P.A.N.D.A.S Treatment For Cooper



It's been almost 2 years since our journey with PANDAS began. PANDAS stands for -Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus). PANDAS is a result of a misdirected immune system response. The body's immune system attacks the basal ganglia area of the brain instead of the Strep bacteria. This attack results in brain inflammation that effects a child's movements, learning, and emotions.  The symptoms can include: OCD, tics (similar to Tourette's), anxiety, ADHD, rage/behavior regression, anorexia, sleep disturbances, memory issues, developmental regression, fine & gross motor difficulties, sensory issues, depression, deterioration in school performance.  This disorder is frequently misdiagnosed or not diagnosed at all. It is my hope this will change in the near future. There is a strong parental movement to bring awareness & recognition to this disorder. PANDAS/PANS has a national awareness day of Oct. 9th & there is a documentary out by Tim Sorel entitled "My Kid Is Not Crazy- A Search For Hope In the Face of Misdiagnosis". This documentary follows 6 families journey with PANDAS. This was filmed over a 3 year time frame. Please click on the link at the bottom to watch the film's trailer & to learn more about this powerful film.

This disorder started for Cooper with a visit to the doctor with fever and a sore throat in May 2015. He was swabbed & cultured and had a negative result, therefore, he received no antibiotics. In June 2015, we began to notice Cooper started whispering  and talking so low no one could hear him. He started being anxious about things that he normally wouldn't and he seemed to be in over drive or basically all over the place, easily frustrated, and he began twirling his hair until it was in knots & had to be cut out. This alarmed us because Cooper is very laid back and easy going.  Little did we know this was just the beginning of a horribly confusing, and devastating journey.
 
Cooper's journey with PANDAS has been long, heartbreaking, & complicated. It took us 8 months to figure out what exactly was causing Cooper's debilitating symptoms. In the course of this illness, Cooper had Strep 3 times in a short period of time. By the 3rd exposure his symptoms became severe, and his immune system and body were wearing out. He went completely mute, and is still not talking as I write this story. Through out this journey Cooper lost over 20 pounds, and was hospitalized for 9 days where he was put on a feeding tube that essentially saved his life. During the hospitalization, his resting heart rate was 47, and his kidneys were threatening to shut down. The pediatric neurologists at the hospital would not treat him for PANDAS because they did not believe it existed, so we discharged with a diagnosis of malnutrition. I was not a happy Mom to say the least.  In the meantime, Cooper became immunodeficient, which made his immune system unable to fight off infections & illnesses properly. That is also one of the primary reasons we still receive homebound services from the school. Cooper is now in high school although he has never physically been in the building. Cooper's pediatrician had never heard of PANDAS, and many people involved with the medical community know very little about it. Cooper's psychiatrist is the one that finally led us down the road to the PANDAS diagnosis.  I was lucky to find the Alabama PANDAS Support Group on Facebook, which led me to a  nurse practioner from Dothan that was so helpful & knowledgeable about PANDAS.  She recommended a PANDAS Specialist in Georgetown outside of Washington DC, Dr. Beth Latimer.  There are no PANDAS Specialists in Alabama. Dr. Latimer is a pediatric neurologist, who has devoted her career to treating PANDAS, and has treated children with PANDAS for over 20 years. Due to the lack of specialists, we were on a 3 month waiting list to see Dr. Latimer.  We traveled to Georgetown on Aug. 10, 2016.  Dr. Latimer did her exam on Cooper and confirmed what we already knew, that Cooper did in fact have PANDAS. She put him on a high dose antibiotic & started him on a 6 week steriod taper.  It did very little to help with his PANDAS symptoms. On our 2nd visit to Georgetown on Oct. 12 & 13th, Cooper was given 2 days of High Dose IVIG (Intraveneous Immunoglobulin). This is a super dose of antibodies that help to reset the immune system and are put into the body via an IV.  If PANDAS is caught & treated early most children will respond to antibiotics or steroids. IVIG is done for more involved cases of PANDAS.  After Cooper received IVIG treatment, the next course of action was to have a tonsillectomy & adenoidectomy. Cooper had his removed 3 weeks after IVIG. Part of PANDAS protocol is to have the removed tonsils cultured to see what is in them in case you need to change the antibiotic to kill what was found in them.  Cooper's tonsils contained Strep F in the middle of the tonsil (which was probably why when he was swabbed for Strep it was negative  because it was in a crept in the middle of the tonsil).  You are given a 3 to 4 month time frame for IVIG to work, and the bad news was that we saw little improvement in that time. This was very upsetting for us because there is a good success rate with IVIG response, and some children recover completely after treatment. I personally feel it was not effective because the Strep was still present in his body in the tonsils. We also had to see the Infectious Disease doctor because no one had heard of Strep F (not even Dr. Latimer, which really freaked us out!)Strep F is a newer strain of Strep, and it has to be treated with stronger antibiotics such as Vancomycin, Cipro, & Clindamycin.  Soon after, Cooper came down with the stomach virus and due to him being immunodeficient it hit him really hard and we had to visit the ER 2 times. He lost over 6 pounds and his kidneys became compromised again. We had to get sodium levels every couple of days which meant blood was taken every couple of days to see if levels went down or he would be hospitalized. Finally, after 3 weeks his levels went back to normal. In the meantime, Dr. Latimer became very concerned over this as well and recommended that Cooper receive the next step in PANDAS protocol, which is Plasmapheresis. Plasmapheresis is only used on children with severe cases of PANDAS, which of course is Cooper.  This month(March), Cooper will have been on the feeding tube for a year, and in February it was a year since he has talked.  Our Cooper has been through more in the last 2 years of his life than many of us as adults have ever been through. It has been devasting to our family to watch our child deteriorate physically, mentally, & emotionally  before our eyes. The only positive thing that has come out of this is my ablity to rely on my faith and trust in the Lord because I know he has awesome plans for Cooper. The good news is that PANDAS can be treated & cured. Many children have recovered from it & the brain can be healed. 
 Even though it has been 20 plus years since PANDAS was discovered, many insurances consider treatments experimental and will not cover them. Unfortunately, our insurance (Cigna) does not cover IVIG or Plasmapheresis. Due to the insurance not covering, you have to pay for treatment up front or pay by private pay. We were able to save for 3 months for IVIG. The cost  was $13,600 and that was for the IVIG and nurse care & did not include our lodging or flights. This wiped out our savings, but we were fortunate enough to not have to ask for help or borrow money. 

We are now at the point where we are asking for your support and donations for the Plasmapheresis treatment.  I had to resign my teaching position to care for Cooper.  So our family is dependent on one income. Through this journey we have been blessed with the ability to pay for most of Cooper's care, medical bills, and treatments. However, the Plasmapheresis procedure is going to cost $35,000  up front or private pay due to our insurance not covering the procedure. Plasmapheresis or plasma exchange (PEX) is more expensive because Cooper must be hospitalized for 5 days to receive this treatment. In this procedure, Cooper's blood plasma is taken out of his body and a centrifuge cleans the plasma then puts it back into his body. The success rate with plasmapheresis is higher than that of IVIG. It also does not require months to see if the treatment works, its usually days to weeks. I believe this treatment will help bring Cooper back to us!  
 The plasmapheresis procedure is set to take place the first week of April, which only leaves us only a month to raise funds. Any amount that you can contribute we will be grateful for! If you can't contribute please  pray for Cooper to be healed & for our family!

Blessings & Love,
The Acton's- Cliff, Leigh Ann, Cooper, & Camille

"Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God is with you wherever you go. " Joshua 1:9


Links:
http://www.mykidisnotcrazy.com/

http://www.pandasnetwork.org/

https://www.pandasppn.org/