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Everything posted by Priscilla

  1. Thanks for all the info. I personally am all for trying to find a natural anti- inflammatory as I believe it is more inflammation causing this than an active infection. I cringe at thinking about leaving my dd on abx indefinitely. I am a RN and understand how bad this is for her body and our community. I am using a norwegian fish oil now, but will look into Omapure. Thank you again.
  2. did you do low or high dose? It may be worth trying the higher dose. My dr odered 4 treatments because he said it usually took at least 3 to get the best results
  3. That surely seems to be the case. I have read (maybe here) that it is believed that lower doses can actually cause an inflammatory response. We are doing the highest dose I have seen (2G/kg x 4 total treatments) with Dr L. We have completed the 1st dose. Didn't do 2 days in a row. Just 1 infusion over 8 hours for the first dose. My dd handled it pretty well. Did have headache and vomit x 2 about 12 hours post infusion. Then headache controlled with motrin next 2 days. I hydrated her very well before and after treatment.
  4. We started on Omnicef in April (250-300mg?) great results at first, tried to wean twice, symptoms would return. This was her pediatrician, he was not open to IVIG. She started to become resistant to Omnicef. We consulted w/ dr that has treated several cases and did RX IVIG. He started her on 500mg azith daily. Progressively worse over almost 3 wks of it. She has not responed well to azith in the past. So we stopped just before IVIG, symptoms were strong and worse than previous month but not as bad as April. No motor tics have returned since about 1st 6 weeks of tx (yeah) vocal tics still on an
  5. we are giving 2gm/kg every 30 days, 4 total doses. Had 1st dose July 31. Next due Aug 29.
  6. I see your point, we were on zith that I didn't feel was working b/c she was getting progressively worse even before the IVIG. We are trying Augmentin now. She has improved since Sunday, still melting down, but only 1-3 times a day instead of every 10 min. Seems much happier in between as well. And as I said, some behaviors have disappeared. I have to credit that to the IVIG (and lots of prayer) b/c we just started abx on Monday. We still have 3 more IVIG treatments too. Then we will see about a possible VERY SLOW wean from abx several months from then. Its all experimental for all of us. I wi
  7. you are all so wonderful, thank you for the replies, it is good to share a lighter side. I was afraid of offending anyone with humor, but I think it is necessary. Oh, and I will surely be on that cruise, margarita in hand
  8. My daughter's OCD has given me OCD about PANDAS I have "meltdowns" anticipating a "meltdown" My "natural foods" kitchen contains a pharmacy In trying to get her back to "normal", I have become "abnormal" I call the "doctor" to tell them what treatment "I" want to try next This is a nasty bugger of an illness, that will drag us all down. I am just focusing on the day when I can laugh about how scared I was to yawn! (One of my daughters triggers...) At least we are in this together, take a deep breath, and try to see the sliver of humor, just might help us keep our sanity for our childre
  9. that made me smile:) I feel like bit of a abx junkie myself- starting our 3 abx since april, I feel wierd every time I go back, like they must be thinking, what the heck is wrong with kid
  10. I am in southern california, I am begining to think I should have my PANDAS daughter checked for Lyme/ Mycoplasma. Does anyone know a resource where I can look to find the appropriate dr???
  11. we wanted to see what IVIG would do w/o abx, It would be hard to tell which was working. We did start her back on abx yesterday though to get her through all of her IVIG treatments. Sunday was as bad as it can get, couldn't go 10 min all day w/o a meltdown, anxiety, rage. My husband and I are both covered in scratches a bruises. Even went to ER to get anti- anxiety med. Yesterday was much better, only 2-3 meltdowns, less rage. She was even kind of manic happy at times. This morning the dog yawning set her off (yawning and anything touching her mouth or chin is her trigger now, can't even say "
  12. My dd 8 had 1st IVIG 1 week ago last night. We stopped antibiotics 3 days prior. I have noticed 1-2 OCD behaviors disappear, but one of them has gotten more severe. She has been so tormented that we ended up in ER today to get an anti-anxiety med until being able to see Dr tomorrow. She is crying ALL day (every 10-30 minutes she has a breakdown) since yesterday. It just comes out of nowhere, then passes, keeps saying she wants to die, even threatens to jump out of the car. I can't stand it. Has anyone had a severe increase after IVIG, then got better. I just need some hope.
  13. Interesting, My 8 yr dd has been under dental care since she broke 2 front teeth out at 2yr. Never had cavity, then 1 visit (about 5-6y) we went back and she had 5 CAVITIES!!!! clear check up 6 mos prior. I couldn't believe it, had to have 2 pulpotomies too! I went to 3 different dentists because I couldn't believe it. Nothing in diet had changed, and she only drinks water!
  14. be careful with getting to hooked on ibuprofen, long term can cause liver damage. I hope you get help soon. I have been journaling all behaviors, visits treatments... It may help your case if you need to see a new Dr.
  15. Dr Lin (Irvine, Ca) will do IVIG if your case/labs are strong enough. They referred me to a infusion company that would not accept my insurance intially, then, that company referred me to one that would. We had our 1st treatment this past saturday. Some behaviors have improved, others may be a little more exacerbated, waiting to see what the future holds, we have 3 more treatments scheduled.
  16. So my 8 yr old is being treated for PANDAS. She did have elevated strep ABO and almost textbook PANDAS symptoms. We just had 1st dose of IVIG this past Sat. I see improvement in some areas, not so much in others. I am going to give IVIG a little more time, but if I want to start testing for LYME's to rule that out, where can I get the Igenex western blot test? Does this have to be done at DR. I am in CA, anyone know of help here?
  17. Well Hayden was doing really well until 2 pm yesterday, then she got the headache, with some nausea (vomited x 2) Massaging her head where it hurt REALLY helped and she fell asleep until this morning. Woke up, feeling good so far and seems to be VERY HAPPY, mornings are usually really hard on her. I am cautiously optimistic can't wait to see what the rest of the day brings.
  18. I assume you mean 2grams/kg rather than mg, right? (made that same mistake once myself) And what do you mean by every 30 days times 3? (3 days in a row?) Angela oops, you're right, I meant 2G/kg. We are giving it every 30 days (once a month) for 3 months. 2 treatments left.
  19. Thank you all so much for your input. Infusion went well last night, so far feeling good this am. Just a waiting game to see what happens with behaviors. I had a thought this morning, that she has now created habits with these behaviors that may take time to disappear even if they no longer are actual "triggers". I am hopeful. Dr Lin (Irvine Ca) ordered a high dose of 2mg/ kg. It is to be done every 30 days x 3. We didn't do a double dose for the 1st infusion like alot of other Dr's. I am a Critical Care RN and have given IVIG to several patients- just different when its your baby :)I am comfo
  20. My 8 year old daughter is scheduled for IVIG tomorrow, I am a little nervous. She has 3 doses ordered, each 1 month apart. I would like to know how others have responded to the IVIG. How long have improvements lasted. how did treatment go, how were side effects, how soon you saw results?? any info appreciated
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