God Gives Big Bear Hugs!

          What a stressful week this has been.  It has been hard on both my husband and I.  Test results are coming in, and more tests are needed right away.....rush rush rush, go here go there.  Poor Hayden has been "poked" five times in the last five weeks.  The sweet staff at quest labs told Hayden they are testing his blood to see if he has spiderman blood! This got his attention, and when they told him "Yep! Looks like spiderman blood to me" he was so excited!!  He is now proudly telling everyone that he has spiderman blood. :)
            Our pediatrician called last night with the results of the Cunningham Panel.  This is a new test done by Moleculera Labs, Inc.  It is the only test for P.A.N.D.A.S. and it cost almost $1000.00!!!  We are hoping Blue Cross Blue Shield will help cover half of it.  Anyway, holding my breath.......Hayden tested "P.A.N.D.A.S. likley".  I have never been so happy to get bad news!  It confirms what we have been going through for the past six months!! It just gives us something to stand on.  We are still waiting for this weeks lab results to come in, but we are a go for high dose IVIG next week at Hill Park Medical Center!
            On top of all this, we found a local doctor at Emanuel Children's Hospital that is willing to start working with us under "immune deficiency" which might help us get low dose IVIG covered by our insurance and we would not have to travel out of state.  Low dose IVIG is not the best but it is something!!!
           We believe in God.  We trust in him.  We love him.  We know, God is good, and that he loves us.  No matter what, God is with us.  God also knows us...so well in fact that the bible says he knows the number of hairs on our heads (Matthew 10:30 & Luke 12:7).  God knows that I love to hug.  I think I am kinda known as a "hugger".....well, today God gave me the biggest bear hug, and it felt so good.
            

LYME?

Just when I think Hayden is doing good, we have a bad day.  Not just a bad day, a horrible gut wrenching, I would give anything to take this away from him kind of day.  Yesterday (Saturday) my husband and I had to work, and my wonderful parents, took Hayden for us.  When I picked him up, I could tell right away he wasn't doing well.  He was emotional, clingy, whiny, anxiety, acting like a baby, at times super hyper, and other times asking me if he can lay down to rest.  The worst part of it was the pain.  He has been doing so good during the daytime, but yesterday it was very clear.....he hurt bad.  I would catch him moving his fingers and manipulating his hands.  He would sadly tell me, "mom, my whole body hurts", but he didn't have to tell me, I could tell just by watching the way he moved his body.  The really scarey thing that started yesterday, is twice I saw Hayden have something similar to an absent seizure.  He is talking and playing, and then suddenly, for a few seconds, goes into a cold stare, blank face, and almost freezes.  I have gone through so much with him over the past four months that I never panic, but I know something is going on.  I called my mom, and she said they also saw a couple of those while he was at their house.  So now I know it has happened at least four times in the past 12 hours.

I follow a few P.A.N.D.A.S. groups on facebook, and I have learned so much.  There is so much unknown.  So much speculation, trial and error, "here is what helped us", etc and that is why these groups are helpful.  I read a lot of threads on Lyme desease and it's connection to P.A.N.D.A.S.  I often wonder about Hayden and Lyme.  Our dog had a tic from our backyard last year.  The extreme pain in Hayden's body sounds more like Lyme, and now these little absent seizures or whatever they are make my mommy gut tell me Lyme is very much a possibility.  Hill Park Medical Center has ordered the right test to test us for this, but we won't hear the results for a couple of weeks. 

Hayden is currently on antibiotics until we go to Hill Park Medical Center for treatment.  He is doing rather well.  No tics at all!!!!   He still has major separation anxiety, and fears if he is not in the same room as us.  Getting him ready for school and dropping him off is an ordeal.  Once he is at school and having fun with his teachers and friends he does fantastic!  At home he is still not his normal self, but much much better then we were in April and May.  We still have age regression and some OCD aggression (new for us).  He is still in pain, especially at night, when he is still and trying to sleep.  It is still heartbreaking, and difficult to watch as a parent.  It has been hard to determine normal four year old behavior vs P.A.N.D.A.S behavior.  We hear from other P.A.N.D.A.S parents this is all normal, and they all feel the same way we do, which is comforting in its own way.

This is where we have decided to go for help (see link below).  They are the closest to us, and we have talked to other parents who are very happy with them.  They really seem to be experts in this and have been great working with us and our pediatrician over the last few weeks on getting tests ordered here in Oregon.  They have ordered an echo cardiogram,  the Cunningham Panel (http://www.moleculera.com) and a whole list of labs including testing for Lyme and mycoplasma.   We are going the last week in August for IVIG treatment (not covered by INS).  Hill Park seems to be so caring, and they are open and aggressive in treating P.A.N.D.A.S.


http://hillparkmedicalcenter.com/pediatric-autoimmune-neuropsychiatric-disorder-associated-with-streptococcus-infection-pandas/

Our family decided to create a blog about Hayden's P.A.N.D.A.S. story for many reasons.  One, we hope that somehow, our story will help another family out there searching for answers for their child.  Two, so our friends and family can keep up to date on Hayden' s journey, and how Hayden is doing.  Three, because we are so touched with the outpouring of kindness and generosity from friends, family and complete strangers.  How can we begin to thank you?  We are blessed beyond measure.
            I have been posting updates on facebook, but I will repost them here so that we can start at the beginning of our journey, which started March 19th, 2013.

Quick update: After keeping Hayden home for a couple of weeks so that we could give his immune system a break...... we put Hayden back in school a week ago last Monday. He started complaining of more pain at night and by Thursday he had a low grade fever and felt so bad he said he could not walk or get out of bed. Scott carried him to our pediatrician's office. He had strep again. We are back on antibiotics and we might stay on them for a couple of months until we can be seen by a specialist. We have appts scheduled with a doctor in Maryland and one in Arizona in September (not sure yet which one we are going to pick) and as a back up we have another appt with a doctor in CT in mid December. I have talked to several moms across the country who have kids with Pandas and that has been really helpful. This week Hayden is back in school and doing fine. He has his ups and downs, but night time seems to be be the hardest for him to deal with the pain. Prayers for direction on the best doctor would be nice. Love u all!

My new big boy bike!!!!