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  1. Another update from daughterincrisis. I received a call from ID doctor the day after our appointment and he offically diagnosed her with PANDAS. Her strep blood tests were (AS0) 940 and B-Nasal ( can't remember what second test was called) 600. He started her on 250 mg twice a day on Keflex for only 10 days and then for the last four days on Rifampin. This is day four and I am totally seeing signs of my old daughter back. My new worry is to find a PANDAS doc that will keep the Keflex going because I know if we stop after 10 days the symptoms will come back. I have a couple of leads to get into a PANDAS doctor this week hopefully. Has anyone had their child on Rifampin in addition to Keflex? Thanks again for everyones support. You have all been so helpful!
  2. Thanks to all the people that wrote in with advice and sharing their stories. This was very helpful. As a follow up we saw an Infectiouse disease doctor at the hospital in our area. I was told by another parent that this would most likely not turn out well because they do not have the knowledge about Pans/Pandas. After spending over an hour going over everything the doctor did say that it sounds like Pans/Pandas but then he kept asking me if she had been bullied at school. I am so frusterated. I have been to my DD's PCP 5 times since February, started my daughter in therapy, took her to a psycharist, and an allergist with no answers given and still have a very sick child on my hands. How insulting and frusterating this appointment was. In the end he said that she could very well have Pans/Pandas but until he knows the results of the blood tests for strep there is nothing he can do but he suggests she continue with her counseling. He said he would only give amox if she tested positive for strep. I felt so frusterated with this appointment and wish I could take back the time all of this took. Since I had a feeling that this appointment would not turn out well, I also made an appointment with a PANS/PANDAS specialist but can't get in until Octoer. So while I wait for results from strep test I have a couple of questions. If the blood tests that were taken today on my DD come back negative how can I still get help for her while I am waiting for the appointment in October. I was given another name of a doctor that I am going to call tomorrow but I am sure they will have a long wait also. Any suggestions?
  3. Thanks so much Melmix, so sorry about your son. Does anyone know of any specialist in the Michigan or Ohio area?
  4. I live in Michigan and need some names of any PANS/PANDAS Doctors that can be recommened in Michigan or Ohio. If none in Michigan or Ohio than Chicago would be an option. Thanks for the help.
  5. I really need some help. My family is in crisis mode. Before Febuary 23, 2015 my 8 year old daughter who was adopted from guatemala at 5 months old was a lovable young lady. She loved school, had friends, was very athletic, followed rules and was basically a very normal wonderful girl. She was a very easy baby and never really experienced any terrible two's or ever had any problem separating from myself or my husband. This all changed this last February. She came home from school and had a two hour rage that involved hitting me, throwing objects and running around the house out of control. After she was calm I tried to figure out what was making her so upset. The only thing that made sense to me was that a girl in her class that was adopted from Guatemala presented in front of the class about being adopted. So I thought the melt down was related to adoption issues. For the rest of that week she would come home each night and have 2-3 hour rages. She would start pushing me and then it would turn into hitting me and going after her brother and throwing objects. She would go from having a huge rage to crying and saying she wanted to die. She said that she did not want to feel like this any more and said she wanted to be dead. During this time she would continue to go to school and have no issues at school. Anything from asking her to brush her teeth to turning off the TV was a trigger for her rages. Homework started to be a huge issue, asking her to complete homework would set off a rage. Her bedtime routine turned into a huge battle. Her rages/depression when she was home continued for three solid weeks. In March she went from having rages every day to being afraid she would throw up and she would walk around the house with a throw up bucket. She stopped eating. She would only eat maybe a cup of rice or noodles a day and would eat nothing else. She lost 6 pound from February to April. She also started to refuse to go to school. She started complaining of stomach aches and would throw huge rages when I tried to get her out the door in the morning. When I finally got her to school she would refuse to go into the lunch room because she said the smell of the food and the sound made her feel sick and she was afraid she would throw up. She also went through times where she would not leave the couch and she would complain of joint pains and stomach pains. She would cry if I left her side and would go into a rage if I had to leave the house. Because she never had a fever and never actually threw up I did not take her to the doctor. I finally did take her to the doctor and they ran a strep test, and ran other blood tests. Everything came back normal. She continued to have rages and also continued to not eat, complain about her stomach and have major anxiety about school, throwing up and major, major separation anxiety. She also had a change in her voice. It was sort of like baby talk but it was really strange. This went on for several more weeks so I again I took her back to her doctor. They looked at her urine and found she had a UTI. They put her on amoxicillin for 10 days. During those ten days she did not have one rage and did not complain of any pains. It was the best ten days we have had in all of this nightmare. After we stopped the amoxicillin she went back to having rages and all the other symptoms. Since the second week of all of this I had her going to a therapist. Her therapist worked with her on adoption issues and thought the rages were due to the fact that she is adopted. I really felt that this was not what was causing the rages and all the other behaviors. I then also took her to an allergist thinking maybe food allergies could be causing all of this and then I also took he to a psychiatrist. The allergist said no allergies to food and the psychiatrist was really not sure what she had. I was starting to think she was showing signs of early onset bipolar but this also didn't seem right to me. So I am back to square one with all of this. Just tonight she had an hour rage and put a hole in our door. A friend of mine told me to research PANDAS/PANS syndrome. I have done a lot of reading on the syndrome and I really am wondering if this is what she could have. I called her doctor and her doctor told me he did not think that was what she has going on, so again I am back to trying to figure out what has happened to my daughter. Our family is in crisis mode and we don't know how much more of all of this we can take. We need an answer and don't know to do. I would be so happy for any suggestions. Daugherincrisis.
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