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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 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.
  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 that day because he finally had felt he could make sense of things by having diagnosis and then to have an adult tell him that.
  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. * feels like others are being unkind- I'll hear his brother ask an innocent question without attitude or rude tone and he is in tears insisting his brother is being mean.Very irrational response can't hear me tell him that his brother asked a simple question. Similar things have happened at school such as pushing down his closest friend because he insists he heard him say something and friend said he didn't say anything, Alex kept asking, friend said I didn't say anything, finally so upset he pushed him to the ground. Not a typical behavior for him. Would you call these possible signs? Am I looking too hard or have I not looked hard enough these past several months?
  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 to barely working, tons of referrals to the principal for effort and homework issues. He has always been a quirky kid, my sick one until things changed for my oldest a year ago. He used to have sensory issues about touching certain things, would only wear pants with elastic waists but this has not been a issue of late. He shows no evidence of tics or OCD like behavior that I've noted. This is what has caused me to hesitate to look into PANDAS. I didn't want to be the mom that sees PANDAS everywhere. But the increased issues in class, many behavior consequences that seem to bother him but don't stop him from getting into the same trouble, issues with sleep, frequent crying jags over nothing and irritability in an otherwise kind kid forced me to ask dr. to do titers on him. I took him to therapy for dealing with crying earlier in the school year but saw no improvement. So I didn't sleep last night so on my break today I ran to the hospital to get preliminary test result. (I'm a fanatic about getting my own copies and checking results often before I hear them from the dr.) The only thing back is the ASO screen. It was positive so then it was sent out for the titer. So with screen being positive would you say he has it? Positive ASO for my other son means treatment but he has tics and maybe more classic PANDAS symptoms. I'm still on the fence about my youngest. Would you consider him as a PANDAS kid?
  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 this school year I don't want to take the chance of an exacerbation. So a really long way to ask what you usually do. How do you handle exposure but not an actual flare.
  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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