Megs_Mom
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Posts posted by Megs_Mom
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Not sure how comfortable you are sharing info with this mom, but one thing I've done with people who start to give you "that look" like three heads are growing out of your ears, is to say "my son has an autoimmune disease that's similar to rheumatic fever. In RF, if the child is exposed to strep, his body mistakenly attacks his own heart". I wait for their eyes to grow large and then I proceed "my son's disease is similar, except his body attacks his own brain. So you can understand how we try to keep him away from kids who might be sick." They usually nod a lot and then get sympathetic.
I don't go into neuropsych explanations or try to explain how the behaviors drain the whole family. I just leave them with an image of heart and brain damage. It isn't "accurate" and doesn't do much to expand understanding, but it does get outsiders to take the disease seriously and puts more responsibility on them to do their part to protect my son.
That is exactly what we do! I find that short & dramatic is better for a casual conversation. Sometimes they come back for more info later.
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Whohooooooooo!!! Good for him. You should have an ice cream party tonight.
I still celebrate my own bed, over a year later.
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Heck, for this group, I'd almost come from nc!!! Love you guys, jealous....
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That sounds great - hope it keeps working! We found sensory tools to be incredibly helpful at the start of a meltdown - we did not have that chair, but we used "squashing" and "pressure" techniques, as well as standing her upside down. Never really sure why this helped break down the panic, but it did, most of the time. We LOVED our OT - she helped us find so many effective tools for everything from handwriting to meltdowns.
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Hi. Thank you for posting. I am so glad you are finding answers. Pandas is the great mystery answer for some , but I worry abt the children who do not heal. After years here, some children heal right away, and pandas treatment is such a miracle for them. For others, something seem so wrong still. Some kids seem " different" than a typical case, either in presentation, or in relapse. I worry that we could one day be one of those, as our case is well controlled but chronic. I am so grateful that so many of those children are finding answers in confection treatment and pray your son will be better soon. All that really matters is that these kids are able to have normal happy childhoods! You are one of the many hero moms here, who keep fighting and educating, with kindness and humility, and it is so appreciated. I think that humility and doubt have become my constant companions, not in a panicked way, just in a way that hopefully leaves our family open to the possibility of unusual challenges and unusual answers.
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I did not have pandas or OCD as a child or an adult. I did have a lot of treated strep and mono. I still get strep as an adult, did not realize that was fairly unusual. I go In immediately, I know when I have it. I got it a lot when Meg was young. So far I am strep free since she went on abx. Actually feel great, knock on wood. We do have anxiety in the maternal line, and OCD in paternal, but neither parent.
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We are all hoping for the RIGHT answers for you. So glad u are already seeing positive movement.
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Meg's Mom - what information do you have on the U of Tampa program? That's local for us, right now we're doing ERP through the behavior group in Dr. Murphy's office - which is also "local" - but an hour's drive vs. 20 min.
Thanks
It may be the same program - through Dr. Storch's office? I see it is actually SF, not Tampa (sorry, I get all those FL schools mixed up
). Here is the info to contact them to see if you qualify for the skype program (which I believe is free ) http://www.ocfoundation.org/participants.aspx#videophone. I think your son may be a little young for it. Here is the text: Based on our promising findings, the University of South Florida OCD program is conducting a research study to examine what factors predict treatment outcome to cognitive-behavioral therapy that is delivered via videophone. We are recruiting a group of children and adolescents with Obsessive-Compulsive Disorder (OCD). Our past research has found that as many as 80% of kids who received this type of CBT received some benefit. However, we want to know for whom this treatment is most appropriate because videophone-administered CBT may be a way to make treatment more convenient and affordable (less travel costs) and less time-consuming.
Your child must be between the ages of 7-17 and have problematic OCD symptoms to be able to participate in this study. You will have to travel to our facility for the initial evaluation (we cannot cover these costs); however, study treatment and evaluations will be provided at no charge. If he/she is eligible to participate in this study, he/she will either receive 14 90-minute sessions of videophone-CBT (twice a week for the first 4 sessions) and 3 psychiatric evaluations of varying lengths.
If you are interested or have questions, please call Dr. Eric Storch at (727) 767-8230 or email him at estorch@health.usf.edu.
I know 3 parents that had very good experiences through this program.
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Wow, what a great question & great observations. I am so completely not qualified to answer this, that it's sad! I think my best recommendation would be to find someone that is an expert in ERP - not just someone that does it, but someone that has been doing it for 10 years, with hundreds of kids. Having him evaluated there would be most helpful, as tic vs compulsion can sometimes be very confusing. And certainly if it is true tics, a professional should be able to tell you if the therapy would help or be neutral or make it worse.
My daughter did not have tics, so while I listen with great interest here on the forum, I don't have first hand experience. Early on, we thought my daugher had tics - the best example is spitting. At the worst she spat thousands of times a day - and we did have to use Habit Reversal Therapy, it became so ingrained. But her spitting did have a thought behind it, although it was astonishingly fleeting, and ERP was also a key role in the process. It was, in the end, much more of a compulsion & a habit, rather than a tic.
It sounds like your son's has a pretty high level of anxiety behind the tics. That would lead me to think that ERP could be helpful - as an example, if my daughter did not do a specific compulsion, she would then have such anxiety for days afterwards, that she might add in another 20 compulsions to try to "make it up".
There are some great places that could help around the country - what area are you in? Rogers, Duke, Univ of Tampa, etc. Univ of Tampa has a skype program that you might want to try if you don't have a really good program locally. You could go down there once for the evaluation, and then do it at home if they recommend that you move forward.
I think crying non-stop in the doctors office might be a great strategy! I always get mad and then I can't cry. I only cry if you are nice to me, which is very frustrating. Always been an issue for me when stopped by a cop for speeding as well. All my girlfriends weep & get out of the ticket. I am dry eyed until someone says "oh, I am so sorry". Completely useless crying pattern!
Good luck on both fronts! -
Sounds like you did all the right things - and you have gotten all great advice. There are so many parents here that have been successful with ERP. There are times to "go all the way" on things, but they are usually when everyone is in agreement to do so, and after tools are successfully learned. At first, slow and steady is the key - and as you found, letting the child have a lot of say in what will be worked on is so important. They are the ones doing the really hard work, and respecting that lets them have some control in all this. Knowing that they don't have to do it all at once, and that no one is going to be disappointed by some failure - in fact it is expected - really helps them focus and takes some of the pressure off.
I would guess that your therapist just doesn't know him well yet - so I'd give him a few more sessions. But I like to write an email before I get there, giving them some background on what worked & what did not work. Then you have more freedom to discuss in front of your child when you get there, but don't have to say it all. For example, you may want to tell him that your son is more debilitated that he may appear or may want to admit at this time.
I also think setting up a reward program is important, and setting time limits on how long he will work on things that are specifically related to OCD! And I agree with all the parents here - it is SO important that they get enough sleep during all this.
After your next few weeks, if you have specific areas that you want to get suggestions on how to break down a ritual, let us know. Otherwise, you are already doing great, and it will take a while, and it will entail some frustration, but he will emerge stronger & more confident.
I expect that the "list the things that makes you angry" may be a first step towards building a heirarchy - especially if most of the things that make him angry are OCD related. So when he gets angry, you may want to try saying something like "I know this is really hard, and I am proud of you for working on this. I guess this will be a good thing to put on your "makes me mad list". I think that is a really good thing for us both to learn". We found that identifying what is OCD, vs what is the child, helps so much for everyone, especially the child. We tried to point this out without being angry or demeaning about it, and making the list for the therapist was very helpful. I was shocked by how very very long the list was, and how much I was missing. I was pretty tuned in to her OCD, and was still missing a ton of subtle rituals that were eating up her day.
Good luck with all this - we all feel for you and know where you are. It gets better!
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Dear Meg's Mom - What are these y-boc scores? What tests are these? thanks
Y-boc scores are a measurement scale for OCD. Here is a site to read more. This ones for adults. http://www.stlocd.org/handouts/YBOC-Symptom-Checklist.pdf.
A good therapist should be able to take a yboc to measure severity and impairment. 18 point swings are a clear indication of something way beyond wax and wane.
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Meg's Mom is a CBT/ERP "guru." Maybe she can offer some constructive advice?
Um I think that would be desperate mom, with no way to function, actually
, but thanks for the compliment. Lynn, I am a little confused by your post. So yes, ERP can make things a little worse when it starts - a talented therapist can help with this as well - but I am not sure this is an ERP therapist? Maybe just CBT? What is your son's anger caused by primarily - is it a reaction to OCD compulsions? I apologize for not knowing this already. If this is an OCD based issue, then the changes you have made thus far would not seem to be appropriate first steps. If you let me know this, then I can give you a little more advice. There are a LOT of therapist that can do CBT, but do NOT understand OCD, or the ERP therapy that is necessary. We do a small non-profit that helps to train therapists for children on this very topic - because finding a really good therapist can be very challenging! There are more for the teen group, however, than for very young children. I will tell you that we dumped a number of therapists before finding a great one, who was indispensible to us.
Also, I second WorriedDad on asking about the phase of the illness you are in? I think some level of ERP can be done at almost anytime, but what that level is will be strongly dependent upon how well the child has been treated medically. And depending on the issues and the severity, having a really talented ERP therapist is key.
So does he have OCD? And was he already doing pretty well compared to the peak of the illness (pre-treatment)?
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Thank you! I agree. A detailed journal will help-- particularly because I am still very confused about the traditional "waxing and waning" of OCD vs. the “remission and exacerbation” of PANDAS/PITSAND.. Since strep is not always positive nor always the culprit it seems clear that I will have to be very diligent from here on out. I am kicking myself for “coasting” for so many years.
Now I wonder, even if he does have more traditional OCD/ADHD tendencies, what are the chances that in several years we'd identify an autoimmune component to all of these childhood issues. PANDAS seems like the tip of a huge iceberg.
iceberg tip = speaking to the choir on that!
I cannot stand the terms wax & wane. Hate them with a passion. Those 2 little words kept my child in a *&*% place. Here is the deal. If your child is a 15 on the Y-boc score, and sometimes goes down to a 12, and other times is an 17 - that is wax & wane - could be an autoimmune contributor - more confusing. If your child is a 15 on the y-boc score, and then goes to a 28 - then you likely have somthing else going on, and you need to look at PANDAS. It's an exacerbation. If your child is an 8 on the y-boc scale and goes to a 28 - then you definitely have an issue - something like PANDAS - IMHO. There is really no reason that you can't have a tendency to OCD & then get PANDAS on top of it. That is a very bad situation.
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Hey - I know how you feel. We struggled with a diagnosis of OCD for a while, and tons of "no you don't have PANDAS", which I accepted for far too long. But during that time, I remember what a struggle it was for me to decide what I wanted to try, what information to read, etc. It's a maddeningly vague disease sometimes. Our daughter's OCD onsets were pretty severe & debiliting, so after traditional OCD therapy "worked" but it kept returning with a vengence, it became clear that something else was going on. A week of Prednisone was a week of heaven for us (returned afterwards), and put us on the right path. If you want a simple trial that might give you a clue towards PANDAS, try Motrin for a few days. Dose as if for a fever, and see if he is better. Keep a chart of notes. If you don't see a response, that doesn't rule out PANDAS, as some kids don't respond, but if you do see a decent improvement, then you'll know you likely have an immune issue with inflamation. good luck with this - I second the suggestion to go to a good doc with expertise in ruling in or out.
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=He's hyper, silly, non-compliant, will color but won't write, has lack of focus and has to be prompted over and over to do what he's supposed to.
How was he in school prior to PANDAS? Is this a marked change in his behavior? Whew, you have listed a lot of challenges - I think you should be validly concerned. I think you raised a number of clues - silliness certainly makes me wonder re yeast, so you could try that protocol.
For a lot of children, abx, even at low doses helpa a lot with hyper behavior(it does for my daughter). Also, children with mild OCD are often misdiagnosed with ADHD. They may have compusions happening that cause them to be non-compliant. They are often very good at hiding these, and disguising a compulsion with a silly or even dumb response instead. Many kids would rather look goofy than crazy. So they may not tell you that they "have to get up and down in multiples of 12", they just act like they are bouncing off the walls. You mentioned that he will not write - which can be a PANDAS thing - I think they are having challenges getting the right signals from the brain to their hand. You may want to try the test of having him write a few phrases (do one that he copies, and another that you say out loud and he writes it). Then give him a dose of Motrin. 30 minutes later, do the same test with slightly different phrases. What is the difference? Is it easier for him, is he more compliant or cooperative? If nothing changes, that is not diagnostic
, but if you see a huge difference, then you have learned an important clue. Hopefully you have a good PANDAS doc that you can go discuss this with as well. I would second the diet comments - we are not extreme about it, but we are very serious about a protein based breakfast in particular.
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Kids keep pushing my child away, and have no interest in her, because she is slow, or too aggressive. It never seems to make her sad. She just keeps going back. Is anyones child like this?
Hi Wilma - we did have many challenges with friendships during an exacerbation. We are fortunate, and do have a sudden onset situation, so I can't really speak to a child with continuing challenges. I do believe that this illness can make a child seem like they have a variety of diagnosis, even as extreme as bi-polar, autism or aspergers. And that medical treatment for PANDAS can help those children quite dramatically. However, if they have had challenges for a long time, then I also like to give them tools to relearn better ways to interact. Our daughter did a lot of sensory integration and OT therapy along the way.
I wonder if your daughter would benefit from some therapies such as OT - maybe some of the same tools that a child with Aspergers might learn. If she heals completely, you may not need these tools later, but they might help a lot along the way. I would be concerned that she is not only having challenges with other children, but that she also does not seem to be effected by this, and goes back. That can certainly be a strength, but it can also cause her some issues. You do see this with a child with Aspergers sometimes. I don't mean to suggest another diagnosis (and I am just a mom!), I just like to brainstorm on what tools a child may need to learn to interact appropriately in her world.
I found our local autism society to be a very good resource when I was looking for help during exacerbations. (Our daughter is PITAND, now 9 years old).
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So glad to hear of a good day - we are all rooting for her!
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Just when I start to think there isn't a thing wrong with my ds12 he says something about "germs" which makes me realize he is still not 100%
I was making his bed and he stopped me and asked if the sheets had been washed. I told him yes, they had just come from the dryer. Before he let me make the bed, he wanted to know if they had been washed with "detergent, and disinfected." This is perplexing to me, since he doesn't care how dirty his own hands (or underwear!) are, but he is always concerned if his grandmother has "washed her hands."
Do you think this is confirmation that he's not quite right? And good thing I have ivig scheduled? Do any of your "non-PANDAS" kids have this concern for cleanliness?
Hi Phasmid - I would strongly suggest to you that a "normal" child would not ask for sheets to be washed (maybe ever
!!) Especially one that does not even care about his undies.... In any case, when we see this sort of "flair-up" during a few days, we attack it from a few fronts - 2-3 days of Motrin, and ensuring that we are on full abx for 3-5 days. Then we also attack it with ERP, as sometimes it is just an old habit, which they seem to remember. My daughter explains this as "sometimes I am afraid that I will feel afraid again". So she may suddenly have an odd feeling that she needs to do something. But she can beat this up very easily (if not an exacerbation, just an "echo") with ERP. If you have read the book with him "what to do if your brain gets stuck", then just pick a tool from that book. Instead of reassuring about the sheets (or grandma, poor thing!), ask him to let them be "contaminated" and then sleep on them. If he finds that FAR too har, then you might have him sit on a "contaminated sheet" for 2 minutes (or 5, 10, 15) and then be able to change them. If you try to see how serious this concern is, you may learn about more "echo's" of OCD. Personally, we like to beat them all up, as much as possible, so that we can see the real kid. It makes it much easier to see when she is having an issue, if she is not showing echo's of OCD beyond the real treatment of PANDAS.
Hope that makes sense!
I apologize for not knowing this - but is your son nearly 100% from abx? Is he scheduled soon for IVIG? I'm curious if your doctor feels this is needed despite his reaction to abx? If so, is this because he has an underlying immune issue, or is that your docs general feeling about recommending IVIG? Thanks - hope those questions are not too personal - we remain very interested in how IVIG works vs abx, as we are not yet comfortable in our daughter's remission (I wonder if we ever will be!!!)
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Since there are so many rituals for bedtime; I have a suggestion that worked my with dd. Pick the one thing that bothers you the most. Then keep track for a couple days counting how many times he does it a day. If its more than 100 start with 100 pennies, if its close to 50 start with 50 pennies etc. Sit him down with you with the jar and the pennies infront of both of you. Talk to him about that 1 thing.(ask him) Why does he feel he needs to do it? Tell him he can say whatever he wants because you understand how hard it is for him. Then explain to him how hard it is for you and that is why you are going to give him x amount of pennies a day. Every time he has you do that one thing, he has to put a penny in the jar. When he uses up all his pennies, he can not ask that request of you. Any pennies left over are his to keep in another jar. When he gets down by half, you will take him to the store to use the money he saved.
It sounds dumb, but it worked with my 10yr old. We had to use it for hugs, touching, body rubs. I was to the point my hubby could'nt even put his hand on mine. My skin would just curl and my blood pressure would sky rocket. I love my dd and hugs but to be touched everytime I turned around drove me batty.lol
Just a thought that might help.
Jodi
Not dumb at all! That is a GREAT ERP technique. As a suggestion, have your child tell you how many more pennies to remove each day. And I suggest having small rewards (even coupons) that you give the child each day that they make an effort. At this age, daily reinforcement for work that is so very hard for them, can be helpful. Also for things like hugging, we would try to label it, such as "that feels like an OCD hug, not a hug from my sweet girl". We also set up a specific cuddle time twice a day, so that she did not feel that I was rejecting her, just the OCD rituals. Since our daughter's situation was so severe, we found it very important to find ways to reinforce what a great person she is, while still helping her to fight OCD compulsions. OCDMom also has great suggestions posted on this site.
lmkm - learning to parent a child with severe OCD will make ANYONE feel like the world's worst parent. It is completely illogical and against all your instincts. I really greived about this, as I felt like a pretty good parent before OCD came into our lives. Whether OCD is caused by PANDAS or genetics - there are techniques that can help you and your child make more sense of the world you suddenly find yourself living in. Our little girl was very severe - at the worst, compulsions filled nearly 100% of her waking hours. She had no joy left in her life, and as her parents, we were nearly destroyed. We were also misdiagnosed, and took far too long to find a PANDAS diagnosis.
ERP techniques did not give us a cure, but they did give us some relief so that we could function. We had to find a way to function, as she had lost almost everything in the space of 3 months. It was very hard work at times, and I know some children really struggle to use these tools when in an exacerbation. All children with PANDAS should be treated medically (abx, ivig, motrin, etc - as appropriate) - if you get a quick turnaround in few days and it never comes back, then you don't need professional help. If the remaining OCD is mild, then you can decide as a family if you wish to find professional help to learn the tools of OCD, or not. But if your child and family are suffering on a daily basis as we were, then ERP is as necessary to this illness as the tools of abx, prednisone, ivig.
I would strongly suggest that you begin by ordering a few books - one for yourself, and one for you to do with your child. Understanding OCD is key to fighting it. I think of it like a person with a stroke. They may have lost some abilities, but they can learn to use different parts of their brain to do those same functions. The therapy is tough and slow, but the brain is astonishingly capable of learning to function if you train it. Children have especially elastic brains - so they can rewire if they need to.
Here are the book recos:
To do with your child: What to do if your brain gets stuck: http://www.amazon.com/What-When-Brain-Stuck-What-/dp/1591478057/ref=sr_1_1?ie=UTF8&qid=1294313992&sr=8-1
And to read yourself to better understand how OCD works and how to parent a child who even temporarily has it: Aureen Wagner's book "What to do when your child has OCD": http://www.amazon.com/What-when-Child-Obsessive-Compulsive-Disorder/dp/0967734711/ref=sr_1_1?s=books&ie=UTF8&qid=1294314066&sr=1-1
For parents, another choice is Tamar Chansky's book: "Freeing your child from OCD": http://www.amazon.com/Freeing-Your-Child-Obsessive-Compulsive-Disorder/dp/B001CYU1M0/ref=sr_1_8?ie=UTF8&s=books&qid=1294314121&sr=1-8
I am so sorry that you and the other parents posting here are going through this. My heart goes out to you. If you search the prior posts, and don't find a technique or tool that you think willl work for your child, please let me know what specific compulsion you think would be the first one to work on, and I'd be happy to post a few "mom ideas" for how to break that compulsion down into manageable baby steps. Finding the smallest little think to work on was key to our ability to do ERP. It is often far to frightening to attack an entire ritual. So for example, you might fight back on the covers ritual, by doing them wrong for just 10 seconds on the first night, 2 or 3 times. Then you would "fix" the covers. Then you would increase the time each night. After some time, you might leave one part of the covers wrong for the night, but do the rest of the covers "right". Having rewards for this (reasonable ones) is also a key for many kids. Frankly, cheering & really respecting & loving the work they do accomplish is also key.
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If u went off abx and rage started, I would go back on the antibiotic.
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At the peak of this issue, we used neosporin 2x a day. Especially at night, this seemed to help heal during the non-washing hours. We were able to use ERP therapy to help this symptom, so let us know if you need ideas on how to break this compulsion into tiny tiny steps. It was tough but helpful.
Azithromyacin has been our miracle. We have to tell her to wash now, just like any kid.
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Since Azith worked, and you are not currently on it (correct?), I would try that for dd. Do you think your local doc will prescribe for your dd until Feb 10th, knowing he is off the hook at that point?
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Are u near nc? Is duke an option?
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Thinking of you both this morning. Hope they are helping.
). Here is the info to contact them to see if you qualify for the skype program (which I believe is free 
) 
Good luck on both fronts!
, but thanks for the compliment. 
Went to sleep on his OWN for first time...
in PANS / PANDAS (Lyme included)
Posted
So cool! We found that we needed some ERP to get rid of the last vestiges of OCD (germ stuff and more), but we had it for so long untreated, that she had a lot of "habits". If your son is dropping things like sleeping with you so quickly, maybe you will not need much ERP. If you do, it may be mild enough that you can do it at home (use a book such as "what to do when your brain gets stuck").
Congrats!