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dabel

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Everything posted by dabel

  1. Soooo glad to hear this! Hang in there!!
  2. My heart is breaking for you my dear friend! Like I mentioned in my email, situations like this show why there is such a great need for a hospital or some place to send these very sick kids to so they can be properly treated. This is soooo frustrating to me, as you know. If he was into drugs they would keep him inpatient for a month. If his chronic infection was causing him to throw up and become dehydrated and malnourished he would be hospitalized. But in this case the chronic infection is causing his brain to be inflamed and short circuit so since the presentation is pretty much only be
  3. United Health Care covers for PANDAS. It is listed under miscellaneous use in their coverage guidelines. They paid for ours with no problems.
  4. HD IVIG cost $15,000 for a child about that size with Dr.K. I don't know what it costs at Georgetown. You usually do get a break when paying cash. This had to be paid up front though - no payment plans. Dr.K requires payment upfront even if pre approved by insurance company.
  5. I agree with most here. It is best to test for all of the suspected contributing microbes sooner rather than later. All of my PANDAS kids (three) plus my non- PANDAS and myself have tested positive for tick born infections now. As far as the newbies go, I wish that this type of exchange had been going on when I ended up being thrown into the PANDAS world. If so, my one son would have been diagnosed much earlier and would not have gotten to the point of possible no return as he has now. I would like to point out that this child was so classic PANDAS that Dr.K found it boring - although he
  6. That is fantastic news!!!! How is your daughter doing?
  7. I know the pain and horrific range of emotions that you speak of only too well. I have watched my son suffer for a very long time. As hard as it is to watch, I can not imagine how hard it is to live. You are doing all the right things to make yourself well!! It is not a short or smooth road to wellness but at least you have now mapped out a route! You hang in there and stick to your treatment plan and you will beat this!!!
  8. My son was prescribed Abilify as a stand alone for what they thought was a severe mood disorder (before PANDAS/LYME/MYCO/ETC diagnosis). This did not go well for my child and we eventually stopped the drug. I personally would not try this for my child again.
  9. I am glad that you are checking for Lyme. I found out my kids have it and most likely got it from me. I thought it was just PANDAS but as it turns out it is several different 'bugs'. It was crazy because my one son was like the walking definition of PANDAS - as classic as they come. I feel the same way as you do about the whole Lyme and tick born illness world! I have told many people that PANDAS scared me but Lyme (and company) terrifies me!!! Please know that so many of these kids that have not properly responded or have not stayed well are coming up with TBI's. The majority of these
  10. I admire you. How I wish I could bottle your positive attitude and outlook and transplant it into my son!!! You will get through this rough phase and come out so much better on the other side. Hang in there!
  11. I know too well the depression that you are talking about. This is a HUGE and SCARY issue for my one son. I pray that your son's depression continues to lift and that he heals quickly and completely. The post IVIG time can be tough because we put so much hope in that little glass bottle! We tend to watch our kids like hawks fearing the worse and hoping for the best! I am sorry what you feared most you saw. Hopefully that part of this journey is behind him and he will continue on a positive trend. Hang in there!
  12. My oldest PANDAS boy scores a 25 on your scale.
  13. WOW!!!! I pray for a speedy recovery for him!
  14. My son who suffers the most is definite PANDAS. I was told his case was so classic it was boring (although it took 7 1/2 years to get a diagnosis that made sense). I was so relieved to finally have THE answer. He would be technically PITAND since he reacts to all types of bugs. He responded great to PANDAS treatment initially then we lost him again. I then found out that he is also positive for other infections as well so I was wrong and so was the doctor. He looked so classic PANDAS with the onset and symptoms but come to find out PANDAS is only one piece of the puzzle. I recommend,
  15. My littlest guy (10 yo) is allergic to amoxicillin. We have know this since he was an infant. He needed abx as a newborn. They gave him amox and I noticed this subtle rash. I stopped the amox and it went away. I started it again and it came back. In the last year plus he has been on Zith several times for what we thought were PANDAS episodes. He was fine the first few times then he complained he was itchy and then I noticed the rash. Not crazy but a little rash on his back and torso area. I stopped the Zith. Then his next episode I had a stash of Zith and since the reaction was mi
  16. It is more expensive to test them than to treat them so we just went ahead and treated our dogs. We thought better safe than sorry.
  17. I am soooo happy for you! The others are right, you are amazing!! I wish my son would be like you! I fight to get him treatment and he refuses ..... you fight for your own treatment!! You have an amazing life ahead of you!! I wish you a speedy and smooth recovery!!!
  18. My son had this. It was sooo sad to see. He literally could not move his neck. By chance we had an appt with the LLMD two days into it. He works out of an office that has a chiropractor in it. She did this 'cupping' technique and he got better almost immediately! I have been to chiro's for years and never saw this done. It left big hicky things on him but it sure did the trick!
  19. Check and see if you have a place called .... Any Lab Test Now.... we have had quite a few draws done there. If there is one in your area they charge a small amount to draw the sample and they will package it up and send it off for you. We have had good experience with them.
  20. I third it!!! You are a great help! I am sorry that you have had to go through all that you have but we all appreciate you sticking around and sharing your journey. All of us and our children have benefited from you!
  21. I heard that a 'stork bite' was an indication of coinfection. My youngest three all have this. I believe Ann Corson said it when I watched her on the live stream at the conference.
  22. WOW! One kid after another here! I was not on the forum much when all the Lyme stuff hit. My kid was doing good at the time (didn't last) and we were living. So, I have no idea how the whole Lyme ball started rolling on here. I have heard that it ruffled a few feathers. I have to say thank goodness that issue came up because look at all the kids who are going to get the proper treatment now - my kids included. I am sorry that your child is positive but happy for both of you that now you know what you are dealing with and can get rid of it!!
  23. This just started recently within the last few days. A week at most. I was shocked how wet his socks were! He is on Doxy, Zith, Nystatin, presciption vit d, milk thistle, and probiotics, He has been on this combo for quite awhile. The only recent change is we added the prescription vit d and the milk thistle about 1 1/2 weeks ago.
  24. Have any of your kids experienced this? My 11 yo has been being treated for Lyme since October. He has also tested positive for HHV6 and myco. Lately he has complained that his feet are wet. We live in WI so I just thought he walked in the snow or something but he said no. Last night he changed his socks before going to robotics. When he came home he again he had the same complaint. I had him give me his socks and they were wet! What the heck? Have any of you experienced this?
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