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Everything posted by thereishope

  1. Chemicals in the brain of someone with OCD looks different. Would a doctor prescribe a MRI to determine if a child's brain chemicals have been altered from long term PANDAS and they now, in fact, have clinical OCD?
  2. My son's last episode was also in March. What I don't know is at what point would you see the most improvement from IVIG. First let me say my son is 5 so he might view things differently. He doesn't think anything is wrong with him. He wouldn't answer the questions the psychologist asked. We didn't even attempt CBT because the child has to acknowledge soemthing is wrong in order for that to work. There's no way he would have doen therankings the psychologist showed me. Thers' no way he would have named OCD. Afterall, to him ther was nothing to name. So, I took it upon myself to pick a ritual. I warned him a couple days prior that he would have to stop that ritual in a few days. He didn't have a choice.The last time he did the ritual, he even asked me to take a picture of him doing it. I thought that was odd. It was complicated, lengthy, and I was involved I the ritual. Those, I think are the best ones to try to eliminate first. The ones that a parent is invloved in. At first, I mixed it up, then I eventually refused to do anything. Vrey high anxiety the first time, but it eventually went away and w/ each future elimination, the anxiety was a little less. The thing is, if you decide to tackle an OCD habit, you need to stick with the process. If you give in, you are reinforcing the OCD and it becomes worse. It's so hard to do sometimes. I know it would be easier and make him happy to just let im do it, but I know I can't. Even in books, they say it's ok to use "bribes" to eliminate. This worked w/ my son for one of them. I agreed to pay him if he didn't do it. Guess what, he didn't do it! Granted, I had to pay him for a few times but eventually I stopped paying and he still stopped doing it. As for SSRI's, my son is not on any. The psychiatrsit said if he didn't improve, we could try Zoloft. We won't be needing it. But in regular OCD groups, parents have said that their children didn't want to comply to therapy at all until they were on an SSRI. They needed that stabilizer in order even begin therapy. But, like you said, I remember reading on this forum once that PANDAS kids might react different to SSRI's. Is he on any supplements that are suppose to help with OCD symptoms? quote name='Worried Dad' date='Aug 19 2009, 07:44 PM' post='36446'] Susan and Vickie, I could really use your guidance here! Our son (13) just had rounds 2 and 3 of IVIG in Chicago with Dr. K (June and July). He's shown minor improvement, but (unlike after round 1 in October 2008) his OCD symptoms haven't abated much and are absolutely crippling right now. Contamination fears pretty much keep him a prisoner in our house (sometimes in specific rooms that are "safe"). Coping with the fears and rituals is draining my wife and me to the dregs. We've been trying CBT (ERP) with a local psychologist who specializes in OCD and anxiety disorders. We're making no progress. Our son just insists that he's "doing everything he can to fight the OCD already" and can't (or won't) try ERP with anything new. We've tried having him rank his obsessions / compulsions and tell us which is the "lowest anxiety level" so we can target the easiest stuff first. No dice. He just says he "can't do anything else." Our psychologist is basically out of ideas. He's suggested to us that we need to consider an intensive residential program. The closest such facility is 4 hours away, out of state. Our son would completely freak if he was suddenly thrust into this "foreign setting" and I shudder to think about how he (and the staff) would cope. We want to avoid this option at all costs! Sounds like you've both had success with the CBT / ERP approach. So I'm wondering if you can give me some pointers? Should we force the issue more, pick a ritual to target, and push our son to tackle it by making it a condition for doing something he wants to do (like play computer games)? The books I've read say not to impose these targets, to let the child feel empowered and allow them to pick which rituals to target in which order. But we (and the therapist) have tried this for months, and it's just not working. We haven't tried an SSRI yet. Dr. K is dead-set against these, and Dr. Latimer said she's found them to be largely ineffective for PANDAS kids. Have you tried SSRIs for your children? Did they help? (We have an appt we've been waiting on for 3 months with a local ped psychiatrist, and I'm guessing he'll want to prescribe an SSRI for our son.) Do we need to start with a very low dose? Have read studies by Dr. Tanya Murphy showing that PANDAS children reacted badly to "normal" doses of SSRIs (suicidality, etc.). Frankly, we're desperate. This exacerbation hit on March 29, and it's been a long 5 months. We'd be extremely grateful for any advice you can offer! Brian
  3. Obsessed isn't even the word. You said you have slight OCD. I can now see it in me. I ask assurance questions of my husband over and over. Is he going to be ok? Will he catch strep at school? Why didn't I do this? Should I have done that? It goes on and on. I feel I am paralyzed by fear and I am filled with anger at the same time. I cannot get anyone to back up putting him on propholactic antibiotics no matter how much I reason, beg, give them info, annoy,etc. I am going to be sending my child into a classroom of kindergarteners. I feel I am sending him into a pool of sharks.This is gonna be a long life.
  4. I went ahead and contacted some groups of immunology graduate students in facebook groups and asked if anyone would be interested, and curious, to visit this forum and help translate some of these studies. Let's see if we get a response.
  5. Did anyone ever mention the possibilty of PANDAS to you prior to that phone call? How are your grandson's tics at the moment? Like the previous post said, try to find a doctor familiar with PANDAS. Also, until then, if your grandson's tics get very bad again, either drive that long way to have him seen in person (they may actually think you're exaggerating over the phone) and demand a strep test culture. Granted, as other will say, it doesn't always come out + even with PANDAS, but it is a start in trying to figure out if there's a connection. Also, if they are off the charts, if it's okay to take with his other meds, give him a regular dose of Ibruprofen, give it an hour, and see if it helps at all. But first, make sure it's ok to combine w/ other meds. If needed, call a pharmacist and ask if it's ok to take w/ existing meds. Finally, does he have any other "symptoms" or odd behaviors when the tics are bad?
  6. Maybe the levels of mercury are lower in the fish they use for the fish oil.
  7. ERP? Does that stand for something like Exposure/Response? I think what I do w/ my son may fall into that catagory. If that's what it is, that does help him a lot. I did a little of that when he was still experiencing an episode, but not to the extent I do it now. Even during an episode, it did help sometimes.
  8. Something else to add.... The medicines that are dumped into the water system by being poured down the drain ends up in the drinking water. There is no filter that can filter out things like antibiotics, over the counter meds, etc. I even once called the pharmacy and asked if they can dispose of some liquid meds for rme. They said they just dump it down the drain. There's no other way pharmacies even get rid of it. Through a suggestion, I poured it into a balled up paper towel and sealed it in a baggie and threw it into the garbage Imagine how many meds kids are exposed to , prenatally, through drinking water.
  9. bronxmom, His diet while in Norway probably had something to do with it. They have differerent standards for food, as well in Europe. For example, they do not put food dyes in products. Major companies have different formulas for the American version of the food (that contain food dyes) and a different formula for overseas. Same thing for HFCS. I'm not sure about everything, but I know soda overseas do not contain it, but the American versions do. Finally, some pesticieds used on Amercian crops are illegal there too. In general, I believe Norway is more organic. Coincidentally, my neighbor just came back from spending 2 months in Norway. If your track the news from there, her family owns the island that had the major oil spill by it a couple of weeks ago.
  10. Do you have a psychologist on board? Mine offered to aid me in getting PANDAS added into an IEP under OHI. She is going to help provide info to the school.I will approach the subject about the OHI addition once school starts. He doesn't need services for it, but she wants it in there to protect him. Last year, I was just very open about the whole thing. This year, he is in kindergarten and I plan on doing the same thing. I tend to explainit a comparison to an allergic reaction to strep.I plan on explaining what PANDAS is before school beings.
  11. I hope I don't end up sounding too confusing. The psychologist said that a child should not receive therapy during the middle of a PANDAS episode. I totally agree. Like you said, the reasoning is gone. Now, the question becomes when is the PANDAS episode "over"? Well, I think each parent is the best person to know that. For my son, it was when the meltdowns stopped and the reasoning came back. For him, reasoning was stopping before hitting and being able to say things like if you don't stop, I'll take a toy away. He began to think casue and affect through.But, w/ this last time, that all hapenned, but the OCD stayed. That is what actually led me to seek a psychologist for him. As I awaited the first appt, I started weaning him off his OCD rituals, habits etc myself. He saw the therapist twice and she pretty much told me that it was obvious the remaining OCD was still different than calssic OCD. She even said, if it okay w/ me, she wouldn't even see him anymore. To just contnue doing what I had been. She said he may not even CBT (which I now see that he probably won't). The thing is if I never started challenging my son, he wouldn't be where he is today. He'd still have the 15+ OCD issues he had 6 weeks ago.now, he only has one obvious ritual left and I think it'll be gone in a few days. One more thing...fuelforall, one my son had rages, SpongeBob was the only ting that made him stop. He suddenly go into a calm trance to watch it. You have no idea how may time I frantically turned that tv on.
  12. Thank you for providing the timeline. I didn't know the possible connection was made in the 70's. What proof do you think the "naysayers" need in order to make PANDAS officially recognized across the board? If curious, as far back as the 1800's, researchers realized that infections can cause "mental illness". I know strep itsef doesn't cause the problems it's the antibodies, but, in a round about way, the infection is also the culprit. "In 1896 Scientific American published an editorial entitled “Is Insanity Due to a Microbe?” The question seemed logical, given that microbes were starting to be implicated in other diseases. In the editorial, two doctors described how they had injected cerebrospinal fluid of mentally ill patients into rabbits, which later got sick. The doctors concluded that “certain forms of insanity” could be caused by infectious agents..."
  13. If you find your Tourette's getting dramatically worse at times, it wouldn't hurt to have a strep test done. It appears that PANDAS can surface in adults too... http://ajp.psychiatryonline.org/cgi/content/full/159/2/320 Also, in response to what may happen to a child that goes undiagnosed with PANDAS, I found this quote on another website. "... after each attack the recovery of damaged brain tissues may not be as complete as we would hope. Eventually the child may develop a chronic psychiatric disorder."
  14. When my son had a cold, his OCD kicked up. I gave him dye free Ibruprofen and it worked! Like clockwork, on the 5 hour mark the OCD and over emotional state emerged again as the IB wore off. I would give him the Ibruprofen again and w/in a 1/2 hour, the OCD and easy tears stopped. I make sure it's in my cabinet at all times now.
  15. Hi, Michael. Unfortunately, no one really knows what the long term affects are having untreated PANDAS are. In the scheme of things, it is a newer "discovered" disorder. The oldest people I know of that had been diagnosed with PANDAS are now in their late teens/early 20's. There's always a possibilty that you had strep and your parents never knew. Many kids, like mine, do not get the classic symptoms of strep. I know he has strep when the meldowns begin and the extreme behvaiors resurface. Otherwise, there would be no red flag to swab. Do you remember if you had many strep infections as a child? At what age do you remember your Tourette's surfacing? Also, do you notice that your Tourette's worsening when you have a virus, cold, under stress, etc? Finally (and I know it's a lot of questions) what is leading to wonder if you have/had PANDAS? I think I remember reading somewhere that adults could have something similar to PANDAS, but it no longer falls into that catgory after you're passed that "pediatric" age. I'll look into it tonight.
  16. Nancy, by any odd chance do you know where the reporter will be getting her info from? Did Beth inquire what the segment would contain? You said the book was only part of the segment. Would you suggest families contacting the network and express the need for various forms of treatment, symptoms, etc to be touched base on? Personally, I think it will bring more attention to the disorder, but I don't think it would be an overnight revealtion of what these kids need. I still see a long struggle ahead...But it is a start.
  17. That's awesome! So which day should we make "PANDAS Awareness Day"?
  18. Ohio + malpractice issues = no good treatment for a "controversial" disorder. When Obama did his speech on healthcare and just praised the Cleveland Clinic, all I could think was...those are the people won't help Andrew.
  19. Michele, Could he have a lot of residual symptoms from getting sick for so many years? But I think that may only account for the OCD and ODD. I don't know if you can have residual tics. That part wouldn't make sense. That may also explain why the steroid didn't work. Like with Josh. He has PANDAS. He's responded to a steroid burst before so that backs up that he has PANDAS.However, he now has residual OCD. Granted, it's different than Andrew's and it's almost gone, but he also hasn't been sick as long as Andrew. I've now heard from many parents who are in the same situation as me. If Josh did a steroid burst today, would the remaining OCD go away from it? I honestly don't know. I,admit, it would have been fascinating to see if the chemicals in Josh's brain matched those of a person w/ clinical OCD after his PANDAS episode, but prior to today when most the residual OCD is gone.The chemicals in an OCD brain appear different in MRI's. Hmm....what kind of doctor would prescribe an MRI? A neurologist, right? Have you asked Dr Latimer if that would be something to consider? So, anyway, it can also be that Andrew has OCD and TS and PANDAS. The original definition was that PANDAS was a subset of children who already had those disorders. I think at this point, continue to treat the situation as if Andrew does have actual OCD and TS. However, like some one else said look into a different field, like immunology, to tackle the PANDAS problem. Now that you've had the steroid burst, would you consider a consult w/ DR K to get his opinion? I know $ doesn't grow on trees and you just paid a pretty penny for Latimer. Finally, did you ask Dr Latimer whether the meds Andrew were on could cover up any improvement that he might have had from the steroid?
  20. The government will eventually pass a strep vaccine in order to "protect the greater good". They will go on to say that all vaccines run the chance of a rare side effect but look at the devastation that might occur if, for example, a polio vaccine wasn't invented. (Eventhough the oral polio vaccine ended up giving some people polio...Anyway...). They will have a whole speech prepared for anyone who says it's bad idea. I don't think they should have a strep vaccine. I DEFINITELY know no PANDAS child should get a strep vaccine.Do you know if the one they have been researching would have to be readministered more than once? The # of shots these kids are getting is out of control and the fast rate they are invented then given to the public is ridiculous. Might I say one word...Gardasil. Let's just make sure we all keep a copy of this study on hand to show if they ever say we must get our child vaccinized against strep.
  21. Thanks. I just looked it up. You're right. It caused flare ups in some autoimmune disorders. I don't know why I didn't think of looking that up first before posting. Thank you! That would have been a huge mistake.
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