Our family spent several months on the PANDAS roller coaster - the ups and downs corresponding with Dora being on and off antibiotics. She would appear to be getting better and out of nowhere would fully regress and at times end up worse then when we first started her treatment. I met with her pediatrician to discuss this seemingly never ending cycle late May of this year. She had seen this pattern with patients before and said in every situation so far she was able to identify a strep carrier in the household. This meant that my husband, step son, and myself all were to be tested first by rapid strep and if that was negative - by blood. Since I was the only one there for the appointment she performed my swab that day and as soon as she looked down into my throat and saw my tonsils were missing she stopped to ask me a few questions.
I explained to her my personal history with strep (also listed here in my previous post), but was quick to assure her I had not contracted strep since my tonsils were removed six years ago. The doctor corrected me by saying, 'No, you mean you haven't had a sore throat since your tonsillectomy, but I can assure you that you had and probably still have strep.' She went on to explain that the constant exposure Dora has had to strep from her time in the womb on, would make her a very difficult case to treat. Her body does not know - and has never known - that the step bacteria should not be there. I had continued to feed her this toxic poison through my nurturing milk and endless kisses.
Along with the blood test for strep antibodies she also ordered an ANA test, measuring autoimmune activity, and a genetic test for MTHFR mutations (this mutation is related to multiple conditions that affect both the immune and nervous systems). My daughter and I tested positive for both - linking the source of her PANDAS roller coaster to her strongest advocate...me.
I wrestled with the natural guilt and denial that surfaced but once I let reality creep in I could clearly see that my own body was fighting strep and facing its own autoimmune challenges. For the longest time I thought I was permanently tired from working and being a mom, not realizing there could be something else going on and that it did not *have* to be so exhausting. We started the same treatments and I am working to keep myself healthy so she can be. It has actually brought us closer and she is more likely to try something new if I am doing it with her...like our newest adventure - going gluten and dairy free!
Friday, December 7, 2012
New Book Now Available for PANDAS Children
Sunday, December 2, 2012
Our Pre-PANDAS Diagnosis Timeline
2002 - July: I contracted Strep Throat while 7 months pregnant.
September: My daughter Dora Grace was born.
2003 - Dora was 6 months old when I contracted Strep while still nursing her.
2004 - At 18 months Dora started showing signs of OCD. I noticed it personally, but was also approached by her caregiver with concerns who felt it was something to watch.
2005 - I had a Tonsillectomy at age 25 after consecutive cases of Strep Throat and Tonsillitis (every 3 to 6 months).
2006 - I shared concerns with her pediatrician regarding increased OCD behaviors during her 4 year check up. Her doctor advised me to go along with it and give Dora control over the 'reasonable' things that she was obsessing over...most of which were routines and rituals, nothing that was interfering with her everyday life.
2006-2011 - I noticed ups and downs in her behaviors over the years. Specifically with her tantrums, crying spells, and OCD routines. As time passed my husband and I even linked it to the times when she was sick but passed it off as: she wasn't feeling well, that's what makes her feel comfortable and safe, and even to her inhaler that she only needed during those come and go illnesses...convinced she was simply reacting to the steroids. The good thing was, she would always get better and back to normal soon afterward.
2011 - Midsummer - Sudden and drastic change in behavior, new worries, new obsessions...new Dora. Everything was magnified. I started by reaching out to a psychologist hoping Dora would feel comfortable telling her the root of the daily crying spells and outbursts...since the only answer I received was, "Nothing!!" or "I don't know!" After a long hour of silence and Dora leaving the counselling office angrier at me than ever before I decided to go to future appointments alone. I spent the time explaining Dora's behaviors and learning the best way to help her deal with them. Even though things were becoming manageable with the new tools I had gained, my concern continued to grow because she still was not feeling better and a new school year was approaching.
Our psychologist recommended I take Dora to her pediatrician to be evaluated for anti anxiety medication. Immediately her doctor suspected PANDAS and did a blood test for Strep. As expected the results came back positive with high levels of Strep Antibody and Dora began her first round of antibiotics for PANDAS. This is when I first heard of and started to research and understand this complex disorder. The more I learned the more I could see PANDAS had been our struggle all along.
September: My daughter Dora Grace was born.
2003 - Dora was 6 months old when I contracted Strep while still nursing her.
2004 - At 18 months Dora started showing signs of OCD. I noticed it personally, but was also approached by her caregiver with concerns who felt it was something to watch.
2005 - I had a Tonsillectomy at age 25 after consecutive cases of Strep Throat and Tonsillitis (every 3 to 6 months).
2006 - I shared concerns with her pediatrician regarding increased OCD behaviors during her 4 year check up. Her doctor advised me to go along with it and give Dora control over the 'reasonable' things that she was obsessing over...most of which were routines and rituals, nothing that was interfering with her everyday life.
2006-2011 - I noticed ups and downs in her behaviors over the years. Specifically with her tantrums, crying spells, and OCD routines. As time passed my husband and I even linked it to the times when she was sick but passed it off as: she wasn't feeling well, that's what makes her feel comfortable and safe, and even to her inhaler that she only needed during those come and go illnesses...convinced she was simply reacting to the steroids. The good thing was, she would always get better and back to normal soon afterward.
2011 - Midsummer - Sudden and drastic change in behavior, new worries, new obsessions...new Dora. Everything was magnified. I started by reaching out to a psychologist hoping Dora would feel comfortable telling her the root of the daily crying spells and outbursts...since the only answer I received was, "Nothing!!" or "I don't know!" After a long hour of silence and Dora leaving the counselling office angrier at me than ever before I decided to go to future appointments alone. I spent the time explaining Dora's behaviors and learning the best way to help her deal with them. Even though things were becoming manageable with the new tools I had gained, my concern continued to grow because she still was not feeling better and a new school year was approaching.
Our psychologist recommended I take Dora to her pediatrician to be evaluated for anti anxiety medication. Immediately her doctor suspected PANDAS and did a blood test for Strep. As expected the results came back positive with high levels of Strep Antibody and Dora began her first round of antibiotics for PANDAS. This is when I first heard of and started to research and understand this complex disorder. The more I learned the more I could see PANDAS had been our struggle all along.
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