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LNN

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Posts posted by LNN

  1. Dut- good question...

     

    so, would this be tax decuctible? would there be a receipt?

     

    exactly what type of expenses does the money cover? doctor fees? airfare? meeting room? food?

     

    where would the donation be directed? directly to autism one? how would it be directed for the pandas think tank?

     

    possibly a one page write up, including some of what you said in the post, along with some more details (answers to above) could be done. We are tapped out right now, but I am thinking grandparents, and dh's company :D

     

    I have forwarded all of these questions and will post answers asap. I am sure there will be a receipt. I committed to specifically spread the word about the think tank. But as how the check gets made payable to etc, these are things I've asked for clarification and ultimately I will put any donor in touch directly with a contact at AO, as some donors wish to be anonymous and some may want recognition as a sponsor.

  2. Autism One has invited several of the leading PANDAS doctors to speak at their conference this May. Doctors Swedo, Cunningham, Trifiletti, Latimer and Kovacevic will be presenting, along with some case histories told by parents. They are also trying to host a "think tank" for the doctors - a closed meeting, not a public presentation - where they can share ideas.

     

    If any of you know of a company or donor that would be willing to contribute $500 or $1000 toward this effort, please let me know and I will connect them with the appropriate people at Autism One. Roughly $6,000 is needed to cover expenses for the think tank. This is not a plea to parents who are already tapped out from medical expenses! I just know sometimes getting the word out can lead to unexpected things to help a cause near and dear to our hearts. If anyone has contacts with a company or donor who might be willing to help, it would be greatly appreciated.

     

    Someone recently asked me why Autism One is so supportive of PANDAS. I can't speak for the organization, but my impression is that a large number of parents whose kids are on the autism spectrum believe that their kids have several co-morbid issues that can and should be medically treated. They feel that an ASD label is too vague and causes doctors to dismiss the other medical issues as just something they have to live with as part of ASD. PANDAS makes a lot of sense to some of these parents. The Columbia mouse study found that the PANDAS mice developed asperger's-like symptoms. So PANDAS might be one of the missing puzzle pieces for some ASD kids.

     

    I think Autism One wants to spread awareness about PANDAS so that like us, their members might be able to educate themselves and fight for treatments for their kids. (This is my take on it, anyway). The director of AO has interviewed Beth Maloney and Dr Kovacevic on VoiceAmerica Radio, and Drs Latimer and Trifiletti are scheduled for February interviews. She's helped me publish an article in the Autism File. And AO has reserved 5 conference presentation slots for PANDAS. For an organization that isn't about PANDAS, it's an incredible amount of support and advocacy.

     

    As far as I know, the "summit" among the doctors is still being planned. The Autism One think tank is separate effort. But whether a summit happens before or after the AO May conference, more than one meeting is still a really great thing. So anything any of you can do to reach out to donors or sponsors would be greatly appreciated.

     

    Laura Matheos

  3. Unlike some others, we saw destabilization for the first few weeks following PEX in August 09. He was way worse at first and I was beside myself. But then he greatly improved and (knock wood) we haven't seen any tics since. (he had horrible motor and vocal tics).

     

    He has however, had one minor and one medium exacerbation since. Neither one was because he got sick, but because he was exposed to someone who was. After the first post-pex episode, we went to a permanent higher-dose abx. But that didn't prevent him from being exposed to others. We brought the second episode under control with prednisolone. He now appears to be so "allergic" to strep that he's like a kid with a peanut allergy who needs to sit at a peanut-free table - that even being near strep causes issues. IVIG is a consideration, but there've been so many mixed results on the forum lately that we're waiting to see how things shake out. We're very encouraged to have the doctors starting to consult with one another.

     

    Post-pex, our major issues have been OCD and ADHD but no tics, anxiety, mood lability or muscle/joint soreness. So pex did help. I have no regrets. But it was not a cure (but my son was also constantly sick for almost a year, so that could be a factor). I agree that the steps you take post-pex are important to how effective it may be longer-term. I think your biggest challenge in doing Pex in February will be trying to keep your child healthy afterward.

     

    I wish you all the best - please PM if you have any questions.

     

    Laura

  4. We use a liquid probiotic from the vitamin shoppe

     

    http://www.vitaminshoppe.com/store/en/brow...AUNE?id=AH-1109.

     

    It's a strawberry-banana flavored probiotic (20 Billion per serving) that's the consistency of a dannon drink yogurt. I mix some into my son's strawberry milk and for my daughter, I mix it into a strawberry drink yogurt. $10 per jar and it lasts about 15 days for 2 kids.

     

    We tried to empty the powder into foods and drinks, but it doesn't disolve and my kids always swore it changed the taste of things and wouldn't eat whatever I had hidden it in. I even did blind tests. Sure enough, they'd walk away from foods if the powdered probiotics were in there. But they like the liquid stuff. My son took it for a month before he ever knew I was adding it to his milk.

  5. One comment about some of the time frames - especially box 16 prednisone. Dr L often goes with a longer course. We've done prednisone twice and both times, it wasn't until the 2nd week that we saw significant improvement. Weeks 2 and 3 saw really big changes. I don't think we'd have gotten the same results with only 5 days. Poison Ivy is often treated with 10 days of prednisone. Since there's difference of opinion between the doctors using this, and no Pandas study to look to, can we change Box 16 to just eliminate the time reference?

     

    Similar comment for box 19 - it was 3-4 weeks before we saw big improvements. Wouldn't want to set an expectation that everyone will see improvements in only 2 weeks. And if you've gotten to Box 19, you're most likely dealing with a Pandas doc, so they'd be able to tell what sort of time frame would be reasonable.

     

    Finally - can box 13 read "significant symptom remission in 4-6 weeks of good health and can box 21 spell out Immunoglobulin sub-classes - I don't know if Igg1..4 will be clear to everyone who might read this.

     

    I think you've covered all the bases I can think of. Nice job!

  6. Then why the insistence by some docs that there has to be a positive throat culture to even entertain a Pandas dx? Somewhere, this dismissal of other sources of infection came into play. What makes strep throat such an important criteria? You even see it in the recent articles (e.g. Can Strep Throat Trigger OCD?" The emphasis is always on the throat.

  7. If I'm following this right - I end up at the big red "STOP" box of non-strep trigger, with no where to go but considering the Cam Kinase study. So I have questions about this. What about strep being the original trigger through hindsight, but not the current trigger for exacerbation. Should there be a further path to follow if the Cam Kinase scores end up high? And what about the possibility of intercellular strep that isnt detected by swabs or ASO tests? Should there be a box about this to try 2 weeks of Zith and see if there is positive response?

     

    I had a similar question - some things would be different on this diagram depending on whether you're talking about a first/initial episode or subsequent ones. Somehow, we need to get doctors to understand that the diagnostic criteria and the steps they might use to rule in or rule out a Pandas dx would be a little different if you're looking at a first event vs. a retrospective look at evidence. But the more complex this diagram gets, the less likely it is that a doctor would consider it (imo).

     

    My son is now a "canary" - so sensitive that he has a Pandas reaction when his sister is sick but he is not. The Pandas experts get this. But if I had to walk into a pediatrician's office and start from scratch, I'd be up a creek without a paddle. Unfortunately, there isn't much research out there to "prove" the canary reaction is part of Pandas. So if this is something anyone would like to use with their local doctor, it might make the whole flow chart lose credibility if we start adding boxes that aren't supported by anything other than anecdotal evidence.

     

    Looking at this, you start to understand why so few doctors get or want to get this disease. It's not as simple as "is bone broken?" Yes ---> set bone and place cast. No easy answers with this disease...

  8. For those geekier than I am, can someone explain the difference between GABHS and GAS? I sometimes see them used interchangeably. I know GABHS is Group A Beta Hemolytic Strep and GAS is Group A strep.

     

    Is GABHS specifically "strep thoat" and GAS is any other kind of Group A strep infection?

     

    And why did Swedo zero in on GABHS specifically? Several strains of strep can cause pharyngitis/strep throat.

     

    Can someone shed some light?

  9. Hi Buster,

    Thanks for all this work!

    Two comments-

    1. would it complicate things too much to have a box suggesting an immuno workup - for IG levels, for lyme, etc - it's certainly a "rule out" thing many have done, but I don't want to lose the message by adding too much.

     

    2. Box 7 - a) is it just impetigo that doesn't produce elevated titers? I thought carriage and other individual body reactions could cause a non-rise. b- Should there be a note about doing an ASO 3-6 weeks post-infection, as this is the time when the levels would be highest?

     

    Nice job of making sense out of a very confusing journey.

    Laura

  10. Dr K will be interviewed by Teri Arranga tomorrow 1/19/10 at 9am. Teri is the director of AutismOne and editor of the Autism File and has been a great supporter of Pandas. Autism One takes the perspective that many if not all autism symptoms have a biomedical cause. She has arranged for Drs. Swedo, Cunningham, Latimer and Kovacevic to speak at the May conference and is helping to get the word out by publishing articles on the subject.

     

     

     

     

    PANDAS and PITAND: The medical basis for behavioral symptoms with Dr. Miroslav Kovacevic

     

     

    What are the disorders PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection) and PITAND (Pediatric Infection-triggered Autoimmune Neuropsychiatric Disorders)? How are the symptoms of obsessive-compulsive disorder, tic disorders, and Tourette's syndrome caused by PANDAS?

     

    Missed the Live Shows? Past Episodes are available On Demand and Podcast Ready.

     

     

    Listen Live to VoiceAmerica Health & Wellness

     

    Be sure to tune in to Autism One: A Conversation of Hope with Teri Arranga Tues 9 AM PT on VoiceAmerica Health & Wellness Network

     

    Log on to Listen:

    http://www.voiceamerica.com

  11. This tough love approach was very hard but in the end it was the right thing to do. He is struggling now not so much with the separation anxiety but intense fear of the separation anxiety coming back.

     

    You are going to have to be tough in dealing with this even though it breaks your heart. As you have stated your child resists even tiny steps like you moving your further away but they will eventually adjust if you stay firm.

     

    I think the hardest part of the whole thing is the feeling that you're cruel to make them suffer alone, that you're abandoning them. So it's important that they understand why they have to rise to the challenge. They act like you're punishing them when you make them separate from you. So you have to re-frame it and make them understand that yes, it's a hard thing you're asking them to do, but you wouldn't ask them to do it if it were dangerous or if you thought they couldn't do it. You need to focus on how strong they are and how they are the boss, how they need to teach the fear monster that the child is the one to be reckoned with.

     

    Whenever I was about to cave in to the tears, I'd have to remind myself that I was doing this to empower my child, not punish him, and if I could make him know this, there would still be tears, but at the end of the day, there'd be a sense of accomplishment inside him, knowing he could do something really hard without me. We both got rewarded.

  12. when we've had trouble these past few weeks, i've again talked about the dragon as i've dragged him out of the car or the witch as we walk in the door. he does squeak out a smile in spite of himself.

     

    i think it helps b/c it has some function of switching his track of mind where we haven't yet found the thing that is going to do that, in more of a traditional CBT or ERP way.

     

    i do believe these types of things are helpful as coping mechanisms while the real culprit is medical but that we need some things to get us through while healing is happening or in the midst of an exacerbation.

     

    good luck,

    Kathy

     

    I completely agree. Both my kids, Pandas (DS7) and non-pandas (DD5), can get anxiety. We too disagree with the standard school response of yanking them away from a parent or throwing them into the deep end in the hopes they swim. But we've also found we can't coddle too much.

     

    It helps when we acknowledge their fears and let them know we understand how they feel (a "Gee, you must really be worried" sort of thing). And we "personify" the fear and name it - it's the "wet fairy" or Warren the worrier, ...But then we explain to our child that when a parent comes to the rescue, all we do is teach the scary thing to be afraid of the parent. We teach the scary thing that our child is helpless without us. So it's important that we show the scary thing that it's really our child that's the boss.

    My kids aren't happy when I remind them of this, but they do get it. They understand that the only way to be feared as a force to be reckoned with is to slay the scary thing themselves. We try to support them, but we also try to let them know that we believe they're strong and can do this scary thing and succeed. Otherwise, we're just sending them the message that there really is something to be afraid of - that their fears are reasonable.

     

    It's a tough balancing act and it tears your heart out. But in baby steps, it is important to let them know they can face their fears and win. Otherwise, you can actually do more harm in trying to "protect" them.

     

    Maybe tell your son that next week, you'll stay for 1/2 the day for a few days. Then you'll only stay for an hour, then 20 minutes, etc. He won't like it, but you'll be preparing him and building him up and reminding him that you'd never leave him in a place where something bad would happen. Name the fear and practice stomping on it. Make it fun. And do your best to keep your own feelings out of it. It's really really hard, but over time, it will hopefully work.

  13. Here's the info I posted on inositol:

    Inositol (Vitamin B8) as an SSRI alternative

    a. http://en.wikipedia.org/wiki/Inositol

    b. http://www.nutritionj.com/content/7/1/2

    c. http://www.naturaladd.com/resources/articles/natural.html

    d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html

    e. http://findarticles.com/p/articles/mi_m0IS...55/ai_n6211958/

    f. http://www.ihealthtree.com/inositol-powder...e-naturals.html

     

    Please note you have to titer up the dosage, just like an SSRI, over about 4-6 weeks. Otherwise, you may get gas, cramps, diarrhea or unwanted behaviors.

     

    It helped us during the worst of times last year. Now that we're dealing with far less, we're trying to learn ERP to handle OCD, in the hopes that learning to recognize, manage, and squash unwanted thoughts will be an important life-long tool, whether it be from OCD, anxiety or just regular stress. Like inositol, ERP may not work for everyone, but I think we all need as many tricks in our bag as we can get.

  14. i see that it could be a form of OCD and if it is specific phobia, the treatment is still basically the same, but how do you work with it when the person doesn't really have the flow of thoughts and the goals are not his own?

     

    My non-Pandas (but potentially classic OCD) 5 yo daughter has bathroom issues that she cannot see as OCD. Her battle is with public bathrooms, especially automatic flush toilets. The noise terrifies her and she is small, so if the sensor goes off before she's ready, the spray gets her bottom wet and she is terrified she will get sucked in. Since both my parents and and Dr Latimer are all-day drives down I-95, this is a big deal (anyone try to take 2 kids and an adult into a public stall at the Maryland House rest area with 500 people in line for the bathroom while your child screams in your ear and people peak under the stall to make sure there's no blood?)

     

    The school also has automatic flushers, so next year when she starts school, we have some homework ahead of us. The kids at school taught my son by example that the automatic flusher can be "turned off" by draping toilet paper over the sensor until you're done. Our other trick is to tell my daughter that "the wet fairy" is trying to trick her into not using the potty. When she is focused on the urge to go, she is giving the wet fairy her attention instead of playing and enjoying herself - that's what the mean wet fairy wants. So we focus on how my daughter (who likes to envision herself as a super hero/strong woman) needs to do battle against evil and conquer/stomp on the wet fairy. Even my Pandas son gets into it and cheers her on. So she usually buys into it and given enough of a pep talk and time to mentally prepare, she'll rise to the occasion. It's ERP for pre-schoolers.

     

    Somehow, in terms your son enjoys, paint him as the hero and the OCD issue as a personified villain. Then weave a story where he conquers the enemy and saves (his) world. Hope it helps...

  15. Did you titer up to 1300 mg over time or just start at that dose? Your target dose needs to be built up over the course of about 6 weeks. Aside from serious gas/diarrhea issues, I would not be surprised if starting out at a high dose caused unintended problems.

     

    We had great success with inositol for a year. We only stopped after the anxiety issues were way under control. We started out at 400 mg for my 50 lb son and built up to 5 grams/day given 3 times per day (so at the start, it was 200 mg given twice a day for a total of 400 mg/day, then built up every 5 or 6 days until we got to 1.7 grams/dose X 3 times/day for a total of 5 grams). At the worst of times, I used it too and felt it helped me with my anxiety as well.

     

    Every individual is different, but we found it very helpful. If you want to give it another try, I'd set your target dose and then devise a 6 week plan to get there. Dosing information can be found in one of these articles

    b. http://www.nutritionj.com/content/7/1/2

    c. http://www.naturaladd.com/resources/articles/natural.html

    d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html

    e. http://findarticles.com/p/articles/mi_m0IS...55/ai_n6211958/

     

    Sorry - can't recall which. We only dosed to control anxiety, not OCD, as we were dealing mostly with tics and not OCD at the time.

  16. For the past year, people would raise their eyebrows as I told them my son was on prophylactics. Wasn't I worried about resistance and MRSA? Wasn't what I was doing "bad for the herd"? My response was always that of course I am, but we could talk about my son's contribution to the issue only after the cattle and pork farmers stopped feeding their animals antibiotics with every meal. Thought some of you would find this article interesting...

    70% of the anitbiotics used in this country are given to animals - 70%!

     

    http://news.yahoo.com/s/ap/20091228/ap_on_...the_meat_we_eat

  17. I've never seen anything that suggested Inositol helped the immune system, but I have several research articles that say inositol acts like a natural SSRI. It has been successfully used for ocd, depression and anxiety in place of SSRIs. It was once classified as vitamin B8 but was de-classified once it was determined that the body synthesizes a small amount of it on its own.

     

    Inositol is a water-soluble supplement, so there's less risk of building up a toxicity if you give more than the body needs. You mostly just pee away your money. If you decide to use it, you have to titer up slowly over 5-6 weeks, just as you would an SSRI. If you build up too quickly, you will get gas and/or diarrhea. As with all unregulated supplements, you have to be careful with your source.

     

    Here are some useful articles:

     

    a. http://en.wikipedia.org/wiki/Inositol

    b. http://www.nutritionj.com/content/7/1/2

    c. http://www.naturaladd.com/resources/articles/natural.html

    d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html

    e. http://findarticles.com/p/articles/mi_m0IS...55/ai_n6211958/

     

     

    We used it successfully all of last fall/winter. We stopped during the summer because my son's Pandas symptoms had remitted so much. We are now using ERP to fight the OCD that comes with a flair up because I strongly believe that helping my son learn to manage his OCD thoughts is an important life skill, given that it can take weeks for meds to help an episode. If his mind is trained to manage the thoughts. he can help nip things in the bud. But for the times we were dealing with a lot, the inositol helped.

     

    If you have anything that talks about inositol and the immune system, please post. I'd be very interested in reading it.

  18. Just an FYI - I was googling ASO titer test to fact-check something and I went to the NIH Medline Plus site

    http://www.nlm.nih.gov/medlineplus/ency/article/003522.htm

     

    It states that you should not eat anything for 6 hours prior to the test. I never knew this and now wonder if this had anything to do with my son's false negative result 3 weeks after a confirmed rapid strep test with blisters on his throat and scarlet fever. Or maybe he's among the 37% whose levels don't rise above levels that are "normal" for most of the population. May never know.

     

    But when I went looking for why you need to fast, I found this explanation

    http://health.stateuniversity.com/pages/14...body-Tests.html

     

    An excerpt:

    For the ASO test, increased levels of fats, called beta lipoproteins, in the blood can neutralize streptolysin O and cause a false-positive ASO titer. Antibiotics, which reduce the number of streptococci and thereby suppress ASO production, may decrease ASO levels. Steroids, which suppress the immune system, consequently may also suppress ASO production. Also Group A streptococcal infections of the skin may not produce an ASO response. Antibiotics also may decrease anti-DNase-B (ADB) levels.

    ....

    These antibody tests are useful for group A streptococci. Group A streptococci are the most virulent species for humans and are the cause of strep throat, tonsillitis, wound and skin infections, blood infections (septicemia), scarlet fever, pneumonia, rheumatic fever, Sydenham's chorea (formerly called St. Vitus' dance), and glomerulonephritis.

     

    ...ASO appears in the blood serum one week to one month after the onset of a strep infection. A high titer (high levels of ASO) is not specific for any type of post-streptococcal disease, but it does indicate if a streptococcal infection is or has been present.

    ....The diagnosis of a previous strep infection is confirmed when serial titers of ASO rise over a period of weeks, then fall slowly. ASO titers peak during the third week after the onset of acute symptoms of a streptococcal disease; at six months after onset, approximately 30% of patients exhibit abnormal titers.

    Antideoxyribonuclease-B titer (anti-DNase B, or ADB)

     

    Anti-DNase-B, or ADB, also detects antigens produced by group A strep, and is elevated in most patients with rheumatic fever and poststreptococcal glomerulonephritis. This test is often done concurrently with the ASO titer, and subsequent testing is usually performed to detect differences in the acute and convalescent blood samples. When ASO and ADB are performed concurrently, 95% of previous strep infections are detected. If both are repeatedly negative, the likelihood is that the patient's symptoms are not caused by a poststreptococcal disease.

     

    When evaluating patients with acute rheumatic fever, the American Heart Association recommends the ASO titer rather than ADB. Even though the ADB is more sensitive than ASO, its results are too variable. It also should be noted that, while ASO is the recommended test, when ASO and ADB are done together, the combination is better than either ASO or ADB alone.

     

    I wish this was from a source I could validate - I have no idea what "stateuniversity.com" is - but I found the full explanation on this site helpful and thought I'd pass it along for what it's worth.

  19. I always worried when my son went from 1/2 day kindergarten to full day 1st grade - how he'd handle his reluctance to use the school bathrooms. But when it came time, he soon realized he didn't have much choice. Nature won out over anxiety. He uses the stall for privacy, but no other issues.

     

    My daughter on the other hand (non-Pandas, almost 5) has a deep fear of automatic flush toilets. My son actually showed he that if you drape a paper towel over the sensor, it won't flush until you remove the paper towel (some kid at school showed him). So apparently school bathrooms are a common source of anxiety - and a source of creative inventions!

     

    Worst case, you can always resort to pull-ups. No one would know, but it would give you some protection in an emergency. I realize this is giving in to an irrational fear, but if it's preventing him from going to full day and you've had such an ordeal thus far, it might be an interim step.

     

    Also see if you can get your son to articulate what his fear is. For a short time, my son recently started stressing over using the school bathroom - come to find out that last month when they had a fire drill, he was in the bathroom when the alarm sounded and he temporarily got separated from his class. He worried that would happen again and started psyching himself out. I spoke to his teacher and she took the whole class through a series of "what if" scenarios to cover what they should do. It not only alleviated my son's fears - turned out lots of other kids had similar worries. Sometimes the things they worry about are things that never occur to us.

  20. Maybe it will help me quit smoking! (disclaimer ONLY outside and I even change my shirt every time I come back inside the house and wash my hands). That's been WAY up in me since this has started :)

     

    In its most basic form, it's the same idea. Your smoking is something you do as a habit or as a reaction to an uncomfortable feeling. No one can reason with you about quitting. You know it's bad for you, you know it's expensive, you know its bad for your kids...But the urge to continue is so strong because doing it makes you feel better. It relieves a stressful feeling (the addiction factor may also make it enjoyable, but I'm only trying to draw the parallel to OCD here).

     

    So when you're trying to quit smoking, or lose weight, or exercise - first you have to want to. But wanting to isn't enough. You then have to catch yourself having "urges" or in your son's case, OCD thoughts. Then you have to have a conversation with yourself to break the "automatic" nature of your response. And you have to use tactics - like delay - no, I won't have a cigarette (or a brownie) on the drive home. I'll wait until I get there. This is how some people cut down from 20 to 10 to 5 before they quit. Or maybe you'll make yourself busy with something else as a distraction. The urge might still be there, but you consciously try to push it out of your mind. The longer you're successful, the easier it gets.

     

    When someone with deep religious beliefs gets anxious, he can sometimes stop the worry loop by telling himself he's going to leave it in the hands of a higher power. When someone gets anxious about a high profile project at work, he might break the worry loop by doing a serious of "what's the worst that can happen?" kinds of inner conversations to try to de-escalate the feelings. When an athlete visualizes himself pitching the perfect game the night beforehand. he's training his thoughts. These are all ways adults learn to manage worries.

     

    Kids don't have these skills. So when anxiety and OCD take over, they don't know what's happening and they're not experienced in taking control of their own thoughts. They are often in positions of "having to listen" to what others tell them. So it's really hard to think about "rebelling" against an OCD thought, especially when that OCD thought is telling them something really realy bad might happen if they don't do the ritual. But it can be so empowering when they do, even in the smallest of ways. At a time when everything is turned upside down and nothing in their brains is working the way it used to, even small successes can mean a lot - to the whole family. It puts a light at the end of the tunnel and turns a victim into an active participant in his own recovery.

     

    I'm sorry this is tangent to the original thread. It just hit close to home.

  21. Those books sound fantastic! I'm going to look for them and get them tonight.

     

    As for allowing it - I know. I do. I guess we're trying to "pick our battles?". We've just gotten to this place of learning how to keep him from escalating and we're getting pretty good at it to some extent. However, I certainly do worry about allowing it to expand and get worse when we allow it :)

    I just want to clarify one thing as I re-read my post. The anxiety books didn't get rid of the rituals because that wasn't why we read them- they helped with the anxiety issues.

     

    The What to Do When Your Brain Gets Stuck book is for the rituals - it's basically a step by step book for kids on how to recognize an OCD thought, the need to boss it back, and several tools on how to do this. It is a lot of hard work. And it's tempting to not work on it if you know that antibiotics can do much for knocking symptoms down. But it does help keep the next episode from escalating and it does teach skills on how to manage all of your thoughts and emotions - skills that help into adulthood even when you don't have OCD. Having something to "work on" can give everyone a sense of control - like you might clean when you're really nervous. At least you're doing "something" and if you stick all with it, the hard work pays off. It helped us a lot. If you want ideas on some examples, PM me.

     

    Laura

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