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Everything posted by tpotter

  1. flmom. I found the hypnotist, through google. I found 2 in my area, and reviewed their websites. I got a "good feeling" about the one I chose...can't tell you why..just a "good feeling", and decided to give it a try. So glad I did.
  2. Hi everyone. I haven't been on here in awhile, and a funny thing happened. I was just thinking today, that I should do a followup (it's been about a year), and then someone just happened to PM me from this group, so I said to myself: "why not do it now?" So, here it is. We are doing extremely well...not 100% as proven by a simultaneous herx between our dog, both my sons, and myself this evening...but the herx is over, we survived (2 of us were raging, but we were all aware, and took some things to calm us down.) My 21 year old is a senior this year in Aerospace Engineering, and my 1
  3. DS had for years...still has very occasionally. I would suspect lyme.
  4. I, too, wish I could attend. I have been to the last 2 (the first for Elizabeth Wray last year, and then the one in January for Justina.) Went up by train. I have a major meeting I have to be at that day, and cannot get out of it. The last one for Justina, on January 10, when we were fearful she would be permanently taken from her parents...only about 20 people showed up. There needs to be hundreds of people there. Right now, child protective services in MA is under fire, because a child who was truly at risk, disappeared, and is presumed dead. The persona who was supposed to be keep
  5. Please join us to support the Pelletier family at what could be the last court date to decide whether custody of Justina will be given back to her parents or if custody will be awarded to the state of MA . Remember...this could be any of us. There have now been at least 5 children that this has happened to in the past 18 months. Justina has been locked in psych wards for the past year (1 year this month!!!) All because her parents were following the medical directives of her metabolism specialist from Tufts University. I hope many of you can come. This will be in front of the Court Hous
  6. t_anna, I know you said that he responds to the ones in crisis first, but if Ophelia22 was in the ER having a severe reaction to the medication he prescribed..... But, in answer to the original question...some of the drs are more difficult than others to get hold of. After 8 years of dealing with this, I refuse to deal with anyone who does not return my calls or emails anymore. I feel I wasted way too much time in the beginning trying to get hold of people who were not going to return my calls. It would be wonderful if an appointment could be made, but, at least back then, our pediatri
  7. ktdommer...I know this doesn't answer your question about disability, but I am wondering...given that he is now an adult, and probably has been under treatment for awhile, if maybe an alternative treatment might be considered. Both my children are now adults (18 and 21), and they have been treated for many, many years...my 18 year old had sudden onset at 8 years old, but it still took us 4 years to get dx, and then another year to start treatment. My 21 year old was dx with Asperger's, and then we found out that he had PANS when he was 15. Both have taken tons of things, both have had PEX a
  8. ophelia22, I was wondering how things were going for you. I know it's been so hard all these years. Sounds like Dr. N. is working out great for you. I'm really glad. And, I agree with you about Drs having respect to return calls. There's no reason for doctors not to return our calls.
  9. I have several silver fillings that my dentist told me awhile back were going bad. I am now having some tooth pain, and he said it may be related to one of them. I know not to use just anyone to do it (he insists that it's just as simple as taking them out, and using a vacuum, but I know that's not so true.) Any suggestions in the Philadelphia area (includes central NJ) would be greatly appreciated. Thanks.
  10. Any idea why? Have you mentioned it to him? This could be several things, including maybe he is sick, and she has a flareup around him? I don't really want to think worse, but it is concerning, especially with a non-verbal child.
  11. Are you sure he's not the dr. behind kidnapping all the kids at BCH?
  12. Croatianmum, Have you tried homeopathy? It treats at the cellular level. Since we started, we are doing extremely well. My children each had 1 PEX and about 7 IVIGs. They helped, but not held onto the gains. We did treat for lyme and many co-infections (my younger son was dx clinically for lyme, bartonella, babesia and erlichiosis, as well as other infections, and my older son was finally diagnosed by blood test as having bartonella...I used Galaxy Labs 3 draw test after his emergency open heart surgery). Another thing to do is to really treat the gut, because 70% of the immune system
  13. I was going to say the same as mdmom. The low WBC that you mentioned may indicate babesia, as it affects the blood, and both babesia and bartonella can cause the mood changes that you are mentioning. Does he have any stretch marks (typically deep reddish/purple) or indications that there might have been some. They can be, literally anywhere on the body? What about foot pain? Both of the latter or clinical indicators of bartonella.
  14. This really has nothing to do with RomneyCare and ObamaCare. Neither one is taking away yours our our ability to pay privately for services. And, this case has nothing to do with who is paying. This has to do with several people at that hospital who have some kind of power issues, and for some crazy reason are not having administration deal with it.
  15. If your child has labwork showing CDC positive for lyme or co-infections, and/or there are specific symptoms, such as the bartonella rash, for instance, I would tell him, that Dr._________ diagnosed and started treatment. But, explain that you are at a loss as to why your child is not improving, and that you really need his help in finding out what is truly wrong, and what to do about it. Then, leave it to him to put the puzzle pieces together.
  16. Any updates? I haven't seen any come through this whole weekend. How was it? Any new information?
  17. Both my children were part of the clinical trial (we still had to pay for each.) It was very well worth it for us, because we needed more verification. It really depends how much verification you need in order to get treatment. It does tell you more than just whether or not it is strep related. It tests for an autoimmune response, dopamine reactions, and cam kinase levels (which are not only affected by strep, btw.) My boys were extremely high in all areas. Yes, by guys were taking abx at the time. Both ended up also having lyme and bartonella, and one also had erlichiosis and babesia
  18. 1:50 school aged kids are now dx with Autism. Does that say anything? And, my DS developed Parkinson's-like tremors...Dr. at CHOP told us it was "conversion disorder" (and this is with a strong family hx of Parkinson's, and 3 different docs who had already dx him with PANS!)
  19. Interesting that you bring this up, because our Ayurvedic doc keeps saying that cholesterol is not the villain it is made out to be.
  20. I would highly suggest that if you are going to test for mold, spend the extra money, and have it done by a professional mold expert (you can look them up in the yellow pages.) If you are in the Philly area, PM me, and I'll give you the name of the company we used. It is very well worth the money. Unfortunately, if you find mold, you really will have to remediate, and that can get expensive, but it has made such a difference since we finally found the source of the "smell". Don't cut corners. I would also look at diet. When my DS is following his diet (GF, DF, no corn, nightshades, s
  21. Yes, 3bMom. Vets do first look at infection. In fact, when my DS20 needed emergency open heart surgery this summer, and I knew that bartonella could cause the kind of damage he had to his aortic valve (problem started with congenital defect we didn't know about, though), I called our vet to find out what lab to use to test him for bartonella. Surgeon thought I was out of my mind to insist on testing (I told him I was paying, so what did it matter?) Vet didn't think that was strange at all. And, test was very complete, accurate, and DS came back positive! If docs would just stop denyin
  22. Very much sounds like PANS. Do you have a local doc there who you can get to run tests? PANS definitely can cause changes in handwriting, and sounds very much like my DS who suddenly couldn't speak (started as stuttering, then became difficult to move his mouth, and eventually couldn't speak for about 1 hour.) Both have to do with motor control. I would check for mycoP, strep, CPneumonia, viruses, even suspect lyme, and co-infections. But, yes, definitely get to goo doc, and get this under control immediately. She very possibly was exposed at school. Good luck. Please keep us informed.
  23. Just a recommendation for working with Dr. N. Don't suggest what it could be. Just tell him all your symptoms, everything you've tried, that you're desperate for his help to get to the bottom of it all. He really is a wonderful doctor. We only stopped working with him, because my son was doing ok, and we moved on to holistic treatment, which for us, has worked great. But, I think you will be in very good, caring hands with Dr. N. But, just let him try to solve the mystery. And, I'll keep you in my prayers.
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