Friday, September 28, 2012

P.A.N.D.A.S: Doctors apt.

     Hello, Thursday we had two doctor appointments and a blood draw at a hospital.  I have to say Everett was a trooper.  Everett's "quick strep" test came back negative, so it will be cultured. One time, it came back positive when initial results were negative.

     Next stop, Dr. K.  He took one look at Everett and said "it's the tooth". "huh?", I asked. Dr. K went on to explain that they are finding that the immune response to a tooth loss can be enough to kick off a Pandas episode....

     Apparently Everett's glitchy immune system can go a little haywire with other forms of infections, not just Strep.

     After consult, Dr. K decided that this was probably going to be a mild episode. He went on to explain that each Pandas episode is unique unto itself. Meaning, sometimes you can have off the charts type behavior, sometimes mild.

     For Everett this means that for right now we are only seeing mood volatility, irritability, temper-tantrums, a little aggression. He is also, mainly at night, doing some repetitive movements..spinning, running up to third step in our house and jumping off over and over. I notice that he is a little more fearful then his usual to sleep by himself.

     This time around, I am seeing more calm moments in comparison to last spring. Last spring he was a wreck ALL the time and for several weeks.  He could not keep it together in any arena: school, sports, home...he looked very adhd. So for he has been able to keep it together in school. Time will tell.

     Everett will start antibiotic therapy.  It is with hope that killing and mild infection that might be invading his body will return Everett back to status qua: calm, compliant, emotional control, agreeable.  Everett has  exhibited very little of these traits for about 2 weeks now.
 
     We want our Everett back.

     Hopefully the antibiotics will do the trick.  It looks like we might be into a 6 week stint of antibiotics.  If that does not work, then he would receive a :steroid burst. We will keep our fingers crossed.

     Well, that's where we are at right now.  I will keep posting as we go along. It's been a long, emotional week.

     Goodnight, QAnnie
     Last

PANDAS UPDATE

     Everett has been on antibiotics for about a week now and he seems to be doing better.  I would definitely say that this episode is much milder. No nail biting, calmer moments, and he is able to hold it together in school.  Almost makes me wonder if this was a false alarm..Dr. K said that each episode will be unique. Some better, some worse.  This time around it was more behavioral. Intense tantrums pretty much around the clock and over everything. Some mild OCD quirks: stair climbing over and over for about 1 1/2 hours at a time non-stop. The stair climbing has already abated.  I wonder if the reason this episode was so mild is because we know what we are dealing with now and caught it quick and put him on antibiotics.

     In hindsight, I think his past episodes were going on a long time before we realized it was something more then high-strung behavior. As the kids grow older, I think it is easier to catch because their is  higher expectations regarding behavior. What you would see as normal in a two year old would stand out in a seven year old.

     Anyway, as of right now, Everett seems to be on the mend. We always keep our fingers crossed.

     Goodnight, QAnnie

    

Pandas Episode 3

     Everett is in the middle of another Pandas episode.  It was kicked off by the stomach flu that he had 2 1/2 weeks ago.  His symptoms started about 1 week after the flu. It looked like a mild episode until on day five he then got Tonsillitis and two days later his Panda's symptoms got worse.
   
     His typical symptoms include:  His ability to reason has regressed to that of a 2 yr. old. He is arguing over everything, and is unable to let go of an argument once it has started, becoming fixated on it.   He is having  temper tantrums over just about everything.  He is acting very very hyper and is unable to calm down once he is over stimulated.  He is running around the house, jumping, bumping, and bouncing into everything.  His movements are at times very erratic and look very "herky jerky".   He is also acting aggressively, targeting his brother, Michael. He is tackling him, running up to him and screeching, growling, barking loudly in his ear.  He is antagonizing him and trying to push his buttons.  This is unfortunate because Michael has hyper-sensitive integration  issues and after about a week of this, he himself has started to unravel.

     I knew it was a Pandas episode when he started having urinary accidents at night and even during the day.  I think the reason this happens is because when he is having an episode it seems that his whole body/brain is in a "alarmed", "anxiety" type state.  It seems to disrupt his brain body/connection, therefor, he fails to feel his own natural cues prompting him to go to the bathroom.  When he had a bowel accident, I knew for sure something was up.

     That leads me to his night fears.  While he is not a fan of sleeping in his bed, he was not complaining about it.  All of a sudden, he was asking again to sleep with me.  When he sleeps with me, I notice his sleep is not calm, as usual. He is thrashing around allot, kicking, arms flying around, flipping. This can almost be non-stop.

     His ability to focus is off.  Until today, Monday, he was doing reasonably well at school. But since the episode went to another level over the weekend, he had a hard time at school today. Unable to focus and manage school work without a lot of re-direction. He was arguing with his teacher, which has never happened in his first grade year. Up till now, his teacher has reported that he was one of her best behaved students.  He at times appears not to hear you at all, I have to call out to him several times before he responds.

   Some of the newer symptoms have been:  Complaining that the light is hurting his eyes.  He is a very skinny child.  He has been rather focused on this. He says often, "I am so skinny!!", and seems to be delighted with this.  He will not wear certain clothes because he says they make him look "fat". Really?  He does not have an ounce of fat on him. I recently re-read Dr. K's website on Pandas.  I was stunned when I read that "prepuberty" anorexia "thinking" is one of the symptoms.   I don't respond much to this, I"m afraid to give it too much attention.  The good news is that the kid eats allot.  He has not yet made the connection with eating/weight gain. God.

     One strange thing about Panda's is the waxing/waning.  For the most part, I am seeing more of a constant with his symptoms, not seeing much waning.

     Everett saw Dr. K. last Wednesday.  He started him on antibiotics for both his tonsillitis and Pandas symptoms.  He will do 10 days and then wait a week for his symptoms to go away.  If it works then we are good until the next episode. If the antibiotics fail, then we will discuss IVG.  Dr. K. says that as long as the antibiotics work we will use them until age 10. He feels that at age 10 he see's a lower success rate with the IVG.

     QAnnie

PANDAS

     Lions and Tigers and ....Pandas??  Really?  Today I had 1st grade school conferences. I am pleased to report that all of our hard work in regards to sensory issues, auditory processing therapy, understanding a diagnosis called PANDAS has paid off!

     My children had a very, very rough start in kindergarten. My children's kindergarten teacher started the year out optimistic. It quickly went to confusion. Which led to frustration and eventually at least one of them could not wait for the year to end fast enough......9+ months yielded no noticeable change in regards to my children's behavior. In fact it got worse, especially for Everett. Viewed as High-strung, but with time to mature, Everett's teacher was sure that his endless high energy, inability to sit at circle time, impulse control and a problem with following the rules would  slowly abate with enough positive reinforcement and maturity.

    Well, it didn't. By mid-spring, Everett's usual antics turned on a dime overnight. For the worse. I mean overnight. Hard to believe, but my little guy went from high-strung, borderline adhd to looking classic Autistic overnight. He went to bed one way, and woke up  another way. I now had a child who was spinning his body over and over again and again all day long. His somewhat temperamental,  nature now was explosive and out of control.  And the nail biting... gnawing was a better word.  Constant, all day, and when he ran out of fingernails,  he started ripping strips of skin off the pads of his fingers...He started wetting the bed every night. He became so out of control that my house quickly got turned upside down and I thought he must have a brain tumor.

     I called his doctor. To make a long story short, Everett, several months later was diagnosed with a very rare auto-immune disorder called PANDAS. When his pediatrician first suspected this I thought, no, NO WAY.   But I happened to respect his doctor, he has always been wonderful and right on (he knew my kids well) with both my kids and he has always truly cared. So I decided to listen. After about a half hour of talking I decided to believe him.

      PANDAS: Simply put is believed to be an inherited glitch of the immune system.  When such persons, like Everett encounter the Strep throat bacteria, the immune system goes haywire.  It does a couple of things wrong.  First, when Panda's kids encounter strep their immune system fails to respond and cause strep throat symptoms.  These children often run no fever, have no sore throat, and consequently have a history of at least one Scarlet fever incident in their history. Everett had Scarlet Fever when he was three.

     The second thing that goes wrong with Panda's kids immune system is that when it encounters strep, it is thought that their system makes "imperfect" antibodies with a less perfect GPS.  The immune system goes on antibody overload...it keeps making them and making them...even if the child is treated and the strep in eradicated.   Problem: The "less perfect" antibodies with the faulty GPS not only attack the strep bacteria, but it also attacks the frontal lobe of the brain called the Basil Ganglia. THE IMMUNE SYSTEM THINKS THE BRAIN HAS STREP!  So it attacks it.....weeks after the strep is gone, the immune system is still attacking the brain and eventually causes enough inflammation to cause a whole host of neurological reactions...ocd behavior (Everett's chronic nail biting), erratic mood swings and explosive behavior, they often start bed wetting after initially being dry.  Fears are a biggie:  Afraid to sleep alone, enter rooms by themselves, are just a few of my Everett's fears. While many kids have fears, it is important to understand that there is a  "big picture",  of where these fears play a role in the diagnostic criteria for Pandas. 

     There are a whole host of behaviors that go into the clinical diagnosis of Pandas. The one criteria  that needs to be demonstrated is the SUDDEN ONSET, OVERNIGHT BEHAVIOR CHANGE witnessed by parent/caregiver.  From what I have learned, every child ever diagnosed with PANDAS meets this part of the criteria.

      If a child is suffering from Pandas, it is likely that he has been dealing with it for years. What happens is that each consecutive bout (which last about 8-12 weeks) leads to a more severe more apparent set of symptoms.  In Everett's case, it it now made sense that he had month's of looking less high-strung, appeared to be maturing, settling down, and then  back to square one, but worse. We as parents finally had answers to all these wax/waning behaviors. Is was his/these inconsistent behavior traits that cause many teachers, doctors, to hedge on a adhd diagnosis because he never really fit any other profile completely.

     Daily I thank God for Everett's pediatrician who led us on the journey to finding an expert and eventually a diagnosis.  It took six weeks of antibiotic therapy to rid his system of his spring Strep throat infection.   Several more for his brain to calm down.  He is doing great . Everett's teacher today told me that he was not the kid that she expected to encounter judging from his kindergarten teacher. Everett comes to school, calm, focused, he is aware and cares about his behavior and is doing well academically.

     Everett will encounter Strep again. He will go into another reaction. The good news.  He will have a IVIG treatment, and chances are very high that he will never have Pandas again.  It can be treated with no long term effects. I share this information because if it were not for a doctor who cared to think out of the box a choose not to stick an easy diagnosis like adhd or ocd  we would still be as parents stymied, scared, and confused. If your child is displaying many of  these behaviors, look up PANDAS on the Internet.

 A word of caution: Pandas is a very rare disorder.  There is specific criteria need to come a diagnosis.  That being said, If your child is displaying some of these symptoms, and there are many symptoms as well, it's worth checking out. I think a well informed parent is a good one. QAnnie

PANDAS : IVIG

     We are now into a month long episode of Pandas.  This past Monday I mentioned that he came down with another throat infection after only being off the antibiotics for four days.  I'm convinced that he never got rid of the first infection, hence, this has been one long Pandas episode.  The four day break of normal baseline behavior that I saw was probably  part of the wax/wane pattern that can be typical of Pandas.

     At this point, it does not really matter.  I spoke with Dr, K. today, we have an appointment next Friday.  He feels that at this point, we need to talk about IVIG.   YES! 

     I am so done with all of this.

     Qannie

     P.S.  I am recommending a wine called Dreaming Tree, Cabernet.  It can be purchased at Binny's.  It costs around $10.00 and tastes like a $100.00 bottle of wine.  At this point I feel like I deserve a $100.00 bottle of wine.  Ha.

Panda's Update

Everett is back!  Well, I know he is and always will be my Everett regardless what his state of being is... However, I do believe that he has turned a corner and it is nice to see a calmer, more tempered and happier child.  He is waking up calmer, actually, he is sleeping in more.  I wonder if this is his bodies attempt to heal and restore itself.  For weeks he was waking up and immediately going right into highstrung, over-active behaviors.  It unfortunatley set the tone for the day because it caused his brother to react and set his tone as well.  I would awaken to the two of them running around, jumping on the bed, yelling and already fighting. This would continue for the rest of the day.  A vicious cycle. Ugh.

     With the days off to a better start, I am seeing it continue on to better days.  Everett is exhibiting better self control, he is able to reason again. When he was in the grips of Pandas, he could not reason at all. Every little thing was unraveling him.  Before all this started up again,  Everett was really showing impressive signs of growing/maturing emotionaly. He was abe to assess a situation that was frustrating to him, think it through, maintain emotional control, problem solve, and make applicable choices.  I was amazed again and again with his emotional growth.  When he turned on a dime and lost all of that growth, it was very disheartening.

     He is now also able to go into rooms by himself again.  Just yesterday, he went downstairs for the first time in weeks by himself.  Now, he asked if his brother was comming down, (so that showed some trepidation), but he did it!  He is also going upstairs by himself into his bedroom to retreive things. And just this morning, he stayed upstairs and got dressed by himself.  He was not able to do any of these things in past weeks.  He is able again, to reason the fears.  I am not sure what can pass thru his mind during his episodes, but they seem to involve fears of unknown entities...Recapturing his reasoning, he apparently is able to put these "entities in a safe place". 

     All around, Everetts has a brighter outlook, is happier and laughing again.  A more content child.  Interestingly, about four days ago, I came home from work, and within two minutes I could feel the change in my child.  I looked at my husband and said "Everett has turned a corner". Strange, it was his vibrations that I felt, or there lack of.  He was giving off calm, less erratic vibes.  Almost like a temperature change.    I was amazed at how I was instantly able to just "feel" the difference in him.  I suppose it is that phenomenom of a mother's connection to their child.  

     I would put Everett at 80% recovered.  I'll take it. Two weeks ago,  Dr. K said to give him a couple more weeks to see if the effects of the antibiotics would continue to heal him.  It appears that it has.

     Unfortunately, two days ago, Everett fell and knocked his top front tooth out as well as chipping a bottom tooth (his new one).  When I ran to see what the crying was for and I saw the bloody gaping hole that used to posesse a tooth, my first thought was not of my childs pain from the fall, but "Oh Know...this is going to start it all over again!".  Of course, I collected my thoughts, bent down, hugged my child, wiped away his tears and told him he was going to be okay. 

     So we will see if this restarts another episode.  According to Dr. K, the episodes can be a bit random.  Sometimes his immune system goes haywire, sometimes not.  I am going to call him to update him so I will see what he has to say.

    He as a lot of baby teeth to lose...ugh.

     I will be in touch.

    

PANDAS: It's Back

     Monday morning Everett, after having a calm weekend woke up all disorganized again.  I immediately felt his glands, they were swollen again, and his Tonsils were red and enlarged.  I called Dr. K., concerned about the reemergence of his Pandas.  We started him back on antibiotics, hoping to curb any full scale Pandas issues.  Well, today is Wednesday, and Everett is full tilt.  Once again, screaming, screeching randomly.  He is again jumping, running, twirling into everything.  His twin has taken to hitting and kicking him because his tolerance is low, being that we have had such a short window from the last episode to emotionally recover.

     I asked Dr. K. if this was just a continuation from the most recent episode?  An example of the typical wax/waning that can happen?  Or is this a new episode?   He said it was hard to tell because of the new Tonsillitis infection.

     This morning, Everett's behavior was as bad if not worse then yesterday.  His glands are more swollen and his Tonsils are no better.  I will call Dr K. and see what he thinks.

Qannie