Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by JoyBop

  1. Hello all. I haven't been active here for quite a while. My 10 year old son has had PANDAS since he was 7. We've had our ups and downs and ins and outs. But never again returned to baseline. Recently my son was diagnosed with temporal lobe epilepsy. I can't seem to find a connection between the two disorders bit I have tried. He is on Teileptal now but still having seizures. We follow up with the Nuero tomorrow. He is also on 50g keflex 600mg Trileptal 3 mg intunive and 7.5 mg lexapro. Here's the shocker. We were having blood work done for he Nuero and I asked her to throw in an ASO and it was just slightly over the reference range. (Maybe 20 points or so) I was shocked!!! Now when he was newly diagnosed his levels were 5x the reference range. Should I be concerned about a steep infection?!? Really I'm shocked. Even when his level was through the roof he didn't have a sore throat and wasn't sick. What are you impressions? Should I have a swab done? I'm at a loss.
  2. Make sure they check for anti-thyroid. You can have this autoimmune disorder and still have a normal TSH and free t4
  3. I don't know about the test results you mention but I would call the doc and ask for an explanation. I can tell you both of my pandas kids had tonsillectomy and were seemingly pandas free for the first time. Within 6 weeks they both flared! I have also found that each time they flare their symptoms can be totally different. My son had it he worst. An example of changes I can tell you is that he has phobias and panic attacks but the things he is afraid of changes every time. He presents with completely different symptoms every time, and every kid is so different. This could most definitely be a flare. Have you tried Motrin? Are you still treating with antibiotics? I'm sure some kids present exactly the same way with each flare but I can say with full certainty that my sons changes every single time and can run the gamut from tics, to severe OCD, depressions, ODD like symptoms and overall strange personality.
  4. We have tested for Lymes but not recently. I suppose I will ask the Epileptologist on Friday when we go to our appointment.
  5. Thank you! RNmom if you're out there, let me know! Well most likely be starting anti-seizure meds as soon as we get the imaging and testing done.
  6. I think there are many different kinds of seizures. Have a look at this and see if anything rings a bell. My son has temporal lobe seizures which are considered partial complex seizures. Read here. http://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy I would never have thought to even google the symptoms, they are so strange. But fortunately for me a doctor saw him have one on Sunday and explained what was going on.
  7. We used to give Clonidine to our son and thought it was very helpful, especially to get him to sleep at night. It was very sedating for him so we never could give it in the morning. We started it again this past September to help us through a rough spot and the most bizarre thing happened. It totally changed his personality and made him into a compulsive lier. It was very severe and destroyed his relationships with both friends and teachers. He was a completely different child. We discontinied the clonidine and his personality went back to normal within 5 days. Just thought I would share our extreme story. Our doctors had never seen anything like it before. We are now using Intunive and it seems to work fairly well in taking the edge off of his agitation and he is able to sit still and relax more.
  8. Hi there. I haven't been on ACN for a very long time. My 10 year old has had a long, drawn out journey with PANDAS for the past three years. He has long, hard flares with periods in between where he is manageable, but has never returned to baseline. He had OCD, anxiety, ADHD and traits of ODD. He's on Lexapro, Intunive and Keflex. (He's allergic to pencillin) My son has just been diagnosed with Epilepsy and suffering from temporal lobe seizures, which are about the strangest things I've ever seen. (coming from a PANDAS parent, that is saying a lot!) Anyway, my question is this...are there any other kids out there with PANDAS that also have been having seizures? My son doesn't have any known risk factors for epilepsy and we haven't had our brain imaging or EEGs yet, but one cause for these seizures is encephalitis. This makes me wonder if my son suffered from encephalitis as he was having his first onset of PANDAS 3 years ago. Would love to connect with any PANS or PANDAS parents that also have been dealing with epilepsy. Thanks!
  9. Thank you! That all makes perfect Sense and I can totally relate! We have done all the testing and had his tonsils out which I believed was very helpful. We need to retest now and hopefully get over this two month flare. Thanks again for responding.
  10. I'm so sorry you are going through this me so sorry for your son as well. I have found that a flare will continue to play its course after an illness even on abx. With that said I would keep him on a higher dose until he has been recivered for several months. My child has to tell me he loves me every other minute of the day. It sounds sweet but it's a "checking" OCD and they are asking for constant reassurance. i also hear "you're the best mommy in the whole wide world" a million times a day but I'm supposed to respond like its the first time I've ever heard such a thing and be overjoyed. Its so hard.
  11. Thanks aWilliams! It was only a blip? I'm just trying to make sense of this because it's been two months and two strep exposures and things are escalating.
  12. That's not a bad idea for the short term. I would imagine there are very close quarters at camp and for whatever reason, strep seems to be going around.
  13. We are also in Nee England, as you know. We did try Zithromax for a while with both kids, and both kids got considerably worse so we switched then back to Keflex. My son had an allergy to penicillin but passed the test recently. We may consider trailing him on augmentin. Mommy bee, that's so awful that your child for strep while on abx. We are going in on Monday and hopefully they will want to test him for strep.
  14. Mommybee has your child gotten strep infections while on abx? My child is flaring horribly now after being exposed twice to kids with strep the day their symptoms began. (Hours before their fever) He is on 500mg Keflex BID.
  15. I agree that bloodwork can be helpful at times but it's not an end all answer. It was helpful in our case because we had documentation of all the changes in behavior which coincided with a strep infection. At the time no one made the association. It was 6 months later hat a local psychiatrist suggested the disorder as being the culprit. We tested him again along with bloodwork and it confirmed strep. However we also learned that our son doesn't make any anti d nase so unless we catch an active elevated ASO it's of no help. At MGH they tell us not to chase the Titres as its not all that helpful. They don't test the blood any more than every six months unless there's a severe flare. To the original OP I want to say that two weeks of abx is not a long enough time to see dramatic effects. It took a minimum of 6 weeks for our two children to see any dramatic improvement. My advice is to be patient, keep taking those abx and in the meantime find yourself a good doc that does treat pandas seriously. Good luck!!
  16. I agree that ar times it's hard to tell where Pandas begins and learned behaviors end. But then when your child has another massive exacerbation you remember how bad things can be. During my sons relative well period we saw what we accepted as his new baseline. We saw mild OCD that was not life inhibiting and mild to moderate generalized anxiety that was manageable thanks to great coping skills learned through CBT. Now my child is in such a horrible flare that he can't do any schoolwork at all. There are only 8 elementary students in his entire school. His teacher is so supportive and compassionate and is so kind and patient with him. He was an outstanding student but now he can't do a single assignment, explodes at recess and is chewing everything that isn't tied down in the classroom, including items that don't belong to him. I suppose there are many similarities between CBT and Ma as both allow them to learn to regulate themselves and builds confidence. Whatever works!! I can't wait to get back to life as usual.
  17. Mommybee is there anyway you could send me some links to this study? We are not doing exposures now as my kid is a wreck, but I would love to help educate our CBT therapist. She asked me if I had any literature. I searched but didn't find anything. Perhaps I'll use Dr Henin name. I am not enrolled in MGH CBT program. Oir appt on Minday with Dr Willliams can't come soon enough! Thank you for your response!
  18. Does anyone else have a child who goes into a horrible flare after being exposed to someone else with an active strep infection? My son was doing quite well in recovery for many months. Then we went bowling with his friend, who seemed fine at the time. The froend broke into a high fever later that evening. Thenext day the mom called to say he had strep. My kid has been in a horrible flare since that day. In addition, last Saturday we had a repeat of the same scenario. A child was at our house and fine. He left and our son freaked out with unbearable panic, ocd and strange behavior s like we haven't seen in a long time. The next day I heard that boy was sick. I asked the mom to take him for the strep test and sure enough it was positive. Now my son has been exposed to two strep infections prior to their having symptoms. does anyone else experience this? And if so how long does it last! It's been 8 weeks since the first and one week since the second exposure and no signs of getting better.
  19. Can you see if there are any scholarships available. Many camps give a certain amount of scholarships to the local elementary schools bit don't advertise that. Also, apply for scholarships with the camps you think your child would be successful at. I did that last year and my child was able to attend two weeks of a wonderful camp that would have cost us a fortune.
  20. Thank you PR40. Glad you found the right activity for your child. I think finding the right instructor is as important for that matter. I know many children with adhd that MA had done wonders for. Right now I can't get my child to do anything. He won't even get out of the car for soccer, which he loves. And normally he loved bike riding but is now driving off the trail, hitting trees, crying and panicking over the site of any flying insect. What a mess.
  21. Thank you Maryaw. We are currently giving him 400mg of Motrin twice s day. We used to give him the omega 3 snd it never did anything to help at all so we stopped. (we gave it to him for about a year) we find Motrin does make a big difference!
  22. My son has had on and off GI problems since he was born. I would look at potential food intolerances or allergies. In our case all of those symptoms were from foods that were triggering a chain reaction of autoimmune responses. Would you consider running some blood work for food allergies?
  23. We tried it and it was a major fail. He loved it when he was well but in a flare he is so dis-regulated, uncoordinated and injury prone. Then he gets really embarrassed by his clumsiness, and feels awful about himself and refuses to go back. Every child is so different when it comes to PANDAS symptoms and even treatments that they respond to. CBT has been great in some ways and has given him skills and strategies to cope. But when he's in an all out flare nothing helps. Also, it's very hard to find the right therapist. We went through 5 before finding the right one that has helped our family in so many ways.
  24. That's awesome Jmacdonald. You are one of the lucky ones!' I hope your child's recovery continues!
  25. Yes, we see Pasternack , Walters, Williams, and Yuan (GI). We previously saw Dr Geller. All have been the most compassionate and wonderful doctors and we are so fortunate to be a part of that clinic. I'm fairly certain we made the right decision to stop cbt because he was so anxious about it that it was driving him insane. He's a little more relaxed now knowing no one is going to force him to face his fears. At least not until he is ready! Our appointment on Monday can't come soon enough. We haven't been seen there since last June.
  • Create New...