dabel

Yes! She's only had 2 very minor incidences since quitting the lamictal 9 days ago. In a totally unrelated event, sometime during the night somebody defaced our sidewalk with a 4 foot penis in white paint-circumcised and everything. I'm so punchy from lack of sleep, I just can't stop laughing. Thanks for the laugh!!!!!!! I am not so punchy and I can't stop laughing!!!! Maybe you should consider leaving it there for awhile and use it for therapy for yourself. When you are feeling down you can go out and have a good laugh! I guess you are special afterall!! I don't think anyone is going to match the four foot penis story!

You have received a lot of great information from the others! Welcome to the forum! I am sorry that you have to be here but when that is the case, it is a great place to be for information and support. I know how confused and alone one can feel at first. I just wanted to mention that I noticed your son had a staph infection. One of my sons (I have several with this condition) really goes down hill from staph. One of his biggest 'crashes' was following a staph infection so that may very well be a contributing factor for your son's flare in symptoms also. Here the crash always occurs after the infection. I, like others, have also been down the PANDAS only trail. In the end I found my children suffer from multiple chronic infections including Lyme. I wish people had recommended that I rule that out when we started our journey into this complicated world. My children all run high strep titers so I though it was just strep. I was wrong. The others are right that it is best to identify the enemy as best you can and go into full out battle to get your child better! The good news is that with proper treatment you can get your child back! The road is not always easy but there is hope! Hang in there!

I have been looking for something like this too. I know they are working on one in the Green Bay, WI area and also in Iowa. So far, there are not many options out there from what I understand. I have thought about putting my son inpatient (psyche) for the same reasons you mentioned but hesitate to do so for the reason you mentioned too! It is so frustrating! If they had cancer we would not be in this situation!

I have this problem with my son too! It is soooo frustrating! Once they hit a certain size you can't really force them to do it anymore. I have no words of wisdom for you either but I can just tell you that you are not alone! My son is not giving me a date or anything he is just plain sick of this whole thing, does not care any more, and will not take ANYTHING! I have considered putting him in patient but to get him to cooperate but that comes with it's own set of issues. I hope the date he is giving you is not too far off and if you think of a way to get him on board I would love to know. I have tried threats and bribery but to no avail! I am really worried and frustrated with the situation as I assume you are too!

Are you referring to the Pfeiffer Treatment center that is based out of Naperville, IL? If so, I took my son there for seven years. At one point he was like their poster child but that did not remain the case when he crashed again. We were even approached to do a thing on Dateline because of our son's success on their program. We declined because we did not want to put our son 'out' there. If this is the place you are referring to let me know and I will share our experience with you. I used to rave about the place. In the end, I was so frustrated that, although I mentioned that every time he would get sick he would go downhill, they never looked for an infection or autoimmune issue that may be causing his problems. Even though, in retrospect, some of his labs there did indicate this. Once they heard how ridiculously high his titers were they agreed it was PANDAS. I had mentioned PANDAS to them a year earlier. I do have to say that I know a family whose son has really turned around on their program and he was a mess. So, it does work in some cases. I will also say that my child was their biggest challenge but considering the type of place they are I feel they should have recognized the problem or at least tried to rule it out. My child has PANDAS and has had three HD IVIG's but we have now found out that he has Lyme and this is why his forward progress has not stuck.

I am PMing you.

I can feel for your situation. I have one child that started treatment in October and did get worse before we saw improvement. He is now doing much better! My other son is just such a mess right now that he won't even consider treatment. I need to get him on board but I live in fear of him getting worse before better because there is no room for worse here. I guess you just need to hold on to what some of the other mother's here report as far as how well their children are now doing after going through the downturn. Hang in there!!!!

This lab is actually doing a case study on my family. From what I have been told and understand the ITT test is more sensitive than the Western Blot. It is not uncommon to have a negative Wb test which becomes positive once treatment has started and the bug is provoked. My family has found out that we have Lyme from this testing. I do not have a lot of time to respond now but I wanted to let you know that we have had this testing as well and believe it to be reliable. I am relatively new to the Lyme's world so others are better to answer your treatment questions. I wish you a speedy recovery!

I agree with Elizabeth and Momofgirls. I have given my son steroids several times and saw great relief temporarily. The first few times we just did a five day burst. When I saw him slipping last fall he was put on a 20some day taper. He is now in a really bad place and I wonder if it is not because of this. We have since found out that Lyme,among other infections, is at play here and steroid use can allow it to really take hold. My son is also refusing ANY treatment and it is soooo frustrating!

I am relatively new to the Lyme world so I hope others who have more experience will chime in. I believe that the CD57 is just a piece of the puzzle when it comes to diagnosing Lyme. Many labs do the Western Blot test you referred to but all are not same as far as accuracy goes. A lot of people here have used Igenix. We actually had our testing done at Neuro Science. In the end, from what I understand, the diagnosis is a clinical one and the labs can help support that diagnosis. As far as the percentage of mother's that are positive .... I can't say the percentage but I can say that I am positive and so are three of my four children so far. We are still waiting for the labs to come back on my oldest.

Norcal mom - I listened in on the Swedo interview last night and was so happy that someone asked about other infections. Thank you for asking that as it is so important as we have all found out! I was happy to hear her response as well!

I thought the same thing! I looked at my two boys and they both said, "I know you think he has PANDAS".

All four of my boys have had illness induced changes. Three of them have been diagnosed with PANDAS. We are now finding out that Lyme may be what set the stage for the PANDAS. All of us that have been tested are positive. We are still waiting on my oldest son's results. All present differently from very severe to relatively mild.

Bill - I am curious if Dr. L answered that question. It makes no sense that one infection could cause these types of symptoms but not another. Based on our experience they can all cause trouble in some! The treatment does need to be tailored to the bug though.

I posted this on the Lyme Forum but thought I would put it here too since this is where people are hopping over from.... Posted Today, 02:14 PM I was just thinking today that I hope everyone that is hopping over here from the PANDAS forum, due to Lyme diagnosis, is letting the PANDAS doctor and Cunningham (if they participated in the research study) know that their child has been diagnosed with Lyme. I think it is very important to do this so these other doctors will remove the blinders and rule out other causes of problems for these kids. I know that I would have appreciated Lyme to have been ruled out. If it was checked, or even mentioned, my one son would be 1 1/2 years in to Lyme treatment and we would have gotten him going when he was willing to cooperate versus now where he has slipped so far I can't get him on board - not to mention the money we shelled out on IVIG and the steroids he was given which can make things worse. I know of one doctor that actually told the parents of one of his struggling patients that the Igenex tests were of no clinical significance! OMG! The kid was positive for Lyme, babesia, and bartonella!! This same doctor said that he only knows of two of his patients that had Lyme and the chances were very low for a child to have it. If that is indeed the case, those two children are mine and I know this to not be true. Anyway, I just wanted to encourage everyone to let the doctors know so that maybe the blinders will be removed and the children can get the appropriate treatment sooner. This information is very important to Dr. Cunningham also as they are finding high Camkinase II in the Lyme's kids as well. It might not be a bad idea to let them know that the child is getting better too.

I was just thinking today that I hope everyone that is hopping over here from the PANDAS forum, due to Lyme diagnosis, is letting the PANDAS doctor and Cunningham (if they participated in the research study) know that their child has been diagnosed with Lyme. I think it is very important to do this so these other doctors will remove the blinders and rule out other causes of problems for these kids. I know that I would have appreciated Lyme to have been ruled out. If it was checked, or even mentioned, my one son would be 1 1/2 years in to Lyme treatment and we would have gotten him going when he was a willing to cooperate versus now where he has slipped so far I can't get him on board - not to mention the money we shelled out on IVIG and the steroids he was given which can make things worse. I know of one doctor that actually told the parents of one of his struggling patients that the Igenex tests were of no clinical significance! OMG! The kid was positive for Lyme, babesia, and bartonella!! This same doctor said that he only knows of two of his patients that had Lyme and the chances were very low for a child to have it. If that is indeed the case, those two children are mine and I know this to not be true. Anyway, I just wanted to encourage everyone to let the doctors know so that maybe the blinders will be removed and the children can get the appropriate treatment sooner. This information is very important to Dr. Cunningham also as they are finding high Camkinase II in the Lyme's kids as well. It might not be a bad idea to let them know that the child is getting better too.

I am happy that you like him and hope that you all get the correct treatment so you can all heal and get on with life. Keep me posted on how things are going! I am praying for your families recovery!!

Both of my youngest children had this also. It was discovered in utero. I did not keep them on the abx when they were infants. The one would get a rash. I now wonder if it was because he was most likely born with Lyme and it was a type of die off. I don't know. Anyway, we just watched them close and they out grew it.

We recently switched from BCBS to UHC. BCBS would not cover IVIG for my son but with UHC he is approved for monthly. My other son was just approved for hd IVIG also. I am not doing anymore IVIG on the oldest and am probably not going to do it on the next one either but at least it is approved if I change my mind. Anyway, UHC is much more IVIG friendly than most.

Thanks to all of you for your kind words and thank you to those who pm'd me info etc. I truly appreciate it! The nurse practitioner is scheduled to come on Monday. I think God sent her! I have sent all of his info etc so hopefully we can get the ball rolling quickly. Now I am wondering how the heck I am going to get him to a hospital to place a line when he won't even swallow a pill any more. Oh well, I will have to jump that hurdle when it comes. Your prayers are appreciated and much needed as I try to save this boy from the torment of his own bug riddled mind. It blows my mind to think that a little bug can do this to our children!! So sad for all....

The middle school principal ...... " I just can't help but to think that this is a self perpetuating behavioral problem." Errrrr!!! This is after my son missing almost two full years of school. Then starting back was doing beautifully and after a month got a virus and crashed! We had an hour long conference call with Dr. K, Psych hospitals, IVIG, etc. How I wish he was right!! Needless to say I don't care for this guy much at all!!

My 13 yo is in crisis! I do not know quite what to do. He now refuses to take his antibiotic or probiotic. He is staying up half the night. He was literally up all night last night and did not go to sleep today. He is staying at my mother's house 5 1/2 hours north of us because he is unable to be with his family. He does not want to leave the house. He does not want to see any other people besides his grandmother. He is massively depressed. He thinks his life sucks. He has not been able to attend school for three years. He no longer enjoys the things that he used to. He will not speak to me. He finds no joy in life. He does not want to be here. No need to go on.... I can not get him to come home to go to the LLMD. I found a nurse practitioner up north that treats Lyme and is ILADS trained. I spoke with her on the phone last week to see if she could help my baby. She was very kind and was willing to help but did say that he was a very complicated case (I am so sick of hearing that even though I know it is true ... just fix him please!) and I told her I would get back to her. I called her in tears today as my son is in such a bad place. I told her that I was going to make an appointment but did not know if I would be able to get my son to her office. She offered to go to my mom's house an hour and a half a way to see him!! What an angel!!!! She has also been in touch with two big Lyme doc's to see what they suggest in such a crisis situation. She suggested having a PICC line put in. She thinks we should consider a central line over a PICC line though because he is so non compliant right now (because he does not care anymore) and she is concerned that he will rip it out. I think she may be right. I think he may end up inpatient (I pray not....been there done that) and she said that they would have to follow the orders if they are in place at admission. I want to avoid the psych ward but I have to do something soon. My question is have any of your children or yourself had a line put in and if so did you see improvement quickly? Please pray for my boy! I pray having her go to my mother's house does not put him over the edge but I HAVE to do something NOW. I am just going to have to be prepared to have some tough love if need be to get him the treatment he so desperately needs. I can't just let him fade away without a fight.

I PM'd you.

Stephanie - None of us showed up CDC positive. Some have equivocal bands. Some have a positive band. Some have no bands. None of us are clearly positive on the Western Blot. This is why I am so happy that we did the NeuroScience testing or I think we would still be scratching our heads here. It is interesting that the ones who show the least clinical symptoms are the most positive on the tests and vise versa. This makes me agree that the sicker people, who may not mount the proper response, will benefit from this type of testing.

My four boys and I have had this testing done. It is supposed to be 'cutting edge'. The ITT part tests for antigens and is said to be more sensitive than the Western Blot. There are three 'sections' to this test..... ITT, Cytokines, and Western Blot. We found out we all have Lyme from this testing. Because part of this is supposed to be more sensitive than WB it would make sense to me that it could pick Lyme up in an individual that was not mounting a strong antibody response. This is the case with us. Also, it can help determine at what stage in the disease process you are at. I do not know if I agree with that part of the test based on the symptoms here. I hope this helps.