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Looking for Advice - Behavioral Issue or Could be PANDAS

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Hello, I'm looking for advice about my 5 year old daughter. We are trying to determine if she is having behavioral issues or if she could have PANDAS.

 

As a little background, she has had recurrent throat infections (many times strep, sometimes not conclusive) for the past couple years. Her tonsils have been very enlarged for about a year, and she is having them removed next month. She has also been diagnosed with autoimmune hives that have covered her body (they do respond to antihistamines) for about a year. She also has a history of having behavioral reactions to artificial food dye, and previously had a milk protein (FPIES) allergy that she has since outgrown.

 

A little over a year ago she had strep and her behavior was very "off". Very defiant, seemed hyper, etc. But, it improved. Shortly after that she had a sudden raging unexplainable tantrum, was afraid to be without me, physically fought me and her babysitter from trying to get her into her car seat. It was so aggressive and abnormal that I drove her immediately to the pediatrician's office. It turned out she still had a tonsil infection. It took a couple weeks but her behavior returned to normal, she wasn't having separation anxiety, etc. Since then, every time she is sick, she has crazy tantrums or very defiant behavior beforehand and sometimes after. For most of the spring, she was throwing daily tantrums in the evening, became very constipated (which we initially thought was the cause of the behavior, but now think it was partly a behavioral thing because she would refuse to try to go), and she ended up having a double ear infection and was congested for the whole time. Again, off and on the symptoms would come and go. The tantrums would last for two hours sometimes, lots of mean talk, crazy laughter, spitting, hitting, throwing things, hiding in a closet, trying to get away from me and my husband, but then wanting me at the same time. They typically end because she is physically exhausted or sometimes she will cry uncontrollably until she's exhausted. She will often not remember the tantrum, and can never explain what she is upset about. The end of the summer improved (she wasn't sick), and it all came back when she got sick again in the fall. It's been off and on - she can go weeks with "normal" behavior. Every time she is sick (sometimes a sinus infection, sometimes strep) her behavior changes drastically. She is very well behaved at school (with the exception of two infections ago, she was not herself at school but the nurse couldn't find anything obviously physically wrong with her...she barely spoke, looked in a daze, etc...had a high fever and strep the next day). and for other caregivers. She typically has tantrums at night (they have occurred at other times but not often), has a lot of trouble with bedtime and now usually needs someone in her room to fall asleep (this was never the case before). We can often sense when it's going to be a bad night because she starts acting "off" or overly silly, or can't seem to settle her body down and stay still to read a book. She also had a two week period recently where she was incredibly defiant about everything all day long, improved after a few days on antibiotics for strep. She often complains of lower leg and feet pain which is new. She often does baby talk and talks about wanting to pretend to be a baby again. She has also become very self-conscious and doesn't want me to say anything positive or negative about her to anyone, or relay a story about her. The pediatrician thinks it's behavioral and she can't cope with her constant sickness. It seems very much out of her control though. My husband is a social worker and also thinks it's beyond behavioral. He has said if she didn't have weeks of being "normal", he would think it was ODD or something else. She doesn't seem to have any OCD though. The only thing I have noticed is that often when she finally calms down, she will count on her right hand.

 

Anyway, I recently saw a local mom post about PANDAS and it sounded very similar in many ways to what we are dealing with. However, we've had a lot of change (new school, new house) in the past year and she has had a lot of sickness, so I'm questioning if we should try to seek an evaluation for PANDAS or seek out a behavioral specialist. Does anyone's child seem significantly better in between infections? Behave "normally" during the day and typically behave fine for other caregivers? Thank you!!!!

Edited by MLL

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This sounds so much like my daughter right before I heard of Pandas. Everything from the hives, throat and ear infections, behavioral response to food dyes, milk allergy (my daughter's didn't resolve itself though), defiant, hyper, raging tantrums, separation anxiety, inconcistent behaviors that didn't make sense, spitting, hitting, not speaking, foot and leg pain (mine also has knee, hip, shoulder, neck, eye, and head pain, but foot pain is one of her biggest complaints), self conscious. At first I went the behavioral route, even though it didn't make sense to me how she could become a completely different child so quickly, but she also seemed to have similar fits of the same behavioral symptoms with past infections. When I found Pandas information, after she had gotten so much worse she was unable to walk at times, and was barely speaking at all, banging her head, scratching herself during rages- she responded immediately to antibiotics and was better than 100% when a second antibiotic was added. Whether she has Pandas or Lyme or something else, I don't even know. But I know that behavioral problems don't go away with antibiotics. I also know that the worst thing for her has been having inconsistent treatment. Every time she has been treated with antibiotics and stopped, she gets worse than before and it seems harder to get her back.

So I don't have any advice, because I'm also still figuring it out. I just wanted to let you know that my daughter sounds exactly like yours and antibiotics changed her drastically.

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That definitely sounds like PANDAS to me. The wax and wane pattern you describe is a hallmark of PANDAS. I can tell you from personal experience that there may be OCD that is only in her head or well concealed. Have you observed tics/abnormal movements? Even without tics/OCD, ("required" for a PANDAS diagnosis) I think there is too much here to ignore.

Where are you located?

So sorry you're going through this. Let me know if you have any questions.

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PLUM99,I'm so sorry to hear you are going through this with your daughter. We have also seen the behavior improve multiple times with antibiotics. I think the thing that confuses us the most is that she can be completely "normal" for long time periods but then suddenly become out of control. It's also confusing that with very few exceptions, she behaves perfectly fine with people other than my husband and I. Some family members think we are just overreacting and that she's just having normal childhood behavior and that we must just not be responding to it effectively. (My parents have witnessed the behavior and they also think that it is far beyond the realm of typical childhood tantrum or defiance.) I feel like we've tried every single thing possible to deal with it. The things that she will respond to when she is behaving "normally", she will not respond to at all when in one of these tantrums. During the breaks in behavior we start questioning if it really is just behavioral. But, then it happens again and we can see that she has no control over what's happening. Good luck to you. I hope you find a clear diagnosis and get the right treatment for your daughter.

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That definitely sounds like PANDAS to me. The wax and wane pattern you describe is a hallmark of PANDAS. I can tell you from personal experience that there may be OCD that is only in her head or well concealed. Have you observed tics/abnormal movements? Even without tics/OCD, ("required" for a PANDAS diagnosis) I think there is too much here to ignore.

Where are you located?

So sorry you're going through this. Let me know if you have any questions.

Thank you for your response Eliself. We haven't noticed any tics or OCD. Recently she's screamed during tantrums she screams that things (like her room which she loves and is actually really beautiful) are "gross" or "disgusting" to her. In the past, but not recently, she has wanted to change her pajamas multiple times during a tantrum. But I don't know if either of those have any significance.

 

Do you have PANDAS? How did you initially get a diagnosis?

 

We are in Massachusetts.

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MLL, I probably should have added that my daughter was diagnosed with Pandas. Really, that didn't make anything more clear, other than allowing me to watch her respond to antibiotics again. I don't think it seems that crazy that your daughter would hold it together for others and fall apart at home. There was a 2 month period of time where I don't think there was any difference between home and out of the home, where she was just gone 24/7. But after treating an infection with antibiotics, then going off, trying to find a Pandas doctor, going back on and off and so on, my daughter would be at points where she was pretty good, but she would go out of her way to hide that she was upset about something "dirty" or "wet". To people only seeing bits and peices of it, she looked like a child being a child, maybe some sibling rivalry and behavioral problems when she'd hit her brother or be defiant. Because I know her, and because she would also talk to me at times when she was calm about things scaring her, I know what to look for. It's like a snowball effect with my daughter, and if her fears snowball out of control, the second she has a chance to break (usually in her comfort zone), she lets it all out. Still, this whole situation, seemingly behavioral, is changed by antibiotics, but also food. Since your daughter also had the milk allergy and dye intolerance, like mine did, maybe there are also hidden food allergies? I thought I had ours under control after doing allergy tests that revealed many allergies-both ige and igg. I didn't realize until very recently that there were other foods she was eating regularly (and I would also say addicted to) that were adding to her behavioral symptoms.

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It sounds like PANDAS. Especially the fact that she is very well behaved with others. My son is now 13 and was that way as well. Friends thought it was me because he would have really long tantrums and get extremely angry but only with me. People often think that means it is a matter of parenting, but think of how people who are very depressed often hold it together at work or in school. No one there suspects a thing. My son was diagnosed a year and a half ago. He had PANDAS for many years (including rage when he was little, a period of severe separation anxiety when he was 8, intrusive thoughts, anxiety, serious problems in math and other cognitive problems, etc). He was treated with antibiotics, tonsillectomy, and then IVIG. It has led to a remarkable improvement. In retrospect, I so wish I had known he needed he needed treatment when he was little. It would have prevented a lot of misery for him and for me.

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Do you have PANDAS? How did you initially get a diagnosis?

We are in Massachusetts.

 

I do have PANDAS. I am 15 and have probably had it since age two. I actually mentioned PANDAS to my mom who eventually agreed we should look into it. I was diagnosed in October.

We don't have a PANDAS doctor here in Minnesota, but an integrative Nurse Practitioner diagnosed me and has been treating me until December.

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Thank you for all of the replies. It's been an especially bad week. She has been good most of the day the past two days (had meltdowns both mornings), but has had absolute out of control tantrums at bedtime for 6 days. We were originally going to wait and see how things were after her tonsil surgery next month. But, I'm thinking of trying to reach out to a specialist tomorrow. We have kind of just now come to the realization (which I think has been confirmed by the responses here) that this is something more than a behavior issue. I have told her allergist, GI, and ENT that her behavior's been off, and I've gone into a bit more detail with her pediatrician's office. Not much advice from the allergist or ENT, the pediatrician has given some suggestions to work on behavior which have not worked, and they have given us names of a few behavioral therapists to consider. My husband feels very strongly that behavior therapy, at least on its own, will not work. Should I revisit the behavior with the ENT? Do most ENTs know much about PANDAS? Or just try the immunologist/infectious disease Doctor that was recommend by another mom? I'm so heartbroken over what is happening to her and I just want her to be well.

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It sounds like PANDAS. Especially the fact that she is very well behaved with others. My son is now 13 and was that way as well. Friends thought it was me because he would have really long tantrums and get extremely angry but only with me. People often think that means it is a matter of parenting, but think of how people who are very depressed often hold it together at work or in school. No one there suspects a thing. My son was diagnosed a year and a half ago. He had PANDAS for many years (including rage when he was little, a period of severe separation anxiety when he was 8, intrusive thoughts, anxiety, serious problems in math and other cognitive problems, etc). He was treated with antibiotics, tonsillectomy, and then IVIG. It has led to a remarkable improvement. In retrospect, I so wish I had known he needed he needed treatment when he was little. It would have prevented a lot of misery for him and for me.

Thank you ejh. I think the comparison to someone who is depressed helped me to wrap my mind around it a bit. I think I keep believing everyone around me that points out she only does it for me so it must have something to do with me and my husband and how we are dealing with her. She also typically only does it at night which makes me question if it's about bedtime, but no matter what we do, nothing works when she is in one of these phases. Your comment made me think about that fact that when I cry about all we are going through, I realize I typically only do it at night on my own when I am not busy (or on my commute in my car) and there's nothing else for me to do but think. And if I cry to someone, it's only to my husband, mom and very closest friends, but otherwise I try really hard to keep it together (the emotional exhaustion is definitely taking its toll though).

She also mostly wants me during a tantrum, even though she's being incredibly mean to me during it. She adores her dad too, but is most comforted by me in any situation, so I think that's why she wants me the most.

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MLL, my daughter is the worst at night too. Every since this all started for her, even at her best times, from the end of dinner to sleep was the worst. Some things that have helped her are getting a good water filter for her bath, and melatonin has been a miracle. Some things she was still eating that didn't show up on allergy tests were making her react, so I'm super careful to give her easy to digest, foods she doesn't react to at dinner especially. Also, I just eventually got her to talk about what upsets her so much at night, and it was things like she's afraid to sleep alone, she's afraid of an odor in her closet (no idea). Not that being afraid of things and sleeping with me forever is normal or a solution, but it's a lot better than her having meltdowns and attacking everyone in sight, or repeating herself nonstop until she's exhausted.

My daughter has had times of being very mean to me too. She used to wake up in the middle of the night and head butt me. But now I'm glad she did, because I wasn't able to get the message that something was medically wrong until she beat it into my head like that.

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