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3boysmom

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Everything posted by 3boysmom

  1. Oh yea, I guess we can't forget to factor in the infections that each child of all of ours may have had at the time of the Cunningham tests. That would definitly effect the behaviors of what was going on with them. DS13 had ASO 1720 and Anti Dnase 1920. DS11 had ASO 626 and Ani Dnase 756. DS10 has ASO 236 and Anti Dnase 450.
  2. OK, I am home now and pulling out the huge binder of tests and notes and labs from the 3 boys over these 3 years!!! Cunningham tests run 10-25-2010: DS13 (then 10-almost 11)-Huge overnight dysfunctional OCD and body movements (NO TICS at the time) Cam Kinase II score: 166 Anti-Lysoganglioside: 160 (normal range: 80-320) Anti-Tubulin: 1000 (normal range: 250-1000) Anti-Dopamine 1: 1000 (normal range: 500-2000) Anti-Dopamine 2: 16000 (normal range: 2000-16000) VERY HIGH DS11 (then 9)-night terrors, baby talk, personality change, HSP (No OCD & No tics) Cam Kinase II score: 140 Anti-Lysoganglioside: 160 (normal range: 80-320) Anti-Tubulin: 500 (normal range: 250-1000) Anti-Dopamine 1: 2000 (normal range: 500-2000) HIGH Anti-Dopamine 2: 8000 (normal range: 2000-16000) DS10 (then 7)- Hyper, impulsive, immature, anxiety, and vocal & head tics (NO OCD): Cam Kinase II score: 134 Anti-Lysoganglioside: 160 (normal range: 80-320) Anti-Tubulin: 500 (normal range: 250-1000) Anti-Dopamine 1: 1000 (normal range: 500-2000) Anti-Dopamine 2: 2000 (normal range: 2000-16000) VERY LOW The letter from the study says "We measure the levels of antibodies against the neural antigens lysoganglioside, tubulin and dopamine receptors D1 and D2." "Antibodies may induce increased signaling of neuronal cells and cause release of too much dopamine in the brain." So the DS13 with high D2 (at the time) had no tics and the DS10 with low D2 had tics. Dr. B said that the results were what he would expect. So I wait in hopes that this very wonderful gem of a doctor will be ble to get Dr. Cunningham to clarify and then find that we may be able to try Amantadine after all and it will be the help that we need! I hope this helps! Linda
  3. LLM I am just as confused, however the comment about the receptors being blocked is what our doctor wants to find out. Actually he sounds like he is trying to understand the difference between what Jag10 and you are saying. 2 years ago when we saw Dr. B and showed him our 3 boys' Cunningham test, he looked at low dopamine on one boy and said "I bet he has tics"....he did and the other boy D2 was 16000 and he said "he probably has OCD and not tics"....he did. So now the boy with OCD does have tics after the Coxsackie Virus and of course the Cunningham test is now 2 years old, so what does that mean??? He has major brain fog and zero attention and SLOW to do anything. I really want to try something for focus but don't have the heart to take a chance on the tic increase because he is already so loud and he sounds like a walking barn of animals...poor kid. Now you have me interested in tryosine supplement, is it a stimulant? Can it increase tics? Is your child or Jag10 child ticcers? This doctor is not a PANDAS specialist "per-say" but I got his name from Professor Garth Nicolson when I reached out to him for Mycoplasma help. He is a quiet small town doctor that thinks 'out-side the box" and has been rejected by his fellow doctors. He has followed PANDAS since it's discovery and has a hobby in learning and reading and studying all about PANS issues. Professor Nicolson has been helping him treat and look for Mycoplasma for years and he looks for all types of infections. He is a very quiet modest man that reminds me of Mr. Rodgers (from TV). He wants to learn everything he can, so if he hears from Dr. Cunningham and gets that answer that is confusing us all....I will let you know. PS. I will not share his name, as he does not want that. He is an old fashion doctor, but a genius. He does not have a computer in his office and the receptionists use old fashioned typewriters. He does his research from home on the weekends. AND get this: His wife is a psychiatrist and they both have very activly tried to get Texas Children's Hospital to look for infections before using SSRi's on kids, but he said no one will listen to him. He seemed to really enjoy the joint phone consult with Dr.T. because he got to talk to a doctor that thought like he did. Well anyway, I'll keep you posted. CONFUSED, Linda
  4. DS had Candida Glabrada and was treated with Nystatin and then after 3 weeks Ketaconizal (spelling?) was added. That's when we saw huge improvements .... Until the darn Coxsackie Virus hit him! Best of luck!
  5. Don't know if she will answer him or not. Don't think he is going to ask for advice, just trying to understand all that he can without making him worse. I find it odd that some people dread putting their kids on attention meds and we are begging for it. Really wonder if their is some magical natural non- stimulating suppliment.?
  6. Well, I was hoping to try something new, but the Dr. does not want to do the Amantadine until he tries to talk to Dr. Cunningham. DS not only has HUGE attention issues and missing "chuncks of time" but this latest flare has given him loud vocal tics. His Cunningham test came back the highest on the scale for Dopamine 2, so doctor is worried it will ramp up his tics. Put him back on Valtrex today, but he still sounds like a donkey and it is $350. to refill for the month! So now what to do about the ZERO ATTENTION span? He mentioned that we may possibly go for PEX. Any feedback on this. Did it clear tics or improve focus? We already did 6 IVIG's last year, but that was before we knew to look for other infections and we found MANY! Back then wwe thought it was a strep only problem. Getting tired..... Linda
  7. I left a comment. Not sure who sees them, they don't show up publicly from what I can tell.
  8. You can also have his ASO and Anti Dnase strep titers run just to see where they stand . But could be viruses or Lyme or.....?
  9. OMG! I looked for a comment section, but couldn't find one on my iPhone ...
  10. Did he happen to get his shots for college? I teach with a girl who's 19 year old had a few little issue growing up until his meningitas shot for college made him dysfunctional with OCD and confessions. That big football player even drug his matress into his mom's room so he could sleep by her bed! Before we knew about PANDAS/PANS, our son had flares of dysfunction and we didn't make the vaccine connection until after the huge strep episode. Some here found that the trigger was the flu mist or shot. I think maybe Dr t has the most experience with older kids and complicated issues. I bet you are on the right track because he began his issues so young, did not respond to the normal treatments, and gets worse on psyc meds. Augmentin 875 was not enough for my 10 year old, (now 13) he improved when the dose was Augmentin XR 1000 like many others here. Or maybe augmentin is not the correct antibiotic for him. While you are looking into IVIG, also look into PEX . Those are other things people do for treatments I am on my iPhone and in a hurry, so forgive spelling! Don't give up, I think you are onto something..... And wow what a long journey for you and your family. Sounds like he is blessed to have a mom that keeps searching! Linda
  11. Did you see any improvement with your child's attention?
  12. Good, I'm glad you know about the caution of vaccinations! Dr. Cunningham has " the Cunningham test" (Cam Kinase) that many of us did for her research. Her lab will open soon. You can find out more on: pandasnetwork.org website.
  13. ADD for us as well and I know we don't have the same doctor. He does not want to give any ADD meds as he says that they can increase tics. I actually see kids at school on certain ADD meds that are only ticcers when on their meds for attention. This doctor does a lot of research and thinks outside of the box, so not sure what made him think of this. DS is improving since the Coxsackie virus was treated with Valtrex. But even though he improves after episodes, his attention is the one thing that seems to never have improved at all in 3 years! He has horrible attention and slow to do anything! Everything else is slowly improving again.... Knock on wood!
  14. I would like to hear feedback on this as well! Dr is looking at having DS 13 try this as well. It is so facinating to me that these topics "pop up" on this forum the very day I need them! Came back to edit because I saw your reply - Jag ( my " oldie" ). Seems like our 13 year olds keep crossing paths.... Can you keep me posted on how well this works? Our dr wants to look at DS Cunningham tests results and see how his high Dopamine levels may come into play with this medicine. This antiviral was found to unexpectedly help people with Parkensons. So he wants to help his focus but not increase tics ... NOT that he has any reason to think that it would, just that DS dopamine was VERY high on the Cunningham test and this doctor wants to research this issue a bit more first.
  15. KEEP BOTH.....!!!! Dr. T has much more experience in looking into infections that even the other PANDAS friendly doctors are nit as experienced enough to know to look for. BUT once you have your call with him, it is not easy to get responces back ( because he is in High demand). The doctor in Plano can be your " go to" doctor and and easier to access . We used Dr. T to have a phone consult with another doctor on the line and Dr T suggested to test for Coxsackie Virus & " bingo" that was it. Our local doctor took over from there and contacted us often but Dr T never answered anymore of our emails. ( & that is ok, he was still worth every penny). Keep both, many people here use a team of doctors! Good luck Linda
  16. My DS used to love to read but the severe attention issues that have lingered since thus began, makes reading a big chore because he no longer enjoys the stories. He says that he will be reading and then much later realize that he had no idea what he read or that he was "zoned out" and this frustrates him and the pleasure is gone.
  17. There is no such thing as " all the blood work for PANDAS" . Unless they are ONLY looking for high titers to strep! That is why a specialist in this disorder is so valuable... They get it AND that is why the name was changed to PANS.... The " trigger" can very well be a different infection that triggered this mess! For 3 years now, I was convinced that our DS was straight PANDAS until he had another major flare 2 months ago and none of the trusted antibiotics worked at all this time.... Blood work found Coxsackie Virus and when put on anti- virals, he then began to come out of the flare. My point-there is a good chance that the infection trigger has not yet been found, but there is NO WAY that "all the tests have been run"!!! Don't let them point you off the path... Keep looking, linda j know that Dr. K is a PANDAS doctor, but is he looking for other things besides strep?
  18. Actually you may be able to get started with a phone consult for $450. an hour with Dr. T. He can at least get you started with blood tests. Also been hearing good things from that dr in Plano. Not sure how much he knows about the co- infection, complicated aspects of this illness or if he just straight PANDAS knowledgable
  19. We live outside of Houston ( the woodlands) ... We travel. Only help we could find were drs wanting to treat with ssri drugs. Zoloft made our DS worse and then we discovered PANDAS when his titers to strep came back nearly 2000 instead of 200! Still they did not want to acknowledge an infection triggered issue, only wanted to up the dossage and add more psyc meds! In the long run, traveling is cheaper. Prayers to you, many of us have been there and are slowly healing our kids... You can too, Linda
  20. Only thing I wanted to say was that when we treated the H.Pylori, much improvement was seen. Don't have my notes here at work, so I can't tell you off hand which antibiotics were used. You may have found a "puzzle piece".... Good luck, Linda
  21. Isn't PANAS Network. Beth M's site or is that another one?
  22. Our 13 year old weighs 130 and takes 1 gm in the am and 1 in the pm. We are on day 14 of a 20 day script with no side effects. Tics are still bad but no longer debilitating.
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