PANDAS Stole My Child
I guess it was inevitable. Steep yourself in information about rates of childhood illnesses spiking to epidemic proportions, and you’re bound to become a maternal hypochondriac. But when my then four-year-old daughter first displayed symptoms of serious illness, I panicked. And as it turns out, my panic was justified.
My daughter had PANDAS, a controversial neurological disorder caused by strep. The doctors said otherwise, but I knew the truth: I’m her mother; everything is my fault. She woke up on Sunday with what we thought was the flu. And then it got worse. For 48 hours she was feverish, bundled up on the couch with a glazed look in her eyes, refusing food and medicine.
By Tuesday, the fever was gone—and then the worst part hit. Tantrums that went on for hours. Facial tics. Repeating the same phrase over and over. Regression. Extreme separation anxiety. Complete irrationality. She peed in the bed and freaked out because we took her “pee pee pants” off to wash them, and spent the next hour trying to get them out of the laundry to put them back on—wet.
In writing, it doesn’t seem that bad. But to see her banging, yanking, screaming—those eyes open wide yet unseeing—it was terrifying. There were flashes of her old personality: a few minutes of coloring, where she used to sit for an hour, a 10-minute stretch when made a play picnic on the floor, a few hours out of the house. But then something would set her off and she’d have a tantrum again.
We tried rationalization. We tried positive reinforcement—yes, with bribery. Then we resorted to punishing. But the worst thing was, we became afraid of her, and of what she might do.
I was the most frightened. Because at that point, she didn’t want anything to do with me. She wanted her current obsession—pee pee pants, blankie, a very specific set of toys—and her daddy to get them for her. Not me. “Mommy, leave me alone,” she screamed at me. She slapped my hands out of the way. Once, she even bit me. Complete rejection. This from a girl who earned her nickname—the Barnacle—because of the way she clung to me.
It killed me.
But I rationalized it. I was working; my husband was home. I was the one who held her down on the potty before bed so she wouldn’t wet it again; Daddy held her, crying, while I stripped off her clothes and washed her blankies. Of course she would be angry, I thought. I was the one doing these things for her own good.
So I copped out. I went to work, while my husband stayed home to take care of our daughter—and simultaneously Googled her symptoms.
From: Kevin Sarnoff
Subject: From Dr. Sears
Tantrums may reappear at four with a surprising twist. A four-year-old is smarter, stronger, louder and more adept at pushing parents’ buttons. The child now realizes he has his own power in the family, and that can be threatening to some parents. It is important not to squelch an emerging personality by overreacting.
In between emails, I Facebooked my friends. “Who took my sweet four-year-old and replaced her with a child who looks like her, talks like her but is totally insane?” I wrote. “The f*cking fours took her…” was the reply.
From: Kevin Sarnoff
Subject: Maybe she is just too gifted
One example that is typical with gifted four-year olds is not being able to handle transitions from one activity to another; bedtimes, switching from activities they are concentrated and motivated to do, going out to other locations that may be too overstimulating, or transitioning home and not being able to calm down. In these examples, part of the action plan will include activities to ease the transitions and possibly changes in the routine to reduce the events causing over-stimulation.
Yes, she was four, and yes, she’s smart. But it was like she went to sleep and woke up a totally different child. That couldn’t be normal, could it?
It couldn’t. And then he found this, from the National Institute of Mental Health:
PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette’s Syndrome, and in whom symptoms worsen following strep. infections such as “Strep throat” and Scarlet Fever.
The children usually have dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceded by a Strep. throat infection.
Two months ago, I had taken my daughter to the doctor because of a Strep scare. The doctor didn’t do a culture, but gave her a prescription for antibiotics—in pill form. I was supposed to crush them up and put them in applesauce. Yeah, right. After two days of trying that, and getting half a pill down her, they gave us another prescription for a liquid antibiotic. I mixed it with milk; I mixed it with apple juice. I mixed it with anything to get it down, but still only managed to do about half the bottle.
I hadn’t given her the full dose. Had it affected her brain?
What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and “attack” the heart valves, joints, and/or certain parts of the brain. This phenomenon is called “molecular mimicry”, which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance.
In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea.
A neurological disorder. A syndrome that might take months to dissipate—only to be re-triggered if she’s ever again exposed to Strep. And even though nothing in the research suggests that not following through on the antibiotics has anything to do with this, I knew it had to.
I’m her mother—everything is my fault.
But we’ll never really know. There’s no conclusive test for PANDAS. Some pediatricians believe in the condition; some don’t—ours was still on the fence. One study treated affected children with anti-obsessional medications like fluoxetine—better known as Prozac. Other doctors prescribe “waiting it out,” since most kids stop showing symptoms at puberty.
So that’s what we did. For days, we put her to sleep between us in our bed. I barely slept. I’d wake up to pull the covers back up over her, brush her hair back from her face, or just feel her chest rise and fall as she breathed. And I prayed that when she woke up she would look at me with eyes that I recognized, all the way down to her soul.
It worked. After a terrifying week, she woke up one day, bright-eyed and bushy-tailed and loving me again.
But it made me examine the process. As parents we’re conditioned to believe that if something is wrong with your child, you go to the doctor, get a prescription, and the child gets better.
But in these types of conditions, time and patience is the prescription, if not the cure. Luckily for my family, we didn’t need a whole lot of either before the situation changed for the better. But for those of you who face similar situations, I wish you infinite quantities of both.
The picture above is my now seven-year-old daughter. I originally published this piece three years ago on the blog formerly known as Mommy Greenest; today, PANDAS is better understood, and also associated with bacterial infections other than Strep. After a few recent brushes with the condition, I thought it was important to share it again here. I’d love to hear your comments on our experience. Have you heard of PANDAS? I want to know about it. Thanks!
57 Comments
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Sebrina Osmond
Christine, thank you for the kind words. I have written in the comments about running themes without permission and why I don’t feel there is anything to worry about, yet, the way I ran my HP camp made it easy to switch to “Wizard Camp” if ever I needed to, but I have never given a link to where you can ask for permission. In fact, I have contacted a few people at Warner Bros and at Scholastic for permission. Nobody ever seemed to know the right person to speak with, or I would leave a message and never get a return call. I even tried to find where I could purchase licensing rights for a camp program. It was a dead end. Purchasing licensing rights for apparel and toys are one thing, but nobody does anything like that for camps that I could find.
Angela Hatmaker
My daughter was 6 in 1998 and I know she had this. It wasn’t even heard of then. She went to bed one night and woke up a different child the next morning. One that had loved school and now was terrified of school and many other things. This child that was so sweet and never caused problems anywhere was out of control even at school. Of course doctors didn’t know what to do about her or why she was throwing tantrums. I had to home school her for a while and then try to put her back in school slowly. This unfortunately affected her life negatively in many ways. I think the school, family, and friends thought she had lost her mind. It was so hard as a Mother to watch and not know what to do. We went through this for years off and on. She suffered many bouts of strep throat but had no idea this could be the problem. I do have to say when she started going through puberty the symptoms started to get better. She is 25 now and doing good but if you ask her about the tantrum times she can’t remember anything about them. It is still very hard for me to talk about. I hurt so badly for her. Hang in there parents. Hopefully there is more help now that they know the cause.
Rachel Sarnoff
OH I am so glad she is okay Angela. My Chloe is fine as well. I agree that patience is the best medicine, in this case. xo
Wendy
Healing the symptoms of autism has cured my son of pandas. Never reoccur ed with this treatment.
Shelia Wallis
What treatment?
Tim
Our son had terrible PANDAS in 6th grade and he missed all of middle school. We had to homeschool. I consulted with the expert on this and the things that helped the most…take baby steps for anything anxiety related. Don’t push too hard. Supplements that are a must: Inositol regulates brain chemicals, melatonin calms the brain, and probiotics (we use Philips). Puberty solved many problems and we got our kid back but even to this day there is a little leftover anxiety and he must have these supplements. DO NOT USE antidepressants of any kind. They increase brain chemicals. You want inositol as it regulates them. Need help? I will respond timandvalerie@comcast.net
jan r york
Just found out my granddaughter has panda syndrome its scares me so.shes 9yrs old also broaderline autism. Stated taking meds that scards me more shes my world i don’t know how to take this
C Chapman
Hi there,
Our daughter who will be turning 9 in February was just diagnosed with PANDAS last week. She had strep just before Thanksgiving and because she has allergies to penicillin, she had to take Azithromycin. She hated it and vomited every time she took it. The symptoms went away though and she was fine. Then in December, she started complaining of stomach pain and had diarrhea and a few episodes of vomiting. Of course, we blamed the stomach flu. The stomach pain never fully went away though. She then no longer wanted to go anywhere. We spent Christmas Eve in the ER for X-rays and ultrasounds. They were negative. Two weeks ago, she started to not want to go to school and had a panic attack at an awards assembly. She is so fearful of vomiting and thinks those around her will vomit. She won’t eat, has trouble sleeping and doesn’t want to do anything at all. She has extreme anxiety and talks like a baby. We started to see a therapist who suggested PANDAS. We went back to our pediatrician who swabbed her and she was positive! We had the relief of an answer but now the fear of the future is setting in. Will she get better?! She is on 10 days of antibiotics and we are still seeing a therapist. Our pediatrician is on board and has already seen this in one of her other patients. She referred us to a neurologist. We are trying to get an appointment but there aren’t many to choose from here in Las Vegas. We have managed to get her to go to school but only after hours of talking about it and calming fears. My husband picks her up at lunch because she refuses to go to the cafeteria at school. She then fights going back. Homework was once a breeze, now she fights it and it’s a struggle. She is on edge and quick to get angry. She doesn’t care to see her friends and doesn’t show interest in much anymore. It breaks my heart to watch this. She too, seeks out my husband and rarely wants me. She also becomes much more angry at me. Watching the sheer fear in her eyes melts my heart and scares me. Some say symptoms improve after antibiotics. She is going on her fifth day. Haven’t seen much improvement yet. I appreciate all the posts. Our world has fallen apart over night. It’s helps to know there are others who understand. Sorry for the lengthy post.
Rachel Sarnoff
I’m so sorry, Christy, and hope that you find some resolution soon. I only know about my experience–and my daughter was a lot younger–but the symptoms did go away with time. We also had her on antibiotics for about a week, I think. My heart goes out to you. Please keep us posted. xo
leisa
Go see Dr. Wesley Robertson at Sunshine Valley Pediatrics (In Summerlin – Las Vegas). He diagnosed my son with PANDAS. He’ll send you in the right direction – he’s fantastic and has a son with PANDAS as well. I just happened to see your comment, but it was posted in January. I hope you’ve gotten some help in the meantime, but if not, Robertson is amazing.
C Chapman
Thank you so much for sharing that info. We did find a specialist in Northern California that is treating our daughter. It is wonderful to know that there is someone locally that is willing to treat PANDAS and understands. Our specialist in Ca has a son with PANDAS as well. Since going to Ca, we have discovered that our daughter is also positive for Lyme disease and mycoplasma pneumonia. So much is making sense now. We know we have a long road ahead of us but it helps to have a focus. We have changed her diet, increased supplements and continue on antibiotics. We are treating for yeast as well. The Lyme is newly diagnosed so we will have a treatment plan for that soon. I’m thankful for these posts that share info and give hope. Thanks again for the docs name, having a doc on your side is so important!
Rachel Sarnoff
I’m so glad that you found some solutions Christy, and so happy that this community was helpful! Sounds like you are taking some excellent, consistent steps and are an amazing mom. Sending you good healing thoughts for quick recovery. xo
Dawn
Hi There,
I was wondering if you knew the name of the test/tests that were used to diagnose your child with Lyme Disease? Also, have you tried antibiotics for the PANDAS and if so, have you seen results and how long did it take before you did?
Thank you so much!!
Dawn
NJ
Kara O'Brien
Hi Leisa – I second Dr. Roberston! My son started with a severe head tic, anxiety and won’t eat…he ran blood work and he has high Mycoplasma. We hare having tonsils removed tomorrow. We are grateful for a Doctor with an open mind and willing to check things out before passing it off as “crazy” – it is my hope the tonsils clear the bacteria…but if not, it is so good to hear someone else that has had a good experience with Robertson!
Kim Hickey
Your post sounds exactly like what is in my mind. My daughter just got diagnosed, and I am spinning. So much to take in. We just started antibiotics 2 days ago. I am up all night with her, because she wakes up every hour screaming over and over that she can’t get comfortable, and screams in terror if I try to comfort her on any way. My heart is breaking, and I feel so hopeless right now. It is all new, so I just need time to wrap my head around what we are battling. Last Friday was the last time I saw my daughter. She has become completely lost, and I am so scared. I am thankful for posts like yours, because it makes me feel less alone, but also so sad that others are going through this. Have you had success with treatment? Have you found anything that aids in sleep?
C Chapman
I’m so sorry for the late reply in this post. How is your daughter doing? Our daughter no longer has strep, mycoplasma pneumonia and her Lyme has greatly improved. However, we found Babesia, another co-infection of Lyme. It attacks the red blood cells and requires 4-5 months of treatment. It’s one thing after another. Her flares have improved greatly. It’s only times of great stress that she will act out. Sadly, she was unable to start 4th grade due to anxiety and continued fears of another child throwing up. I am now homeschooling in hopes she will return sometime this year. In a lot of ways, she is better, but she is still not the same child. She still won’t go many places, and has separation anxiety. We were unable to travel anywhere this summer, not even by car. Still trying desperately to get our girl back. Praying that treating the Babesia will help.
Catherine
Dear C Chapman,
We are in Ca and my son has PANS/LYME/Myco and Babesia /bartonella as well. He has been out of school since Christmas. Would you mind sharing the details of the Doctor you are working with and maybe the protocol that you think helped. We are in a dire situation right now, Our son has intense anxiety, screaming tics and is hitting himself. How is your daughter doing now? Many thanks
Amy Landes
My daughter had severe PANDAS. She developed severe motor tics in 4th grade and within a few weeks had verbal tics. We treated this successfully with a TMJ mouth appliance from Dr. Stack and Dr. Brown in Vienna, VA. However, as she was entering 6th grade, she developed seizure like convulsive tics, OCD, and severe mood changes. It was like something out of a horror movie. A naturopath recomended we eliminate wheat/gluten, dairy. Corn, soy, sugar, and all processed food, artificial ingredients, colors, preservatives, etc. As all of this left her system within weeks, our sweet girl was back! Whenever she is accidentally exposed to a food sensitivity (usually hidden in a supplement or from some environmental exposure) or she has strep, then tics will increase but never to the extent of being debilitating. I definitely think the diet change helps (although it is a long term process) with the majority of the symptoms of PANDAS.
Amy Landes
My daughter had severe PANDAS. She developed severe motor tics in 4th grade and within a few weeks had verbal tics. We treated this successfully with a TMJ mouth appliance from Dr. Stack and Dr. Brown in Vienna, VA. However, as she was entering 6th grade, she developed seizure like convulsive tics and severe mood changes. It was like something out of a horror movie. A naturopath recomended we eliminate wheat/gluten, dairy. Corn, soy, sugar, and all processed food, artificial ingredients, colors, preservatives, etc. As all of this left her system within weeks, our sweet girl was back! Whenever she is accidentally exposed to a food sensitivity (usually hidden in a supplement or from some environmental exposure, then tics will increase but never to the extent of being debulit
Kevin J
Amy, could you please let me know what doctors in Vienna you went to? We are having difficulty finding doctors that appreciate PANs and PANDAS. Congrats on the recovery!
Samantha W
Hello Mrs. Landes, my friend has PANDAS, but not a severe case. He has been diagnosed with it for almost three years. I was wondering if you have any information about how effective a diet change would be for someone with a milder case of PANDAS. I’m doing lots of research now because he just told me and has little family or financial support and I would like to help the best I can.
Sandy
Hi can you help me, 2 of my kids suffered from pandas. I have heard that essential oils can cure it but haven’t found anybody that can advise me about the oils. I’m desperate for advice. Thanks sandy
Rachel Sarnoff
I don’t have any information on essential oils and PANDAS, I’m sorry. We waited out the symptoms with my daughter and they have not reappeared; she is now nine. I suggest you find a pediatrician who understands the symptoms and believes in the connection to PANDAS (many don’t) and work with him or her on treatment. I know it’s so difficult–my heart goes out to you. Please keep me posted, Sandy.
Lisa
Dear Sandy,
I am working with PANDAS Hope for Healing to help my child using essential oils. We are just beginning this program (in our first/second week). You can look them up online – they have a website with a lot of information: http://www.pandashopeforhealing.com. You fill out a questionnaire, and they will personally contact you with a phone appointment to assist you with using the essential oils . They are very kind and helpful. I hope this helps you!
Laura
What essential oils did you use to help with Pandas?
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Andrea
We know PANDAS all too well in our family. Our son, who has mild ASD, has suffered from it, however I can’t tell you how much homeopathy has helped us conquer it! I, too, am predisposed to it. I never knew how closely linked PANDAS was to OCD, which I’ve dealt with throughout my life. I had a bad strep/PANDAS flareup after the birth of my second daughter and only the homeopathic strep nosode helped me get out of it (I was convinced it was purely postpartum depression until I took the remedy and finally felt relief). It’s good to know the symptoms for myself, as it has helped me understand what my son goes through during a flare-up. But each flare becomes less and less debilitating as we all heal with good clean food, healthy living, and, like I said, homeopathy. But I really feel for parents and children still in the thick of it!
Rachel Sarnoff
Oh that is good to know! Thank you for sharing this Andrea! What brand/remedy were you using?
Andrea
We work through a homeopath, who prescribes the remedies, but the Strep remedy I used after birth is from Remedia (an online homeopathic store). It’s Strep Nos. Interestingly enough, I have had two bouts of strep throat in the last year. The most recent was just last week. It knocked me out completely. I asked my homeopath why I was getting so sick with strep now that we are treating with homeopathy. She said it’s bringing it all to the surface. Up and out is the idea. Each bout with strep becomes less and less severe, according to her, but it keeps it from settling deep within me and causing OCD and other anxieties to flare. So it’s actually like I’m detoxing it from my body, slowly but surely. I was able to get through both bouts of strep with no antibiotics. I just sipped the Strep remedy as she directed twice a day.
Sarah Maizes
This is such a fantastic piece Rachel. I had no idea!!! I can only imagine what an emotional hell you must have been in! I hope you have come to realize by now what an incredible woman and mother you are. Seriously, I am in awe of you every day. My kids should be so lucky.
xo,
Sarah
Rachel Sarnoff
Oh, thank you Sarah. You have had your share I know. And you are an AMAZING mama!! Thanks for writing! xo
Shameela
Hi there,
While I don’t have direct experience with PANDAS, I do have personal experience with overlapping Auto immune diseases such as Hashimoto’s Hypothyroidism, PMLE and a host of other auto immune allergies too numerous to list. What I can recommend is researching the connection between diet and autoimmune reactions. There is a way of eating that minimizes the response for the immune system to attack healthy cells. It’s called the Autoimmune Protocol. Eliminating food allergies is really important as well as avoiding foods such as spirulina that strengthen the immune system and also strengthen the auto immune response. The direct relationship to PANDAS I haven’t researched but in my investigation into my own health, I have come across people of varying auto immune conditions that have benefitted from changing the way they eat to manage their symptoms. Many of us have gone through this journey because the medical establishment’s understanding of autoimmune conditions is at present limited.
I wish you and your children all well. Good luck.
Shameela
Rachel Sarnoff
SO interesting! Thank you Shameela for sharing this! I wish you good HEALTH! xo
Theresa Rosenthal
I recently heard of PANDAS in association with Young Living essential oils, especially the Ningxia Red drink. I read a powerful testimony from parents who had used MonaVie for years and then their child got sick. The symptoms terrified me and I’m so sorry you’ve had to go through this! If you’re interested in the essential oil connection please let me know!
marianne choike
Would love to know what oils were used and how much?
Mara
Hey Rachel – I went through this, and I consider myself kind of an “expert”, I basically with a brilliant Pediatric Neuro Psych from Boston, figured it out – after no one believed me…This was a while ago, but we fought it and the symptoms and strep are gone. I will be happy to talk to you, because it felt so insanely isolating when i was alone dealing with something so scary and hard to “see” by outsiders. I’m a writer, and never wrote anything, because it was so horrible, I just didn’t want to go back – anyway, feel free to email me, and I’ll be happy to help.. Mara,
Rachel Sarnoff
Thanks for sharing Mara! I’m glad to hear the symptoms went away, it seems like the consensus is that kids “grow out” of this. Thank you for writing!
Goldie
Rachel,
I’m groping in the dark – seems you may be able to advise some kind of path from your experiences… any advice on starting with oils? Or go straight with anti biotics???
Jenn
Hello Marathon, I would love to hear from you. I have two sons both diagnosed with PANDAS and possibly PANS. Thank you!
Heidi
Hi mara-I would appreciate any information or suggestions you can give. My son has been dealing with this for 9 years undiagnosed. Even with being aware it has not helped him or myself at all. I’m frustrated with the total disregard of my son’s health in the medical profession. They don’t guide me at all as to proper treatment. We have tried abx but I can’t really say if it helps or not. By the time he shows symptoms it’s kind of too late. Please give me any input you can. Thank you
Yvette
Dear Mara,
We live near Boston and my son is battling PANS from mycoplasma. Would you mind giving me the name of the pediatric neuropsychologist you mentioned?
Thank you for your posts!
Lynne
Hi MArs I saw your post re:pans/pandas. I beleive my son has this . He is 15 now and we are still battling it with him. I’m looking for new things to try, so would be really interested in your info please?
My email is lynnemilne@gmail.com
Thank you so much x
Tanya
Hello I could use any help I can get. I’m extremely concerned about my son who was tested positive for strep this past Monday and shows signs of pandas. I live in Boston
Cherie
I’ve just read the last responses and it’s interesting that these severe bouts seem to wear off. Our daughter’s OCD ones phase in and out but with the panic attacks (see my note above) we didn’t know what else to do but try medication. Due to the phobia of throwing up she wouldn’t eat lost over 10 lbs, in 3 weeks which is a LOT for an 8yo of normal weight! The phobia brought on a fear of food and even with meds and cognitive behavioral therapy for 5 months she still worries multiple times/day if things are going to make her throw up! We would like to phase out meds but will go about that slowly as the starvation and sleeplessness that came w/ panic attacks is unacceptable to us.
I guess my point is – if the child is not physically hurting themselves (starvation, insomnia in our case) it’s a good idea to wait it out as the comments above have shown. People always say “oh they’ll eat eventually” but that is not true of our child. She would’ve ended up w/ an IV in her arm if we hadn’t medicated. I thought she might bang her head on the wall during a few severe panic attacks because she was so desperate to get rid of the fear:-( Neurological issues whether PANDAS or something else are so complicated!! Now that she’s eating enough calories I’m working on eliminating the menacing ingredients in her diet, but it’s hard when she will still only eat about 25 different things, many of which are less than ideal. Go with your instincts!!
Rachel Sarnoff
Wow, I feel for you Cherie! Yes, complicated indeed. It sounds like you really thought through your decisions. I hope these issues are resolved soon! Sending you mama love…please do check back and let me know how things go with your daughter, okay? xo
Cherie
Wow! My husband, “Captain Goggle-r”, has decided my 8yo daughter has PANDAS and we are debating whether or not to test for it. She began a series of OCD behaviors around 4 and they will usually last about 2-3 months before going away only to be replaced a few months later with another one. Often they involve potty issues. About 9 months ago she had a staph (PANDAS can be staph, not just strep we’ve been told) infection on her knee which she transferred to her vulva. It was treated w/ antibiotics. About 3 months after that she suddenly developed severe panic attacks due to a clinical phobia of throwing up. The panic attacks were so severe and frequent (3xs/week) I thought she might hurt herself so we went to a Psychiatrist whom prescribed Zoloft and an extra antihistamine that relaxes children when the attacks are so severe she can’t sleep. It has been totally frightening! If I keep her VERY busy she is panic-free, but I’m worried about up coming vacations when school is out and she gets bored. I hate having her on a medication but we were at wits end and she became afraid of herself:-/ Capt. Google-r says this is consistent w/ PANDAS and that she may grow out of it by puberty, but who knows? Our pediatrician is not sure; of course. The only treatment I know of for PANDAS is HUGE doses, long term ones, of antibiotics which is a nightmare as well. (We have been so, so much healthier as a family by avoiding antibiotics for a few years to letting the natural GI flora balance itself, so I’ve come to loathe the stupid things!)
Whether it’s just a mental health issue or autoimmune, I don’t know yet, but to other parents w/ “crazy” kids – hang in there. Cling to each other and don’t let it rip apart your marriage!!! Do your own research; doctors are often not much help. EAT WELL!!!!!
Rachel Sarnoff
Oh thank you SO much for sharing this perspective, Cherie. We are not alone! It’s terrifying, I know. I have looked into connections between food additives, colorants, artificial flavorings and behavioral issues–it definitely seems that there is a connection. So trying to eliminate those I think is a great thing, and organic as much as you can. An awesome resource is Robyn O’Brien, she writes/speaks a lot about food allergies but there is cross over. PLEASE keep in touch and let me know how you are doing. Sending you love and strength from one mother to another. xo
Samantha
As moms our first instinct is usually the right answer. Unfortunately, most of the behavior you listed: obsession over completely irrational things, tantrums, tics, banging, yanking, screaming… It was a weekly, if not daily occurrence while raising my son with Aspergers. One thing I know is the experience of raising my son has given me a broader perspective of what is truly important.
I am glad for your sake that this was short lived and now your child is back to her normal self, instead of having to adjust to this as a new normal. This was my normal for many years. And yes, as the mother everything is your fault… even if it really isn’t.
Rachel Sarnoff
Samantha, thank you for sharing this. I know many moms who have–and are–living through a similar “new normal.” It can be challenging (to say the least, right?) but I think the flip side is these are highly creative, amazing children so kudos to you for being a nurturing force. And for sharing with our community! xo
Celeste
Hi Rachel!
I had a somewhat similar experience with my son the winter before last. He had just turned five and very suddenly developed OCD-like behaviors and lots of separation anxiety and tantrums. But the most troubling thing was that he would repeat certain phrases over and over in this creepy OCD way and get very upset if we tried to stop him. It was terrifying–like his brain was suddenly broken when he’d been fine a few weeks before. After a few months (and a bunch of expensive sessions with a child psychologist–she told us there was nothing she could do for him until he was older) it gradually went away until I almost forgot about it. Then this past winter, exactly one year later, he started exhibiting some of the same symptoms, but thankfully milder and they went away after a few weeks. After some Googling I concluded he must have had some form of PANDAS since both times this happened were during cold and flu season. I am just posting this in case other people find it through Google and are going through something similar. It was so terrifying but thankfully it passed.
THanks for writing about this!!
Rachel Sarnoff
Thanks for reading, and commenting, Celeste! I do think this sounds like what my daughter went through as well. It’s come back twice since then, and the last time was this year–at age seven. The symptoms are much less dramatic now, so I think that she is growing out of it. I really don’t believe in the “treatment” of high antibiotic doses and/or prozac (?!?!?!). I do believe that we just have to be patient, and love, and wait. It sounds like that’s your treatment, too. Thank you for sharing this with the community! I think PANDAS is so new that many haven’t even heard of it, but just are wondering what the heck is going on. The more we share, the more support we give–and get, don’t you think? xo
Shells
hi this is for Celeste, how old was your son when he went through this? and did it happen again in 2015? Just thinking my son may have had something similar. in Nov 2015 he developed a tic, after an antibiotic it went away. Then in Sept 2016 – he started with some OCD like issues. He is now on antibiotics, hoping it goes away.
Desiree B.
Horrifying Rachel. I’m so sorry you had to go through this. I will watchout extra closely when my 4 year old gets sick for any of these erratic behaviors. Hope you never have to go through that again.
-Des
Rachel Sarnoff
Thanks Des, I hope not, too! 🙂
Margot White
Oh my gosh Rachel – how absolutely terrifying! I thought at one point my son had this… How relieved you must have been to get to the bottom of it…
Rachel Sarnoff
Thanks Margot! Yes, it is scary. We had a recent brush again with PANDAS and another doctor told us the condition is now associated with other illnesses, not just strep. So we’ll wait it out, again. Thanks for reading! xo