDAS. Their symptoms were more severe than mine were. Probably because the strep strains have morphed and become more destructive to the immune system.

[airial95]

This is a very interesting discussion. I'm torn as to what to think.

 

On one hand, I know that since our son's dx I've been under an increasing amount of pressure, and I've been overly anxious and "touchy" (that's a much nicer word than what my husband would say ) I've been very quick to get angry and fly off the handle, and as time has gone on, I've found it harder and harder to control my temper - to the point that there have been several times I've just had to leave the house as to not completely lose it in front of the children. I'd also say that we all have a tendency now to see PANDAS everywhere, in everyone's children, in our other children, in each other, etc... We're so paranoid and attuned to it that it seems like I can't look anywhere without wondering...hmmmmm could that be PANDAS. So, on one hand, I would say that it's stress, and that all of us have likely seen this through our journey's with PANDAS.

 

BUT.......

 

On the other hand, I'd be lying if I didn't say that I've had the same thoughts/questions. I have a long history with strep - I had it 5-6 times per year all through my childhood (and yes, I still have my tonsils, my pediatrician didn't think it was necessary to remove them). I still get it at least 3x per year. I even had to be hospitalized when I was in Jr. High because I had a bout of strep that they couldn't get rid of...everytime I stopped abx it came back immediately. After 3 1/2 months, they hospitalized me with IV abx, just to have a nurse ask my mom if the rest of the family had been tested - maybe someone was a carrier. (My pediatrician, nor any of the docs in the hospital had thought of this...turns out, my sister was a carrier. 9 times out of 10 if I had strep, turns out she did to with no symptoms.) My mother always said that I was a more difficult child. Stubborn, opinionated, defiant, with a VERY hot temper. But what stands out, is when she describes this, she also talks about how sweet, smart, caring, etc...I was too and it was like she had two different kids. Does this make me wonder? Absolutely. Does that fact that I know I have OCD and axiety issues now make me wonder if it's related. Yep. Does the fact that I've had a temper that has been described as out of control when it comes out - but that it only comes out very rarely make me think it's not just my "temper" but something more. (My husband calles it "Spanish mad"). Yes...I have wondered about all of these things in the last few months.

 

To be honest - I don't know what to think though. Part of me thinks it's all in my head, and I need to snap out of it and focus on my son who needs help more. The other part thinks there may be something to this...

 

But ultimately, I'm just to damn tired to add anything else to the equation so I just try not to think about it!!!

[thereishope]

In my instance, I would say post puberty, what I can see as symptoms, did level off but I still see some things lingering. What one would consider my last bout with it (if I did have it) would be at age 18. I still have some slight OCD, with an emphasis on reasurrance OCD mainly directed at my husband. One may say the spouse replaces the parental focus later in life. I no longer have ongoing tonsilitis even though I still my tonsils.

Edited September 13, 2010 by Vickie

[KaraM]

I don't know what to say about much of this except to relay the conversation we had with Dr. B. during our first visit for my dd8.

 

A little background: Two women I work with now have grown sons (24 and 28). After learning about my daughter (through my plea to help for the Pepsi grant), they each came to me separately swearing that they think that's what their sons had when they were children. One was constantly getting sick with strep and had/still has some lingering OCD. They other had both strep and Lyme around 4 years old after which he developed tics plus a load of other symptoms. He still has lingering issues as well. I told them I would ask Dr. B on our visit whether they could still be treated. So I asked and he said yes. He said he is currently treating some adults.

 

My understanding is that strep (and thus PANDAS) is considered a pediatric illness because "most" people's immune systems mature and they typcially don't get strep after puberty. However, this is not true for all people. Adults do get strep. So maybe, if they can get strep, they can get an adult equivalent of PANDAS. AANDAS???

 

Just a thought...

 

Kara

 

 

[Kay]

I believe I had Pandas at the age of 23 or so. Maybe it manifested when I was younger but did not have full-blown exacerbation until 23. Hard to tell and or remember back that far at my age now.

 

I never had strep as I remember as a child. I do remember in the 5th grade though having been sick before school started that year, missing the first week of school and that year dealing with urinary frequency that carried into 6th grade and then just stopped. I was constantly feeling like I had to use the restroom and checking all the time. Also I do remember having a bad stomach for a short period of time that they could find no cause for. Those are the only things that really stand out for me as a child and I never gave it any thought until we started looking into Pandas for my daughter.

 

I had strep twice when I was older once at 18/19 once again around 40 or so. (again hard to remember) I also had impetigo during high school.

 

At around age 23 I began having problems with a tooth that eventually had to have a root canal done on it. By the time I had the root canal I was already experiencing severe anxiety and had agoraphobia. I suffered for about 8 years with the agoraphobia before I found my ND who told me I was not crazy and treated me with amino acids also treated for yeast at some point. I was at that point having ocd issues but again until I started looking into all this for my daughter I did not have any idea that what I was dealing with was ocd.

I also went on the gluten free diet and had many food allergies/intolerances that I removed from diet. Most of my symptoms subsided…I was able to work and enjoy social events again. During this recovery I was having issues with my teeth again, they were moving and my dentist at the time didn’t think it was gum disease so he tried a few things to stop them from moving. In the meantime I became pregnant with my daughter and did not go back to the dentist till after her birth. By then I was told I had gum disease pretty bad was treated with surgery and antibiotics when my daughter was one, the surgery and antibiotics that I got for about 10 days each time went on throughout the year as each quadrant had to be done. During that time I did feel a small relapse of my anxiety/agoraphobia not nearly as bad but did balance out again with the use of amino acid and treatment of yeast and of course who knows what the antibiotics were doing.

 

I would not have known to call it Pandas back then. I never could understand the sudden onset of the anxiety/agoraphobia. It happened one day while out with my friends and got progressively worse over the next couple of days. I was a happy girl that day I woke up and by evening I was terrified.

 

So adult onset? I don’t think so. I think more likely for me there was something else at play when I was younger and possibly it was because we think my dad had rheumatic fever when he was 15/16 years old. He died at 52 of a heart attack. I would say I was predisposed in some way and it just did not explode until I was older.

 

I would say I am well and have been for the past 20 plus years. I seem to react to any illness in a normal way, colds, etc. I feel like I have a good immune system, try to eat well and take precautions to keep the viruses and germs away.

 

I will say if I don’t eat well, and I mean going way off my usual diet as far as eating lots of sugar and or not regular meal times etc I think that taxes my immune system and I can fall back into a little anxiety and or ocd (mostly in a thought process). I notice it right away and make sure I eat clean again and seem to be fine. I think there are weak spots in my system still after all these years and who knows maybe because I was never actually treated for Pandas what was left. Perhaps once I move Em through all this I may look into myself again.