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7upMom's Achievements

  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 budge. Now I just get abx through our local doc. We were all just out to see dr. k. Just a thought. Now we wonder if the Biaxin could be at least "making a dent" in potential tick-borne components in light of the IGeneX results. We see LLD Sept 22. Dawn hey there, this was a concern back in July but its amazing what difference a month has made, since we ran family titers and everyone went on antibiotics , d/s took off like crazy with healing almost immediately after. So far so great, back to school with no problems and enjoying normal daily busy life- its been an amazing transformation. Some tics, but that is all that is here at this point and we are enjoying every minute of him ( : Not ready to switch anything that he is on because everything is working so great at this point. I am hoping the same for everyone else! Srry ) : did not mean to hijack your thread ) :
  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 together its a tough job!!! How long did your steroid results last? Did you do the burst before you knew about the family strep problem or during treating it? Dr K just talked with my doc today and says no steroid burst until we are done with the 2 wk antibiotics, problem I see: what if its not eradicated in two weeks, then how much longer do we wait for steroid burst ): I am praying it works good- so its really good to hear others say it has for them. I wish I understood this family strep thing better! Just went out and bought UV lightholders for toothbrushes (:
  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 burst he is starting next week will help!! So frustrating!!
  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 it makes him feel great in the morning. So they did t&a, he has another sleep study in 2 months as a followup. I think he will still flunk because he still falls asleep from the clonidine but once again can't get up in the morning. We are nervous about school also- thinking of maybe trying to put this in an iep ?? don't know if thats possible but worth a shot!!!
  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 500mg or the 250mg) over the Augmentin XR at 1000mg per pill is becasue the 875 , and the other smaller doses, have twice the clavulinic acid, making it better at preventing strep reinfections. I mentioned the Saving Sammy dose to him as a PANDAS treatment and I don't think he buys it. He doesn't treat PANDAS with antibiotics, he treats PANDAS with IVIG and then prescribes antibiotics to prevent strep. Just from being on this forum though, and reading Saving Sammy, it sure seems like there is no doubt that the right kind and dose of antibioitcs can greatly reduce PANDAS symptoms for some kids. Dr. Trifiletti is much more in the antibiotics as treatment camp. With Sammy, for a year or so, if they dropped the dose of Augmentin, his symptoms flared. I personally think that for those that get better results from the Augmentin XR over regular Augmentin that it is the time release aspect that makes the difference for whatever reason. The difference in Amoxicillin from one to the other isn't that great, and you actually get more clavulinic acid from the smaller dose pills, and the clavulinic acid is what makes the amoxicillin effective against certain types of bacteria. So what does that leave, just the time release aspect. I know that Dr. K is of the opinion that Sammy still has PANDAS, and that his patients, after however long the recovery process is from IVIG, don't have PANDAS. I have no idea if he is right or wrong. I am pretty sure though that that is what he believes. Alex, This was a great explanation, and helped me understand the dosing and why Dr K said what he did. Thanks
  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 and wants us to keep in mind medication tenex. He understands PANDAS and believes in it, but thinks the ivig should have at least touched the tics, he is waiting to see what the steroid burst does and thinks if it doesn't touch the tics at all that he has also tourettes, his theory- if it were tics from PANDAS either ivig or steroid burst should have touched them some- MY theory is I want to make sure before he is given a diagnosis of tourettes that he is not reacting to someone being a carrier. We are just praying we don't make things all the worse with the t&a
  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 that this is not the case. In fact we just got back from a medical trip to Calgary (that Manitoba Health sent us on) only to be told that no one in Canada has PANDAS etc as an area of expertise - that my son would have to go to the USA or to London, England to be seen and treated. PKM WOW this is really disappointing and I bet highly frustrating for you, to know its covered there but it doesn't mean squat if noone will treat it. Wouldn't they consider coordinating care with a docotr from here , phone or email for a protocol so you could get your child treated? very interesting and sad ) :
  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!!
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