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Everything posted by 7upMom

  1. Your local friend from down the road chiming in here! Have you thought of getting a script through your local doc/nurse prac who has been sympathetic to your needs?? Keep your script for the 875. Sit down with her and state your case for giving XR a whirl. We have had to do this with Evan-right now he is on Biaxin after we stated the case for a change (a mp suspicion) back at the end of May. He is still on this. This helped halt a spiral we were headed into after our second IVIG in Apr. Dr. K has never recommended switching him back now. We asked to switch various times and he wouldn't bud
  2. Srry, don't mean to sound like a doorknob if its already been posted , but why is this??
  3. UV lightholder: It is in the toothbrush aisle at WalMart- it is a toothbrush holder- they come for singles but is more reasonably priced to buy the 4 toothbrush sanitizer/holder. Keeps the toothbrushes separate, head-down and then turn the uv light on, says it kills strep on the brushes (: We have all the brushes labeled, the holder spot labeled for each person , and a separate tube of toothpaste labeled for each person. Sounds a little too organized, but with having a big family it was such chaos with toothbrushes/paste. This seems to work very well so far!
  4. 13! And I was feeling sorry for myself here trying to deal with 10 people and a dog! Good luck with the steroid burst, it worked great for ds the first time. Well, we don't have 13 in our home, we have 9 and a dog also lol, but we tested 13 because that included his dad's household ( we are divorced) So you have 10? in your house? wow- your hands are really full, just one more and I might break down and cry lol. My husband is a 100% disabled vet from Iraq so between VA appts and PANDAS I can't believe I am still standing at times. Lots of hugs to you though for keeping it all to
  5. Due to my son backsliding, we got our families titers done also. We did our home and then his fathers household also. For a total of 13 people who did blood-draws. We just got our results back last week and out of the 13 people tested 9 ( all four of the adults and 5 children) are positive for strep with high titers and not a one of us are sick. Both households including stepsiblings that are not even bloodrelated. So the doc here contacted Dr K who says 2 weeks antibiotic and then retest blood and throat swabs again. Ugh no wonder he was not getting better ): but now maybe the steroid
  6. Why do you not care for the tenex or clonidine? I am absolutely ashamed to admit it but the clonidine we like because it makes him fall asleep within the hour of taking it, and we NEED that. The vocal tics can drive us mad sometimes. Doyou think your son tics from PANDAS or has tourettes also?? Just curious also how many other people are struggling with trying to figure that out? Did steroid burst help your son with tics at all? You must be getting the same result with ivig for tics we got- ppphhhllltttthhhhh but helped with the rages (: and functioning
  7. My 9 y/o takes clonidine at night, he still has a lot of tics, but they are much worse when he is off of it ( plus it also helps him fall asleep at night). IVIG did not touch his tics yet, we are 90 days post. They have discussed tenex for am but we are just not sure about that either? until we know whether he tics from PANDAS or has an underlying issue of tourettes, getting ready to start a steroid burst so we hope this will make it more clear.
  8. This was a HUGE problem for us also, sounds just like my son's sleeping pattern. He went on clonidine for his tics though and that helps him fall asleep now at a regular time, but there is no way he will get up early. We had a sleep study done at the sleep clinic and she said this is really common for tourettes but she was not familiar ( but was open) with PANDAS. We found out from my 9 y/o sleep study that he has apnea episodes. They gave him a cpap- which worked wonders- when he would wear it- once again try explaining ocd issues and PANDAS and why he won't wear a sleep mask even though
  9. My son is almost 10 years old and weighs 65 lbs, he is on Aug 875 twice a day and not progressing in getting better, but the 875 makes him just stable where he is right now. He seems to handle the 875 twice a day dose without any problem, but thats as high as we have been able to get his script for. I would LOVE to be able to try the aug 1000xr to see if it makes him get better but Dr K won't do it ): So I have to have faith he knows whats best in our situation.
  10. Dr K told me in an email "875 augmentin is more effecive in pandas than 1000 xr " Any thoughts on this? I had always thought, the 1000xr was to be the best- never tried it, but just heard it got better results?? I do know we are on 875 twice a day and when we added the zithro 250 zpack for 5 days, we had a lot of behaviors disappear and within 36 hrs of being off he dipped down again and is still stuck there. I'm pretty sure that Dr K. does not veiw antibiotics as a treatment for PANDAS symptoms. I could be wrong, but I think the reason he prefers the 875 augmentin( or the 500m
  11. Dr K told me in an email "875 augmentin is more effecive in pandas than 1000 xr " Any thoughts on this? I had always thought, the 1000xr was to be the best- never tried it, but just heard it got better results?? I do know we are on 875 twice a day and when we added the zithro 250 zpack for 5 days, we had a lot of behaviors disappear and within 36 hrs of being off he dipped down again and is still stuck there.
  12. I am beyond nervous, not for the surgery really, but about after. He just had strep 2 wks ago and still not back to where he was after ivig. So I am very nervous about what we are going to see. They are going to do iv antibiotics though and Dr K said a steroid burst after to try to get him back to stable again. Tomorrow our whole family goes in for family titer check- We should have done this a long time ago, but think I drug my feet because our family is so large when thats the main reason it should have been top on our list!! His psych dr is saying possible tourettes diagnosis also
  13. Just wanted to pass this along, talked with our ENT's office today, my son has a t&a scheduled for Monday- they advised stop giving him fish oil supplement until 2 wks post t&a , it thins the blood and causes bleeding.
  14. As a Canadian I don't get it either. I don't get why it is even listed as treatment for PANDAS here in Canada because my son's neurologist has been trying for a very long time to find someone in Canada with some experience using IVIG for PANDAS or post-strep problems (Sydenham's etc.). VERY FRUSTRATING!!!!!!!! So, it is listed here in Canada as a treatment option for PANDAS but apparently there are no Canadian doctors actually using it!!!!!!!!!!!!!!!! (Sorry - just venting a little!) But if anyone in the USA thinks Canadian kids are actually getting IVIG treatment for PANDAS - it seems
  15. Kelly and Vickie, my whole family is very thankful for all the hardwork and time you put into this and all the other PANDAS families thank you too!! Our whole family was voting as others and reminding each other every day it was an amazing thing you guys put together for all our children, we are very grateful!!! Now lets celebrate YAY!!
  16. What a hard decision!! We have t&a in two weeks, and if my son hadn't caught strep last week and went downhill I might have done the exact same thing as you. There is nothing like having your child back though and being able to enjoy your family again!
  17. My 9 y/o son does this when his symptoms are worse, after IVIG before strep reinfection last week we saw a HUGE improvement in this and had no issue with it anymore. Mind you, in our house our kids aren't allowed to say crap or holy cow so where he got some of these things was just beyond us but he is not allowed on Utube AT ALL , not even monitored because the second you turn around, its inappropriate things that he knows better. He had this thing about "Barney" and Teletubbies for a long time too that was really weird just saying stuff about shooting them and violent things. I am almos
  18. Also- this is prob a dumb ? but since PANDAS isn't an "on the books" disorder how is it Canada has it as something they pay for then? Does Canada have a protocol for what they consider PANDAS and we just don't here- how confusing and strange
  19. Would this also include other abx like augmentin too? interesting I will ask our pharmacist when I see her next
  20. Please keep us posted and do tell if there is anything you would reccommend. We have t&a in a little over two weeks. Wish you all the luck that things continue to go well!
  21. Actually laughed out loud when I read this !! Tracie- Did he give a reason why at all ?
  22. 9 y/o very violent severe rages daily up to IVIG. Self harm and then harm to others in the family also during rages. Very sorrowful and apologetic after. Rages returned last week due to a current strep infection. Pre IVIG- Tested for mycoplasma and results came back stating " no mycoplasma p antibodies detected" they told me that was a negative.
  23. I am just wondering if there is any relation to the reaction our kids are presenting after IVIG to the prophylactic antibiotic they are taking post ivig?? It seems to me that the more I hear about the higher dosing of antibiotic after the better the child seems to do ( not that any are the same by any means). We were doing so great here, rages were gone and behavior was amazingly better- tics (both verbal and physical) were still both presenting and then 4 weeks post ivig we switched from the augmentin 875 twice a day to the script we were given to be on afterwards of augmentin 500 and we s
  24. I just got my denial letter from BCBS - They denied from Dr K for one of the days of the procedure ( they paid the other) and then the whole amount from Oakbrook - they gave Oakbrook 5 days to fill out a request for more information to determine if "experimental" We are completely stuck on what we are supposed to do from here- we have no idea ) : whether to contact Oakbrook or Dr K or appeal or what to send or anything ) : Did any of you who have had success with BCBS have this happen also? and what did you do?
  25. Good to hear your update! We have a t&a for our son on July 12- please keep an update afterwards how this goes for your daughter, will keep her in our thoughts. Are you considering culturing after they are removed?
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