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3 year old with almost every symptom of Pans/Pandas- a novel


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After a year of a scary downward spiral of my daughter, I finally came across information about Pandas, and so many things have clicked. Besides just being desperate for people to talk to who will not think I am crazy, I am looking for information to deal with this as quickly and efficiently as possible. I am also looking for tips on how to/ what can be covered by insurance. My insurance has already played the game of trying to deny services in the past.

I have so many questions, and I am so appreciative of any help or information at all.

Is 3 too young to have Pandas? What makes me think my daughter has this is an extreme personality change with anxiety, sensory issues, repeating herself over and over (strange things), sudden outbursts of violence and frustration, very hyper, cannot focus, loss of communication skills, extremely rigid, obsessions-big time, no longer enjoys anything, trouble sleeping, extreme separation anxiety at night-sleeps with me now, have to push her to eat and drink, in times of frustration, banging head on wall or floor, biting hands, shrugs shoulders (tic?), I have noticed an eye roll with her 4 times, eyes moving back and forth very quickly in car at times (nystagmus?), eczema.

This wasn't just one flip in personality, but a series of episodes over the last year. They were more mild at first. This last one was the one that started the violence, sleep trouble, and tics. In the past "flare ups" or "episodes", I attributed behavior changes to artificial colors, or other things. Over the past year, she has also been treated for 4 urinary tract infections, none of which showed the signs I was told to look for, like a fever.

I believe the first time this may have started was with a rash that changed, but lasted 6 weeks. However, she was very sick with vomitting and diarrhea for two weeks about a month before the rash. I went in to see the doctor and urgent care multiple times with the rash, because I could also see she had completely lost the light in her eyes, but it was never diagnosed and I was told it could be such and such if she had a fever. My daughter never gets fevers. One urgent care doctor said it looked like a strep rash as soon as he saw her, and he swabbed her throat, but it came back negative. Eventually the rash broke up and she had bumps on her fingers and toes, and the pediatrician told me to watch for a fever because then we would think about Kawasaki disease. When everything had pretty much cleared up, she was left with eczema. I cut dairy, it helped. My daughter was acting like a completely different person. I cut artificial colors, it helped. She had a few infections that made her start acting crazy, I attributed it to pain.

This last one was bad, and I attributed it to a change in schedule. We had just started going to classes for my son's speech delay. My daughter gets overstimulates, and I thought she was losing her mind from it all. But then she started getting worse, and very violent, and then it snowballed. My pediatrician didn't want to do a urine test when I first thought maybe it was a urinary tract infection. She also didn't want to refer her for any evaluations, because at that time I was begging for autism, ocd, anxiety-any kind of diagnosis or help. My son's teacher said she is an emergency and referred me to a different pediatrician. It took weeks to get an appointment, I tried desperately to explain all the symptoms. I asked for a urine test and he sent me home with a cup. I couldn't get my daughter to stop screaming and banging her head against the wall, let alone get her to pee in a cup. I went to urgent care. They said she showed no signs of infections. I begged for antibiotics, I finally got the urine test, and they found an infection. Today, a week later, after calling every single day to get the details of the infection that they said would take 2 days, I was told it was anaerococcus. I thought for sure it would be strep, but I don't even know what this bacteria is. Is this related to strep? Can this be pans? If I don't know the details of anything because I never got bloodwork every time this happened over the past year, what can I do? I couldn't even get bloodwork this time, and she has been so severely disturbed, I literally do not leave the house unless I absolutely have to.

How can I get medical evidence and prove to my new pediatrician that there is a link between my daughter having infections and developing behavior problems and more? Do I just not try to talk to him about it and go to someone else? Who do I go to? I'm so afraid that her brain is swelling and she needs an MRI. Her head is very large. When she was younger, it was monitored. I was told to look for her being sleepy and incoherent as something being wrong. She's hyper and angry, and I still know something is wrong.

Give it to me straight if I'm being crazy. I'm not trusting of doctors anymore since I have been denied tests so many times and there was an infection. I can't filter myself anymore because I'm so worried, and I look like a lunatic begging for antibiotics. If she's too young to have pandas, or something about this points away from it, it would be good for me to know it before I go ranting about it anymore.

I'm one week down with antibiotics, and the immediate change I saw in my daughter the last times isn't there. She's slightly better. I just started round two tonight. Maybe this one will really help, or maybe this is just the new her. I'm desperate to get her back, but I also need a reality check if I'm just being crazy.

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So sorry you're going through this, and that you're being so handily dismissed by medical practitioners who should care more, should know better.

 

She's not too young. She definitely could have PANDAS/PANs. Probably best to go to a doctor who is familiar with PANDAS/PANs and will listen to your full history and all of the clinical signs, in addition to providing testing which will help identify the culprit(s)/infection(s) behind your daughter's recent decline.

 

I don't know where you are geographically, and/or what your options are for traveling to a doctor. But on the pinned threads topic line at the top of this forum, you'll find a list of "doctors who've helped us," with names of practitioners across the country. Some of the better known ones are located in New England (NY/NJ/Conn), Florida and Illinois (Chicago area), but there are others across the country, too.

 

Hang in there. You can and will get some answers. Unfortunately, you might have to "dig" for them a little/lot more than you would if your daughter displayed as many medical signs as she does behavioral ones. It's one of the major curses of this danged illness.

 

Godspeed!

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Although the symptoms dont all overlap, my daughter had a similar course before/into PANDAS at 3 years of age. My daughter had both psych symptoms as well as pain, fatigue, leg weakness etc and we went through almost a year of testing before she got the first major flare. (In the classic definition of PANDAS is necessary and marks the start of the disorder - but in fact my daughter showed relapsing remitting symptoms for 1.5 years beforehand. BTW, when my daughter had that first major flare she was so violent the doc was not able to swab her throat or take a blood draw, but thankfully my son, who was also sick, tested positive to strep.) We also had to fight with doctors who were loath to test anything given the vague and numerous symptoms, and then afterwards with doctors who do not buy into PANDAS. You will have to drive a diagnosis and treatment through the medical system, both doctors and insurance.

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Yes it can be PANDAS/PANS this young. My son was 19 months old at onset - 26 months old at diagnosis. I've been on here since we first heard the term PANDAS in January 2010, so feel free to search my past posts for our journey.

 

For us, it initially seemed like the "terrible twos" on steroids and continued to get worse until we feared our son was completely autistic after his 2nd birthday (he will be 9 in a couple of months - no signs of autism now).

 

Our ped caught it early, and noticed the correlation of aggressive behavior with an impetigo infection he was treated for at 19 months and considered PANDAS immediately. We were lucky. No everyone is that lucky.

 

I echo Nancy's thoughts, consider a specialist ASAP. Not sure where you are, but Dr. Murphy at the Rothman Center in Tampa confirmed our pediatricians diagnosis immediately, so she has seen it this young (even published a case study on my son as being the outlier on the age criteria).

 

Is she on a new antibiotic from what worked the last time? Also, try giving her ibuprofen - standard dose for her weight/age. If that helps with the symptoms, it's a good indicator that you're dealing with inflammation and PANDAS/PANS.

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Thank you all for the responses. They are so helpful. I'm in the Bay Area-California. I got in touch with a specialist and he will make an appointment with me after I get paperwork back to him. Ibpropion is the only way she has been getting any sleep at all. I thought it was because it was easing some kind of pain, but the inflammation completely makes sense. This second antibiotic that was called in seems to have made a difference. I might be jumping the gun on that, but at least she is looking me in the eyes and smiling. I don't know why it's so hard to get an answer out of doctors. First they didn't want to test her at all because they said she didn't show any signs. Then I finally got a urine test and it showed positive for infection, and it took a week to find out what kind of infection it was. I kept asking if it was strep, and even before the test they kept saying no. But when they gave me the names, and one was anaerococcus, I figured I could google it myself. That's what they sent in Penicillin for, and they did it without asking how she was doing. When I google it, I'm so confused. It's also called postreptococcus? Since I had the urine test done at an urgent care, they just keep telling me to follow up with her pediatrician. The soonest appointment is still two weeks away. He's new for us anyway, since I left my last pediatrician after telling us there was no need for a test. And this wasn't the first time I had been denied a simple urine or blood test, then went to an urgent care and found that there was an infection. My head is still spinning, and I'm just watching my daughter eat a bowl of cereal right now like it's nothing. Like this is what she does, she doesn't flip bowls over and scream while clawing at any human who passes her.

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My daughter never gets fevers.

 

This line jumped out at me from you sorry tale. We were dealing with similar issues for many years. We got a Pandas diagnosis, until it was ultimately corrected to Lyme/Bartonella.

 

My daughter never used to get a fever either. But I did realize that she was sick sometimes, and at those times her behavior used to worsen. Fever is a good thing; its the body's way of fighting infection. So, not having a fever would indicate a weakened immune system. In our case this showed up as a low white count. Not terribly low to be a medical concern, but our Lyme doctor said this showed the body had "given up the fight".

 

I would recommend you check your kids for Lyme and coinfections. We were chasing Pandas for 5 years until our diagnosis and treatments were corrected. We also considered ASD's at the time. No trace of that now!

 

Whether this is Pandas or Lyme, it is a long road. But there is hope for a full recovery.

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Thanks for responding. I always felt like the no fevers thing was some kind of signal, but I didn't know what, and expressing that to a doctor once again made me look crazy. The first time I brought it up, I was just casually saying that she has had multiple infections, she has been noticeably sick many times, and aren't fevers the body's way of fighting something off? Couldn't that mean something is wrong with her fighters? Her pediateician was not impressed, and the next time I brought it up he just said "she'll get a fever when she's sick enough." It has always bothered me though. I have read as much about Lyme, but it does seem like symptoms overlap. I am not aware of a tick bite. Any tips for ways I can tell at home before going into debt on the wrong Doctor?

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