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  1. My daughter would also refuse to shower and constantly washed her hands. OCD does not make any sense an can't be made logical. One day she finally told me that she was afraid of the chemicals in the body wash and hair soap and it ran down her whole body and she could never get it all off. I was afraid to ask her why the hand soap was different because I did not want her thinking about it too much. She was also afraid of the soap the dishes were washed in and laundry detergent. At one point she had so many different OCD issues I thought I was loosing my mind that I could not help her. One Christmas morning was the worst after she opened her gifts she started sobbing that she could not play with any of them because she touched them and they were contaminated. I went to hug her and she was afraid she would contaminate me. She ripped off all her clothes ran outside and laid in the snow naked. She said there is nowhere she can be that is not contaminated and where she felt ok. Everyday I would have to buy her new clothes because we could not wash them and after a few hours they were contaminated again. Shirts, pants, underwear, socks, shoes, jackets. These are things that many people can't understand and even if they say they do they can't really. The good thing is everyone hear has a better understanding of the confusion, anger, sadness, triumph, fight, dedication and energy it takes to see this through. On the upside the CBT helps and we reinforced it at home. Her friends knew she had PANDAS OCD and also worked at helping her. She also took SSRI. We were lucky that the IVIG seems to have cured all her symptoms for almost 2 years. It takes time and effort but it does get better. There are really tough days and then days you can see glimmers of your child again. Hang in there!
  2. My child 16 refused to take any type of medication. When speaking to her psychiatrist he told us that when someone is experiencing mental health problems they normally refuse medication and this adds to the complexity of the treatment. The psychiatrist prescribed her prozac to try since her sister was taking it at the time. She was 16 mild OCD and general anxiety disorder and would never complete any medication prescribed or stopped it early. This time I told her I would not allow her to drive if she was not going to take this medication. If my child needed an antibiotic for treatment of pneumonia it was my job as her mother to make sure she took it to help her heal. I would not allow her to decide not to take the medication. It was a battle everyday but when she hit a level where it started to relieve her symptoms she told me she thought not taking the medication was part of the disorder. She takes her medication everyday without me reminding her because she feels so much better. However, I have also explained to her if she should reach a point where it is no longer working she might not recognize it and we may have to go through this again. She wrote it in her journal so if she ever get to that point of experiencing poor mental heath again she can see her own words. Hang in there sometimes being the bad guy actually produces great results.
  3. extreme expense of IVIG-88K !

    That sound crazy. My understanding is IVIG drug is normally $1000 for every 10 lbs.
  4. I have a child with PANDAS and a child with general anxiety disorder mild OCD and sensory sensitivity. Your child sound very similar to my daughter with anxiety disorder. She got very angry at noises, humming, TV, sound of bags especially the more stressed she was. She had difficulty sleeping because of the anxiety and she also experienced the full body shiver thing. I thought it look like a seizure sometimes. She had intrusive thoughts and racing thoughts and sometimes could not keep track of anything. I thought she had ADHD. She refused to wear certain things and did not like us touching her. The psychiatrist said it appeared as though she had ADHD but it was her anxiety and she also had a sensory disorder. They went through a few medications before finding the right one. The put her on prozac that finally worked. Intrusive thoughts gone, no shivering, sleeping, not snapping at everyone for noises and demanding everyone is quite while she talks. Decreased anxiety, able to touch dirty dishes, touch people, have people touch her. She had CBT to help with sensory disorder and OCD and most all symptoms are gone unless she has abnormally high levels of stress. but she has tools to help her get through the really tough times.
  5. A new norm?

    That is pretty much the same with my child except she never really had a bad flare after the IVIG. Almost 2 years since treatment no real symptoms. When she is around someone with strep or gets strep she wakes up and is off. She experiences very mild symptoms. We start her the antibiotic and by the third day she is symptom free again. I try not to look back and stay positive looking forward. We are very blessed.
  6. Intrusive thoughts are the hardest to deal with. You don't know everything they are thinking because the psychologist told us if they even have to repeat it may set them over the edge. Most of the time they only tell us the small stuff. I feel for you PANDAS does suck to watch children suffer and be almost helpless. Advil made some relief and maybe an SSRI while waiting for PANDAS treatment. We did therapy with my child and tried to get her to take her bad thoughts and insert something funny with it to divert her mind on a new path. We also assured her no matter what she thought no matter how horrible would always love her no matter what she said. Hang in there with the right course of treatment. It will improve. I'll pray for you to have strength. Having three children suffering must be overwhelming. Remember to try to take some time for yourself so you can be at your best for your children.
  7. Intrusive Thoughts

    I have a child who has and general anxiety disorder and another child who has PANDAS. My daughter with general anxiety disorder intrusive thoughts, racing thoughts and mouth her words. She was treated with prozac and and it stopped the symptoms. She said she feels so much better and can think straight without stress overwhelming her life. My daughter with PANDAS had the IVIG and has had no symptoms for almost two years. It was fantastic we saw the best results around 6 month mark.
  8. IVIG - really worth it?

    IVIG gave me my 7 daughter back. I would do it again in a heartbeat.
  9. New here - missing school question

    My daughters school has been extremely supportive. My husband and I had a meeting with all the teacher, nurse, office staff and cafeteria employees. She had a letter from her psychiatrist and neurologist about PANDAS. We supplied them with educational material to help them understand some of the problems she was having. We also explained that it may be better and than worse again. We received a 504 about past an current symptoms she was experiencing. We normally gave the counselor a heads up in the morning if symptoms were bad and what problems she was experiencing. They were excellent working with her and she never missed a day of school. There were times I did not know how the school handled her through out the day but our psychologist told us once she misses school it will be harder to get her back. Each day we received a report of her behavior or any problems she experienced. It was so detailed it told us if she ate her lunch. She had lunch with the counselor at school once a week and also took self esteem classes at school. I was nervous about explaining all this to them but they were so receptive and helpful. It also let me know how may services they had that I was not aware of. I am thankful for them every day. The best part is they just did her plan for next year and said they will still keep the 504 but she has not needed it this year.
  10. Our doctor recommended sublingual allergy drops. He felt allergy symptoms tax the bodies immune system so anything that can decrease an immune response would help. Allegra and Claritin never really helped that I noticed. However, the allergy drops seem to be making a big difference.
  11. Before IVIG, separation anxiety, contamination issues, fear of chemicals, obsessive thoughts, urination frequency, rages, baby like behavior, sleeplessness, refusal to eat, difficulty walking, facial grimacing, poor handwriting, excessive energy, fear of bugs, electricity, showers, and more. After IVIG she was sick for two days with headache and vomiting. Four weeks out spike in behavior problems, 3 months out was eating, taking showers, wearing same clothes, 6 most symptoms gone except fear of poison. By one year out all symptoms gone. I would spend the money again for the IVIG it was worth every penny it gave me my child back.
  12. try: www.pandasitalia.it
  13. How often have you done IVIG

    Once at age 7 had IVIG, had mild set back at 4 weeks. Each month after that recovered from different symptoms. By 6 month most symptoms were gone. One year later it is like it never happened. Once she gets exposed to strep she has mild symptoms for the first three days. We choose not to keep her on antibiotics they make her ill. By the third day on the antibiotics they symptoms are gone. We always found that Advil seemed to help best when she was having symptoms. Going on 1 1/2 years with no symptoms.
  14. This is great! I wish our family could attend. Hopefully next time we get something on the East Coast.
  15. Help, I am losing my mind

    My child took quite some time to tell me about her bad obsessive thoughts. When she first told me they were little things like I am having bad thoughts about things. I took me a long time to convince her I would love her and understand any bad thoughts she had. I told her bad things I think sometime to get her started. She overtime expressed she was having thoughts of dying, killing other people, hated god, she hated us and wanted us dead, could not get cuss words out of her head and more. I just hugged her while inside I was struggling with this information and scared. She said she knew her thoughts were not normal and did not want anyone to know. She said she really did not feel this way and loved us but could not get the thoughts out of her head. She was afraid we would not love her, people would make fun or her be afraid of her. If they let any small detail go they are feeling you out for what they can share with you and are having more difficulty than you know. Make sure you let him understand you will love him no matter what he feels and can share anything with you. We consulted a psychiatrist for PANDAS OCD with his care and the neurologist all the symptoms resolved.