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Everything posted by socalmom

  1. Hang in there. This forum seems to be a good place to be.

    I am new to all this and I too feel lonely and overwhelmed times.

  2. My son WAS ahead in school, even though he's so young and does speak 2 languages and was on a 3 rd when all this happened. I now fear he'll fall behind. I worry i am not savvy enough or smart enough and I wonder if i missed the " window" for total 100% recovery.
  3. Hi colleendonny, my son has this too as well as a biting things at times. It comes and goes, not sure what it is. But as I have said on many other postings, I am brand new to all this and in the middle of something I am trying to understand.
  4. Not to hijack the thread but you gave me info I REALLY need, my son's school is refusing to help me in ANY way. Thanks LLM! I hope your daughter feels better soon, epstein barr sounds awful from what i've read. P.S. does this law apply to private schools as well?
  5. THEY ARE 15 mg. pills and i am told to give him 1 and a half pills for 5 days. I just feel so freaked out about this, as i don't understand what it's for? inflammation? suppress immune system? I believe this is the current train of thought for steroids so far as I know: Link "STEROIDS Doctors have found that a 5 day course of prednisone will make PANDAS symptoms stop altogether. It is a temporary fix. But it proves that an inflammatory reaction in the child is occurring. It may make doctors more inclined to continue with antibiotics until they get more information from our network of doctors on the nature of PANDAS. Some very extreme and rare cases of PANDAS, where there is clearly encephalitic catatonia, disorientation, hallucinations, beyond the typical PANDAS OCD, Tics, Anxiety issues – have benefitted from one or two months of steroids when administered by a professional Pediatric Neurologist. In our group of 70 children only approx. 5 children have been in this category. No doses will be given here for the steroids as it is well understood by medical professionals what is the acceptable limit and steroids must be used with caution. The use of steroids is well understood in the medical community for encephalitic matters." Thank you , I guess my Ped is looking to see how he responds to these steroids then. I am sad cause if it works it's temporary, and i don't know where that leads me?
  6. THEY ARE 15 mg. pills and i am told to give him 1 and a half pills for 5 days. I just feel so freaked out about this, as i don't understand what it's for? inflammation? suppress immune system?
  7. Thanks LLM, I think OCD would be harder to deal with than the tics for sure, but for now ticcing is my problem. He's super hyper, does this mean he doesn't have PANDAS? i mean in respect to the reaction to steroids? He tells me his body is hot and cold and that he can't stay still. He is jumping off the furniture and tried to put his head in the bathroom sink " to cool off" he said.
  8. My son fidgeted constantly before we got to this point of being told about PANDAS. Also- LLM, what's a 504?
  9. Orpred is an oral steroid, and he is on a 5 day " burst" and our pediatrician prescribed Augmentin and Orapred cause Dr. T doesn't return our calls and emails. Dr. T gave me 10 days of antibiotics(Azith) and I saw a slow reduction in the movements but VERY slow to go away. Not completely gone. So that's why I agreed to do Augmentin. Should i have continued on Azith? did I not give it enough time???? I was told Azith is still in your body for a couple day after you stop so he shouldn't have changed so much so fast?? Also, now that you tell me steroids makes for nasty behavior i am worried as this is already a problem! Pediatrician said he will give me Azith if I feel Augmentin isn't working.
  10. Hi, Hope to get feedback as my son isn't doing well. Dr. T put him on Azith on Dec 30 for 10 days and ordered blood work(which isn't back yet today is day 3 off of Azith and he's backsliding. memory issues, anger, hitting and for the first time since this all started on Dec 14 he says he "can't understand" sometimes.?! our pediatrician ordered Orapred and Augmentin. He's been ticcing since DEC 14! Will Orapred stop this???? and how soon? I have never seen anything like this!
  11. Look at figure 3b on page 3 http://pandasnetwork.org/CunninghamJNICaMKinase.pdf The PANDAS range (litle blue squares) is 100-200. The non-pandas tics range (upside down green triangles) is 50-110 (although who's to say for sure that the non-pandas tics kid with the 110 value wasn't really undiagnosed PANDAS?). Anyway, there is a grey zone (100-110), but it seems like many of the kids that were tested on this forum are well above that (150 plus). The values on the chart were taken from kids in Swedo's orginal IVIG/PEX study. I am proud to say that my dd's claim to fame was that her CaM kinase 11 was the highest Dr. Cunningham had ever seen, at least at the time (this was after an exacerbation b/c of H1N1, after she had been on full-strength antibiotics for 1.5 years). She was in the high SC range (250 something--see the red squares on fig. 3a). It went down after pred/ IVIG. It's best to test when your child is in an exacerbation (although the first time we tested dd she wasn't, and she was still in the high PANDAS range). Also, pred/steroids will lower CaM kinase ll levels. Cunningham's test isn't available right now, but hopefuly will eventually be available commercially. Lots of the PANDAS kids on this forum were tested in the past couple of years b/c she was collecting data for a study. So I can ask my Dr. for this test? My head is spinning I haven't slept in days so I am sorry if i seem daft.
  12. Thanks JAG10, it's been far from easy or cheap. I couldn't do it with out this board right now, by some miracle i found it and you people are such a huge source of info and support!
  13. You guys rock! Seriously, all that I am dealing with right now is so overwhelming yet you people here are so reassuring and so helpful. THANK YOU. My mom " sense" tells me I am on the right path, so to be sure after Dr. T diagnosed him with PANDAS, I went to Dr. Sears in person to have someone who is a believer see my son in person, he too didn't doubt me. EAMom, I really think it does muddy the waters. I am not informed on what this CaM kinase ll levels are though. I'm still quite ignorant on this subject matter. Where would I find a chart for levels/numbers of CaM kinase ll of TS vs. PANDAS? MomWithOCDson Yeah, you seem to be able to put into words really well what I suspect. My son is off abx and seems " wild" now. I don't want to lose valuable time giving psyche meds to a kid who needs a different type of help.
  14. ok so I am constantly being told by my original pediatrician that TS is also seen with Strep throat and children can have personality changes?!! I am trying to understand if this is true, how do I go about distinguishing them apart? only Dr. T and the pediatrician Dr. Sears seem to think it's PANDAS in my son not tourettes. But, my old Pediatrcian and his partner in practice simply think he has T.S.! It's as if they want to treat the symptoms with drugs and not look further into it. Please help, I have a kid who has lost his original personality and even tempered nature and is now defiant, cries alot and seems to have issues with short term memory, to name a few.
  15. I am VERY interested in this thread and what you guys have to say, as my son was positive for strep via rapid test and titers were " normal" as the neurologist and our pediatrician said. Only reason I tested my son for strep is because I found these board when I was frantically searching for a reason my son was ticcing and acting strange suddenly!
  16. For what it's worth, I am new to this diagnosis and my son hasn't had 1 vaccine, so don't beat yourself up about it. I spend all night and day wondering what I did wrong, if I had vaccinated my son, that would have been one more thing I could of thought of as being the catalyst......
  17. madbay, I think you said the magic phrase," set up a phone consult and pay" I am sure just like any new illness or episode, you would pay to see a doc. He expects no less I'm sure. Great minds tend to be eccentric and quirky, hence the no call waiting.
  18. Thank you, my son finished abx yesterday so he can do blood work and today has been truly awful with him crying for little reason and raging...... peglem, thank you. I am so new to all this I feel like you guys are a reliable safe place to ask questions. Thanks meckert, I hope your son is doing better.
  19. okay, so I'll assume they need to steer clear of each other...... just not sure how long as no one seems to want to answer or knows.
  20. reverse zoonosis is where humans give it to dogs - right? That is what DR T. told me as well..........
  21. I am a NEW patient as of Dec 30 2011. I have difficulty getting him on the phone and I haven't even completed the blood work he ordered. (we just finished abx he ordered) I'm gonna go through with lab work because I think his knowledge is valuable, and his opinion right now is important to me and can be passed on to my local Dr. who I can work more closely with. Just one mention of his name to the Neurologist at CHLA had her (hand)writing me a letter asking to know him and more of what he does, and this is a Dr who couldn't seem to decide if she believed in PANDAS or not!
  22. Hi, I am trying to understand how this works. I have a mother of a child my son is very good friends with who was also strep positive without symptoms like my son. He is now on day 3 of antibiotics and she keeps asking for a playdate. Since my son is only recently thought to have PANDAS and I don't have lab work results yet how does one handle this? My son is finished as of today with his 250MG of Azith and I am scared to expose him even though the mother insists her son isn't contagious and is currently on abx. Thank you in advance for any insight into this matter.
  23. Wow, I didn't know about this law! I am worried now as Pedi said my son should never have vaccines now that he shows Neurological issues. I live in So Cal, where you can claim philosophical but I think it's hard to claim once you have given your child a vaccine. I suggest a new Pedi who would write a letter and http://www.cdph.ca.gov/programs/immunize/Documents/imm488e.pdf http://www.nvic.org/Vaccine-Laws/state-vaccine-requirements/california.aspx
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