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Hmrz

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  1. What is your sons dose? How long after raising each dose did you see a positive change? Thanks for all the great info momwithocdson.
  2. My DS11 has been on low dose of lamictal for over a year. We are raising the dose to help give him extra support that is needed. He went from 25mg twice daily to 25mg morning and 50mg evening. After raising the dose we noticed extra impulsiveness depression anger and aggression. His docs said that was not likely a reaction to lamictal so we rode it out. He did seem to even out after around 10 days . Yesterday I raised the dose to 50mg morning and 50mg evening. About an hour/ hour and a half into his morning dose I saw a increase in intrusive thoughts and edgy behaviors.has anyone else seen this or noticed a dramatic reaction so quickly with lamictal?
  3. Thanks for the feedback. We are really hoping for great outcome. I know it's going to be hard and emotional to confront fears and anxieties. Hope we can follow through and get tools to make life a little easier for ds11.
  4. my ds11 has episodes that I have described as seizures but I'm not sure if that is what they are. Sometimes they are very silly with bad language no body control and eyes rolling back. Almost like drunken behavior. Is this anything like the strange you are experiencing?
  5. I am taking my ds11 to Rogers in Tapa on April 25. I would appreciate any advice or feedback from those of you who are familiar with the program. We are traveling from California so any info would be appreciated. Thank You
  6. After a few years of aggressive pandas treatment we have decided to try a low dose of vyvanse for ds10. (2 ivig, various abx now on biaxin, tonsil/adenoids removed, now on 50mg lamictal and vyarin) he is worlds away from his onset December 18,2012 but is struggling in school even though he desperately wants to be there. Any input would be helpful. Thank you so much for the information and support this forum has offered. I know my son's continued recovery has been achieved through information I have gathered from all of you amazing parents.
  7. Has anyone checked into this or the med nuedexta?
  8. Sorry I just posted the blood test numbers. We are two years into a pandas dx. Been on antibiotics for a year and a half. First aug/clav and the switched to zith 6 months ago. 2 ivigs last being 8 weeks ago. Thanks for taking the time.
  9. Just got back blood test from quest for Ds9. Please give any feedback on the tests that came back out of range high. Influenza A antibody serum a 1:32 h Influenza B. B 1:8h Absolute CD4+ cells. 1637h Antistreptolisin O. 251 h MycoPlasma Pnuemoniae. >5.00 h Herpesvirus 6 IgG. 1:80 h Everything else was normal or within normal range. Not sure what these mean but I know I have to be able to tell the docs what to look out for. Any suggestions?
  10. Has anyone done a steroid burst shortly after an ivig? DS9 just had second ivig one week ago. He has had successful steroid burst and taper in the past. I know behaviors are to be expected I just thought I remember posts about steroids directly after ivig that had good results and I can't seem to locate them. Thanks
  11. After our insurance refused to pay for ivig we hired a health advocate and they secured 2 treatments. We payed out of pocket for the first and they sent a check when the case was resolved. My ds is 9 but we saw very similar behaviors. We are still struggling but things have improved greatly.
  12. My ds 9 started taking vayarin 16 days ago. In one week we saw amazing results that made us think that we had really turned a corner for the better. On day 15 out of the blue we saw an episode of extreme silliness that was like he was extremely drunk, a completely vacant look on his face. The episode lasted 10 minutes and after he didn't remember it. He only describes that time as being frozen in black and white. The next day he had a rage meltdown at school that was as far as we can tell unprovoked. He only says nothing happened and he tried to stop and he couldn't. This has been a long road already and we have tried many different meds and therapies. . Ds had HD ivig 7 months ago. We saw good results and are planning another in October. He is no longer on psych meds.( we weaned those a few months back with positive results) his meds are now abx daily ( 500 Zithromax) 2vayarin capsules, probiotic. He has made amazing progress any experiences would be so appreciated. Thank you
  13. Has anyone heard of or experienced nuero-fit gym system in Los Angeles? My ds 9 just started the program and I would love to hear about others experiences.
  14. Thank you so much for the responses. I think even though the diagnosis was vasculitis it was actually serum sickness. He had switched from augmentin too omnicef 8 days before the hives. Ds refused to do bloodwork the day he was diagnosed shoe had been on steroids for quite a while before his blood test were done. I am still trying to get the results of the bloodwork although the rhuemotologist did tell me the ANA was high. Of course he said that didn't mean anything. Days 10-35 on steroids were amazing. A few bumps but nothing that couldn't be the action of a normal 9 year old. Then a week of of unpredictable outburst and uncontrollable impulses. Even at his most ill sleeping through the night was never an issue but this past week he has been waking at 2 and 3 in the morning and not going back to sleep. Leading to this weekend with some behaviors that we haven't seen in quite some time. Including wanting to die and intense computer game obsession.
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