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Everything posted by kc35

  1. Thanks for your responses. I guess I'm just expecting too much too soon. The reason I really wanted to get started is that it affects my DD walking and the compulsions are multiplying which is what the therapist said would happen if it isn't addressed early. It is hard for us to go out without her retracing steps, in and out of doors, hopping around and touching things in awkward ways multiple times etc. I guess the truth is I am having a hard time with it because it is so strange and we get some strange looks. This has all started in the last month so it is distressing since it has NEVER happened before. Just a few tics in the past that just went away within a month of showing up. Her big stretching tic that brought me to this board 2 months ago is now gone. Some days are better than others. We haven't gone out too much in the last month because of it. I guess going out would be the exposure part of the therapy so I shouldn't avoid it completely. There are just so many different compulsions that it seems daunting but perhaps the therapist will see a common thread to some of them so if one gets tackled a few others will phase out too. I hope some of them fizzle out on their own. It seems like the up and down the stairs one is fading out a bit. That's the one we have to tackle first. For those of you with PANS children do you find their tics and compulsions stay the same or do they change a lot? Also do your kids say they are nervous? My DD says she is nervous a lot about strange things that shouldn't bother her. This all started after she got sick in early October with possible walking pneumonia. The OCD started one week after a 5 day course of az for the possible walking pneumonia. Before that she just had a few tics for ~ 1 month. The part of the exposure that I am a little confused about is how to coax them through it. My DD doesn't like to talk about her "feelings" to do things with me. She says she wants to forget about it. So when you are going through an exposure you have to talk about it and basically "power" through the discomfort of not doing the compulsion until the "feeling" dissipates. I just don't know the right words to say to her without making things worse. I just say "You don't really want to do that because it doesn't make sense to do that, do what you really want to do" and the "feeling" will fade away and eventually won't bother you. This will be hard out in public which is where most of the OCD gets worse. Any other words of advice on wording during exposure or anything else related to doing this? We have another appt next week. So we will be going once every week or two. Is that sufficient? The therapist said there will be 8 to 10 sessions. I feel like we will need more than that. What is others experience with length of time on this? I guess I'll just have to be patient about the bloodwork. I haven't tried the 5 days of steroids the doctor recommended as a part of the diagnostic tool. I wanted to wait for the bloodwork results to determine whether there were any infections including lyme. I also wanted to see if any of this OCD resolves on its own a bit. All of the other tics over the past year resolved after a month or two. This has been the longest stretch of tics and now OCD we have gone through. It has been going on since mid Aug when eye blinking started which is now a thing of the past. Also right now she has a runny nose so it wouldn't be a good idea to start the steroid now anyway. Just hanging in there. Thanks again.
  2. I went to a PANS Dr 2 weeks ago. He took 4 vials of blood and ran a PANS panel which included the Lyme Elisa and Bartonella test at my request. The panel included strep titers, mycoplasma, thyroid , adenovirus, CBC, EBV. I am still waiting for results since the panel is incomplete. I am not sure if the Dr is waiting for the lyme results to come in. I was told I wouldn't get any results this week. Has anyone had to wait 3 weeks for the results for this type of bloodwork? What about lyme tests through Quest, do they take 3 weeks or more? I am getting impatient. I took my DD6 who has OCD symptoms to her first CBT-ERP appt yesterday. All we did was talk about the compulsions and to throw thoughts away but no exposure exercise. I realize it was the first appt but for those who have done this with their kids, should the therapist be doing the exposure with the child and working through it with them. We left with me having to do an exposure with her for one of the easier compulsions but I am still not sure of the wording to use since I didn't see it being done. Of course after we left my DD was doing her compulsions which the therapist didn't see while we were sitting in the office, since her compulsions involve walking in and out of doors, hopping over lines etc. I want to know what to expect from this and speak up so that this is helpful. I need to see the therapist in action dealing with a compulsion and the exposure so that I know how to handle it properly. Is this unreasonable? Thank you.
  3. The PANS doctor wants to do steroids without abx which doesn't sound like the standard PANS protocol for possible diagnosis. So I don't feel comfortable giving her steroids only if no one else here was told to do that. The Dr told me that he won't prescribe abx at this point. Meanwhile her symptoms are getting worse - she can't walk without hopping, stopping etc. She is so upset by it. She came out of school crying because of it today. It is becoming very noticeable. My only option seems to be a phone consult with Dr T on Tuesday to see what he thinks. Advice on what to do?
  4. I went to a PANS dr yesterday. He is not one of the big names but he was on the PANDAS network page. He ran some bloodwork to determine whether my DD has PANS. The panel he ran included the following - antistrepO, CBC w Diff and Plt, IgE serum, Adenovirus AB, Immunoglobulins (G,A,M) ser, Lipid panel, myco pneumonia AB (IgG,IgM), comprehensive metabolic panel w EGFR, Dnase B antiobody, IGG subclasses, EBV panel, thyroid panel and TSH, lyme EIA w reflux, Bartonella (IGG,M). I have no idea whether this is comprehensive enough since I am just starting down the road to determine whether my DD has PANS. Hopefully more experienced members can be of more help.
  5. On the webpage of Dr. K (big PANDAS Dr in Illinois) - under the section "Updated Pandas signs and Symptoms" point number 7 reads "Measurable improvement following steroid burst" in red. I am confused about whether the child needs to be on abx while having the steroid burst or not. My DD has not been diagnosed with anything yet. She has no obvious active infection and is no longer on abx. Her OCD symptoms really ramped up one week after the abx were finished. Bloodtests are being run to test for infections. My understanding was that the steroid burst was to determine whether it was an autoimmune response. However from what some people on here are saying is that if there is an infection (which is what I thought PANS was anyway) then the steroid burst will make it worse. My DD is not on any abx since she has no signs of an infection. For those of you who have done the steroid burst, does it have to be done while on abx or not?
  6. The PANS Doctor said nothing about an antibiotic since DD doesn't seem like she has an infection. She was cleared of walking pneumonia by listening to her lungs 2-3 weeks ago by her regular pediatrician who knows nothing about PANS. It was 1 week after the azithromycin that the OCD really picked up. PANS Dr only suggested the prednisone. It will take 10 days to get the results back from the bloodwork. Which of course may or may not show anything. From what I'm reading here it doesn't sound like the prednisone is a good idea without taking abx at the same time. I am quite certain that he will not prescribe abx, since it is unknown if she has an infection and doesn't seem like she has one. So what should I do? Calling Dr T for a phone consult is the only thing I can think of.
  7. I went to a PANS Dr today. My DD6 OCD behavior has steadily been increasing over the past 2 weeks. This started suddenly after a 5 day course of az for walking pneumonia. She can barely walk because of her OCD - hopping on one foot, going back and forth, in and out of doors etc. It is very distressing. I can't even believe this is happening. When I was first on this message board about a month ago, she was just having some tics but now things are so much worse. The Dr agreed to do a panel of bloodwork through Quest - including Myco, strep, thyroid, Adenovirus, lyme and other immune type tests. He suggested we try a 5 day course of prednisone. My understanding is that the steroid is needed to determine whether it is an autoimmune rxn. If there is improvement in symptoms during the steroids or for up to 2 weeks after, then it may suggest PANS. If no improvement then it is most likely not autoimmune. Are there any side effects from the steroids? Do the behaviors get worse after the steroid is done? Also if she is coming down with something, then can the steroids make it more difficult for her to get better? Since my DD was on a 5 day course of az, her symptoms have escalated. Why would the az make things worse? Thanks.
  8. Thanks Nickelmama. That makes me feel better that Dr J. K. in OH corresponds with one of the big PANS/PANDAS Drs. I really need a Dr who really understands this to determine whether this is what is happening to my DD6. Things have gotten really bad in the last week - major OCD where she can't walk anymore without backtracking, counting, repeatedly touching stuff etc. I feel like I'm in "Saving Sammy". Do you know whether he does Igenex and Moleculara tests as well? Thanks.
  9. Does anyone have any experience with Dr. K near Cleveland Ohio? I made an appt with him next week to determine whether my DD6 has PANS/PANDAS. Her OCD symptoms are increasing daily. I got an appt with him sooner than Dr. L near Columbus and he is closer to me. A few of the people on here mentioned that they know of others who have worked with him. Does anyone know what blood tests he does for diagnosis or treatment protocol? I saw a link someone sent me that stated he treated a boy who was originally diagnosed with TS but then Dr. K determined he had PANS/PANDAS and was treating him with IVIG. Any information is appreciated. PM if you like. Thank you.
  10. LLM How do you search the archives? I can not find the Megs mom info on ERP. Can you post a link or be more specific of where to find out? Sorry I'm frazzled today.
  11. Thanks for info on OCD and therapy. I will have to read about it since I don't know much about it. I contacted ILADS about an LLMD in my area(western PA) but no response yet. Does it take a few days? A mom from my area found an LLMD- Dr S in Hermitage PA. Does anyone know anything about him? I don't think that Dr. L in Gahanna, Ohio does lyme and coinfection testing.
  12. I bought the book "What to do when your brain gets stuck" by Dawn Huebner when I started noticing low level OCD. I know they talk about putting thoughts in the junk pile. However my DD didn't want to read it at the time. Now things are so much worse. Since I have no experience with OCD I don't feel qualified to handle this. I don't know if I should read her the book or not. If things worsen with her OCD and other things, then I will move up her appt. with the CBT/CBIT person, especially since many of you have had good experience and recommend it. Thanks.
  13. The therapist that I saw for CBIT for tics also treats OCD. She said that the therapy involves throwing the bad thoughts into a junk pile or labelling them differently. Is this ERP therapy? Right now my DD doesn't have fear of germs. Like I said she is doing things repeatedly due to a "feeling".
  14. My DD6 who started off with tics, now has lots of OCD. This really picked up this Sunday which is about 1 week after she finished a 5 day course of az for possible walking pneumonia. I am still in the process of trying to figure out whether this is PANS/PANDAS. I am doing strep titre, myco IgG and IgM, and Lyme IgG and IgM on Saturday. Now she has to go up and down the stairs a number of times to get the feeling right. She has all these weird feelings to do weird things like touch things, repeat things, have me repeat things. I called the CBIT person we saw a week ago who said this is OCD. I have an appt with her at end of November but I may be able to move it up if need be. When we saw her last week, my DD was just off abx and not ticcing much and very low level OCD. So our meeting with the therapist wasn't too useful. My DH thinks that by talking about these feelings that is what is causing my DD to have more feelings. Is that possible? I called Dr. T in NJ, Dr. B in Ct and Dr. M in Fl. Dr T would do a phone consult and I may do that after I get the lab results. Dr B and Dr M are booking into April . Dr M only takes on certain patients.I I made an appt with Dr. L in OH for mid November. Has anyone worked with him? In the meantime what should I be doing? Should I take her to CBT sessions or will that make things worse? Should I be doing gfcf diet? I have been introducing more gf food and keeping the dairy low but it is not helping. Supplements? If this is PANS/PANDAS do things just keep getting worse until they are treated with long term abx? Does lyme disease cause OCD type symptoms as well? Any advice is greatly appreciated.
  15. Has anyone worked with Dr L in OH? He was on the PANS/PANDAS website. He also works with children with other issues ie)autism and uses an integrative approach testing for deficiencies etc. Please PM me. Thank you.
  16. If a child has PANS/PANDAS do the symptoms just keep getting worse until treatment by abx is initiated? Is that how you really know it is PANDAS/PANS and not Tourettes/OCD? I am still trying to figure out what is going on with my DD. Her OCD type symptoms are getting worse. She has to go up and down the stairs multiple times to get the feeling right. She has to touch things a certain way and freaks out if she doesn't get it right. She did not have these symptoms 2 weeks ago. These feelings have intensified since she finished her 5 day course of az last week. While on az her tics were better and OCD type symptoms were mild prior to her abx trial. I tried calling Dr T. He will do a phone consult for $450. Does anyone have experience with him? I called Dr. M in Fl but they have to decide whether you can be a patient there based on case history. Once I get the strep, lyme test results I will send it to them and see what they think. But I think you can't get in until April. I called Dr. B but they have a waiting list and no appt for 6 months. Does Dr. L do phone consults?
  17. LLM suggested that I try giving my DD6 Motrin 2 to 3 times a day to reduce inflammation. I just wanted to make sure I understood the logic. It is to reduce inflammation and then possibly reduce OCD/tic symptoms. This then suggests that the symptoms may be caused by PANS/PANDAS inflammation. Have any of you noticed the effect of Motrin on reduction of such symptoms? Have the PANS/PANDAS doctors suggested this ? How much should I give, for how long and how often? I have only ever given my child tylenol 2x since she has hardly ever had a high fever for any length of time. Also the lyme test I am getting done is Lyme IGG/IGM Titer with Reflex. That's all my doctor would agree to at this point. Is this the ELISA test? I am in the very beginning stages of determining whether my DD has PANS or Tourettes+OCD. As a result I feel unsure of myself, especially not being under the guidance of a PANS Dr. Hopefully by the end of next week, I will have the test results for the lyme (IgG/IgM), strep (anti DNase B and Antstrep O) and myco P (IgG/IgM) titer tests , and therefore I will have a better picture of what is going on. I appreciate everyone's time answering my questions.
  18. My DD6 has these feelings to touch things in a certain until they feel right. For example touching the edges of the book pages or lifting a chair leg a few times etc. She gets upset if she doesn't touch things in the right way. I've noticed a lot more of this type of behavior lately, perhaps she was doing it before but I never noticed. Now she tells me she has these feelings or urges to touch things in a certain way. Is this Tourettic OCD? Is it also helped by CBT just like regular OCD? Do you any of you have any insight into this? I am still in the process of determining whether my DD has tics/OCD caused by infections (PANDAS/PANS). My DD hasn't even been diagnosed with anything yet since we don't have an appt to the neurologist until early Dec. Thank you.
  19. The Lyme test is called LYME IGG/IGM w Reflex. What test is this ie)ELISA or WB or something else? It is all the pediatrician would agree to. I have called to ask for Pneumonia Mycoplasma IgM since he didn't write a script for that. I am waiting to hear back if he will write this. As for the OCD, I also thought it occurred later in the course of TS. I'm not even sure if it is OCD. From what I've read it seems like it. She has feelings to touch things a certain way until it feels right. If it doesn't feel right, she has to start over and freaks out until she gets it right. Does that sound like OCD? What effect will the Motrin have? Will it reduce the inflammation and then reduce the OCD/tic symptoms? Is this then a sign that it is autoimmune. Is it safe to give it to her 2 times a day? For how long? I've only ever given her tylenol maybe once or twice in her life since she never really had high fevers for very long. As far as TS in the family. There is a close relative who has eye blinking. There are some relatives with mild OCDish behaviors. There is no one with autoimmune disorder that we know of.
  20. I noticed that Dr L and Dr T have a contact page where you can ask questions. Has anyone ever tried this and gotten a response? My child is not one of their patients. I am just trying to determine whether my DD has Tourettes/OCD or PANS/PANDAS. I want to describe my situation and see what they think but I don't have any test results yet. I will be doing strep titers, mycoplasma and basic lyme test (not WB) this coming Saturday. I have to ask the pediatrician for another test suggested on this forum being mycoplasma IgM. My DD freaks out about blood work, so I have to wait till Saturday so my husband can come with me. While my DD was on azithromycin for 5 days for walking pneumonia her whole body tics were diminished. In the last week since she finished the az, her big tics are back but more disturbing there are lots of OCD things where she has to touch things a certain way etc. It is really stressing her and me out. I know that OCD and Tourettes can occur together, but I thought OCD developed later. My DD is only 6 and didn't have anything but a few simple tics in the last year. I feel like things are going to spiral out of control soon. I am so worried.
  21. I took my DD6 to her first CBIT session on Monday. At that time her tics were diminished and she wasn't really willing to participate. She was also a little sick at the time. But the therapist said that she has seen success with her patients in reducing their most bothersome tics. The child has to be a willing participant. Since my DD has only been dealing with tics on and off for ~ 1 year (as far as I can tell) and they are changing every few weeks, she may not be ready for it yet. As you may or may not know there is a book by Duncan McKinlay "Nix your Tix" written by a psychologist who has Tourettes and used similar techniques to reduce his tics. It's worth a try. Let us all know how it goes.
  22. Since I'm new on here I am giving a recap of the situation. My DD 6 has been showing signs of tics on and off (mostly off) since last fall. But this fall it has gotten worse. I have also noticed some OCDish type rituals of doing things until they feel right, which I've never seen before this fall. As I mentioned I am still trying to determine if this is PANS or Tourettes/OCD. In my neck of the woods PANDAS is not really accepted. After describing her symptoms to a Dr in my area whom I found on the PANS/PANDAS website, he said she most likely has Tourettes and not PANS. But he is not an expert and probably only recognizes PANDAS brought on suddenly by strep. My DD has been sick with various things over the last 4 weeks. She was diagnosed with walking pneumonia last week and prescribed a 5 day course of azithromycin. During that time I noticed her big tics diminished quite a bit. She has only been off the abx for ~ 3 days. We went back to her regular ped Dr yesterday who said that her lungs sounded clear and therefore didn't need anymore abx. He does not know about PANDAS and didn't seem to believe in it. However I finally convinced the Dr to test her for the main infections that people on here mentioned being: AntiDnase-B AB serum, Anti-Streptolyson O titer, Lyme IGG/IGM titer (He wouldn't agree to Western Blot) and Mycoplasma Pneumonia AB IGG. My question is this, at what point should I get her tested for these things? She was exposed to strep 2 weeks ago by a girl in her class. However a 48 hr test showed no strep and no visible classic symptoms of sore throat. She just finished her abx for the pneumonia 3 days ago and still has a cough. So should I wait a week or two to test her to see if she still has the infection. I'm worried if I do it soon, the effect of the abx in her system recently will mask the fact if she still has an infection. I don't want to mess this opportunity for these tests up, since I may not get this chance again. Thanks in advance for any thoughts on when I should get this bloodwork done. I'm thinking a week or two from now, what do you think? Thank you.
  23. My DD was sick again all of last week. I took her to her regular pediatrician who assessed the whistle in her lung as walking pneumonia not asthma like the previous Dr. He prescribed a 5 day course of azithromycin. While on this antibiotic her tics have diminished, but they are not completely gone. She still has a cough and a whistle in her lung. I will be taking her back to Dr to determine if her walking pneumonia is gone based on listening to her lungs. Is walking pneumonia caused by mycoplasma? My question is, does it make sense to ask the Dr to measure her blood for mycoplasma titer to see if the infection is gone? Also at what point should I get this done? I know the Dr will just tell me that it is not accurate blah blah, but I want to know what you all think and have an educated comeback? I am afraid her tics will explode in the next week or two and if they do, does that indicate that the infection is not gone and that it is PANDAS?
  24. My DD had eye darting last year and eye blinking this year in August. We have been told by several different doctors that it is a tic. Whenever she would have these eye tics she would rub her eyes all the time and say that something was in her eye. When her eye tics are replaced by something else the eye rubbing diminishes alot. I am new to all this but I think it is part of the premonitary urge or discomfort they feel in the area where the tic is.
  25. Do you believe that Tourettes, OCD is a form of PANDAS/PANS caused by some infection? For those of you have talked to Dr. L, Dr. T and Dr. K etc. - do they make a distinction between these disorders or do they consider all children with tics, OCD to have PANDAS/PANS? On Dr Murphy's webpage (U of Florida), the disorders are listed separately so I assume she thinks they are different. Any insight would be appreciated. So far I have seen 3 doctors in 2 weeks and no one is willing to do any bloodwork to test for anything. I have been told by one Dr that my DD has Tourettes. However her symptoms have ramped up a lot over the last 3 weeks while she has been sick with different illnesses. She was prescribed azithromycin today for possible walking pneumonia (mycoplasma) but she threw up. So I have to call Dr to determine what to do. What is strange is that when she has a fever her tics are less but once her temp goes back to normal her tics increase. Any thoughts on this? Thank you.
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