dabel

Soooo glad to hear this! Hang in there!!

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 between the ears you are left to try and manage things at home. Now look what has happened ..... this infuriates me!! I wish I was rich. I would open up a center for these older hard to treat children since apparently there is no such place on earth!! We can physically control the little guys but when they hit a certain point it is impossible!! This is sooooo unbelievably sad!! He is a good boy ..... we have to figure out how to get him well!!! I am praying HARD for you, your boy, and your entire family!!! I am here for you when you are ready to talk ...... day or night no matter what time it is.

United Health Care covers for PANDAS. It is listed under miscellaneous use in their coverage guidelines. They paid for ours with no problems.

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.

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 went through over seven years of he!! before being diagnosed! This kid did respond positively initially to the PANDAS treatment but it did not hold! Now he is in a place that I honestly don't know if I will be able to pull him out of! Some doctors do not realize or admit what a HUGE complicating factor these other infections can be. I do not understand this! Although the testing is not cheap, it is less expensive in the long run to rule this stuff in or out so that the child is properly treated ASAP. I strongly encourage all to keep an open mind when trying to diagnose and help your children. This should not have to turn in to a debate. Our kids futures are on the line. Who cares who is right or wrong.....these kids are sick and need the proper treatment. I also would like to say that I think it is crazy for this doctor to tell a mother not to be concerned about Lyme with a confirmed tick bite. The same doctor told my friend not to be concerned about her son's tests results which showed Lyme, Babesia, and Bartonella. I am sorry but I find that ludicrous!! Based on my experience, I would definitely be concerned - this is nothing to mess with and you certainly don't want to give it a chance to take hold of your child! The sooner you catch it, if it is there, the better!

That is fantastic news!!!! How is your daughter doing?

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!!!

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.

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 kids are improving drastically on Lyme treatment. One of my boys is 6 months in to treatment and has greatly improved!! My most severe boy is refusing treatment but I pray to get him on board and give him his life back soon. Hang in there!

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!

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!

My oldest PANDAS boy scores a 25 on your scale.

WOW!!!! I pray for a speedy recovery for him!

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, based on my experience, to rule in or out other infections right away so the proper treatment is started ASAP. I sure wish I would have done that ...... I often think of how different life would be for both of us if I had. Hindsight is 20/20!

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 mild I thought I would try it again - within three days here comes the rash and itchies. Now he has been on Doxy for about 6 weeks and here we go again. Itchy little rash thing going on. How do you determine if it is an allergy or herx? If he is allergic to all of these we are in trouble here.