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Everything posted by becjonz

  1. I decided this year to let the teachers get to know my son a bit since he has been in remission lately and today on the 7th day of school I sent in THE Letter. I tried in one page to sum up who my son is and who he is with PANDAS and what PANDAS is. I told them they may not see symptoms for months at a time but wanted them to know what it might look like. I got a call this evening that all of his teachers saw a different kid today- this one's handwriting was awful, he swore in class, he yelled out a rude comment at another kid and was fidgety and physically restless. So much for remissio
  2. I searched and couldn't find an update. Is the Cunningham test being run again? I have a box but we were waiting for my son to be 6 weeks out from prednisone before actually getting draw. Tuesday will mark 6 weeks but now don't know if it is being done or how to get update paperwork since I have the old forms. Thanks for any info you can give! Becky
  3. I second the recommendation to contact Kathy Alverez. She has been wonderful in my dealings with her. I requested a kit thinking I better get my request in since it might take a while. We had it in 3 days! So now it is just sitting waiting for our 6wks post prednisone period to end. Each time I email Kathy I have an email the next day or if it is during business hours I typically have a response in a half hour! She has been amazing and seems to be the key to getting kits/answers. Good luck!
  4. My son just went to his follow up with Dr. B. He is about 75% better but tics still not responding to prednisone or abx. He also had one reactive band in all the lyme testing he had. He recommended Igenex testing. I had seen here something about it cost $200 when I was trying to prepare myself for this expense.(we are also doing Cunningham) Well in looking at the chart the three tests he has ordered will cost $860! Yikes! not quite what I thought. I was hoping someone could tell me if they have had any luck getting insurance to cover it and how do I go about it. My son has Blue Cross B
  5. Dr. B. ordered a bunch of new lab work on ds and I got some back today from hospital. I wondered if anyone could help me know what they mean. I'm used to the standard titers but not some of the others. Thanks for any help you can offer. I'm only listing those that were not in the normal range. Lyme Disease 41 kD IgM Reactive (the other 2 in this group were non reactive- does this mean he is negative?) Creatinine .46 Ref. range .64-1.27 Alkaline Phosphate 245 (r.range 48-224) All others were normal or not back yet. Also ds' mycoplasma IgG was 1.38 (ref.r
  6. As to how the strep was diagnosed - this is the part that makes me nervous ---- by sight. He stated that he could tell there was a strep infection in the nasal cavity by the way the sinus membrane looked. Now whether he was 100% sure or he has seen so much that he was sure, don't know. I didn't roll into CT and get to sleep until 1:30 that morning so can't say I was at my sharpest. My son had no symptoms of strep. In fact, he has rarely been sick at all in the last several years. Probably supports the theory that in at least some of these kids the immune system is hyper active if no
  7. We saw Dr. B. on Monday. Prior to seeing him ds had been in flare up on abx that weren't helping. I put him on motrin after several days of being lethargic, pale and increase in tics. On Monday we stopped motrin and added the following: Cefdinir 300mg (Omnicef) Nasonex Prednisone 15 day taper, currently at 30mg Intuniv 2mg (he has been on this for about 5 months) Mucinex (blue box) Saline nasal spray Again he is lethargic, falling asleep during the day, pale, had a slight fever on Thursday, tics have returned and just really mush. Would his meds do this? I've heard prednis
  8. Kara, It was nice to meet you too! He isn't treating Myco because he doesn't get it. Just says same exposure to things as Matt so of course elevated! Frustrating! As far as Dr. B well that was my fail. When it comes to Matt I get all of my own copies directly from lab of all bloodwork done. With Alex after I saw negative ASO at peds. I didn't pursue other labs figuring if anything else materialized ped. would tell me. So I didn't know about Myco results until today! Yeah, I feel studpid. As far as myco level- Matt, PANDAS ds, his level has never been that high when he tested positive b
  9. We went to see Dr. B. yesterday then my sons happened to have ped. appts. today. My oldest is diagnosed PANDAS, youngest was questioned about a month ago(behavior changes in cycles, emotional lability, handwriting changes BUT NO tics or ocd)ped. diagnosed depression. We've been treating with St. John's wort at peds. recommendation. Dr. B. says could be beginning PANDAS. Had titers done a month ago. ASO screen positive but titer only 124 (ref. range <150) Myco IgG 3.87 (ref. range <.90), IgM 193 (ref. range <770) Not getting Anti DNAse B results until tomorrow but ped. said it was
  10. I had it on my list to ask but he brought it up first. (and now to find the money for it...
  11. So went to Dr. B. today... was very glad that he ordered both strep and myco p. titer testing for our family. I've wanted this and so it is a no brainer BUT I forgot to ask what happens next. What happens if any of us test positive? Is it a course of abx? For my younger ds, myself and my ex we will do whatever but the problem lies in that my son goes to my brother's house 3x per week after school. He has 3 teenage girls. My ds is VERY close to his cousins and loves being there BUT the problem lies with my 18year old neice who had her first bout of pnuem. at 6wks old and has never been h
  12. So we had our first Dr.B. appointment today and it was very interesting to see a very different approach than what we have been dealing with. I have always counted ourselves to be lucky to have dr. close by who was knowledgeable about PANDAS, had a long history with it and didn't debate it's exisence. Now since she is retiring we had to seek out a new specialist. I chose Dr. B. due to recommendations on here and again we are lucky that he is only 2 hours away. Little did I know that seeing him would be a complete paradigm shift in how we deal with PANDAS. If all recommendations and treatme
  13. Kara we will be there at 11:00 tomorrow. I'm interested to hear what happens in regards to your son. I plan on asking him if as a family we should be tested. His father has frequent strep infections and his brother has psoriasis which can be caused by strep. I'm glad also to hear about your IVIG experience but am sorry for you and your dd that things have worsened. I hope he can find a solution for her. I am hesitant about IVIG but am glad to be going to someone who does look at different options for treating PANDAS. Our present dr. is great (she is retiring so that is why I'm finding
  14. I'd happily order magnets but also possibly mugs or tshirts too. Magnets I'd buy 12 and have friends and family donate too so as to spread more awareness.
  15. My son has an appt. with Dr. B. tomorrow. DS's PANDAS is mild compared to others I've seen on here. He has tics, anxiety, ADHD, confusion and irritable during a flare up. I'm just wondering if all patients get the recommendation of IVIG with Dr. B. If ds is mild and I have reservations about IVIG if it is not absolutely necessary I just want to know what I'm facing so I have a response ready.
  16. So ASO titer was negative, MycoP and AntiDnaseB not back yet. Dr. did not feel it is PANDAS and instead said depression. Family history on both sides. He is recommending CBT (tried already, therapist stunk) and St. John's wort and Bee Balm. Sent me to local herbal shop for recommendation on what to take. She recommended a tea that has both. Says drink 4x per day. I figured I'd do 3 for 8 year old. He hates it so don't think this is going to be a good match. Anybody's kids take St. John's Wort? How do they take it and how much do they take?
  17. DS had been through lots of trouble in class, got his diagnosis, explained to his teachers, explained to his classmates but his tic- tapping his feet in a rhythmic pattern was disruptive. We had put a rug down, to dampen sound, and other things. His teacher sent him out of class to sit in other teacher's classroom so he wouldn't disturb anyone. (way to make him feel good about himself) Tapping feet resumed, other teacher told him to stop, he explained it was a tic and he couldn't stop. She told him "you are just doing it for attention, you could stop if you really tried." He came so upset t
  18. I'm tying to type a list of what I see with my youngest ds for dr appt. tomorrow. He is so different from my oldest that I'm trying to piece through what is or isn't PANDAS. With my oldest others could see things- tics, obsessive thoughts that I couldn't see because to me they were just him. So would you view these as possible trouble spots or just normal average kid... * frequent crying (he is 9), tried therapy, tried ignoring- not feeding into it. Nothing has helped, but comes and goes. * feels that others don't like him yet I've seen others gather around him at school events. *
  19. Thanks for the responses. This is the article Strep & Psoriasis Connection that I read and that links the two.
  20. Last year I read an article about how psoriasis can be triggered by strep. I'm just curious of parents are seeing a correlation with their kids with PANDAS. Do you have a child with psoriasis and PANDAS? Do flares in psoriasis seem to coincide with exacerbations in PANDAS?
  21. My 10yr old son was Dx last year with PANDAS. We have fallen into a sort of rhythm with it. We have school sort of kind of on board, the doctor orders blood work whenever I ask and I can usually see a flare at fifty paces and each time I've asked for bloodwork it has always proven to be an exacerbation. He never has symptoms for strep, never has a fever but always has positive ASO and Anti Dnase B and occasionally MycoP. Now his 8yr old brother has had ups and downs all year. His teacher loves him so it isn't a personality issue but he will go from working very hard and giving his best t
  22. I went to Dr. Cunningham's site on OU site and only contact info was her email. I did email but know she is busy and have seen people mention on here that you need to contact Kathy Alvarez. But how do I do that? I couldn't find any info for that. Can someone please help steer me in the right direction? I don't really get why it is so hard to find how to do this or am I way off in where I'm looking for the info. Thanks!
  23. My son is currently taking 250mg 2x per day of Penn VK prophylacticly. A student in his class had strep in her family and then she went home with a very high fever yesterday. I have told him to double his dose- 500 in a.m and p.m. Would would you do? How do you typically address the strep exposure issue? He has no symptoms of strep or of an exacerbation. I honestly don't feel like he would have an elevated titer which he has shown in the past after showing symptoms. The doctors would really not do anything without a positive culture or titer and since my son has really done well so far
  24. He was on no antibiotics prior to this, not since March. He had had a possible abx allergy so no abx were given until allergy was cleared in July. I've taken him to walk in before and got them to do strep test after explaining about PANDAS. I can't get in contact w/ reg. doctor until Tuesday. I think we are going to go to walk in in the morning and if needed call reg. doc on Tuesday. I hate trying to feel my way through this all the time. I think I too need to just establish a rule for us and not put myself through the torture each time. Instead just leave it to the rule.
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