"My daughter was fine last week, last month...and now we've lost her! All of a sudden, over night, something happened...where is my child!?" This terrifying thought is exactly what happened to us last month, little did we know our daughter, Madeline, was suffering from a pediatric disorder known as PANS or PANDAS. We can actually pinpoint the exact week that she suddenly changed. I want to share her story so other parents who may experience the same or very similar experience with their child can know about this disorder/syndrome, what to do and how to treat it. As a parent you begin to worry about your child's health from the time you find out they are growing in your womb. You worry until you hear that beautiful swishing sound, their heartbeat, coming from the Doppler on your belly. You worry until you see that tiny little body on the ultrasound screen and hear that everything checks out fine. You worry until you hear that first cry moments after they are born. Need I go on? As a Christian, I believe and know God the Father tells me not to worry...but I still do. It's human nature.
So when your well adjusted, school attending, straight A maker, soccer player, bookworm, dog loving, bike rider, good eater, excellent sleeper, little artist
suddenly displays significant change in behavior such as:
compulsive & repetitious hand washing, mental activities such as incessant praying & repeating certain words or mantras, fear of germs or being contaminated with bodily fluids, throat clearing & coughing tic, urinary frequency, wide pupils, anxiety about not completing something properly, intrusive thoughts and words, overnight onset of anxiety & panic attacks, and emotional lability...YOU WORRY. Because this is exactly what happened to Madeline. At first I figured that our little girl was growing up, and the emotional lability was just a sign that her body was going through puberty changes. But my husband sensed something else was wrong, because all of a sudden she was distant and seemed "not there". She was just not her "normal self".
It was time for some mother/daughter talks to try and figure out what was going on. I found it strange that she would now cry about things that never seemed to bother her before. She also had trouble articulating her thoughts and relaying them to me. All of a sudden her answer to everything was, "
maybe, maybe not...maybe it's good, maybe it's bad." Why was she suddenly so unsure of herself, appearing to be anxious about anything and everything? Again I pawned it off to her hormones possibly changing in her body. But to make sure nothing bad had happened at school, I contacted her teacher. Her teacher told me that Madeline had not been displaying any of these behaviors at school. There were a few changes going on like having a student teacher in their class, also there was a group of counselors meeting with the kids every week to talk about self esteem and good character - but she felt like these changes wouldn't have a negative affect. The students were also preparing for STAAR testing, so maybe she was a little stressed or worried about this? All of this sounded fine, and unlikely that it would cause this sudden behavior change. Hhhmmm, then why the sudden change in her?
Next we noticed her mealtime and bedtime rituals were being disrupted. Madeline was suddenly unable to fall asleep at night. She would come crying to me saying that she feared she was praying wrong. What!? I thought, this little girl has been raised as a Catholic Christian since she was born. She's attended 4 years of religious studies. She's never had trouble praying or talking to God. She's always logically understood her Faith. And now she's upset about praying wrong!? She was obsessed with making the Sign of the Cross correctly. Was it wrong if she didn't close her eyes or bow her head? Did she not say that prayer right? Would God be upset with her? This was all unsettling. And no matter how many times I assured her there was no wrong way to pray and that God always knows what's on her heart - her fear and anxiety still remained. She couldn't go to sleep until it was right in her mind. At mealtimes she wasn't okay with saying one prayer with her brother. She had to say it over and over again, leaving her food to get cold and her brother wondering why she was praying like crazy! At mealtimes she also had to obsessively wash her hands, 8, 9, or 10 times! She would scratch her nose, she would have to wash her hands. Our dog would rub against her leg, her hand would touch her leg, she would have to wash her hands. She would touch a crumb on the table, she would have to wash her hands. What is she doing!? My husband and I were perplexed! Why was she behaving like this?
I contacted her teacher again asking to speak with the group counselors to investigate further. Why was our little girl worrying so much? The school counselor called me. I described what was happening. She explained that it was normal for children to go through phases of childhood anxiety. And that is probably what all this was. She said that maybe all of her sudden compulsions and obsessions were coping mechanisms and how she's dealing with her anxiety. That although she may not have control over certain things in the life of a 3rd grader (such as the STAAR testing at school), she did have control over washing her hands and saying her prayers. But did she really? I mean she was upset she couldn't get it right. So my husband and I were now convinced she was suffering from anxiety. But was it normal for a child to suddenly display obsessive compulsive behaviors in reaction to stress and anxiety? I reached out to family and friends, posting about these new changes on my blog and Facebook seeking their input.
A friend commented and suggested this book, "What to do when you worry too much", she said it helped her son get over anxiety. I went on Amazon to find out more about this book. It is a self help book for children and their parents teaching techniques to use to overcome anxiety. It sounded just like what Madeline needed! I started reading through customer reviews, and felt somewhat relieved that my child wasn't the only one having trouble with anxiety. I noticed some parents mentioning this helped their child who suffers from OCD (Obsessive Compulsive Disorder). Hhhhmmmm, could Madeline have OCD? But she's never displayed OCD behavior before? I kept reading through the customer reviews when I also noticed some parents mentioning that their child was diagnosed with PANDAS and this helped their child get over any lingering anxiety. What was PANDAS? I had never heard of it before. So I looked it up...
PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. When strep cannot be linked to the onset of symptoms, one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes). Researchers are pursuing the hypothesis that the mechanism is similar to that of rheumatic fever, an autoimmune disorder triggered by streptococcal infections, where antibodies attack the brain (instead of the infection) and cause neuropsychiatric conditions. If antibiotics are administered quickly –within the first 30 days of initial onset – there is hope that the PANDAS autoimmune process will stop permanently.. GULP, a light bulb goes off in my head and my mommy gut twists and turns. I think this is what has happened to Madeline!!! You see a couple of weeks before this sudden behavior change started, Madeline was sick with a cold or bad allergies. She had a runny nose for a couple of weeks, a sore throat and just felt run down. I gave her some children's allergy and mucous meds. And that was that. It was still lingering a little when these new behaviors appeared.
Right away I make an appointment with her pediatrician. I write down all my observations of her behaviors and all of my questions. Luckily our pediatrician has one patient who is diagnosed with PANDAS so she wasn't opposed to my questions (this disorder/syndrome was only discovered 15 years ago and is still "new" to the medical field, and some doctors question it). We talked about all this possibly being OCD. She said that sometimes a traumatic experience can trigger OCD. But nothing traumatic has happened in Madeline's life. And she has never displayed OCD tendencies before. So they do a rapid strep test, it comes back negative. This of course does not rule out strep, she could have still had it. So her pediatrician orders blood work. She said AOS titer numbers in her blood can also tell us if a strep infection had happened recently. She also was going to check her kidney, liver and thyroid functions. So we wait, a day or two for the results to come back. In the meantime, Madeline continues to display her OCD behaviors and anxiety. We were terrified. But we didn't let Madeline know that. What was going on with our baby girl!? We just want her to be okay.
A day later the pediatrician calls and tells us the blood work looks normal. The AOS titer numbers were below 200 and everything else looks good. What? This can't be. But she's been sick, still is. I had researched more about PANDAS and PANS and learned that other infections and illnesses could trigger this as well. I just knew this had to be it. I pushed the idea of just treating her with some antibiotics. I mean her cold infection was lingering. We could treat with antibiotics for that, and if it also helps the behavioral symptoms subside too, then great - we will know that it could possibly be PANS. Her pediatrician agrees to treat with antibiotics, and also refers us to see a pediatric psychiatrist and neurologist. So I make my husband run to the pharmacy to get those antibiotics right away! She prescribed Azithromycin, and we gave Madeline her first dose that night. We had to wait 6 days to see the pediatric psychiatrist. So we prayed, prayed her symptoms would subside. I kept a daily journal of her behaviors. And within a couple of days of starting the antibiotics we notice some of her OCD behaviors are subsiding! Hallelujah! She quit obsessing over hand washing. Her germ and contamination phobia got about 90% better. Her anxiety over praying lessened. And for the first time in over a week she finally answered "Yes mom" instead of "maybe, maybe not". She was able to articulate her thoughts again. Although occasionally the unsure and anxious answers would still appear. By the time the weekend came before seeing the psychiatrist, we felt like our daughter was "returning" to us. We felt like we were starting to wake up from our "parent nightmare".
My husband and I both took Madeline to the pediatric psychiatrist. In the car drive there she was a little anxious, wondering why mommy and daddy were making such a big fuss over her "getting better". The therapists room was inviting and colorful. I think Madeline felt at ease. She was very patient and kind with Madeline and got Madeline to open up about some things she's having anxiety about. Madeline cried a little when mentioning her feelings being hurt by kids at school who tease, and also about being unsure at times. Then my husband and I were asked a bunch of questions, starting from my pregnancy with Madeline, her health history, our families mental health history, her relationships with others, what type of personality she has, how she does in school and with friends. She came to a conclusion that Madeline was an intelligent, well-rounded girl, that she appears to be healthy both emotionally and physically...and that all of this was triggered by PANDAS or PANS. That her respiratory or sinus infection triggered her immune system, which then attacked her brain. Thankfully the treatment of antibiotics helped resolve this issue in her body. And if it happens again, we'll know to treat her with antibiotics right away. As for some of her lingering anxiety and unsure-ness she suggested the following books to help Madeline overcome it.
She said the techniques they teach in these books may help Madeline when she maybe gets stuck on a thought in her head or worries too much about something. I asked her how we can help her to know what to do in situations where maybe a mean kid at school will tease her. Or if a friend makes her feel guilty about something. Or if the changes that she will go through over the next few years with her body make her anxious. She actually suggested the American Girl book series. She thought Madeline would be able to relate to them, enjoy reading them and get a lot out of them to boost her self esteem. So I got her the following books:
I hope Madeline's Story will help other families whose child may have PANDAS or PANS. Research shows children with PANS, PANDAS and even OCD often go months or years before being diagnosed. Their symptoms worsen, become chronic and harder to overcome. I believe God gave me my mother's intuition, whether you believe that or not - go with your gut! If something doesn't seem right, fight for your child to figure out what's wrong. And don't stop until you get answers. I am so thankful to Madeline's teacher, counselor, pediatrician and psychiatrist who all got on board - caring about our daughter's well being and willing to investigate. This whole story took place within a 3-4 week time span. We were fortunate. And we can now sympathize with those families that struggle with these disorders. It's hard on the whole family! And don't loose HOPE. For our family, God carried us through this with hope and strength. Lastly, know you could never love your child too much. Tell them you love them everyday. Hug and kiss them everyday.
P.S. Check for informative links at the bottom of this blog on PANS and PANDAS.
And check back for follow up posts!
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