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jennapow

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  1. LabMom and MasonsMom - I think you are both right to be looking at PANDAS for your children. I think we sometimes question ourselves when our symptoms don't match the textbook description, but you've both described symptoms that go along with others I've seen in my own children or heard about from other parents. I have one child who developed tics, started wetting himself, and developed episodes of anger and rage. My younger son has Asperger's so it was harder to tell. He had always had OCD and mood issues. But they got progressively worse and he started having urination problems, asking to sl
  2. If you searched the forum you probably found a post from me from a year ago asking the exact same question. DS11 has very similar symptoms. Things started fall of 2015 with urinary frequency/difficulty. Tested for UTI and nothing. Then we got mood swings, school refusal, separation anxiety, couldn't sleep without the light on, wanted me to sleep with him. He deteriorated to 24/7 anger with any small request turning into a rage episode. At the same time he had a red rash on his bottom and severely dry/chapped hands. Things improved drastically after two weeks on Augmentin. The rashes even went
  3. Would a regular strep swab at the doctors office reveal this? My DS improved tremendously after one round of Augmentin (suspected perianal strep but no confirmation- just anecdotal observation that anal rash improved after abx). His symptoms are starting to return 6 weeks post abx. He started another round of Augmentin a week ago. Symptoms are mild but still there. Moodiness, anger, urinary problems, trouble getting to sleep. His Bottom is starting to look a little red and he complained of it feeling "moist" after he went to the bathroom. My other son (also pandas/pans) has also been complaini
  4. Has he not been tested before, or did he just not test positive before? We have never had a positive strep test. My DS finished a course of Augmentin 5 weeks ago and his symptoms resolved but many of them are starting to come back. I'm going to take him in to get checked. Our ped is pandas savvy so she will do a swab for us. Strange thing to say, but congratulations on your positive test!
  5. Good luck with your appointment! For us he ordered ASO and dnaseB titers, anti-nuclear antibody, EBV and mycoplasma as well as total IGG and IGG subclasses. He gave us a prescription for Augmentin which we were able to start right away. He asked about symptoms and did a brief exam with my son. We had a follow up appointment 2 weeks after. Be warned that his interaction with kids is unusual. He always calls the boys "Mary Lou" and asks them if they like to play with Barbies. I think he does it to judge their reaction and social skills. I hope you get some answers!
  6. Just throwing this out here to see if anyone has had perianal testing done for strep? My son just finished 14 days of Augmentin, and according to Dr. K, his positive response to the abx confirms a diagnosis of PANDAS. All of his strep titers were low, and tests for mycoplasma and EBV were negative. I am trying to cover every possible source of infection. I didn't even think of it until now, but my son (age 10) has had a bright red rash around his anus for a while. Occasionally there are also little pimple like spots near it or on his bottom. I suspected it was yeast, and I had been treating it
  7. Diet is definitely an issue. He has been restricting his food choices more and more and has extreme sensory issues to the smell of different foods - to the point that it is a struggle for me to cook any meals at home for the rest of our family. He gets a smoothie every day with probiotics, chia seeds, & coconut oil. Other than that he eats bacon and eggs, peanut butter and jelly sandwiches, hamburgers and hot dogs as his meal options. And of course he eats chips, fries and dessert. At home we use all additive free foods, uncured meats, etc. but we are guilty of eating out more often than w
  8. You have all been so helpful with answering my questions - I am so thankful to have a place to ask them! My DS (10) has the following symptoms: ASD diagnosis. Prior to October was starting to self limit foods, was also demonstrating increased sensitivity to smell. Behavioral regression beginning in October after nonspecific sore throat. Tonsils were puffy but no white spots, no fever. He complained on and off about the sore throat for a few days. At this point he started having more difficulty tolerating any type of adversity. Started refusing more things at school. Very explosive ab
  9. Thank you all so much for taking the time to reply and share your experiences. I am so grateful for finding this board! This process has made me feel so alone and it's so nice to hear from people who have experienced something similar.
  10. The school that they are suggesting we change to is about 25 miles away, so would be about a 45-minute bus ride. It is also a highly structured therapeutic school that only focuses on students with autism. OT and Speech are built into the classroom. They have sent our IEP over and we will probably visit next week. It just seems so extreme compared to what I was expecting for my son. Even at his best, he did require a lot of modifications at our home school and socially he has not made connections with any other kids. He is essentially tuned out to relationships with anyone other than trusted a
  11. This regression started in mid-October. Since that time his behavior and mood have gradually deteriorated and it is a struggle to get him to go to school at all. Last week I just kept him home all week (without a doctor's authorization), and this week he is going to school 2 hours per day. While he is there he is staying in the resource room and being given the choice of whether or not to attend events (art, music, PE, etc.) with his class. When he is "well" he still has autism, and attends our local elementary school with the help of an assistant. He is very high in math, science and reading,
  12. Just wanted to see if anyone's PANDAS doctor has prescribed a homebound placement during a flare. We have just started seeing Dr. K in Chicago. We are not even sure if it is PANDAS but something is going on where my son is not able to function. We have an IEP meeting today to change his school placement. I agree that he can no longer go to our neighborhood school, but I fear with how bad he is doing, that any school is going to be miserable for him right now. Wondering if homebound might be an option while we investigate and try to treat.
  13. We have now completed 5 days of the antibiotic. DS has continued to show much more difficulty with being alone at night, and his urinary problems resurfaced last night (basically he goes to the bathroom urinates a normal amount, but then urine continues to spurt out for another 10 minutes or so). Behaviorally we have not seen much of a difference, other than Monday night. Monday he was cheerful, laughing, interacting with his brother, and not getting upset about things. Since then he is back to being irritable. He has not had a fever at all, but he did complain about a sore throat and a bit o
  14. Thank you so much for all of the resources. I am trying to read as much as I can. We used to see a DAN doctor, but it has been years since we have been in. I got overwhelmed with the whole process, especially with trying to get my kids to take so many supplements that they wouldn't take. We ended up just trying to work with diet and a few key supplements and we just stopped our follow up visits. Right now we are trying to manage this flare, which is so bad that school is ready to outplace my son. We also have an appointment with a psychiatrist for evaluation but I didn't want to start any othe
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