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Healing Finally!


laure
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I hesitate to post this...I know how badly some folks are struggling just to get through the day. We have been there. One year ago today I spent almost all days crying at least some of the time. My daughter spent all days crying at least a half a dozen times a day. From PANDAS diagnosis in July '10 to Lyme and coinfections in November, we jumped from doc to more reputable/expensive doc, with some ups and more downs, until we dead-ended at an IVIG/PEX conclusion from two respected docs. Enter a few smart ladies from this forum who convinced me to fly out West to check out an ART doc there before going the Ivig/PEX route. In June '11 my 10 year old was leaving all of her belongings in the garage each day after school, which she was usually late to, and sometimes couldn't attend at all, showering 8 times a day or more, crying almost all of the time, couldn't hug or kiss us, touch the dog, bring homework or books home, look at "fat' people, shop, even eating was becoming an issue, etc. etc. Many, many contamination fears interfering with her life. What a difference 3 months makes!

 

Here is a post I sent out to a few friends this morning:

 

OK, holding my breath now. Since we've returned home from our summer camp, Sophie just seems to be mentally shedding her OCD one thing at a time...almost like she no longer feels the contamination fears, just the fear of the fear...so bit by bit she is trying and achieving new things which were impossible when we left here in June.

Last week she traveled to Syracuse an hour away to try out for an elite soccer league, only to panic at the last minute because she was afraid to touch her cleats, which she last used in the spring for softball (overweight coach contaminated them). She was so disappointed on the ride home, and so returned the next day, threw all of her gear including cleats on, and ran around with a bunch of kids she never met before playing soccer for the next hour and a half, made the cut no problem. She loves her new soccer team, and even thanked me for driving her the hour to play on it yesterday. This week she offered to clean out the car (for $5), which was absolutely disgusting! She vaccuumed out dog hair, scoured the floor mats, scrubbed seats, etc. I was in shock. Yesterday she pointed out that she had braided her American Girl doll's hair, which she hasn't touched since last December. She also asked me to wash her once "contaminated" backpack, which has been housed in the garage for 3 months because it was too infected to come into the house, and today she sharpened up pencils, packed it up, and trotted off to the first day of school. She takes one shower a day, brushes her hair and puts it in a pony tail, uses deoderant (sometimes) and dresses up occasionally. The change is unbelievable. She is so happy. We are enjoying her company again!

The only symptom she is really obvious about is a sneeze-like tic, exactly like Lauren Johnson on the video... it is more apparent when she is tired. Hoping that will resolve with time and continued treatment. I continue to follow Dr. treatment to a T...and only add probiotics to the mix. Doctor says 6 more months until we are done! She tested positive for borrelia, babesia, bartonella, ehrlichiosis, ricketsia, XMRV, fungus. Now she is down to the first three, and kicking them fast! I know there will be bumps, but no crying here anymore! Prayers of thanks is more like it!

 

Just wanted to thank you all for your encouragement when we were so so low. It's impossible to believe this is the same child. Hope you are all making wonderful progress too!

Edited by laure
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That is wonderful! Wow, what a great update! I am so happy for her and for you. I just posted a pretty good update on dd10 although she still needs some help. My dd8 is still pushing through her symptoms. I need to get out there to see your same doc but since I have no money I'm trying to get through it here. If we can't, I'll find a way to get to Denver.....

 

Keep up the good work and I look forward to your next great update!

 

Susan

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So glad to hear that the madness of OCD is losing its grip. You must be so happy to be able to breathe again. I do hope your doctor is right and it's only a matter of months before she's close to the finish line. But even if there are setbacks, now you know what's possible and from here on out, you know you and DD can accomplish anything. Nothing can hold you back now!

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That is wonderful! Wow, what a great update! I am so happy for her and for you. I just posted a pretty good update on dd10 although she still needs some help. My dd8 is still pushing through her symptoms. I need to get out there to see your same doc but since I have no money I'm trying to get through it here. If we can't, I'll find a way to get to Denver.....

 

Keep up the good work and I look forward to your next great update!

 

Susan

 

 

Susan,

I PM'd you. Any questions, let me know!

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So glad to hear that the madness of OCD is losing its grip. You must be so happy to be able to breathe again. I do hope your doctor is right and it's only a matter of months before she's close to the finish line. But even if there are setbacks, now you know what's possible and from here on out, you know you and DD can accomplish anything. Nothing can hold you back now!

 

Thank you LLM! My husband and I are realizing we actually almost need family therapy to figure out how to parent normally again... it is so very very different to have the same kid no longer pushing back, resisting, crying, screaming ... hearing "ok Dad" and "thanks, you are the best Mom in the world" is jaw-dropping. Almost like this child has been hiding in a box, and now has been unwrapped!

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Thank you LLM! My husband and I are realizing we actually almost need family therapy to figure out how to parent normally again... it is so very very different to have the same kid no longer pushing back, resisting, crying, screaming ... hearing "ok Dad" and "thanks, you are the best Mom in the world" is jaw-dropping. Almost like this child has been hiding in a box, and now has been unwrapped!

 

Family therapy was a life saver for us. While you're in it, it sometimes feels like you're not getting much out of it. But in hindsight, it helped us appreciate where the other guy was coming from and probably prevented a lot of misunderstandings and wedges. You have all been through trauma. It's important to heal properly to minimize scars. I highly recommend it.

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Very encouraging post. We are right there with you... My ds15 was Dx with PANDAS and treated with PEX with good improvement that only lasted 2 months. This disappointment was followed by a Dx of Lyme, Babesia, and Bartonella. Dealing with these infections has been rough but my ds15 has now regained all the benefits that he had from PEX and more... plus the improvement seems to be "holding steady" this time. It is a complicated process when a PANDAS child also has Lyme etc.

 

One important note: Without PEX I do not believe that my ds15 could have gotten through the Herxheimer reactions that his Lyme treatment brought on. He really needed both kinds of treatment. We almost lost him.

 

Thank you for posting!!

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Very encouraging post. We are right there with you... My ds15 was Dx with PANDAS and treated with PEX with good improvement that only lasted 2 months. This disappointment was followed by a Dx of Lyme, Babesia, and Bartonella. Dealing with these infections has been rough but my ds15 has now regained all the benefits that he had from PEX and more... plus the improvement seems to be "holding steady" this time. It is a complicated process when a PANDAS child also has Lyme etc.

 

One important note: Without PEX I do not believe that my ds15 could have gotten through the Herxheimer reactions that his Lyme treatment brought on. He really needed both kinds of treatment. We almost lost him.

 

Thank you for posting!!

 

 

Thank God you did not lose him! Poor boy! I'm sure this is much, much more difficult with an older child, not sure I could bare it with my older kids...we will keep these ideas on the back burner, because our insurance actually had approved it...thankfully it is no longer seeming necessary at this point in time.

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Hey Laura,

 

So glad to hear your news! I'm confused though...Did Igenex tests show negatives for those infections...and the ART doc run a different type of test? When do most kids move onto to try ART? I'm completely clueless in this area! I've been told that we're only on Lyme treatment full force (treating Bartonella as well as Lyme) for 4 months...not long enough to elimiante all the symptoms...so we're waiting. We have started ADHD meds with great reluctance and it's improved those symptoms but now, it's confusing and I need to check with docs about how we can still monitor progress with Lyme treatment if ADHD meds are eliminating (or masking) his key symptoms!

 

Colin has never really had OCD issues, is that what ART is more for?

 

Darlene

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Hey Laura,

 

So glad to hear your news! I'm confused though...Did Igenex tests show negatives for those infections...and the ART doc run a different type of test? When do most kids move onto to try ART? I'm completely clueless in this area! I've been told that we're only on Lyme treatment full force (treating Bartonella as well as Lyme) for 4 months...not long enough to elimiante all the symptoms...so we're waiting. We have started ADHD meds with great reluctance and it's improved those symptoms but now, it's confusing and I need to check with docs about how we can still monitor progress with Lyme treatment if ADHD meds are eliminating (or masking) his key symptoms!

 

Colin has never really had OCD issues, is that what ART is more for?

 

Darlene

Edited by laure
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Hey Laura,

 

So glad to hear your news! I'm confused though...Did Igenex tests show negatives for those infections...and the ART doc run a different type of test? When do most kids move onto to try ART? I'm completely clueless in this area! I've been told that we're only on Lyme treatment full force (treating Bartonella as well as Lyme) for 4 months...not long enough to elimiante all the symptoms...so we're waiting. We have started ADHD meds with great reluctance and it's improved those symptoms but now, it's confusing and I need to check with docs about how we can still monitor progress with Lyme treatment if ADHD meds are eliminating (or masking) his key symptoms!

 

Colin has never really had OCD issues, is that what ART is more for?

 

Darlene

 

I PM 'd you Darlene.

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So glad to hear that the madness of OCD is losing its grip. You must be so happy to be able to breathe again. I do hope your doctor is right and it's only a matter of months before she's close to the finish line. But even if there are setbacks, now you know what's possible and from here on out, you know you and DD can accomplish anything. Nothing can hold you back now!

 

Thank you LLM! My husband and I are realizing we actually almost need family therapy to figure out how to parent normally again... it is so very very different to have the same kid no longer pushing back, resisting, crying, screaming ... hearing "ok Dad" and "thanks, you are the best Mom in the world" is jaw-dropping. Almost like this child has been hiding in a box, and now has been unwrapped!

 

 

I was crying when I read this, we are parallel right now. Our OCD and tics were different, but severe none the less. Meltdowns and defiance have almost ceased, and its like a beautiful angel has blossomed from the darkness, and she is so close to GOD after all she has been through. I am so happy for you, and us, and so hopeful for all the others still enduring this....

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