My daughter was 7 years old when her personality completely changed; she went from a happy go lucky little girl to a paranoid child with unrealistic fears of tornadoes. It was so bad, she could not be near windows, all of the shades had to be closed, and was not be able to leave the house if it was dark or raining. I also had to have her seat in school moved away from the windows. Her fears were severe and real to her and as a result had full-blown panic attacks. She not only had obsessive-compulsive thoughts but also did cartwheels non-stop as if she was driven by a motor. She had severe separation anxiety, wet the bed, hallucinated, paced around the house at night not sleeping, and when she did sleep, it was in bed with us. She had sensory issues; she had trouble with her socks and pants, just the feeling of them on her skin would bother her.
Everyday I brought my daughter to school she cried, she cried so much the nurse would call and I would have to come take her home. I was so lucky I did not lose my job and was able to bring her to work with me. Then there was a really bad rainstorm and she was so distraught that she stated she wanted to die. I immediately brought her to the hospital, where I saw a physician who thought she might have PANDAS. They did a rapid strep test but it came back negative. At the time, I did not realize the antibiotic she was on for a urinary tract infection could mask the results.
We followed up with her pediatrician who put her on adult doses of anti-anxiety medications, doses so high that the pharmacy called concerned. In my opinion, these medicines also contributed to hallucinations she was having.
DIAGNOSIS & TREATMENT
I poured over case studies on the Internet and was convinced regardless of the negative rapid strep test, PANDAS was still the proper diagnosis. Two months went by with no changes, and I contacted the emergency room doctor to see if she could run a blood titer to check for strep in her system. She did have an elevated titer so was put on an antibiotic. It took another year and a half of low dose antibiotics to see continued results.
She had seen at least 5 therapists, 2 psychiatrists, a neurologist and 3 pediatricians before being treated. She lost 18 months of her childhood before proper treatment.
RELAPSE & REMITTANCE
After treatment, she got about 70% better for about 3 years. She still had anxiety but was able to manage well enough. But then she got a severe cellulitis eye infection in which both eyes were swollen shut; she was sent by ambulance from the local hospital to the large city hospital. She received the strongest IV antibiotic to control the infection. She had pockets of fluid in her eyes, which required surgery. This is when we started re-living the nightmare! We honestly thought antibiotics had treated her problem and we would never be here again! This flare started with major fears and anxieties: she thought her teeth were falling out, that her appendix burst and started having chest pain. We had EKG's, XRAY's, Ultrasounds, and finally our pediatrician suggested seeing someone at a mental health facility. I reluctantly took her there, where they separated us by a locked door, had an evaluation with her and then brought me in. I knew my daughter did not belong there, or did she? It is so hard to see your child decline like that, you wonder why this is happening and if this will be for the rest of her life. We started back on our journey with PANDAS. Thank God I had started a support group in the midst of all of this to ensure other people would not feel alone; I needed these people now. When my daughter first got sick there were no resources, only case studies on the Internet, so it was a very lonely time.
She has since been treated again for Strep and also has tested positive for Lyme, Bartonella, Erlichiosis, Mycoplasma pneumoniae. In addition to these infections, she has POTS. She also had neck swelling which has since gone away with antibiotic treatment. They think she is a strep carrier so does not show typical symptoms. I feel as if Strep and Lyme have both been culprits in her illness. She is 17 now and is still being treated, we are hopeful that with this new treatment plan she will continue to get better and not remit again.
We also have a son that was diagnosed with a much more mild form of PANDAS which did not require long-term antibiotics to treat.
We are thrilled announce the launch of a new program,
Every Family Has A Story
These are stories from our community. These are our stories. You are NOT Alone.
No one can tell the stories of what it is like to live with PANS/PANDAS like those that have lived it. The list of symptoms and descriptions of various treatment protocols does not bring the condition to life. The family telling their individual story is what illuminates the day-to-day struggles and triumphs our children and families experience. The aim of sharing these stories is to help families not feel so alone in their struggles, to let them know there is a family out there just like them, and ultimately to let them know that there is hope.
We are launching this program with eight stories and will continue to add more. We will be highlighting a couple at a time every couple weeks on Facebook, Twitter and in Newsletters. As more stories are contributed, a wider picture of what the condition is like will form including how many similarities there are and how many differences there are in its manifestation, in the path to diagnosis, in treatment options and in the outcomes.
You can read all the PANS Family Stories by clicking on the Family Story category or Read More...
If you are interested in submitting your PANS Story, please email our PANS Stories Coordinator.
NEPANS Board Members & Special Guests
Many Blog entries are long enough to go onto a 2nd page. Please click Read More in the bottom right of some blog entries!