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becjonz

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  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 remission it sounds like. I can't believe the timing but I also can't picture him purposely testing the teachers either. The chances of being on the same day as the letter are bizarre though. Anyway it looks like we are heading towards a 504 which is fine with me, his previous principal would not allow us to have one. I would like to hear from others what sort of things did they include because with the transient nature of this I want to make sure the plan makes sense. Thanks for any help you can offer!
  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 Blue Shield and then he has United Health as secondary. The UH is through his father's work and is very limited compared to other UH programs from what I gather. My BCBS is usually pretty expansive however. I've just never had to seek payment myself through insurance so I don't know the right way to go about it. Thanks for any info you can offer!
  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.range <.90) younger brother is 2.42 (his AntiDNAse B was 366 (r.r.<187)) My myco p. IgG was 1.87 all of us were neg. for IgM and ASO Will youngest ds and I likely be treated even thougth IgG shows past rather than current infection?
  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 not attacking the wrong things??? bill I had this same thing on Monday with Dr. B. He told me son had an infection and could tell by looking in his nose. The next day we went to regular appt. with family dr. who was eager to hear about Dr.B's visit and he too wanted to know how he knew there was an infection. He couldn't see anything in the nose but said throat had lots of post nasal drip. It did make me think for a bit since Dr. B. barely looked at son and I know he didn't look in his mouth at all. I did like Dr. B. but guess I wan't used to no real exam of the child.
  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 prednisone can do weird things w/ PANDAS could this be due to that? I can't imagine how he is going to do at school on Monday because he is just not all there.
  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 but wasn't sure in the grand scheme if that is real high. Just when I think I get PANDAS, know how to maneuver I find I have sooooo much to learn!
  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 positive. Now he never told me about positive tests because he said since he lives with older brother, then he should have positives. (yeah, he doesn't fully get PANDAS) Ped. took in info on Dr.B's strategy with older ds and decided to conduct little test in re: to PANDAS- he wants me to start him on ibuprofen to see if we see any behavior changes/improvements. He figured it was a low risk test. Does this sound like a valid strategy and what are your thoughts on labs? Do elevated labs just indicate a need to medicate so he doesn't impact older brother or put with some behavior changes would you have more worries? Also had more titers done last night per Dr. B. I will be curious to see what the trend is with new tests.
  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 healthy since. She typically misses a third of her school year due to illness (sinus infections, bronchitis, pnuemonia, etc.) Shockingly, her parents have never taken her to an immunologist (drives me crazy) so when Dr. B asked about family with autoimmune disorders I listed her. I asked about him going there and he recommended that my 3 nieces be tested as well. I feel I need the answers as to what is next before I can ask this of them so if you know what the typical next step is please let me know. thanks! Becky
  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 treatments work out it leaves me with lots of hope for ds's future. So in the past DS was on low dose Penn VK prophylaxis. I also had to be on guard to watch for exacerbations, not always getting the cooperation from the dr.s or school that would help with that. If I noted a flare, I'd call the dr. get blood work, wait a week+ for results, then he'd go on different meds to knock infection down (hopefully). This was approx. a 2 month cycle and always in there he'd lose instruction in school, disrupt his brother's life due to issues of his own and impact his social and emotional health. So now Dr. B has proposed this crazy idea of treating DS's immune response so that we calm it down and solve the problem rather than react to symptoms so that DS won't have exacerbations! I never thought this was an option! So he is off Penn VK, off the 10 day course of Amox (he was on day 8 and infection was still active. I knew it wasn't and had treated him myself with ibuprofen- the one thing that has showed results) Instead he is on omnicef, a 15 day course of Prednisone, Nasonex, nasal saline, and mucinex. He said this should take a month to get him in good shape. He has also ordered a ton of blood work. (7 vials of blood to ds' dismay) and has also requested that we have the Cunningham test done too. He also said that issues we are seeing with younger son could be early PANDAS (some smart person on this board called that weeks ago) and that he is much more susceptible to having PANDAS due to older brother with it. I'm eager for appt. in a month to hear about blood work and future steps. Kara- it was nice to meet you today. I hope things look up for your guy soon. I'm not sure if the other person I met from Waterford, CT is on here but if so it was nice to meet you too. We live so close, nice to see others from nearby. ~Becky
  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 a new dr.) but if things got worse I'd like to know the dr. would offer more than just abx. Good luck tomorrow!
  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.
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