***Your Words…A New Guest Blog.***
PANDAS Sucks exists to tell our collective story about PANDAS/PANS. One way we do that here is that YOU have the option to write a guest blog for the Your Words series. This newest guest blog comes from Caroline and Bill Hartenberger. It’s a PANDAS Trifecta because all THREE of the Hartenberger children have PANDAS: Billy, Carly, and Melody. In this horse race, PANDAS are zebras though, and it can be a battle to get one child diagnosed and treated effectively, let alone three! And three children that presented with PANDAS in three very different ways and years apart. WOW!
If you want to tell your story in a guest blog or write a commentary about PANDAS/PANS, drop me a line here. I want to give a HUGE THANK YOU to Caroline and Bill for agreeing to share their family’s story. Here it is: A PANDAS Trifecta: Billy, Carly, and Melody.
Our journey with PANDAS spans many years and has taken hold of all three of our children at some point in their lives… all with varying degrees of severity and all with completely different symptoms.
Our children now, in 2017, are: Billy-20, Carly-17, and Melody-11. But our first experience with PANDAS was with our daughter, Carly, when she was 7 years old, in 2007. One day she woke up with urgency after urgency to use the bathroom. We could barely get her off to school. Every few minutes she would feel the need to urinate. She also started washing her hands over and over and over again… scrubbing them clean…essentially making them raw. Naturally, we took her to see our pediatrician, Dr. John Hart, thinking she had a urinary tract infection/UTI. He figured the same…until the test came back negative. Dr. Hart decided to treat her with an antispasmotic prescription that would help stop the urgency to urinate (not an antibiotic)…only it didn’t work. This went on for weeks, plus a new symptom cropped up…the need to confess her ‘’sins’’ before bed each night. The guilt she experienced made her teary-eyed. But nothing she shared with us was even remotely bad! Things such as ‘’forgetting to turn off the bathroom light’’ would cause extreme guilt in her conscience. We decided to get her into counseling, thinking maybe there was something she wasn’t telling us. All this time, she continued to religiously and excessively wash her hands and use the bathroom; she was leaving the classroom several times per day (thankfully, she had a very patient teacher!) and missing lots of class time because of it. Her dad and I were truly perplexed. She had changed from a sweet, stable, happy, little girl to one of being sad, depressed, and germ-obsessed; none of it added up. Then we found the answer online after researching her symptoms: PANDAS! It had to be. We made another appointment with our pediatrician, who thankfully is open to anything. He did a throat swab, which was negative, but decided to culture it. A call the next day confirmed our suspicions…strep was positive! Dr. Hart prescribed antibiotics and within 3 days our daughter had almost zero symptoms. It had been at least 6 weeks of strange and irrational behaviors, and then…POOF! The symptoms were gone. No more running to the bathroom, no more guilty conscience, no more excessively washing of hands. Plus, her smile returned…we were relieved. Ten days later, after the antibiotics wore off, her symptoms started returning. But, Dr. Hart prescribed one more round and from that point on she remained relatively symptom free. On one other occasion she developed strep (in which we first noticed her urges again to urinate frequently… not typical strep systems); the doctor didn’t even need to see her. He called in two rounds of antibiotics where she recovered completely. It’s now 10 years later. In the past two months she’s started to take Rhodiola Rosea, a natural supplement, to help with some concentration and brain fog (ADD) issues we think are the result of her PANDAS, and it appears to be helping a lot. Overall, she’s doing great. Little did we know how easy her bout with PANDAS was compared to our next round: Melody
Fast-forward 6 years into the spring of 2013…Billy is 17, Carly is 13 and Melody is 8. The family was playing basketball in the driveway when Melody started talking with a very strange baby talk voice. Figuring it was just a phase, we ignored it; the next day we proceeded with our weekend family vacation to the Wisconsin Dells. In the middle of the night at the hotel Melody woke up screaming and insisting she had just seen Satan at the foot of her bed. She described him in full detail. Again, figuring she had just had a bad dream, I (mom) came over and crawled into bed with her. But Melody refused to close her eyes; she would not sleep and had to have a light on. Her pupils were enlarged and wide-eyed. She was scared to death. That was the beginning of months of scary hallucinations and 2 full years of mom sleeping in her bed with her with a light on in the room.
For the next several weeks, Melody was too anxious to attend school; nor could her brain think well enough to do any homework. Math was too hard, spelling too hard, and she could no longer read. Her handwriting looked like that of a 4 year old. She was afraid for her school friends and thought everyone was going to get shot at school. She was having very vivid hallucinations that made her mute with fear. She would see scorpions crawling the walls, cobras outside on the deck, and silhouettes of scary men in her bedroom. She could not even watch cartoons on TV, as she found them too frightening. (BTW- she had NEVER before seen a scary or inappropriate movie or TV show in her life. We’re pretty strict parents that way). One time, when she was literally mute with fear we had her draw a picture of what she was seeing in her mind. With her now atrocious handwriting, she drew a picture of a man standing over her bed, while she was sleeping, with a knife in his hands ready to stab her.
Dr. Hart, like us, was perplexed and had no answers. As things progressively worsened with her irrational fears, he suggested we take her to the emergency room for evaluation and to get her checked into the mental health facility at that particular hospital. Our daughter was going crazy with frequent panic attacks, night terrors, and sometimes rage. We had no idea why or how. While in the ER, the nurse checked her for rape, with our permission, which was negative. The ‘’counselor’’ on staff came in and cautioned us that it’s possible that should the doctors want to admit her, they could take her away from us for 2-3 weeks and send her to a mental institution in Chicago for children (70 miles away). She continued to explain that we, as parents, would not have visitation for those two to three weeks, and if we refused to allow them to admit her they could come and take our other two children from us as well. In the midst of this ‘’warning’’ from the ER counselor, it came to us (thank you, Lord!) that this could be PANDAS. Although there was no urinary frequency or excessive hand washing like Carly experienced, maybe this was PANDAS with different symptoms. We begged the ER doc to do a strep test. He did… it was negative. But, by the grace of God, the doctor had heard of PANDAS (his niece has had it), and he agreed this could be it. The hospital released her to us and started her on a course of antibiotics. Unlike Carly though, the antibiotics only made our daughter about 30% better in about two weeks time. We realized she had a much longer road ahead of her. We found out online that Intravenous Immunoglobulin/IVIG was the treatment of choice, so we applied for Melody to be a part of a clinical study at the National Institute of Health (NIH) in Bethesda, MD. She was accepted (last one in!), and eventually, she did receive IVIG over that summer. (She had received the placebo the first time around, with no results, but second time got the real thing.) Six months and four trips to the NIH later, Melody was about 80-85% better, and would only improve over the course of the next few months. To this day, she takes a prophylactic dose of antibiotics daily. She’s had strep twice since IVIG with normal reaction and recovery.
Now, fast forward 1 ½ more years to the fall of 2015. Our son, Billy, has started his first year at college. He’s 18 ½ and ready to be on his own. He’s attending Trinity International University in Deerfield, IL, with some wonderful new friends and professors alike. About mid-September Billy was sitting in his first hour of the day, when he suddenly doesn’t feel well and decides to get up to get a drink of water. He leaves the classroom, walks down a set a stairs, then loses consciousness and passes out in front of the drinking fountain. Someone who was passing by dials 911. By the time the ambulance arrives, Billy is coming to, but they decide to bring him into the ER to have him checked out anyway. All of his vitals come out fine, except he has low blood pressure. He is given IV fluids and released a few hours later. The problem is, Billy doesn’t feel any better. He is struggling with extreme dizziness and fatigue. He spends several days in bed, and just can’t get well. We convince Billy to come home so we can get him into his doctor (yes, Dr. Hart). He does a head to toe exam and finds nothing wrong. He orders a common blood panel, but all come up normal. He prescribes him to eat right, drink plenty of fluids, and try to get outside and exercise. So, after two weeks at home resting, Billy decides to head back to school in hopes of catching up on his studies. He rarely attends classes, as the dizziness is too much for him. He’s eating when he can (although has no appetite), drinks plenty of fluids, but can’t exercise or really even get out of bed. He works with a tutor to keep his grades up, but Billy ends up dropping his harder classes. The professors work with him as best they can to get him his work. Billy is depressed and complains of vivid, disturbing nightmares, an inability to get restful sleep, and lots of anxiety. This is out of character for Billy. Two months pass, and Billy is no better. Dr. Hart decides to do more tests. He orders the tilt table, EKG, MRI, EEG, and vestibular testing, and to check for POTS: all normal or negative. So, we call Dr. Hart’s nurse (Carol) to speak to her about ‘’what else’’ it could be. We decide to do more testing such as Lyme and other arbo-viruses, thyroid, lupus, rheumatoid factor, and to re-do the MONO (Epstein Barr) test again. Then, as we are discussing these things, we say to Carol (who’s been with us since day one of our PANDAS journey beginning in 2007) ‘’what the heck, let’s test for strep’’. She agrees it’s not a bad idea, given our family history.
A few days later we finally find out the culprit to Billy’s illness…strep is positive! The titers are through the roof! After a week of antibiotics Billy is feeling a whole lot better. He’s able to finish the year strong, and passes all of his classes. It takes Billy a good year to really shake the depression part of his PANDAS, but antibiotics was all it took for him to rid the dizziness, fatigue, nightmares, and anxiety.
By pure definition Billy should never have had PANDAS (the word ‘’pediatric’’ would eliminate him completely). But, there you have it…an adult with PANDAS. And, as far as we can tell, it was his first bout. Billy was relatively healthy his whole childhood, with normal childhood illnesses (including strep) and normal recoveries. Had our other two children never had PANDAS we have to wonder if Billy would still be sick today, striving to recover, and still looking for answers to this overnight onset of an illness that caused him extreme fatigue, dizziness, anxiety, and nightmares.
So, here we are in 2017. All three children are now happy and healthy. Melody enjoys basketball, softball, plays the saxophone, and loves to sing. Carly enjoys musicals, honors choir, youth group and playing the flute. Billy is a Resident Advisor/RA this year in college, in the college musical ‘’The Music Man’’, plays percussion, and is TIU’s band president. All three are excellent students and love the Lord. We are truly thankful to God to be where we are today with our health. We know how precious it is and how quickly our lives can change overnight. Our desire is that our story can serve as a glimmer of hope to those currently suffering from this horrible illness.
We’d like to thank Dr. John Hart and his nurse, Carol, for always believing us, never giving up, being honest when you didn’t know, and yet standing by us and helping our children get the right treatment when we finally did. There are far too many ‘’unbelievers’’ out there, especially in the medical profession. The hardest part for many is getting a doctor on board, and by God’s grace, we never had that problem. Again, thank you from the bottom of our hearts.
We really also want to thank Dr. Susan Swedo and her staff for their tireless efforts to helping children who battle this disorder and for their courage to fight the naysayers. And lastly, we thank all PANDAS forums out there, helping families like ourselves navigate this terrible illness with encouragement, knowledge, and support that is desperately needed.
~Caroline and Bill Hartenberger
Now do you see why I called this story a PANDAS Trifecta? Wow! The Hartenbergers were so gracious to share their complete story. It definitely helps to show other parents that they are not alone in their darkest moments. (And it can help any medical or educational professionals that might read the blog understand that PANDAS/PANS can present very differently!) Caroline and Bill also show us that there’s light at the end of the tunnel. I told Caroline that since she’d been through this with all 3 of her children and seen them come out on the other side of PANDAS…that this story gives TRIPLE times the hope for us all. I’m so happy to hear that Billy, Carly, and Melody are all doing well now. And with this much PANDAS experience, if there are any blips in the future, their parents know what to do and who to call. Whew!
I asked Caroline and any of her family members to complete the sentence: “PANDAS Sucks Because…”:
PANDAS Sucks Because…it is often disguised and unrecognizable, and in turn, it does the same to its victim. ~Caroline
PANDAS Sucks Because…it gives you nightmares and bad visions and takes forever to get better from. It’s just really bad. ~ Melody (age 11)
I agree with both Caroline and Melody. PANDAS Sucks for so many reasons. Somehow we KEEP GOING and our kids GET BETTER. When betting on the PANDAS/PANS Race, ALWAYS bet on to WIN! Always.
Remember that you can tell me why YOU think PANDAS Sucks by clicking here. If you have found a PANDAS Silver Lining you want to share, click here. Want to write a guest blog?…simply click here to get started. (Psst…I have a lot of great guests coming over the next few weeks!) Thanks for your continued participation in PANDAS Sucks. Y’all are AWESOME!
Tell us why YOU think PANDAS Sucks. Click here.
We post these reasons in a blog series.
Have YOU found a PANDAS Silver Lining? Click here.
Want to send a message to Sarah? Click here.
Sarah Jane Alleman is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings.” Find PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.