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Tired of the doubters


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In the last six weeks since everything went to **** in a handbasket, I've had friends tell me that they are worried about me and my mental health, that I'm taking on too much, that it's all just normal kid stuff, that dd will 'grow out of it.'

 

Over the last year I've been working tirelessly to resolve dd5's sensory & regulation issues (she's had 'em since birth) and have been quite successful. I suppose sharing the news of PANDAS and/or other autoimmune disorder or whatever is happening right now (still trying to figure it all out) is just making me seem like an over-involved, over-worried mother, but frankly -- when OCD and anxiety skyrocket and a tic appears out of nowhere and a child starts raging over nothing, can't leave my side even in our own home, and stares out into space with no volition (when normally a bright eyed child) one has to worry, right?

 

What I *want* to tell them is: This is not a case of bad, over-involved or over-reactive parenting folks. I've got hundreds of pages of daily notes documenting symptoms, and my husband is witness to the worst that happens at night and on the weekends, so I'm not making it up. I wouldn't wish any of this on anyone...and there are much better things I'd rather be doing with my time.

 

What I *want* to tell them is: Even though doctors haven't helped much yet, the three that we've seen in the last month have all taken me seriously, listened and responded as best they could to my concerns and helped us move further down the road.

 

What I *want* to tell them is: This is a real problem with a different roadmap for each kid and I'm the cartographer.

 

Yes, I'm mad and I know I will get over it at some point, but it's this emotion that is pushing us further toward answers every day. I try not to be mad at them b/c I suppose they think they're being supportive. But just because they don't see the worst doesn't mean it's not there.

 

I needed to put this out somewhere so I could stop thinking about it. Thanks.

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You're not alone!! I feel the same way every day that we miss out on all of the "normal" activities that the people around us do. Lots of people think I am crazy--I feel that way on a regular basis. But I know my son and I know something is not right. I am still searching for the answers and I get tired of people telling me that I am too involved. Keep going--don't give up!!

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Wow Malke...you still have friends. :) It really is something that you cannot explain verbally to those not experiencing it. There's something that happens inside to us parents that really is indescribable. It's hard to explain the simultaneous feelings of hope, guilt, doubt, despair, anger, love, loss, <fill-in-the-blank>.

 

We are in a rut of wondering what "normal" would even look like. I get SO MAD that my son went untreated for so long. And that when I FINALLY FOUND PANDAS ON MY OWN (no thanks to the doctors), that it was brushed aside as not being a possibility (really no thanks to the doctors!). And even with the diagnosis and treatment, the emotions are all still there. I don't know that I will ever get over it. Even once we heal our son(7), which WE WILL HEAL HIM. I'm changed.

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I've always offered those who have doubted 72 hours with my son, abx free, with no Motrin and no "insider tips" on how to appease his compulsions. I've only had one taker - my mother (and it was by default, both my husband and I had to travel last minute for work - and he wasn't abx free, but close enough). She called at the end of the first day, apologizing to me for not understanding what I was going through, and could I please help, because my son has been naked, screaming uncontrollably and peeing all over her house for a couple of hours now - how can she make it stop??

 

We try to let our son lead as "normal" of a life as possible, still going to play-dates, birthday parties etc...but what no one sees is how these things are more stragetically planned that the D-Day invasion!! We choose our invitations/plans carefully, not confirming until the last possible moment if possible, prepare him for days before hand, allow for several hours to get ready/out the door, and often resort to a preventive dose of Motrin just for good measure. Not to mention, we ignore many of his CBT techniques when we're out, because who really wants to experience that level of meltdown because he didn't get 3 chicken nuggets? So we allow him to give in to the compulsions, as long as they're not violent or disruptive, and since he's calm and happy, no one seems to be the wiser. And for all of that stress and planning, he ends up having a great time that he'll talk about for days, but everyone else looks at us like we're total loons and our kid has no more problems than the average hyperactive little boy.

 

ALL of my inlaws have been visiting from out of state - they pray for him, but obviously don't understand our issues since they don't see it firsthand. This sounds terrible, but there was a small part (a very very small part) of me that was glad when he caught strep just before their visit started - and showed them first hand the wonderful world of PANDAS - so now they don't think we're overindulgent parents with a difficult child.

 

We've all been there - more times than we'd like to admit!!

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Totally get it Malke, totally get it!

I am really just down to internet friends (lol), so that one is not an issue, but my IL's who live in the same town are!

It's taken some years and massive boundry carving. They used to get angry at me when we'd leave a family event after 4 long hours...and my dd was a ticking time bomb. Ect. Ect. Sometimes, we just can't show up. I can't take on their stuff. It's hard!

Last week I called my MIL after our tourette/rage explosion in the public parking lot, when my dd could have been killed.

My MIL: 'You must be PMS'ing.'

So I will tell you what my husband has to tell me:

Some people will NEVER get it or understand, or live in denial, for whatever reasons. They are not intelligent enough, opened minded enough, whatever.

Somehow we have to let that go, for ourselves, and accept that- I have banged my head against the wall so many times about MIL- and it does ME the most damage.

xxoo Sarah

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Malke,

 

I have been in this PANDAS(now PANDAS & Lyme) world for the last 6 years. Funny thing is that I have been my own biggest doubter. What you know, that I did not know 6 years ago is that PANDAS exsists and you know your child suffers from it. I spent years second-guessing myself, listening to the doubters because I was one myself. Dr.s told me it was a discipline problem, Oedipus complex, explosive child, autism. You name it; he was diagnosed with it, when the whole time my heart kept telling me it was something biological. Overnight, my son left me and no one could tell me how to get him back. I have said this before, but how ridiculous is it that I bought into what they were saying and went to parenting classes for my 5th child! I have learned a lot on this journey and the most important is to listen to your heart. And just when I was starting to trust myself, I had to face things like denials from insurance companies and pediatricians dropping my son from their practice because they “doubted” it was PANDAS or Lyme.

 

Plug your ears when the doubters start to talk. Just never doubt yourself. Your child is counting on you. Everyday I have to remind myself what my son’s LLMD told me when the doubts started creeping back in. He said “don’t just listen to your heart, but believe it with conviction. That is when your son will get well.”

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I wear my emotions on my sleeve, so it is impossible for me to hide my anxiety/depression about PANDAS and just chat about normal stuff with these ladies. THey always ask me what's wrong, how's it going? I hate it.

 

I've been like this too the last six weeks or so. I've felt alternately focused and clear and then completely grieving over the 'overnight' change in my daughter and then madder than I've ever been, which gets me focused again, and around it goes.

 

And, I understand how hard it is to make nice conversation when my head is so full of my daughter and our next steps and plans, etc.

 

((Hugs))

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Plug your ears when the doubters start to talk. Just never doubt yourself. Your child is counting on you. Everyday I have to remind myself what my son’s LLMD told me when the doubts started creeping back in. He said “don’t just listen to your heart, but believe it with conviction. That is when your son will get well.”

 

This is fabulous. Thanks for sharing this part of your story. In my early mommy years I kept wondering what it was that I was doing wrong with my dd, why she couldn't hang out at parties without loosing it, or had to have a completely predictable schedule in her day to be semi-functional, or never could sleep on her own, or would never leave my side. I had tons of doubts about my parenting (first time mom). As I started healing her sensory issues over the last year, I became a lot more sure of myself, trusting myself more, and by the time the PANDAS (or whatever it is) came along I hit the ground running, knowing for sure that something was really wrong and I just had to find out what it was and what needed to be done.

 

No one around me has ever had to deal with stuff like this with their kids. I can be pretty intense anyhow, so this uptick in my intensity is why I think they're worried. I need their support, so it's been devastating to have trusted friends think something wrong with me or my judgement. I've struggled with depression most of my adult life, but since having my daughter I've climbed out of it, first for her sake and then for my own. So, I know what I feel like and how I act when I am 'not right' in my head. This is not one of those times.

 

Thanks for sharing what your LLMD said to you -- it's strengthened my resolve to keep moving forward. Also, I've felt compelled to try to convince the 'doubters' as best I can -- I don't think I'll use my energy that way anymore.

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I've always offered those who have doubted 72 hours with my son, abx free, with no Motrin and no "insider tips" on how to appease his compulsions. I've only had one taker - my mother (and it was by default, both my husband and I had to travel last minute for work - and he wasn't abx free, but close enough). She called at the end of the first day, apologizing to me for not understanding what I was going through, and could I please help, because my son has been naked, screaming uncontrollably and peeing all over her house for a couple of hours now - how can she make it stop??

 

We try to let our son lead as "normal" of a life as possible, still going to play-dates, birthday parties etc...but what no one sees is how these things are more stragetically planned that the D-Day invasion!! We choose our invitations/plans carefully, not confirming until the last possible moment if possible, prepare him for days before hand, allow for several hours to get ready/out the door, and often resort to a preventive dose of Motrin just for good measure. Not to mention, we ignore many of his CBT techniques when we're out, because who really wants to experience that level of meltdown because he didn't get 3 chicken nuggets? So we allow him to give in to the compulsions, as long as they're not violent or disruptive, and since he's calm and happy, no one seems to be the wiser. And for all of that stress and planning, he ends up having a great time that he'll talk about for days, but everyone else looks at us like we're total loons and our kid has no more problems than the average hyperactive little boy.

 

ALL of my inlaws have been visiting from out of state - they pray for him, but obviously don't understand our issues since they don't see it firsthand. This sounds terrible, but there was a small part (a very very small part) of me that was glad when he caught strep just before their visit started - and showed them first hand the wonderful world of PANDAS - so now they don't think we're overindulgent parents with a difficult child.

 

We've all been there - more times than we'd like to admit!!

OMG, yes, the extensive, careful planning, with 2 or 3 back up plans! This is my life....

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Funny thing is that I have been my own biggest doubter. I spent years second-guessing myself, listening to the doubters because I was one myself. Dr.s told me it was a discipline problem, Oedipus complex, explosive child, autism. You name it; he was diagnosed with it, when the whole time my heart kept telling me it was something biological. Overnight, my son left me and no one could tell me how to get him back. I have said this before, but how ridiculous is it that I bought into what they were saying and went to parenting classes for my 5th child! I have learned a lot on this journey and the most important is to listen to your heart. And just when I was starting to trust myself, I had to face things like denials from insurance companies and pediatricians dropping my son from their practice because they “doubted” it was PANDAS or Lyme.

 

I'm glad to hear you say this - we were blessed with a avery astute pediatrician that recognized it immediately once we came in for help (we were convinced it was just the "terrible twos" for months!!) but my son gets better, I find myself forgetting just how awful it really was, and wondering if it was all just in my head, I didn't have the patience, he was a spoiled child, etc... Maybe he wants 3 donuts just because he wants more of sweet snacks we try to limit - it's not OCD at all, just a spoiled little punk and I'm a bad parent.

 

Then, every time these doubts seem to be at their worst, he gets exposed - this last time around, he started ramping up some strange symptoms, so I dragged him to the Dr to get swabbed - even told the Dr I doubt it's positive, he's just being 3. BAM - positve culture. It's like God having to remind me that we ARE doing the right thing for our child, to stop beating myself up, he's sick, and keep on doing what we're doing to get him better.

 

We too took a parenting class for our PANDAS child (he was our second) - but this one was recommended by Dr. Murphy's office. The class we took was designed for parents of kids with special needs and behavior problems - but it really seemed to cater towards autism. The instructors were all PhD students (who have no kids my husband always liked to point out B) ) that had never dealt with a toddler with OCD - our biggest symptom. The 2 classes they spent on the importance of creating structure, routine and ritual out of every day activities was a living nightmare for us - that was part of our problem - our lives had become SOOOOOO ritualized it was out of control. I can see how ritual and routine would make an autistic child comfortable to have some control over knowing what's coming next - but for a kid with OCD that takes ritual to the extreme??? Not so helpful.

 

And speaking of doubters, none of the instructors were familiar with PANDAS, and one actually told us that it's "impossible" for things like OCD to come and go, it's a chemical reaction in the brain that can't just be turned "off" - once we accept our son's OCD we will be able to help him better. Really??? You think??? Thank you so much for this insightful information!!! I'll completely disregard what my pediatrician (with 30 yrs experience) and Dr. Murphy - one of the leading experts in the field - have to say because you - a 22 year old college student with no real life experience actually working with a child has it all figured out!!!! THANK YOU!!!

 

..sorry - this post wasn't supposed to go there...that memory just got the best of me. I'm better now. Really.

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We too took a parenting class for our PANDAS child (he was our second) - but this one was recommended by Dr. Murphy's office. The class we took was designed for parents of kids with special needs and behavior problems - but it really seemed to cater towards autism. The instructors were all PhD students (who have no kids my husband always liked to point out B) ) that had never dealt with a toddler with OCD - our biggest symptom. The 2 classes they spent on the importance of creating structure, routine and ritual out of every day activities was a living nightmare for us - that was part of our problem - our lives had become SOOOOOO ritualized it was out of control. I can see how ritual and routine would make an autistic child comfortable to have some control over knowing what's coming next - but for a kid with OCD that takes ritual to the extreme??? Not so helpful.

 

And speaking of doubters, none of the instructors were familiar with PANDAS, and one actually told us that it's "impossible" for things like OCD to come and go, it's a chemical reaction in the brain that can't just be turned "off" - once we accept our son's OCD we will be able to help him better. Really??? You think??? Thank you so much for this insightful information!!! I'll completely disregard what my pediatrician (with 30 yrs experience) and Dr. Murphy - one of the leading experts in the field - have to say because you - a 22 year old college student with no real life experience actually working with a child has it all figured out!!!! THANK YOU!!!

Personally, I think this is a problem in autism as well. Instead of trying to improve/promote development and teaching the child to adapt to the ever-changing, dynamic world that we live in, they build a structured environmental cage for them to live in. I call it teaching them to be autistic. Sigh...

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We too took a parenting class for our PANDAS child (he was our second) - but this one was recommended by Dr. Murphy's office. The class we took was designed for parents of kids with special needs and behavior problems - but it really seemed to cater towards autism. The instructors were all PhD students (who have no kids my husband always liked to point out B) ) that had never dealt with a toddler with OCD - our biggest symptom. The 2 classes they spent on the importance of creating structure, routine and ritual out of every day activities was a living nightmare for us - that was part of our problem - our lives had become SOOOOOO ritualized it was out of control. I can see how ritual and routine would make an autistic child comfortable to have some control over knowing what's coming next - but for a kid with OCD that takes ritual to the extreme??? Not so helpful.

 

It's funny, but I had a realization about our structured daily schedule for dd5 just last week. For the last 5 1/2 years everything had to be ultra predictable due to her intense regulation issues. During the month or two before we realized it was PANDAS we stuck to our routines like glue, but it just made everything worse. Luckily, we decided to just go with the flow and it eased things a little. Recently I realized that now I'm in the business of 'unregulating' my dd, lol! If I switch up her routine even just a little, or do something unexpected (like add humour, which I could never do before) things go much easier and she is distracted from from her 'normal' bedtime routines. Of course, it doesn't work in the middle of the night, but keeping us a little *out* of routine during the day seems to be a good strategy. I'm in the business of flexibility now after so many years of structure.

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