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Would appreciate feedback on Dr. Murphy. I'm a 48yo woman with a recently diagnosed 16yo (PANDAS). Trying to find any support I can as I realize I've been suffering in silence with similar symptoms, especially attention, brain fog, executive fxn. My own handwriting is diminishing before my eyes. Thanks for your help.
Am I imagining things?
Annieo posted a topic in PANS / PANDAS (Lyme included)Hi! I'm new here. My six-year-old daughter has been exhibiting symptoms that have me concerned. Here is her recent medical history: Diagnosed with strep throat 12/14/15. Treated with amoxicillin. Diagnosed with pneumonia 2/2/16. Treated with amoxicillin. Diagnosed with an ear infection 2/24/16. Treated with amoxicillin/clavulanate. On 3/4/16 things went crazy when she had severe urinary symptoms and wouldn't leave the toilet. Finally got her to go to urgent care assuming she had a bladder infection. Negative for UTI. She's been in a pull-up or wearing a pad in her underwear ever since for fear of leaking urine even though she never has. When UTI symptoms didn't resolve, we went back to the ped 3/7/16. Tested positive for group B peri-anal strep 3/8/16. Treated with amoxicillin. Since 3/4 she's had severe anxiety about leaving the house. Missed a fun weekend at a hotel with family that she had been looking forward to. Opted out of a birthday party she had been looking forward to. Refused to go to ballet, which she loves. Refused to go to school for a week, as in, I would have had to take her in her pajamas kicking and screaming. Finally talked her into going, but she only agreed to go if I stayed in the building. She lasted half a day. Back at ped 3/14/06 when she refused to go to school again. Because of hives on her face, doctor switched her from amoxicillin to azithromycin. Doctor said urinary symptoms are not physiological. Gave me information about anxiety in children. She went to school Tuesday through Friday this week, but it's been a struggle. She feels pressure in her throat whenever she eats (reflux?), so she has to take Tums to school with her. On Friday (yesterday) she had a 20 minute meltdown because her socks were bugging her. (And then after school while wearing the same socks she said, "Can I keep these socks forever? They make me feel like I can do anything!") She's been extremely emotional, screaming and stomping off to her bedroom. Also, for the last couple of months she's been afraid to fall asleep by herself, something she never had trouble with before. This anxious, clingy, emotional child is not my child. I don't think her symptoms are severe, but if there's anything I can do to help her, I need to do it. As a little background to our family, my daughter is the youngest of six children. She has a brother who's dealt with some pretty serious medical issues. I'm not a parent who overreacts. I've dealt with enough serious medical stuff that I know not to panic until it's time to panic. Also, my oldest son took his life 17 months ago. Someone suggested my daughter's anxiety is a delayed response to his death. I disagree. She's been plugging along just fine until now. We talk about him. She knows how he died. It's not a topic we avoid. And her anxiety came on very suddenly. Anyway, sorry for the novel. Am I imagining things or does this sound like we're dealing with PANDAS type symptoms?
Could it be PANDAS/PANS PLEASE HELP
daughterincrisis posted a topic in PANS / PANDAS (Lyme included)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.
In the last week, DS has developed an alarming tic where he tries to bite something/someone. He hasn't bitten anyone yet, but he does bite himself (on the fingers, on the knee) and things like blanket, stuffed animals, toothbrush. I'm wondering if this could be a herx reaction from the Biocidin he is taking or a flare up b/c of a recent virus. He started on May 20 with one drop 2x a day...then increase by one drop a day up until 5 drops 2x a day, on the advice of our naturopath. Then May 29 he picked up a cough/cold from his sister that lasted about a week. Around the same time, this biting thing started. The cough is better now, the biting is getting worse. What I'm asking is, basically, what does a herx look like? Does everything just get really worse and more severe? We've cut back on the biocidin to one drop a day, starting today. Giving epsom salt baths and lime/lemon water.
I need help. Don't know what to do next.
Hmrz posted a topic in PANS / PANDAS (Lyme included)My ds is 9 and was dx with pans recently. His symptoms started in December 2012 and it has been up and down since then. We finally explored pandas about 5 months ago and started abx (aug/clav) after 2 months did 5 day steriod burst with good results. Although behaviors improved dramatically we have never gotten back to baseline. Our ped sent us to childrens hospital neurology dept and they did ext bloodwork. That is where his dx came from. The neurologist prescribed ivig which was denied by insurance. We then were referred e to rhuemotologist that said we needed further testing but saw nothing remarkable. We just saw a pediatric infectious disease specialist at cedars Sinai pediatrics and she told us with the amount of antibiotics our ds has been on all symptoms would have cleared by now and the symptoms are prob psychiatric and the improvement coincidentally happened at the same time as treatment. That because he's still not able to go to school it is not medically related and if it were her child she would take him off strong abx. I guess I feel a little beaten down and I'm not sure what to do. If anyone has any imput or help I could really use it. I'm starting to doubt my instincts.