Plum99 Posted July 19, 2016 Report Share Posted July 19, 2016 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. Link to comment Share on other sites More sharing options...
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!Register a new account
Already have an account? Sign in here.Sign In Now