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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 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.
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