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Hi-

Waiting for our Cam results- we work w/a DAN! who gave us Omnicef, tried for 7 days, did not see 'enough' asked for Azith., now on day 9 of Azith.

Beginning Azith, pretty amazing stuff- then a virus came through here last couple of days, now have more breakthrough rages (can't control body, spitting, name calling) Her Kindergarten class is a horrific place of illnesses- and my dd5 has not been 'sick' all year...(I think it's all been going to her brain?)

Looking back on our history, she was exposed to an active strep infection as an infant, then had abnormal head growth (inflammation) it was brushed off, then infant unexplained fevers, hospital tests, could not find cause of fevers... exposed again to strep at 2 1/2, treated w/typical antbx. treatment- she stopped talking and cried straight for a week w/that strep. Never had autism dx- but sensory, social phobia. She has gut issues. No-one has been able to help us- which is why I finally went to DAN! Dr. 3 months ago.

I think she has been dealing with this for a long time. I swear I have read every post on this board, and it is US. The OCD, seperation anxiety, off and on, rages can't control...

I am having a really hard time waiting here...if I get the test back positive, I can then go to our regular insurance Docs and fight for help--paying a fortune through DAN! but he GETS it.

I am feeling scared and rather spun out. Perhaps I should stop reading EVERYTHING, but I can't seem to help myself.

Thanks for letting me share...

Sarah &

Samantha 5

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I think I really love you guys here. I have been so ALONE with this forever, it feels like (preaching to the choir here, right)

We work w/ a DAN who treats PANDAS, does IVIG. We've been working together for 3ish months now, just FINALLY put together PANDAS. I am going to try and work with him first w/our PANDAS, because we have established a relationship-

I was going to wait for my CAM test to come back (about 7 days more, dying in the meanwhile, ha ha) to schedule my next Skype appt. with him (he is So. CA. I am Northern CA, not bay area)

Maybe our next step will be steriod.

I'm happy to say dd5 eats well- quality proteins, good nutrition- we've been GFCFSF for 1 1/2 years, probiotics 2x a day because of the antibx., and diflucan 1x a day...

Yes, I'm loving Motrin (dye free, of course) and I see it helps some, but as you all know, it's not the magic to stop it all...

I read on here (way back) someone tried the 'Edgar! stop what you are doing!' while in a rage episode, to distract them, make Edgar the bad guy, tell him to stop...it actually kind of worked, we put 'Edgar' in the trash can, but she said 'he is coming back out'

Wondering if I am giving her multiple personality disorder now, lol.

Not really lol here, I am trying hard to hold it together (and fighting/having this 'virus' in our house)

Sarah & Samantha 5

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Hi Sarah,

 

I'm sorry a virus came through. I know you are anxious. Give it some time. It may exacerbate a bit and then settle down.

 

Can you explain more about not being able to control her body? With my 5yo who just developed a tic for the first time he spits at his sister and says really mean things when they fight over a toy etc. Is that what you are seeing in your dd? We just started zith on him as well and the tic is better. I have been doing motrin every 6 hours since yesterday. I think it has helped to calm my son, but my daughter's tic/compulsion is still the same.

 

Thanks to you, I revisited the idea of the compounding pharmacy and found a local one who made the zith for my son. The pharmacist also said that he can compound ibuprofen with a doctor's rx. I am going to do that this week. The children's dye free motrin still has preservatives like polysorbate 80 in it. I agree with maybe trying ibuprofen for a few days with that virus.

 

How about trying that enhansa again for her? I have been reading alot about it and it is very anti-inflammatory.

 

 

Keep us posted.

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By the way, she just woke up, cannot get out of bed by herself, she requires me, will just yell or vocal tic eh, eh, eh, until I come and work with her to get out of bed, and is already angry. This is a common thing. Our progress was she could get out of bed, open her door, and sit at the end of the hallway, knocking, for me to come.

I think my daughter is very, very sick.

Just...Wow.

Thank you again, all, so much, for being here.

Sarah

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Sarah, I think we each replied around the same time. I see you are doing the motrin. Consider compounding it.

 

Also, did someone tell you that the Cunningham results will have an effect on insurance coverage? We haven't done it because it is so expensive and I already know we have pitands and it is research only. I'm curious about it being a "diagnosis".

 

Hang in there. I'm a mess too. I just couldn't believe I was staring at my second child beginning to tic the other day. I am so ensconsed in PTSD that it just keeps beating me down because there is no "post".

 

You have a very good doctor. Hang in there.

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Mom love, thank you---

I have 3 kids, ds13 from 1st marriage, remarried later in life, had 2 girls, dd5 Pandas, dd3.

So yes, dd5 really takes it out on her little sister/sibling, too. 'She had this, and I don't!' Or, she got there first! She got into the car first! Or, she will terrorize her little sister, scaring, hands like claws, grimace at her...

Her rages- you can literally 'see' she is not in control- it starts with hitting, she can't stop, name calling-of course, we have to step in and displine, try to remove her- then she can't control her body- won't be touched- kicking, yelling, spitting, saying 'you're rude!' 'I don't like you!' or something over and over again- she will bang, throw things- just..gone.

When if finally ends, it ends with her buried under blankets, crying, so filled with remorse and shame, I have to crawl across to her, try and touch her (sometimes a tight bear hug until her thrashing subsides, and she collapes into me) I hold her, stroke her lightly, say over and over, 'it's okay, it's okay'

Bloody heartbreaking.

But when in the rage, Good God, we are pushed into yelling at her at times...it's just so horrific.

So round and round the guilt, etc.

And then of course, you have the spells where she is articulate, sweet, funny, goes off on her own...gives over things to little sister, if little sister cries, she makes her laugh...

Snap! Back and forth.

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So yes, dd5 really takes it out on her little sister/sibling, too. 'She had this, and I don't!' Or, she got there first! She got into the car first! Or, she will terrorize her little sister, scaring, hands like claws, grimace at her...

Her rages- you can literally 'see' she is not in control- it starts with hitting, she can't stop, name calling-of course, we have to step in and displine, try to remove her- then she can't control her body- won't be touched- kicking, yelling, spitting, saying 'you're rude!' 'I don't like you!' or something over and over again- she will bang, throw things- just..gone.

When if finally ends, it ends with her buried under blankets, crying, so filled with remorse and shame, I have to crawl across to her, try and touch her (sometimes a tight bear hug until her thrashing subsides, and she collapes into me) I hold her, stroke her lightly, say over and over, 'it's okay, it's okay'

Bloody heartbreaking.

But when in the rage, Good God, we are pushed into yelling at her at times...it's just so horrific.

So round and round the guilt, etc.

And then of course, you have the spells where she is articulate, sweet, funny, goes off on her own...gives over things to little sister, if little sister cries, she makes her laugh...

Snap! Back and forth.

 

S&S -- have you heard of/read the book The Explosive Child? i've found it very helpful when my son has had an outburst -- i don't so much call it "rage" for him b/c it doesn't often have an angry component -- upset and out of control -- it's the same mechansim though. that book practically jumped off the shelf at me in the library one day after a terrible day leaving my mom's with him opening the car door as we were driving down the street -- me pulling over, taking him out and holding him in a body wrap while a postman looked on wondering whether to call the police.

 

you could try to google to give you an idea -- i don't so much recommend it as a way to help her get a hold of herself kind of like the book suggests. i recommend it as a way to help you better interact with her while she is in a rage. it gives you something to do rather than just react. i felt it gave me a way to be involved with him in a helpful way instead of being dragged into the rage with him.

 

basically, you begin by repeating what she is saying. she "she had this and i don't", you "you don't?" then stop - don't say anything until she does and then repeat again what she has said. she "she got into the car first." you "she did?" then throw in a question when to help reach a solution. "why is that a problem?" if something like, "because i deserve to get it first. you "you deserve it." try to be emotionless at first. now, i usually do it as a question and then he calms down as he answers yes in kind of an indignant way. she"you're rude", you "i'm rude?" i've found it helps to keep everything from escalating.

 

for my son, sometimes it's been enough just for him to have me repeat it and i think he kind of thinks i'm agreeing with him and will stop. other times, it's thrown it back to him that what he is saying doesn't make sense and then he reevaluates. there are also times that it doesn't really work.

 

i just found it to help so i had something to do that wasn't just making things worse. my mom's friend started doing it with her difficult husband and found it helpful.

 

if you feel that something is really inappropriate, you can bring it up to discuss LATER. at the time of the rage, she's not going to get anything in the form of a lesson anyway.

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I read on here (way back) someone tried the 'Edgar! stop what you are doing!' while in a rage episode, to distract them, make Edgar the bad guy, tell him to stop...it actually kind of worked, we put 'Edgar' in the trash can, but she said 'he is coming back out'

Wondering if I am giving her multiple personality disorder now, lol.

Not really lol here, I am trying hard to hold it together (and fighting/having this 'virus' in our house)

Sarah & Samantha 5

That was LLM. She was talking about some basic Cognitive Behavorial Therapy (CBT) - it can be very helpful to have in your tool belt, although it is not a cure. But it won't give her multiple personalities :). The part of CBT therapy that is specific to OCD is called ERP (Exposure & Ritual Prevention) - again, not a cure for a PANDAS child, but very very helpful to us at many stages of the disease.

 

To feel a lot more comfortable with these tools, and with how OCD manifests, I'd suggest that you read Tamar Chansky's book "Freeing your Child from Obsessive Compulsive Disorder" and then do the workbook "What to do when your brain gets stuck" with your child (you can read it first, and then work with her over several nights). Parenting a child with OCD can be counter-intuitive, but once you are comfortable with the tools, they become second nature.

 

So sorry for what you are all going through. It's an awful disease.

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I'm the "Edgar" mom. We actually named a lot of emotions - Edgar the Angry, Warren the Worrier, Calvin the Calm, Perry the Positive Thinker, Screaming Sally, but my son saved the best for last - when we finally explained about OCD, he named OCD "Stupid Guy" because he made DS do such stupid stuff that my son knew didn't make any sense but he had to them anyway.

 

You can get some coping ideas from Freeing Your Child From Anxiety and Freeing Your Child From OCD. And the Explosive Child does help you to detach in a rage, which does save you from the "raging back" at them (trust me - most of us have been there. You're human. You have buttons that get pushed. It happens).

 

The good news is that now that my son has been treated agressively for Pandas (pex and IVIG) and now for lyme (combo abx), it's all becoming "past tense". And he has no memory of the rages and hardly any memory of some of his OCD compulsions. Ocassionally, he'll have a super quick temper during the middle of the month (lyme life cycle?) but we all know the drill know and we're all able to catch it, use tools and reset much more quickly, without doing damage to one another.

 

It feels like a nightmare right now and you probably don't know how you're getting through one more day. It does get better, partly because you'll find medical treatment and partly because right now, the more tools you all acquire, the more effective "whole body" treatment will be. IMO, your best chance of healing comes from doing both medical treatments and things like Cognitive Behavior therapy, Exposure/Response Prevention (ERP) therapy, and family therapy to protect the siblings and the marriage. This disease effects the whole family and you have to treat the whole family. But it does get better.

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Sarah, Ithere too with my buttons being pushed with really extreme behavior and acting out. I feel like my fuse is so short and I am immediately thrown into fight or flight mode. I have to force myself to count to 10 and breathe steadily. It doesn't always work.

 

 

I am learning from your post here too Sarah so I hope

you don't mind my asking a few questions within your post.

 

LLM, I was recently thinking that family therapy could really help us. This is really taking its toll on all of us, and my marriage. But I have a stupid question. How do I begin to implement all of these things? I mean, how do I find a CBT and a family counselor? I asked my doctor about CBT and I don't think she had ever heard of it. AND, how did you go about your lyme discovery? Is it the lyme treatment that finally made a difference?

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LLM, I was recently thinking that family therapy could really help us. This is really taking its toll on all of us, and my marriage. But I have a stupid question. How do I begin to implement all of these things? I mean, how do I find a CBT and a family counselor? I asked my doctor about CBT and I don't think she had ever heard of it. AND, how did you go about your lyme discovery? Is it the lyme treatment that finally made a difference?

Stupid question? Hardly. I looked for a counselor. Dropped $80/visit on one who never met with my son and said "I can't talk your son well. I can only meet with you and your husband and give you tools for dealing with his anxiety." Two visits later, we dropped her and spent the money on a few books (How to Free Your Child From Anxiety, How to Free Your Child from OCD, Up and Down the Worry Hill, What to Do When Your Brain gets Stuck, Talking Back to OCD). Unfortunately, there are very few books on how to work with young children, which is odd, because young kids are sooo much easier. They seem to accept the tools and intuitvely grasp ideas much faster than an older kid who's trying to use logic and is more independent.

 

So after I read a few books, I wrote one of my own for my son and made him the hero. I named his emotions and gave him the power to battle and defeat (be the boss of) these emotions using the tools described in these books (adapted for a child's world and in terms he could relate to). if you're not a writer, you can make up a bed time story in a similar manner, or sit at the table and draw as you describe tools and feelings (or put on a play using barbies or action figures or stuffed animals). I had two goals - first was just to give my son names for what was happening to him and to let him know he was understood. That alone was the single biggest key to deflating the rages - they ended faster each time we de-briefed afterward and we were able to talk and understand each other. My second goal was to give him tools he could then use by himself - teaching him to tense up one body part at a time and then relax it, visualizing "Edgar the Angry" or whomever being shot out of his body as he stretched out his arms or his fingers. Teaching him how to use the fear thermometer or one of the strategies in "What to Do When Your Brain Gets Stuck." I became the (unqualified, learning on the fly out of desparation) therapist.

 

So calming the out of control child was step one. That alone helped the "orphaned" sibling (my daughter) - the one who suffered all the lightening strikes of anger from her brother, the one who needed her own hugs from her mom but couldn't get them because mom was coaxing her brother out from under the coffee table. It also helped my husband because it took the stress down several levels and in overhearing me talk with my son, a few coping tools rubbed off on him too. So over time, we started to share a vocabulary and have a few tools that worked. We were all still exhausted, but at least we now had ladels to bail out our sinking boat instead of eye droppers.

 

Then a miracle occured. Despearately looking for therapists who did ERP with young kids, I by accident learned that towns in Connecticut have something called Youth Service Bureaus. Each town bureau may offer different services, but my town offered family counseling with LMFTs - for FREE. Finally a reason to celebrate my property taxes! It was actually our counselor, who got on the floor and did play therapy with my kids, who suggested Pandas for the first time. It still took us 10 months to find a helpful doctor, but at least we had a name for what had happened. So check if your town has something similar. If not, try this link http://ocfoundation.org/ and go to the 3rd tab in - Find Help. Under Find a Therapist, look for one that's a BTTI graduate - that means they went to the Behavior Therapy Training Institute run by the OC Foundation specifically to learn ERP. Then call each therapist and ask if they work with young kids. (I'll let others chime in on other questions to ask). I still found myself doing the bulk of the therapy - every night at bedtime, throughout the day, every day. Teaching the teachers in shcool how to handle different situations. But now I had a "girlfriend" I could vent to every week and so did my husband. And the therapist made sure to remind me, every so nicely, that once in awhile, I needed to find time to take a bath by myself or be a wife, not just super-mom (as in super stressed mom, super wound-too-tight mom, super researcher with the whole weight of the world on her shoulders mom). She wasn't entirely successful on this last part - nearly impossible to feel romantic or even feel like you can indulge in a bath in the middle of all this. But at least my husband felt like he had an ally who could help him express his own feelings of loss and frustration. It was hard on him too and he didn't always know how to find the words.

 

As for how we found lyme - well, it was all that was left. We did plasmapheresis 11 months after my son's first episode. It got rid of his tics and really helped with a lot of the other stuff. But the brain fog remained and OCD came back after a few months. Could have been exposure from his best friend who had chronic strep, could've been exposure to others who were sick. Could've been lyme. All we knew was that after another long winter, we felt IVIG was our next step (prednisone worked wonders but it wasn't something we could do repeatedly year after year). We did IVIG last June and when he got worse and not better, we were stumped. I was completely spent - financially, emotionally. My friends were telling me to go on an anti-depressant. I couldn't find my way out of a paper bag. But the forum had started talking a lot about lyme and some parents who had been on similar journeys were finding lyme. I live in the bullseye of lymeland. I've pulled ticks off the kids. So we tested. And we saw an LLMD. And since nothing else had gotten us to 100%, we tried a lyme protocol of combo antibiotics. And that seems to have finally done the trick. (tho DS did have his first two, severe Pandas episodes within the same weeks of confirmed strep throat infections, so it was Pandas too- that's a whole other topic).

 

So way more info than you wanted to know. But just like ERP is Meg's Mom's baileywick, talking about CBT gets my fingers flying. Just FYI - CBT is "thought therapy" - the thing you do days before a job interview. You talk to yourself. Tell yourself not to worry, imagine the boss in his underwear, remind yourself of all the reasons you're the ideal candidate - it's a way of changing your mindset to coach yourself to success and be the boss of your feelings. ERP is a sub-set of CBT. It's the steps and tools you use to conquer OCD. You can use CBT for anxiety, rages, etc. ERP is better for OCD, sensory, disabling fears. Because we had severe anxiety and rages, that's where I developed most of my tools. Meg's Mom is my coach for all things ERP.

Edited by LLM
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