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Everything posted by tpotter

  1. Also, consider a steroid burst. They are usually done for several weeks, and even into 1 month. Very effective, and it is typical to use it on autoimmune disorders. If your doc isn't sure about how to do the steroid burst. Also, where are you located, and we different people on this forum can give you different docs names if the antibiotics/steroid burst isn't effective. Just curious, how long has your child been ill?
  2. I don't know the code #, but I know some docs are using Encephalitis NOS.
  3. For the record, I stopped going to Dr. T last year (he originally diagnosed my son with PANDAS 1/08), because I could NEVER get him to call me back. We went 3 months without abx just before he ended up hospitalized for 4 days with + rapid strep, severe tics, 104 fever, and chorea (which he had already seen). He saw my son a few weeks after hospitalization, and said he had PANDAS, then for some strange reason (never told me), he claimed that my son did not have PANDAS. Incidentally, DS has since been tested by Dr. Cunningham, and definitely has PANDAS (current Dr. says it is moderate to severe case, and he has been treated with IVIG, then PEX, and is being scheduled for another round of PEX...which has made a huge difference for him.) It was after that I found this connection, and started with Dr. K, and then Dr. Latimer (who is much closer to home.) We have been with Dr. Latimer since then, and she is wonderful (Dr. K is too, but as I said Dr. Latimer is driving distance from us.) I have held off saying anything about Dr. T, since seeing his name on this forum, but since you asked about his lack of returning calls, I felt it was necessary to weigh in.
  4. I was going to say this sounds like chorea. Another possibility is that it might be a tic? Tics do go away when they are asleep. the reason I think it may be chorea, though, is that my son describes the weird feeling in his hands when the chorea starts (just had a really bad episode of it the other day.) Either way, they are definitely symptoms of PANDAS, and if an infection is starting up (can be strep or even viral...it will trigger it...neurologist said so). If symptoms are really bad, and you can't get hold of the neurologist, try seeing your local pediatrician and have him/her get hold of the neurologist (I have found that doctor to doctor gets hold of the neurologist almost immediately.) Good luck.
  5. It really depends on the child. One of my children (both have PANDAS) has been sick almost constantly this winter, and of course the rages are the first to surface (I finally got several of the pediatricians in the practice to take me seriously...one finally apologized to me.) I have found the rages subside within a few days on my DS14, but literally overnight in DS17. So, it really does depend on the child. Both have had PEX, and the symptoms really went almost completely away, except keep resurfacing with new illness. We are on the list to get another round of PEX...hopefully soon. Good luck. It's such a horrible disease.
  6. We've found zithromax to be pretty tame (especially at that dose...my kids currently take the Augmentin XR 100mg 2x day, and that's up from 500 mg. zithromax.) When my DS 17 first took 250 mg zithromax it was such a beautiful thing. His terrible thoughts went away instantly. Just make sure he eats before taking the abx, and it should be fine. Good luck.
  7. Debbie, These are all really good questions, and need to be discussed with your doctor. First of all, there are 2 options for tx (after abx) that are being used, and there are reasons for each: PEX (plasma exchange/plasmpharesis) and IVIG. One of my children had IVIG, and then 2 months later, had PEX. He is getting ready to have PEX again. My other son only had PEX. They are both continuing to get abx, and their doctor has said that it will be probably until at least early adulthood (incidentally, that is a similar protocol for Rheumatic Fever, which is caused by the same bacteria.) The research is showing that PEX is more effective than IVIG, but honestly, it depends on the child. Many parents are finding that the children who are responding best to IVIG are those who have primary immunodeficiency (low or borderline IgG levels.) You might want to have your children tested by an immunologist. IVIG helps the immune system fight off illness, while PEX takes out the toxins. They sometimes have to be repeated, and really depend on the symptomology of the child, as well as how serious a case the child has, how long they've had it, etc. For my children, they both continued to have symptoms after tx. In fact, after the PEX, his tics became horrendous, and we had to take him to the ER, because he couldn't breathe (they didn't have a clue as to what to do, but at least the ambulance gave him oxygen, which I think is what really helped him in the end.) His doctor assured me it would take some time, but would pass. It was the hardest wait, but it did finally pass. My older son (we don't know specifically when he got sick...his symptoms are quite different), still has his OCD, and math problems and mood changes are coming back. He is still being treated with abx, and has started a different medication, as well, in case the problem is also something completely different. I am getting his tested again, though, through Dr. Cunningham, because it was her test that figured out his symptoms were not just psychiatric, but also PANDAS. This should help his dr. decide how to proceed. But, realize, that it is critical that you speak with your children's doctor, and be open to their recommendations.
  8. When my son is having problems, his zithromax works overnight. By the same token, when we try to decrease his dosage, he starts having problems again...overnight. So, yes, I do think a single missed dose can cause an increase in tics.
  9. I have been to all 3 doctors, and I can say that Dr. K. is exceptional as well as Dr. Latimer. Dr. K firmly believes that IVIG is the answer, and after my children have had PEX (and 1 has had IVIG with Dr. Latimer, as well), I have to agree. Dr. K. has a really good grasp on the situation, and really, really knows his stuff. I do believe that IVIG is a good option to improve the immune system. But, paying privately is a problem (would have been for us, too). For the record, I was not overly impressed with Dr. T. He did dx our son initially (thank goodness for that), but was impossible to get hold of, even when our son's symptoms were escalating, and he went for an extended time without antibiotics when they were desperately needed. Dr. Latimer has access to all the tx options, she does a very complete workup, got both my kids diagnosed (even though the older one didn't have "classic" symptoms), and both are now doing so much better.
  10. I completely agree with DCMom (and if it wasn't for her, we would not have known about Dr. Latimer). You sound like you have gone through EXACTLY what we have been through with our 14 year old son (even all the school stuff, although we have not resolved the school problems, and are now in Due Process.) The only difference is that our son had a sinus infection when he was 8 years old that appears to have triggered it. Dr. Latimer is the person you really need to go to. She understands the whole process, and has access to all the possible treatments. There are parents who come from all over the country (and possibly the world?) to see her. We live 3 hours away, but I would have gone even if I had had to fly there. We wasted a tremendous amount of time and energy prior to seeing her, and trust me, it was well worth the drive and the expense! As far as your son's age is concerned, don't worry about it. Our son also did not get better with puberty. He has now had IVIG and PEX (both through Dr. Latimer), and although not completely healed, is definitely doing much better. We are no longer "wornout" like we were with the illness (just the local school district, but that's a whole different situation :-) Good luck.
  11. I'm glad the airport security is willing to help you.
  12. Faith, These are great questions. First, it is possible for a person to have strep without the rapid strep coming back positive (blood tests should be done for ASO and AntiDNAse B. There are also other tests that should be done. I would really suggest that you consider seeing Dr. Latimer in Bethesda. She is a phenomenal Ped. Neurologist, and really understands as much as there is to understand about PANDAS. If you are in the Chicago area, Dr. Kovacevic is a Pediatrician who also really understands what is going on. We saw both (and ended up with Dr. Latimer, primarily because she is closer to us). Anyway, Dr. Latimer is able to rule out other possible causes of your son's tics, OCD, etc. The way I see it (and having gone through it for years before finally finding this group, and getting my son treated PLUS finding out that my other son had it too and treated, even though it was not classic symptoms) is rather than spending a lot of time wondering "if", get it diagnosed by an expert. There are also some excellent articles you can read about on the website Diana put together: PANDASnetwork.org. Good luck.
  13. When my son was hospitalized with severe symptoms (still wasn't being properly treated), he tested positive for strep + had Sydenham's Chorea, his stomachache (that he'd had for months) went away completely with IV antibiotics. My other son is now getting the stomach ache (not as bad, but still constant) for about 1 month. We thought it was the antibiotic, but he is now getting other symptoms of being sick (for him it could be strep, flu, viral, cold, etc.) I need to check with his doc about possibly changing the antibiotic if it doesn't go away when his current, apparent illness is over. BTW...he has had PEX.
  14. Contact the airlines ahead of time, and tell them that you have a disabled child. They will help you board ahead of time, and help you make everything smoother. Dr. Latimer is fantastic. I know how you feel. Both my boys have PANDAS, and both are getting tremendously better, because of Dr. Latimer. It's been a very long haul...took 5 years to get diagnosed, and 6 to get treated (Dr. Latimer came on the scene!) I wish you lots of luck, and know that you can finally start breathing easier.
  15. Oh, I forgot to mention in my previous post, that one of my children also is an Aspie. We found out he had PANDAS purely by chance, and only because we were researching it for our other son, who's symptoms are more "classic" if you can call it that. But, again, go straight to Latimer for PEX and/or IVIG. She knows what she's doing.
  16. I completely agree. We went through 4 years of no dx (but trying to convince doctors he was really sick. Officially got dx 1 1/2 years ago. Abx worked great at first, but then stopped working. That dr kept telling us about IVIG & PEX, but wouldn't follow through, and wouldn't tell us who to go to to get it. In our experience, abx does not work forever, and yes, you absolutely must get tx immediately. With ASO levels as high as you're saying, and the symptoms you're having, you have to go straight to Latimer. PS..we live in the Philly area, and there is noone here, either. We finally got tx from Latimer for one of our kids in August, and the other last week. Don't mess around wasting any more time with the other docs if they won't take the next step. Trust me...we kept going from doctor to doctor, and all we succeeded in doing was making ourselves and our children crazy. Now that we finally got them treated (one with IVIG in June, and then PEX in August, and the other went straight to PEX last week), we are thrilled, and watching incredible progress.
  17. I just heard about your post from a group of parents that I found out about this week! My son has been having problems since 2nd grade...5 years ago! It started with behavioral problems, which were diagnosed as seizures (he does have abnormal brain waves, that indicate frontotemporal lobe seizures). Then he had the tics and OCD. The behavior was horrible...just like you describe, but no one could get to the bottom of it. School-wise has been a nightmare. My former A student is now getting D's and F's, and the school district is fighting us (we do have a lawyer). We got the diagnosis of PANDAS last year, but everytime he stops taking antibiotics it gets worse. He was even hospitalized over New Years vacation for 4 days, with possible Rhematic Fever at a MAJOR children's hospital, where the neurologist told us that PANDAS doesn't exist. After I argued with him, he said that even if it is PANDA (no "S") no one at this major hospital treats it (turns out there is a doctor that we have an emergency appointment with tomorrow.) He now has choreiform movements (may explain your child's symptoms of needing to move...he needs to all the time...it is different than his tics). My point is...don't mess around with this. Get on it now. There is a Dr. Leckman at Yale University who is doing a study. He is legitimate. Call him. There is also a doctor in the Psychiatric Department at CHOP (Children's Hospital of Philadelphia) if that is closer or easier for you (Dr. Elia). Call her if it's easier. But, again, we had no choice but to wait this long...we didn't know what it was for many years, because we thought it was only seizures and anxiety, and none of our doctors ever mentioned the word: PANDAS. Good luck.
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