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concerned mom

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  1. He weighs about 130 lbs and is on 500 MG Cefaclor 2x a day. We saw an increase in his tics in the past 2 mos and we're waiting for an appt in early July with an ENT to consider a tonsillectomy. I'm not seeing an increase right now in Pandas symptoms other then a slightly increased frequency in tics which has been going on for the past two months. I'm scared.
  2. My son has Pandas and has been on abx for over 18 mos straight. He is having a bad sore throat and it has white spots on it. I am assuming it is strep and have called the doctor and am waiting for a call back. How is this possible? Where do we go from here?
  3. The doctor would not order the blood tests and suggested the anxiety about dying was developmentally normal and/or caused by my son watching fast action animation shows and suggested he seek therapy. Angry. Frustrated. I'll watch him closely the next few days and if he continues to have problems I'll push the issue. If he doesn't show anxiety symptoms I'll let it go for now unless it comes back.
  4. As I suspected, the nurse called me back and said the dr would not order the tests without seeing my son. So we are going in for an appt today. I hate how they make me feel like I'm a crazy hypochondriac. But I guess it's good for the doctor to see us and talk to us directly about my son's symptoms. Thanks philamom, I'll make sure they order the D-NASE B Antibody.
  5. Thanks Kiera, I called in my request for these tests and now I'm waiting for the call from the doctor to try to gently tell me I'm over reacting. But I'll stand firm and insist on the tests!
  6. My 11 year old son has Pandas and is being treated ongoing antibiotics. I've never seen PANDAS symptoms in my younger son (7 years old) until this week. He has had a bad cough for the past 3 weeks. I took him to the doctor last Friday and they did not think it was walking pneumonia but the diagnosed a sinus infection and gave him zithromax which he has taken the past 5 days. 3 days ago he started having extreme fears of dying. He could not get the thoughts out of his mind and he cried about it for an hour before school yesterday and today. He is afraid of dying and afraid of having a painful death. I have never heard anything like this from him before. He says he keeps thinking about scary scenes from the Harry Potter movie he saw months ago. (The movie did not bother him at the time he watched it.) He doesn't show any other signs of PANDAS. Coincidently my 11 year old has been going through an exacerbation of his tics for the past month so I question if some infections are floating around. My husband has had a very bad cough too. I want to ask the pediatrician to check my younger son's ASO. I would also like her to test for mycoplasma. Is there a specific name for that test? Are there other things I should ask her to test for. I'm anticipating some push back from the pediatrician. I don't think she accepts my older son's diagnosis (he's being treated for PANDAS by a neurologist not our regular Ped). What do you suggest?
  7. Thank you both so much! The biofilms stuff is very interesting, but hard to understand. I will study it more because it sounds like it could explain how ds's body still is fighting a strep infection after 18 mos on antibiotics. I followed up with the neurologist asking if we should consider IVIG or PEX and she said both were out of the question because they were expensive and had risks of their own. She did say we could talk to an ENT specialist about a tonsillectomy. We'll follow up in that direction and hope for the best. I hope your children recover soon too! Blakesmom, are you continuing to see improvement following your child's tonsillectomy? I sure hope so! My thoughts and prayers are with all of you!
  8. I thought we were out of the woods. My son (11 years old) was doing very well for over 6 months with only occasional and mild tics. In late February I noticed the tics were more frequent. They have continued to increase in frequency and the movements are becoming more exagerrated and severe. He whips his neck around so much that I am worried that he will injure his neck! He does it 2-5 times an hour most waking hours. He has been on antibiotics for 18 months! His last blood test was in January and his strep titers were still abnormally high but better than his previous test a year earlier. How can he still be fighting a strep infection after all of this time? Is it just living in him? He is very aware of the recent change and embarassed by his tics. I contacted his neurologist and she gave me some suggestions for treating the tics themselves such as ibuprofen or cognative behavioral therapy. She also said we might want to consider resperdal (which scares me). I have sent her a follow up email asking if we should be looking into other methods of treating the PANDAS itself such as a change in antibiotics, tonsilectomy or IVIG or plasmapheresis. Am I over reacting? What do all of you suggest I do?
  9. My son had an MRI but it didn't show inflammation of the basal ganglia, but like others said above, I think the MRI was mainly ordered to rule out other causes of my son's symptoms. My son is allergic to Augmentin. So the first antibiotic he was prescribed was Keflex. We saw improvement right away. I'm not sure why, but after about a month or so our doctor changed the antibiotic to Ceflacor which is in the same family of cephalosporin's as Keflex. He has continued to do well on that. He's been taking it for about a year and a half. I remember the early days of our PANDAS experience and had the same fears as you did. Hang in there! I'm happy to report that my son is back to his old happy self. We still see tics once in awhile if something is going around the school but we don't see the more extreme emotional symptoms and separation anxiety that scared us so much at the beginning.
  10. Thanks everyone! I forgot to mention in my original post that my son has been on antibiotics (Ceflacor) continuously since 9/10.
  11. My DS had a blood test last week. Due to his overwhelming needle phobia, this was just his 3rd blood test since he was first diagnosed with Pandas in September 2010. There are two abnormal findings. The first was his ASO continues to be high. It has decreased since his last test over a year ago, but it is still above normal at 224 with the lab reference range of <150. His first test was 336 in 9/10, then by 12/10 it had dropped to 285 and now down to 224. So we’re moving in the right direction. Is it possible that 224 is actually relatively normal for DS, or is it a suggestion that his antibodies are still raging? The other test that was high was his lymphocytes. They were 42.3 and the normal range is 25 to 33.3. I have read some abstracts of research which suggest that there is a correlation of high lymphocytes and PANDAS and Tourettes, but I’m still trying to wade through the technical information. I asked ds’s pediatrician if she thought the lymphocyte result was a sign of an autoimmune process or inflammation that could be making the brain blood barrier more vulnerable to antibody pass through, but she didn’t think much of the result and told me not to worry. We will be seeing DS's neurologist in a few weeks and I’ll raise the issue with her. She has been the one treating the PANDAS not DS’s pediatrician. My question to you is whether you have seen similar results with your PANDAS kids. Thanks for any input you can offer. Symptomatically DS is doing fairly well now. I just see a few tics once in awhile and we can live with those. They are a little worse right now than they have been, but I suspect that is because there is strep and other illnesses going around his school. At least we're not seeing the emotional lability, separation anxiety etc. that we see with a major flare. Any imput would be appreciated.
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