Strep, You Are Beastly.

Just got back from the pedi, and after leaving behind a portion of our life savings and  almost having to promise my first-born to pay for the four visits, strep tests and Bicillin shots,  we know that four of four children have Strep.  Have I mentioned that even Strep exposure causes a reaction in one of my children...I mean a major OCD reaction in my already constantly raging child?  I think I mentioned that before.

I knew that the visit would be expensive, but I had to have proof, antibiotics and a paper trail on all of my children.  If we cured just one or two, we'd continue to pass this yuck around.  And we still might, but at least now we have a shot--no pun intended.

The visit was interesting.  Interesting because our pediatric group that is all over this medical center city does not believe in PANDAS.  So I didn't really bring it up.  I just mentioned that one of my children had an auto-immune issue and was severely affected by exposure to strep.  I hate to say it, but I think he could tell which one. 

I was in last week with my youngest daughter (3) who tested positive for the third time in 7 weeks.  She was given Augmentin since we had already tried Amoxicillin and Cefdinir.  Yesterday when she was still positive after a week on the new antibiotic, the pediatrician seemed a little confused.  A little like, "This is not supposed to be the case."  He flirted with the idea of me causing a resistance in her by not giving her the antibiotics on schedule (which is not the case).  Before we left I asked him if he saw this often.  He subtly changed the subject.

So I'm wondering if we have a particularly virulent strain of Strep or if our immune systems are not up to snuff.  I tend to think it is the latter.  Because although we are not sick often, it seems that strep lingers in our family.  And I am starting to discover that strep does not always cause symptoms in us.  

Sometimes the only symptom has been a strange "evergreen" smell  that I get a whiff of--seems to come from the nose rather than the throat.  Sometimes there is nausea or vomiting, and sometimes just a headache or even just a warm little hand in mine.  Sometimes nothing.

So I am reading, reading, reading.  I have discovered that lingering Strep cansometimes have something to do with Lyme, and we already know that Lyme is an issue, so maybe....

Anyway, I'm leaving you with a few links about PANDAS.   If you are living with this beast, I encourage you to visit the ACN Latitudes board for PANDAS (for some reason, my link button won't work, but go here:  http://www.latitudes.org/forums/index.php?showforum=17  .  There are other parents there who are trying to figure out this stuff, too.

 And I'm again reminding you to tell everyone you know about the link between Strep and OCD and the host of symptoms that go with PANDAS.  

http://childrenshospitalblog.org/one-mothers-story-how-strep-throat-attacked-my-childs-brain/

http://www.foodsmatter.com/asd_autism/miscellaneous/articles/pandas.html

http://www.ocfoundation.org/ocdinkids/parents/PANDAS_story.aspx

http://www.raisingarizonakids.com/2012/07/pandas-my-brain-is-making-me-do-this/

(ugh...none of those links are working correctly...you'll have to cut and paste them to your browser bar....sorry :(  )

After Oz

Whew.    We are home.  Barely made it.  It occurred to me several times during the last leg of the trip that this could be my last day on earth as Sweet Girl raged out of control in the front seat in major traffic.  

We left  yesterday morning to go to our long awaited appointment outside of Dallas.  Feels like we left a week ago.  I did a very bad thing and stayed up past the wee hours of the morning on Tuesday evening/Wednesday morning because I wanted to have all my records just so to take to the appointment.  I knew that was probably not a good idea.  But I had no concept of just what a bad idea it was.

When I got up on Wednesday, I let my girl sleep til the last minute.  She couldn't decide on any clothes to bring and hadn't packed anything because of it.  She is actually down to very few items of clothing that she is willing to wear at this point, but it still becomes a long and laborious task for her to decide what to put on.  So I put a few things that I have seen her wear into my bag, and we woke her up to get straight in the car.

She was very upset about not getting to pack her own bag and immediately became very oppositional.  We gave her 2 Advil, 2 TBSP of peanut butter and had to chase her around the front yard, trap her in the van and take off so she wouldn't jump out (I know my neighbors love me....)  She insulted and screamed and berated me for almost 2 hours.  Finally, half way there, she was sweet and held my hand as we went into the gas station.  She was pretty sweet for the next few hours and until bedtime.

We ate food of her choosing and went back to the hotel room early to go to bed about 7 or 7:30.  I finally dozed off a little after 8, and woke up at 8:30 to turn off the tv like I said we would and dozed back off.  She woke me up very upset and went on for hours screaming and yelling to me she wanted to go home, she couldn't stand me, no one could, she never wanted this trip, etc., etc., etc.  Once in that time period, she calmed down and actually laid in the same bed snuggled up next to me, but when I dozed off, we repeated the whole cycle over again.

Finally, around 2, she dozed off in the other bed, and I had a chance to get some sleep.

We got up early to be outside the doctor's office at 8:30 for our 9:00 appt.  We went in, Sweet Girl got to play on the swing and some sensory stuff, and we were called back very quickly.  We left the office at 1:00 after an extremely traumatic blood draw which required the nurse, myself and the lab tech to hold her down.

The doc had to leave the room to visit with another patient a few times but spent a great deal of time with us.  He suspected that yeast may again be a player for our girl (wish I could say that was a shock) and tested her for several chronic infections such as H1N1, coxsackie, etc.  The doc gave her an rx for Omnicef (we had been on a month of Azithromycin) as well as an anti-anxiety med.  I do have to get her on a plane to go to the appt in a month, and I am more than a little concerned about how I will do that.  We talked at length about her history, and he asked who would be seeing her for Lyme.  He knew of the doctor that we will see in April and seemed to approve.  We have an appt to review test results in a month.

We left the office, and Sweet Girl was in a terrible state, set off by the blood draw.  The 11 year old girl who had loved me when we went in now hated me and wanted to inform me, once again, that everyone hated me, that she never wanted this trip and was no way going to go with me on the trip in a month(hello, anxiety med for the plane ride).

I planned to eat somewhere that she would like, but she could not find any place that was okay, and now she wanted to go home, and I didn't really want to repeat the night we had before.  So we packed up the car and headed back home looking for a place to eat.  We finally found a Sweet Tomatoes where my girl who always has a voracious appetite ate a handful of salad and a small serving of chocolate pudding.  She said she wasn't feeling well.  I thought she probably had strep again, but the doc had declined to test her since he was giving her a new antibiotic anyway.  I think the blood test was enough.

Did I mention that we filled her Rx?  We did.  Got a little lecture from the pharmacist about the anti-anxiety meds--I would so like to be able to skip them, but....And then we were going to get our nails done.  Except that once we got into a salon to pick out the color, she didn't really want to.

So back on the road we were with not enough sleep, but plenty of stimulation!  She was feeling nauseous, but I gave her a chocolate and her new antibiotic--so excited to maybe bring our girl home!  At least a LITTLE better...

Pretty soon she was back to the irritable side, and we had more insults and ugly ideas coming my way for a.  very.  long.  time.  By the time we got to our hometown, it was dark, and I offered up several places to eat because no way was I going to cook when we got home.  Nothing was agreeable, and pretty soon, I was stupid for even suggesting such restaurants.

I finally stopped at Chili's--she likes their ribs.  We went in and were seated, but she was complaining about what a terrible restaurant that was and how stupid I was--loudly.  The server took my order--Sweet Girl declined--and the server was afraid to look at her.  My food came fairly quickly (wonder why?) and I began to eat while she got more and more upset, half crying, half soft yelling about me being stupid, a pig, etc.  It was so bad that we finally left.

Got in the car and gave her the anti-anxiety med, but she was already hyped up.  Yelling, kicking the dash, telling me to stop, STOPPPPPP!!!!!!  Stop breathing, stop eating, stop drinking, STOPPPPP!!!!!! This soon changed to MAKE IT STOPPPPPPP!!!!!!! and I told her to close her eyes so she wouldn't see the lights going by, but she couldn't, everything was too much.

We got home, and immediately, she couldn't touch ANYTHING.  Not the door, not a person, nothing, and she was SHRIEKING from the car into the house.  We turned on the shower and tried to get her in thinking that would calm her down, but she couldn't get into the shower and stand the feel of it.  She was already naked and now could not put any clothes on.  I shut the bathroom doors as I went out, and she couldn't open them because she couldn't touch anything.  Didn't want me to leave her sight.  And SCREAMING, CRYING.

We couldn't figure out what to do.  It was bedtime, but nobody was going to bed like this.  Finally, in desperation, I remembered about activated charcoal to absorb and attract some of the toxins that were now being moved around in her body.  We gave her two capsules.  She ran upstairs and discovered that her room had been cleaned and screamed and yelled and threw things around for a while.  The husband and I were in our room trying to brainstorm what to do.

Thirty minutes after we gave her the capsules, I exited our bedroom to find her laying on the couch, fully clothed, watching tv and able to answer a question about a toothbrush.

????

Let's just file this post under--Herxing.

PANDAS

Lions and tigers and PANDAS, oh, my!  Okay, that was a lame attempt at making the unfunny....funny.  Sometimes you gotta' laugh, right?

PANDAS.  If you don't know about it....learn about it.  And tell everybody that you know.  Because it could save the sanity of a child and/or family that you know.  Literally.  Save their sanity.

More and more I am convinced that often mental illness is the same as any other illness.  It is infection or some other disease state whose symptom is behavioral instead of or in addition to "medical".  And PANDAS fits that to a "T".

I could quote a lot of statistics and research here, but I'm just going to cut to the chase and give you the nitty gritty of what I know.  PANDAS is an autoimmune issue in children (but not always) that researchers originally thought was due to only strep infections.  It is an infection that causes a sudden onset of OCD and/or tics and other behaviors.   Researchers have found, this disease can actually be caused/exacerbated by other infections such as chronic Lyme Disease (which many doctors don't believe in or don't know all of the symptoms of or test and/or treat inadequately), mycoplasma infections, staph infections, etc., etc.

Other symptoms of PANDAS are separation anxiety, bedwetting or frequent urination during the day, sensory issues (as in sensory processing disorder), concentration problems, irritability (sometimes this can include aggressive behavior), depression even to the point of suicidal thoughts, immature behavior. The is the short, general list.  

PANDAS is difficult to treat, to be sure.  Add to the lengthy treatment time the fact that many, many doctors and insurance companies do not recognize PANDAS as a disease itself and often refer out for counseling and psychiatric treatment, and you've got a disease that can steal a person's childhood altogether.  It can wreak havoc on family relationships and can rob a family of any savings they may have as well as money that they don't have but borrow to heal their child.

Early diagnosis is huge.  Getting doctors to recognize it is even bigger.  And educating parents is enormous.  Who will fight for a child like their parent?  Not a doctor--not even the best-intentioned one is invested like a parent.

At this point, PANDAS and Lyme and other infections have taken 7 of my daughter's 11 years....and she is not healed....yet.  We didn't even have a clue what was going on until 2 years ago--after we had seen pediatricians, therapists, psychiatrists, autism specialists and been evaluated by the school district.  And even then, we didn't find out about PANDAS through them.  It was googling and questioning and remembering that once, years ago a doctor had mentioned PANDAS and then went on to refer us to a counselor.

But after getting confirmation of PANDAS through Madeleine Cunningham's testing at Oklahoma State University, we still could not get treatment from our local pediatricians who gave us the speech about how PANDAS was unproven, and we had to be careful of following unproven lines of treatment, and by the way, if we didn't come up with some plan for vaccinating our children, we would no longer be seen by the practice (okay, I'm a little disgruntled).

We saw at least 3 local pediatricians who would do nothing but run us out of the office and then found a functional medicine MD who recognized PANDAS but hadn't had enough experience with it to feel comfortable treating it.  And she tested us for Lyme.  So then, after quite a bit of arguing back and forth about whether or not this was real and the true cause of everything, my generous husband and I agreed to see a Lyme doctor several states away.  Ahem.  And may I just say, he was not all he was cracked up to be.  And although we had never taken my girl of off psych meds, we went back to the idea that she must just have bipolar, perhaps brought on by PANDAS and/or Lyme.

Frankly, it was more than we felt we could swing to take us all to the Lyme doc out of state.  I knew that we could not continue to travel the country paying thousands of dollars to doctors who did not take insurance.  And we did the best that we could for our girl.

After two more years on pysch meds with no significant long-term improvement, we were seeing more side effects than we had ever seen before.  To the point that we had to wean down off of meds altogether, had a strep exposure soon after and a very obvious OCD flare until we started antibiotics.  And this brings us to where we are today.  Treatment for PANDAS.  And Lyme. And other infections.

So I end this post by telling you again, if you know a child who has a sudden onset of OCD or tics, tell the parents about PANDAS.   If you are the parent, educate yourself about PANDAS.  And then advocate for your child.  You could save someone's childhood.  You could save someone's family.  Tell everybody you know.

PANDAS 2010: The Year of Hope