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Everything posted by Hmrz

  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.
  15. A little background ds 9. After ivig (12 weeks ago) was making great progress. Happily Returned to school after 6 months hospital homeschool. He loves it and quickly developed friends and did all his work and homework. Developed acute vasulitis and was put on long dose of prednisone. Within a week almost all pandas symptoms gone. Started saying he felt like a normal kid and he remembered what feeling happy was like. After 35 days of 10mg 2xdaily we are slowly tampering him down. He is now flaring and it gets worse everyday. We had a meeting at school and will probably have to pull him out because he is having rage at school. I fear that this is back to square one. Has anyone experienced this. Is it the ivig or the steroids? Any insight would be so greatly appreciated.
  16. My ds9 had 1st ivig 61/2 weeks ago and every setback is a heart break. I will say he is back at school after a 5 month break and is almost off all of the pysch meds we put him on before dx. I have really taken comfort in the experiences of other parents who have shared their recovery progress. It's so difficult when great days become dark in seconds. Overall I have to believe he is getting better and stronger. Califamily are you SoCal?
  17. We use a sugar free gummy and it works nicely
  18. Thank you for responding. Momwithocdson i will pm thank you. Dut ds was on augmentin for 7 months before switching to omnicef. After 7 days on omnicef the "hives" started. He is now off all antibiotics. I'm terrified about that but it seems necessary. He has been on steroids for the past 3 days and the rheumatologist decided to keep him on 20mg a day. Also he is 6 weeks post ivig. Poor kid they tried to take blood yesterday and he finally talked himself into after an hou only to have them put the needle in and get no blood. A meltdown followed and I can't imagine we will ever get him into that office or trust anyone enough to take blood again. What a mess. So happyto hear your dd recovered fairly quickly. I have read a little about serum sickness but I will dive deeper into it.
  19. Has anyone had experience with this ds9 dx with this today after 3 days of what we thought were hives.
  20. I wish I could be more help with this. My ds 9 started having increased auditory sensitivity and broke out in hives 2/3 days later. We think it could be a reaction to a new antibiotic started 7 days prior but it's sounds like you have been on a pretty steady regimen.
  21. That was my first thought as well because he had been on the omnicef for a week but after reading post here I realized it is common for reactions to happen a week or so later.
  22. I'm sorry you had to go through that. I totally understand the panic! Our doc did prescribe the omnicef at my request. Ds was diagnosed at childrens hospital Los Angeles by head neurologist but we don't really have a pandas specialist but the neurologist did order ivig which we did 51/2 weeks ago.
  23. Ds 9 developed hives today after 9 days on omnicef. We switched from augmentin after 7 1/2 months. The omnicef made a difference within days but then a mini flare with rage suddenly on the evening of day 6 and now hives. Our pediatrition (pandas friendly but not extremely knowledgable) has told me to discontinue all antibiotics. She prescribed 3 days of steroids which he started today. Has anyone dealt with this? I'm so nervous we are going to lose all the progress we have made. Thank you for sharing any information.
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