One mother's story: How strep throat attacked my child's brain

by Kristin Cantu on October 20, 2009

Heckmann

Maura Heckmann and her son, Chris

Eleven-year-old Chris Heckmann was healthy and in good spirits when his mother, Maura, left him with friends for the night. But when she returned, 24 hours later, her son was unrecognizable. Stricken with paranoia, he refused to eat and paced around the family room, fear in his eyes.

At first, doctors thought Chris had obsessive-compulsive disorder (OCD). But he was ultimately diagnosed with PANDAS, a controversial neuropsychiatric disorder thought to be related to routine childhood strep infections. Here, Maura tells the story of her son’s rapid decent into illness, and his road to recovery.

by Maura Heckmann

My son had always been a healthy, happy, funny and articulate boy. He played sports, had lots of friends and never had any psychiatric issues. Then in June 2008, when my husband and I were on vacation in Maine for my birthday, we got the call that would change our world. We had left our two older kids with their grandparents, and Chris, who was 11 at the time, was at a friend’s house. It was 2 a.m. when he called, complaining of a sore throat. He insisted on coming home, so we arranged for his grandparents to pick him up. When my husband and I returned the next day, we found a completely different person in my son’s place. Chris had fear in his eyes, and was exhibiting a lot of strange activity, included pacing around the room and hiding behind the bar in the family room. My heart sank when I saw him. It was like my son was gone.

The next day Chris was even more withdrawn. He wouldn’t come near us or eat or drink anything. He said he was afraid the chemicals in his food might hurt him. As a nurse at Children’s Hospital Boston, my experience told me that something was very, very wrong, and I took Chris to the emergency room. With tears in my eyes, I explained to the triage nurse that my son seemed to have a break with reality, an extremely sudden onset of severe anxiety.

The next month was a living hell as we tried to figure out what was wrong with Chris. His paranoia got to the point where he wouldn’t eat anything we gave him, and he had to buy and prepare all his food. If we touched anything in the shopping cart that was his, he wouldn’t eat it. He stopped bathing or brushing his teeth. He refused to see any of his friends and stayed inside. When it rained, he kept his mouth shut and tried not to breathe. On one doctor’s visit, they wiped his arm with alcohol before drawing blood. He freaked out and wouldn’t use his arm for days. We went outside to play baseball, and he just let the ball hit him instead of using his arm to catch it. It was heartbreaking.

We brought Chris to every psychiatrist, neurologist and specialist we could. In the back of my mind, I started suspecting that Chris had contracted strep throat prior to the onset of the psychiatric symptoms, because of his complaints to us over the phone. As I researched the link between strep and OCD, I found some information about pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). As a nurse practitioner, I had heard about PANDAS in grad school, but thought, “What a weird thing. I’ll never see that.” The theory is that PANDAS occurs when your body’s normal immune response to strep bacteria becomes misdirected and attacks your brain. Through my research, I learned that PANDAS is a controversial diagnosis as there’s limited supporting evidence, so far. There’s no lab test for PANDAS, which makes diagnosing problematic. For more detailed information on PANDAS, click here.

Because of my research, both my husband and I began to believe that Chris was suffering from PANDAS, but it took weeks to verify because Chris wouldn’t let people near him. It took a month to get the first throat culture and we were finally able to tell that he had a recent strep infection. Chris began taking ongoing, prophylactic antibiotics that would prevent any additional strep infections, reducing the risk of further injury to Chris’s brain.

Chris was deathly afraid of medication and refused to take anything we gave him. We were finally able to coerce him into taking anti-anxiety medications after an hour and a half with a nurse practitioner. After that first time, Chris was able to take the medication, but it had to be part of a routine: We had to give it to him in a certain way, with a certain drink, at a certain time. Within a week, he was able to take the antibiotics as well. Finally his symptoms began to subside.

As the antibiotics don’t work on the psychiatric symptoms, Chris started seeing a psychiatrist. But very quickly, Chris returned to his normal, happy self. On the advice of Chris’s psychiatrist and his pediatrician, Chris is now only taking prophylactic antibiotics. We have the option of taking Chris off of medication in two years, but my husband and I said, “Absolutely not!”  We’re going to wait until he’s 18 years old. From what I know about PANDAS, a lot of people stay on medication through adolescence. We’re doing everything we can to ensure he won’t get sick again (we even had his tonsils removed after the PANDAS diagnosis as a strep preventative).

Chris has now been on antibiotics for just over a year. He’d prefer to not take antibiotics if he doesn’t have to, but we didn’t want to take the risk this year. He’s absolutely fine now, back to playing sports and hanging out with his friends. I feel so lucky that Chris is back to his original health, but I do worry that he will get sick again. PANDAS turned my family’s world upside down. The reason I’m sharing my story is so that others will know more about this controversial illness. It is real, and it deserves more study by scientists so that it can be prevented. There needs to be more information out there so that other families have the chance to recognize and treat this illness and to get back to a more normal life.

Another mother shared her story about her son and PANDAS on NBC’s Today Show.

18 comments

  • http://- Miriam

    It is hardbreaking to read about these kids who suffers from PANDAS and too often to read about doctors too, who doesn´t know how to treat PANDAS or doesn´t even know (or doubt), that PANDAS exists.

    If you suspect, that your child is having PANDAS, or know for sure, that he/she does have PANDAS, you´ll find lots of information about PANDASsymptoms, -treatment and -diagnosing and dedicated PANDASparents from all over the world at : http://www.latitudes.org/forums and at : http://www.pandasnetwork.org.

    Best wishes -
    Miriam

  • Manda

    We hope that you will join us at http://www.latitudes.org/forums in the PANDAS forum. Happy “endings” are always encouraging over there. I’m so glad you got help and that your son is doing better.

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  • Claire Bowles

    I am a physician and my son was diagnosed with PANDAS in February. We improved with antibiotics but ultimately underwent plasmaphoresis to have the strep antibodies removed. He is cured now. My hope now is to continue to educate everyone I meet about the disease, especially the medical community.

  • Amy

    I am at a loss as my 7 year old son is a Pandas kid. While away in Aug. 08 he had what we thought was a cold, no big deal right. In less than a week he had full blown tourettes. It was devastating. He could not control himself at all. He could not walk with out jumping, twitiching, head banging, head twitching, grunting and barking. WE soon found out that he indeed had a strep infection. Thus the neurologist said that it was Pandas. Yet they only would prescribe a two week dose of the antibiotic. His tics slowly subside it took a long time (months). They preferred and pushed the clonide and tenex, etc. They do not want to prescribe him the antibiotics. I don’t understand. He is suffering. We are all suffering. When school began last year (kindergarten), it was hard for everyone because his vocal tics were so loud and hindered the teaching for all in his class. He still grunts, clears his throat, groans, mouth tics, and eye movement thing. He is now in full day 1st grade and it’s difficult for him academically and concentration. His behavior and attitude gets so bad when he gets sick. He angers easily and will cry at the drop of a hat. It is truly unbelievable. I’m afraid we need to start all over again with another neurologist. All though his current neurolgist is at Children’s Boston. He cannot seem to help us any further. Why are some kids getting helped (antibiotics) and other are not. Any thoughts or suggestions would be greatly appreciated. Also any suggestions of a doctor or neurologist in MA would be so helpful. Thank you. Sorry for the the long read it has been a long tough day.

  • Amy

    Thank you for your story Maura. I didn’t put in earlier. It does help to hear great news for you and your family. It is encouraging. Thank you for sharing.

  • Darlene

    I have a 17 year old son who has always gotten tonsillitis or strep since he was a toddler. Sometimes the skin would peel off the bottom of his feet in large pieces from the fever. About 11 weeks ago he drove home from a friend’s house an hour earlier than curfew and insisted on laying down because he just couldn’t hold his head up and his “heart hurt”.
    I checked on him every thirty minutes and he was sleeping peacefully, a little warm but not hot. I went to bed and set my alarm for one hour. As soon as I walked in the room I knew something wasn’t right. There was a strange odor, like a sick person’s room. I felt his head and he was on fire! I turned on the light and he was semi-awake but delirious. He wanted to know why there was a strange man in his room and why dead people are all around. Obviously the fever was causing him to hallucinate. I gently lifted his arms and pulled him to his feet and got him to the tub where I ran a cool bath and helped him in. (he let me…I knew he had to be out of it to let me help him in the tub at 17 years old) I gave him his privacy with the shower curtain and got him two tylenol. I helped him back to his bed and made an area on the floor next to his bed for myself and set my phone alarm for every thirty minutes in case I dosed off. He cooled down a bit after about twenty-five minutes and we fell asleep. I checked him every thirty minutes and in four hours he was on fire again. I woke my husband to stay in the room and give him tylenol while I ran to the corner drug store for a thermometer (mine was broken). I returned in about twenty minutes and his fever read 104.6! I thought it must be the thermometer and took my own temperature….it was 98.6. I called the doctor and he said bring him in. I tried to get him out of bed but he was limp like a wet rag. His bed was soaked and he was gray. When I finally got him up and was leading him to the car, he passed out. My husband grabbed him and they sat in the back while I drove. As soon as we got in the doctor’s office he knew just by looking at him something was very wrong….my son could not move his neck without severe pain. He looked at his throat and said “wow” “he has a nasty throat infection but I want to rule out meningitis and he sent us straight to the Emergency Room.. After blood tests, urinalysis, rapid strep, and two bags of IV fluid he started to come around to his old self. The doctor gave him Tordol and said if his neck stopped hurting that it was not meningitis. His neck stopped hurting but he could not stop shivering and he had a red rash on his trunk and cheeks. She said all the test results were negative and he could go home! I said, “if he has no infection than why is he running a 104.6 temperature? She said he isn’t running that temperature now and he must have been severely dehydrated! I said I have never heard of dehydration causing a fever, and she said “well sometimes it can!”
    We left puzzled and concerned. By the time we were back home and settled in his face started to turn gray again and he was having trouble swallowing. I checked his temperature and it was 105! I called the doctor and he said put him in a luke warm bath and give him motrin this time instead of tylenol and go back to the ER if his fever persists. Well I knew I wasn’t going back to that ER…..EVER!!! His fever came down to 101.9 and I just stayed with him in his room giving him motrin the second he was allowed to talke it. By morning I had changed his sheets twice from the sweating, and called the doctor when his fever went back up to 104 at 9:00 am. He said bring him in. I did. He asked what antibiotic the hospital gave, and I said “none”! He took one look in his throat and again said I told her his throat was infected, and it looks the same today! He prescribed him 875 mg of augmentin for 10 days and said follow up in 10 days. I looked in his throat and took a picture because I could not believe my eyes…..It was the reddest I have ever seen and it was blotched with a white cheesy looking substance. Ten days later he was cleared to resume normal activity, although I thought he still seemed drained. On the eleventh day he went to a soccer try out and had an asthma attack. He didn’t have asthma before! I called the doc and he prescribed him an inhaler because he has had to use one for bronchitis before. it didn’t give him any relief. Next…… immunologist……..says he has severe allergies to grass and dust ….. a 6 on a scale of 1-6. She prescribes a different type of inhaler with different instructions. Doesn’t help. Next….pulmonologist……prescribes him another inhaler to go with the other and singulair…..doesn’t help. In the mean time the immunologist had ordered blood work to look for strep. The results came back…..335.5 in his blood stream! Says it could still be lingering from incident that brought us to the ER. The pulmonologist did a lung function test…..He does have asthma. She prescribes a third inhaler for maintenance….flovent. This week the blood work was run again and the strep level went up to 341.3. She says it’s nothing to be concerned with. She will see him in 6 months for a follow up.
    I will be picking up the labs tomorrow and looking for another opinion; Someone to put this all together. His creatinine was a little elevated, his blood sugar was a little elevated, he has always had this deep red rash in the shape of wings on his cheeks that has gotten worse recently and he can not exert himself without chest pain and shortness of breath! He has recently gotten sick again with the sore throat and over tired but no fever. He just seems drained. I kept him home from school Friday because he couldn’t swallow and his throat was pretty red. He slept most of two days. Any suggestions?

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  • http://none sheila appello

    Dear Maura,

    Thank you for sharing your story. I would have never known or figured out my son had PANDAS. I know one thing, when he was six years old, he developed a rash, i grew up with 11 brothers and sisters and have been changing diapers almost my whole life, as i got older, i think i’ve seen every rash known to man. You will find my story interesting, my son after that rash for six weeks went from an adorable, loving, easy going child who was always such a joy to (in six weeks time) another child. I took him to the doctor for the rash, and was told it was nothing, i listend. After that, he exhibited the same symptoms, fear, terror, actual terror, dark circles under his eyes, but no sore throat or so he did not mention. One morning, he woke up with, it was like a punch, although i have been communicating to his father the strange behavior and one other thing, his fevers which would run hot and cool down in a moment, he would be covered in sweat. One morning, i woke up and his head was snapping back every two second, rushed him to the emergency where we were told he had tourettes. No way, denial set in for my husband. Me, all i thought about was that rash and the fevers, something was related, i knew it, i don’t know how i did, but i did. The neurologist told us as he were telling us the events of the day, until i stood up and said, maybe so, but what about the fevers and the rash, he seemed uninterested. I went to work like you, tourettes did not make an extremely articulate child speak like a two year old – who would say, me want ba ba. I am blessed to come from a family with many good connections. My sister worked for The President of University of Medical Dentistry, and little did she know or me, that the doctor she set us up with, initally confirmed it was tourettes. I started to cry and ask him the same questions, but what??? i’m not a doctor, that’s not my profession, do tell me how it is so that a child with tourettes speaks like a child at times, i’d seen no research on this. Whom was across the desk was one of the leading pioneers on PANDAS, his name is Rosario Triffiletti, not only that, he was a saint of all saints, kind and spent three hours time with us, he asked us both immediately – any rheumatic/scarlett fever? Confused, i answered yes, my mom went blind in one eye in ireland and dad’s brother freddy’s heart valves were damaged to this day. he ordered the blood work and anthony’s blood was ripe with strep. I do hope you contact me, i’ve been dealing with this for six years, my son is a Straight A student with an IEP, his biggest deficit now is social, because of his OCD, his other deficit which will be his asset is that his articulation rate and comprehension rate is one of a 22 year old entering their first year of college, for us this is difficult because he puts up a good argument. It would be an honor to speak with you, contact me at appellosheila@yahoo.com, our son’s are the same age, but to know there is another doctor out there who get’s it, and believes it, is hard. It’s become boring to me, when i say pandas, i’m really just like “forget it – he’s got tourettes, time and time again, report after report, doctors aren’t interested. They’ve heard about it, but believe it could really happen? Well, it’s kind of like believing someone when they told you they’ve seen a ghost. No really I saw it right before my own eyes, i’ve seen this so many times, i’ve stopped and have become my own doctor. I know him, i have his heartbeat, and i don’t listen to them, they listen to me, when he is sick, i am a formadible opponent, who will bullet point them with questions until i will get what i want is that test, no not the swab, the blood test, swabs don’t work on anthony. Just last month, his throat was covered with (you know) yuk, hate the word sorry, but i was bored, she stared at me becuase the tests displayed elevation in titers and that was 7 days ago, no telling where they are now, and she looked over at me and stared. She ordered the swab, i said don’t bother, please it’s going to come out negative. It did, i couldn’t help it – i’m not a mean person, but i did have to gloat a little with a bored stare at her. You learn to live with it, as for probiotics, i did that as well for awhile and that is your personal decision to make. This year is hard, the normal human brain at this age done by studies from harvard are being hijacked by a votex of emotion, compound that with a child who has severe ocd. I have methods i work with anthony ever single day, sometimes there’s a fight, sometimes he gets it, it’s a struggle, but he’s my son, and in my world, there is nobody more important than the four people under this roof. So do i push doctor’s around, yes i do, am i a push person, no i’m not, never sold a thing in my life, but i know the deal, give me what i want and i’ll make your life easy and go away. It always ends up where the doctor is too proud to admit they had it wrong….and my first love is and will always be Dr. Rosario Triffiletti, my savior, led to me by God’s hand only. My son get’s the best when it comes to education and character, as far as material items, get a job, i worked at a bakery at 12, no way, christmas pick out one thing, get on your bike and ride, be normal, i’ve read many books, i cannot and fall short every day, trust me, be a friend to his ocd, it needs addressing immediately, it’s a furious tiger that loves to chomp on the bit, and i spent many years trying to overcome his difficulties for him and abated his OCD, it’s a war Maura, but he will correct, growing up with 11 brothers and sisters, 9 ways to skin a cat? Ha! try 11, if you ever want to know some of them, it’s easy to the ear, but try doing it when you are in full throttle of engagement. You must walk away, and work TOGETHER!!!!!! Learn from me, my mistakes i hand to you on a silver platter, it would be a gift to bring these two brilliant minds together to meet.

    Praying for you, sheila mcguire appello

  • sheila appello

    CLAIRE BOWLES,

    COULD YOU EMAIL ME AT APPELLOSHEILA@YAHOO.COM???? PLEASE, I PRAY YOU GET THIS MESSAGE, I’M EXTREMELY INTERESTED IN THIS PROCEDURE BUT WAS TOO AFRAID TO DO IT. PLEASE CONTACT ME.

  • Denata

    Hello

    Thank you to all of you for sharing your stories. I am sad to learn that other children are suffering from PANDAS but am glad to have others to talk to about this. My 7 year old has suffered from PANDAS his whole life. We think he contracted strep from me at birth. His strep level is 1153, he has taken all the suggested medications but is still not well, and I can’t find anyone in Canada to provide the IVIG treatment. I feel as though the Medical Association in Canada is waiting for more studies to be done but all the patients are in the U.S. They are cowards. My son’s symptoms are as follows: paranoia, anxiety, ocd, separation anxiety, defiancy, and has extremely violent outbursts. I have a healthy daughter who doesn’t exhibit any of these and is very normal. We’ve know since our son was under the age of 1 that something was different and concerning. We have been fighting to help him ever since. Please, please tell me if you know of a hospital in Canada who will perform IVIG for PANDAS patients. My son cannot wait any longer, he is losing his childhood.

    Thank you,
    Denata

  • Patrice

    Denata,

    I am sorry to hear that you and your child are suffering so. I don’t know if you believe in “alternative medicine” but you should check out NAET. Google it and find a provider near you. It is noninvasive allergy elimination technique using muscle testing and accupressure. My 7 yr old daughter is on the autistic spectrum and has PANDAS. Her behavior is so awful she is not getting an education. Anyway, she also has significant sensitivities to MOST foods out there. I have been taking her for NAET treatments since the summer. We did the basic 15 and are about to complete 40. She has been cleared for many of the foods that caused significant behaviors and now she can eat them. It is a long process. Our NAET practitioner just ordered the PANDAS vial to use with my daughter. I wish I could tell you about our success with it, but we have not done it yet.

    Like most things, it may not work for everyone, but it is worth a try. You will be in my thoughts.

  • Anonymous

    What do I do with my 22 year old daughter who I believe has had this since she was 11? She developed OCD symptoms after long periods of strep throats – finally had her tonsils out at age 12. She is a senior in college and still suffering from OCD thoughts.

  • loriwesley

    What do I do with my 22 year old daughter who I believe has had this since she was 11? She developed OCD symptoms after long periods of strep throats – finally had her tonsils out at age 12. She is a senior in college and still suffering from OCD thoughts.

  • Kristin Cantu

    Hi Lori,

    Your daughter’s doctor would be the best person to speak to about this. Tell the doctor what you’ve told us, your concerns and your theory as to what it is. Hopefully together you can come up with a plan that will help your daughter.

  • Mvincent4

    This is very interesting. My son is 3 1/2 and I’ve noticed a patten with his behavior. He becomes oddly erratic, throwing tantrums and most recently, with the recent bout with strep, peeing and pooping in his room. I watched him do it…It was as though that was just an ordinary thing to do, without any thought to it. I told the dr. 2 days ago that he had strep. He didn’t have any symptoms, but his behavior – well, everything is a growl, yell and he has these bizarre tantrums with loud shriek screaming? Well, anyway, the rapid strep came back negative. I was perplexed, because he was still having the emotional outburts and a new symptom during his Sept. strep bout, a re-occurent throat clearing. The dr. called today. The culture grew and yep, he has strep. I talked with the dr. again about PANDAS. He’s beginning to warm to the idea, although he finds the whole area controversial. So, here I go gathering research for the both of us. Thanks for the story. It’s so sad to see my little man go through this…he’s such a sweet boy.

  • Mvincent4

    What is plasmaphoresis and how did you actually diagnose your son? Did you see a neurologist? Did you have any websites or books that you find beneficial? I’m gathering information. I believe my son suffers from this. He is 3 1/2. I read about the condition in Dr. Kenneth Bock’s book, healing the 4 A’s. (My son has allergies to many things…) It wasn’t until I noticed his continual strep infections that I began to diagnose him without any symptoms and my dr. thought I was crazy until I nailed the diagnosis 3 times in a row. There’s something to it. It’s like a light switch for him. Thank you for your help.

  • Claire Bowles

    Plasmaphoresis is basically a procedure which is done in the ICU where a femoral line is placed and then the blood is run through a machine. The plasma is pulled off and replaced along with the blood cells.It was performed over three days and each treatment lasted about two hours. WE left the hospital cured. Four months later though he relapsed although not as severe as before. We have since had IVIG twice and are planning to do it again each month. Each relapse has been milder than the one before. Our immunologist described it as trying to reboot your computer and hope the body forgets to make the antibody again. Our hope is each relapse will be farther apart than the last. I think the reason my son has been so difficult to treat is because he had this so long without us knowing. We do have a neurologist, immunologist, infectious disease docto all on board.

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