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Everything posted by kimballot

  1. Cobbie - I, too, have been in shoes similar to yours. It is so dark and scary and lonely. I agree with the advice you have heard from others.... Ibuprofen, detox, coQ10 have all helped. We also found help from inositol, but I don't know if you can do that with 5htp. Try to move up the IVIG if you can. Also - we had lots of emotional effects from steroids initially, though we saw some improvement in the end. And.. (as you likely know) make sure dad and sis are really clear of strep. Have someone be with your child when possible if you cannot be. Take advantage of any friends, neighbors, family, church members, or anyone else you can trust to help you. I've learned to not hide my son's illness from people I can trust, and to enlist their help and support. It is amazing how much it helps for him to be away from me and with other people for a while during dark times. Even though it is summer vacation, there should be someone available at your child's school to help you. Guidance counselors usually have at least part-time summer hours and if not, the principal may be able to help. See if there is a counselor or social worker or someone in the community that can help to guide you through this. The counselor does not necessarily need to have PANDAS experience. I found that counselors who never heard of PANDAS may be the best option because they are often more open than counselors who say they "don't believe" in it. I had a psychologist who really helped me to know what services were available when my son was in crisis, and that really helped us make a plan for him. I give counselors some one or two simple articles about PANDAS or PANS (the IOCDF PANDAS page may be good as it has information at multiple levels). Set up a network now in case he does not have immediate relief after IVIG. And... in the middle of the night when you cannot sleep ... know you are not alone and there are many other mothers who are awake and working to get their children well. There are also mothers who are sleeping peacefully because they have gotten past the worst of it. I try to remind myself of that and keep my eye on the prize when the going gets tough.
  2. There is a pediatrician - Dr Susan K. Schulman - I believe she is in Brooklyn. She may not see adults, but she may be able to recommend someone who does. Also, I've heard good things about Dr. Eric Hollander - I believe he is in Manhattan and he is a psychiatrist. Good luck!
  3. The next time someone tells me they don't "believe" in PANDAS I am going to say "this isn't a religion and it isn't Santa Claus or the Tooth Fairy... It is not a question of believing in it, it is a question of evaluating my son to find the best explanation for his unusual symptoms. My son has neuropsychiatric symptoms when he has an infection and he has for many years, which is well documented in his case. If you would feel better, you can say you are treating an infection -triggered neuropsychiatric disorder, and not go against your personal beliefs against PANDAS, which seem to be impairing your ability to provide evidence-based treatment for my child.
  4. Swedo's 1998 study noted sensory issues during flares and so have most other articles. Here is some information on it for OTs http://pandasnetwork.org/wp-content/uploads/2012/01/PANDAS-OT-Article.pdf .. and there is a study going on for parents and teachers to fill out a survey about kid's sensory processing during exacerbation - go to https://www.sphhp.buffalo.edu/rs click on the PANDAS study box and find the study on sensory processing.
  5. I ditto everything you've heard from everyone above and want to add in that ibuprofen can bring temporary relief to our kids due to the anti inflammatory properties. You don't want to keep kids on it long-term due to liver issues, but I always do it round the clock for a few days if there is an exacerbation, in addition to antibiotics.
  6. Mary - YOU are an amazing Mom I just read my mother's day post from last year when I was struggling so very much with my son who was in exacerbation and seemed so lost (http://www.latitudes.org/forums/index.php?showtopic=13499&st=0&p=111760&fromsearch=1entry111760) I just read his Mother's Day card to me this year. It said "Dear Mom - There are many things you do for me (and he goes on to list the many things I do).. Although none of those matter. What matters most is that when no on else believed in me you did. You are an amazing mother." i believed in him because I read all of the stories from other amazing parents on this forum and I knew it was possible to move toward health. He is doing well. He is healthy. I have hope again. We still have a ways to go but we are on the right track. Hang in there folks... don't give up. Happy Mother's day
  7. Stephanie - So happy for you and your whole family that you found a treatment that is working. You deserve this! Happy Mother's Day!
  8. My son always reacted differently on antibiotics, but it was usually an improvement in behavior - not a deterioration. If you are seeing a deterioration with abx it could be herxing (there is another thread going about that right now) from die off of toxins, or it could be yeast. Do you use pro-biotics such as acidophilus (good bacteria) and / or Saccharomyces boulardii (good yeast)?
  9. Non embarrassing answer: We've all wondered that at some point.. A Herxheimer reaction (herxing) is basically a reaction that occurs when bacteria or yeast die off and the body cannot absorb the toxins quickly enough - resulting in a reaction. Often, the reaction looks like an intensified version of whatever the original symptoms were. Many people use various agents, such as charcoal and bentonite clay to try to absorb some of the toxins in the gut to reduce herxing. You will find many other remedies for herxing on this forum as different treatment seem to help different people. Here is some more on herxing: http://en.wikipedia.org/wiki/Herxheimer_reaction
  10. He is SO deserving and I am SO happy for you!
  11. I am so sorry you are going through this. It is very disheartening when this happens. My DS15was MUCH worse after his first IVIG. We were fortunate that he qualified for repeated IVIG and he has had IVIG for over a year now - every 8 weeks. We started seeing some improvement around 3 months post IVIG #1, but really continued to have pretty extreme problems for several more months. We also worked with a LLMD to adjust his antibiotics and his supplements and I do believe that helped. Today, he is doing very well. He is healthy and has not had any infections in 14 months. He is going to school and passing his classes. There is still room for improvement, but he is headed in the right direction! I don't know if he would have improved without repeated IVIGs - many people do see slow steady improvement with only one IVIG. We repeated due to immune deficiency. Hang in there and best of luck getting insurance coverage. Do check for immune deficiencies if you've not done that already.
  12. I agree with NorcalMom. Does your son get sinus infections often? S. Pnuemonaie is one of the prime causes of sinus infections. I don't know if you are looking at IVIG for your child, but if you are - not all insurance companies require the challenge test before IVIG.
  13. I think it is not uncommon for our kids to have reactions to antihistimines... but from what I have read on this forum, everyone seems to be different. My son has had hyperactivity with claritin and with beadryl in the past. Now he takes zyrtec and benedryl and does fine. We have also used quercetin with vitamin C. He had depression with singulair. I think much of this (unfortunately) is trial and error.
  14. I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help. I also think this is true unless it is false by the omission of "until there is another immune challenge that again triggers the production of said errant antibodies." IMO, 'completely normal immune function' is misleading. If that were true, we'd all be one and done. So, if IVIG does not restore "normal immune function" does that mean that there is some other immune system problem? My daughter gets IVIG every 3 weeks (1.5g/kg) and we do see immediate improvements- by the time the next IVIG is due we start regressing again. So, while it does seem like the auto-antibodies are some how edged out by the IVIG, they rapidly return once the dono-globulins begin to wane. My understanding is that IVIG likely does a number of things - which is why our kids seem to benefit from different dosages and different frequencies. 1. Swedo explained in one of her videos that it is thought that the good antibodies in IVIG complex with the auto antibodies that the child is producing to de activate the auto antibody and make an immune complex, which is removed by the body. This was a little confusing for me, because typically, immune complexes are an antigen (ex: strep or mycoplasma molecule) and an antibody combined. But.. in the case of autoantibodies and IVIG, the thought is that the donor antibodies complex with the auto antibodies. Dr. B told me that immune complexes that cannot be absorbed by the body quickly are deposited in joints and organs such as the kidneys (hence the joint pain our kids get with infections)... and he postulated to me that this may be why we see a temporary increase in symptoms (turning back the pages) after IVIG - while the body is removing these complexes, as some may have deposited in the brain. (I think this is hypothesis only at this point). 2. Some studies have shown that higher dosages of IVIG are also anti inflammatory - so HDIVIG (1.5-2 g/ kilo) is likely also reducing inflammation, and closing the blood - brain barrier - so the antibodies cannot cross over to the brain to start the aut immune process again. So .... in kids who may have had strep or another infection that has been TREATED and has ENDED, but who are continuing to have an auto immune PANDAS / PANS exacerbation - it makes sense that a one-time HDIVIG could stop the autoimmune process - or "neutralize" the errant antibodies and restore normal function. However... If the child either continues to have an infection (ex: lyme, hidden strep, ongoing mycoplasma) OR if the child is reinfected (exposure to strep, walking pneumonia, etc)... well then the body will have make new antibodies and will have inflammation .. which will lead to a breach in the blood-brain barrier and will start the process all over again! 3. In addition - many of our children are immune deficient to some selective antibodies, so they are on repeated IVIG to prevent infection - thereby preventing the whole cycle from starting again. Does that make sense? Of course - much of this is hypothesis and I think this is what everyone is trying to figure out with the current research.
  15. YIPPEE!! Thanks for posting - can't wait to read it!
  16. If anyone would like to share information about the symposium today.. we would LOVE to hear it!! Also- thanks again to the folks who organized this! Wish I could have been there!
  17. I don't know if it is -2SD. It could be -1SD as -1 to +1 are generally considered "normal" range for tests. -1 to -2 are frequently considered "at risk" and -2 a definite problem. So... your results may still be open to interpretation. Just a thought.
  18. My DS15 has had PANS most of his life but has only been actively treated for 2 years. His handwriting became very bad with each exacerbation and gradually got better, but never returned to baseline - so with each illness it became less and less legible. He has now had IVIG for 14 months. He just commented a few weeks ago that he is ENJOYING drawing and asked if he could take an art class! His math papers actually look like the numbers are in some sort of line. The handwriting still looks like an elementary school child, but it is legible.
  19. cool stuff! Someday our grandkids will say "once upon a time they did not even know how to make drugs cross the blood-brain barrier"...
  20. My ds15 takes 2 500mg capsules a day - at the same time (dinner) each day. Tried spreading it out but a morning pill left him with an upset stomach. He does OK with this dose. Could it be better with more? Perhaps, but I am not yet feeling the need to up it. Note: my son tends to react rather quickly to meds, so usually takes a smaller dose than other children.
  21. Ok...now that I am hearing this whole story I am getting really steamed. Why did this psychologist take pics in the first place - to prove it was NOT PANDAS? You should have a copy of the informed consent you had to sign to allow your child to be in the study. If you do not have a copy, call the psychologist's office and have them send you a copy. Go back and read it. Read what the purpose of the study was. Look under "risks and benefits" ... or something like that. Was one of the benefits that you would receive the pictures of the MRI - with no report? That seems odd to me. Since you have the pictures - could you find a radiologist to read them if you paid him/her to do it? I don't know what your finances are like or what it would cost but it might be worth a phone call or two to find out. A radiologist should be fairly neutral regarding PANDAS, so you would have less convincing to do. If you cannot find a radiologist then I think it is reasonable to look back on that consent form that you signed for your child to be in the study and look where it says "if you have any questions contact...." There should be the primary investigator and then there should be a phone number for the human subjects review board (institutional review board / IRB) that approved the study. Depending on how important your relationship is with the psychologist, you could call the IRB to ask if there is any way you could get written results from the study as you are concerned about your son's health and do not want to ignore problems. Just a few thoughts....
  22. Hi - I just wanted to chime in that I think Dr. Murphy really approaches each child individually. In our case, she agreed with IVIG every 8 weeks due to immune deficiency and PANS symptoms, but also made it very clear that my son should be on antibiotics for "the long term" and said that meant continuing well after IVIG had ended. The only thing she seemed "routine" about was her recommendations for supplements - the exact type of omega 3 she liked, in particular. Other than that, I felt her recommendations wer tailored to my son.
  23. I don't know how you could tell if the caudate nucleus or putamen were enlarged without either having a comparison picture from your child before exacerbation or without knowing what the "typical" volume is for kids his age. I don't know if you can safely compare the MRI pics from kids who may be two different ages and may have been done with different machines etc. I don't believe edema (swelling) in the brain is ever good. If the doctor talked about "areas of edema" then I would assume those are areas of involvement. I would ask the doctor for the MRI report - which they should give you with the pictures. The report will tell you what the radiologist thought and that would let you know what areas are of concern.
  24. I am so happy to hear of your improvement! I am not pushing for IVIG, but I will tell you that my son is also mildly immune deficient and he gets IVIG every 8 weeks, and this has been a blessing for us. He has not had a sinus infection since beginning IVIG (after a lifetime of chronic infection), and this has allowed his brain to heal. We see slight backsliding in his behavior a week or two before IVIG, but we don't really even notice it happening until he gets IVIG and he is so much better after the treatment. My son does continue to have low IgG between treatments, so I am sure the IVIG is needed. I would encourage you to check your son's IgG level and take that into consideration when deciding about another IVIG.
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