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Everything posted by danddd

  1. Take lots of notes, it goes by so fast, and there is so much information to remember. also, have your questions in front of you so you remember them. hope it goes well
  2. Buster thanks for that info. She used to take the augmentin in the morning, but med refusal was such a huge problem (sometimes would take a couple hours for her to take it) so she was always really late for school. So, doc said ok to giving it to her after school. It made life much easier as far as her taking the augmentin way faster, but I guess she is most suseptible now at the worst time and place- school!
  3. It seems so many docs we have seen, specialists ect. say that low dose pen. and amox. are good enough for preventing strep. We have not seen an infectious disease doc, and i am wondering what one would say about this. If this were the case, wouldnt all our kids stick with those abx, and not the heavier augmentin (dd is on) or zith? I personally dont want to risk changing, but just curious if anyone has some facts on this. thanks
  4. I am soo sorry for your situation. It is very difficult. My dd is younger,9, and would ask me to kill her. When I said no, and tried to talk her through it , she would then say that she would kill herself. She was having bad thoughts and hallucinating, and it was at times too much for her, I think . This was at her worst and thank goodness only happened a couple times. One time she tried to grab a knife. I dont know if she would know what to do with it, but it was too scary, so we literally hid all of the knives. For over 6 months we had 1 knife to cook with, and hid it each time we were done.
  5. there is so much to think about, each kid really has a different path of recovery, with one or multiple causes and treatments. one thing i always think about is what my expectations are of the docs we see, and my expectations for each treatment. in my daughters case, after a year and a half of suffering and failure of psych meds and short term abx., i was not looking for a "cure", but just a bit of relief for her. we saw dr.k because we could not find any one local to help. so, my expectation was to hopefully get ivig, and some relief. i got it, and am so grateful. she is not 100%, or even 80%
  6. the first 2 months after ivig were great, lots of improvements. then she went downhill a bit with exposure in school. she was taking 400mg of augmentin once a day. i feel terrible, i first thought her complaints were anxiety based because the augmentin would cover her, i should have brought her in right away. so far she is still functioning, but ocd is worse and some other stuff. really though it is not too bad so far. except for taking meds, she is really scared to take them like before. i am wondering why her reaction to strep this time is so mild compared to the others that were debilitatin
  7. Well, I thought dd9 was all set when strep went around the class back in october, and she didnt get it, but no. She's been on low dose augmentin since ivig in aug. tested positive today. I saw an increase in symptoms the past few days, but was still shocked with the positive culture. so now we have azith for 5 days, and waiting to hear from our out of state doc's advice. oh i just hope it works fast........ on a happier note, i think little sis is in the clear for pandas. she tested neg for strep. last week, but throat looked real bad, white spots, and even bled with the throat culture.
  8. EAMom, glad to hear you had so much success with just the 2 ivig's. my dd had her first ivig in aug., before starting 4th grade too. she is not on full strength abx, only prophyl. augmentin. full augmentin destroyed her stomach last year, even with lots of probiotics. maybe a switch of abx. could help? what abx is your dd on, and how much for how long? thanks
  9. so, dd9 has only had one ivig, which helped a lot.....for a couple months. unfortunately, at 9 weeks, her fear of halloween exploded, and at the same time lots of strep in her class. since then she has been slowly going downhill again. she is still better than before, but the bad stuff is seeping back in. her fears are bad, she is paranoid sometimes, getting meaner, bit violent. anyone else see the positive effects of an ivig dissapear? some docs are doing multiple high dose right? maybe one high dose just isnt enough for her? thanks dan
  10. dd9 switched from the liquid to the chewables, at my request, I was fed up with liquid. She HATES them, so I grind them and mix it with a tiny bit of milk. At first I thought I should just go back to liquid, but I realized that it is much easier to take the chewables and a grinder with you when you need to. You dont have to worry about refrigeration or spilling.
  11. Topaz, hang in there. My dd9 got worse with steroids before a very brief improvement. It all does get so complicated. I took my daughter off psych meds asap after ivig. I wanted to know what was helping/hurting too. Remember that we all support you! I have made most of dd's medical decisions myself, it is hard, and often frustrating, but we get through.
  12. I have chronic lyme, and my oldest daughter has pandas. It IS very hard. I can only keep up for so long before I fall apart. I have neglected myself for the past year or so, and it is showing! Actually, this year is going well for my daughter in school (miracle), and my other is in pre-school, so I should be happy to have some time to myself, but I am not. They are my distraction from my own problems, and now I have to face those problems. I feel crazy, me being sick, one daughter sick, the house in shambles, and a healthy daughter I want to shield from all of it. Keep seeing the doctors you n
  13. i know how you feel, it is so hard to just wait, and watch. my dd9 is 5 weeks post ivig. her rages are gone, some anxiety too. the rages went away instantly, but the anxiety has been sloooow. her fears are still very bad (has to be with someone at all times too), and she has no focus. a recent fever turned her into a hurricane! but it has only been 5 weeks. i really think we have to keep remembering to give it time. I get very down too and say to myself that it is not going to work anymore, this is it. But we have to keep an open mind, and wait and see. next week could be great, you never know
  14. maybe I should see if I she can go up to full strength on the augmentin if she doesnt get better soon. ocd really does get in the way of taking meds. actually today, i did not nag her as much, and she took them much quicker. maybe ignoring her a bit is the key! thanks guys
  15. Hi, this is my first post in the lyme topic, my daughter has pandas, and has tested negative a few times for lyme (elisa-i know not reliable). she had ivig, and i am going to see how that works for her, but then i think she should see an llmd if she does not improve. Does anyone know of a pediatric lyme doc in massachusetts? i am going to ask my lyme doc (i have chronic lyme) who he sends kids to also, but it is nice to get a recommendation from a parents perspective. thanks for any info
  16. eamom- your dd had 2 ivigs, how far apart were they? and how much improvement did you get from the first? my dd9 had one ivig, and i am wondering how to know if another would help. also, how long did she "turn back the pages" with the first? when i did the math to figure out the dosage she had (with dr.k), it was about 1.8.
  17. hi everyone, dd9 had ivig @ 4 1/2 weeks ago. of course she had to catch a cold/fever last week, and things went real bad. i have just realized that since the ivig (maybe before too) she has had adhd type trouble. since getting sick, it is horrible. it now takes her hours to get ready for school. she cant focus enough to eat, get dressed or anything without someone constantly helping her, and reminding her. She also is starting to refuse to take her augmentin!!!! it takes a few hours to get it in her. adhd is pretty new for us, and i dont know how to deal with it. i cant force her to do an
  18. thanks so much for sharing, it is great news. dd9 is 4 weeks post ivig and i am getting anxiety with the waiting. her rages are gone, but still has lots of other stuff. you gave me hope again, it is still possible will see more improvement too! thank you and good luck
  19. sorry i cant help, i am about to start an appeal (denied because of out of network), and hopefully be re-imbursed something. i wish i knew of some ideas too.
  20. Hi everyone, I know many of you are not going to get the flu shots this year. dd9 is 3 weeks post ivig so she wont be getting one, but i am wondering what to do about the rest of us? especially her 4 yr old sister. the mist can "shed" and affect pandas kids right? what about the shot? if her sister got one, could it cause a reaction to dd? what are you all doing about the rest of your family? thanks, dan
  21. ok so we saw dr.k last week for ivig. as far as the second ivig being possibly harmful, i dont know, we did not talk about a second one. he did say that if pandas goes untreated, that the symptoms will still wax and wane; but the better moments slowly become more and more abnormal, and the kid more dysfunctional. he also said something like (i hope i am remembering correct) 78% of kids (in his experience) only need 1 ivig, and the rest need a second. (he has treated over 200 kids i think) when i asked his thoughts on why ivig works, he said (not quoting him, just from my bad memory!)that
  22. ok thanks, i have slacked off with the liquids, so i will make sure she drinks a lot again. thank you thank you
  23. hi everyone, we are 1 week post ivig, and dd9 woke up with a sore on the corner of her lip/mouth. she has never had anything like it before, not even a fever blister. she is currently on augmentin, and supplements recommended (folic acid, ester c, vitamin e, fish oil) has anyone ever experienced this? could it be a virus from the ivig? (herpes?) whenever things are starting get good........ thanks danddd
  24. not sure, i also emailed him and got a short reply, but he did answer some of my questions.(i was just asking about abx dosage and stomach upset- we are 1 week post ivig) i dont know when he will be back, maybe someone in the office would know? hope things get better!
  25. i think he really can read pandas children well. my daughter was uncomfortable, but she did ok. he makes it work, for the kids and parents. dont be afraid. at the surgical center they are all so nice. my dd9 refused to give them her arm for an hour, they were so kind and patient, and in the end, she did great.
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