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Winning Small Battles, If Not the War -- Yet!


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Every time I come here I learn something new and feel supported because I see that our family is NOT the only one going through all this stuff, even if we are the only one on our block, or maybe even in our neighborhood or community. And we necessarily spend a lot of time and words looking for help, suggestions, solutions, etc., But I thought maybe if we could post some of our small success stories . . . even if our kids don't yet qualify as "healed" . . . it might help us feel a little more empowered, a little more successful on a day-to-day basis. Obviously, we had a little success today which made me think of this topic, so I'll kick it off.

 

Our DS12 is back on a fresh round of abx; this is Day 3. He had been on abx for 2 months, and then we took him off, both to try and assess what, if anything, the abx were doing for him, and also because his tummy was tired of dealing with it all. But along about Day 9 without the abx assistance, we saw him slide dramatically (2 major meltdowns in a single day when we hadn't seen any meltdowns at all for almost a week prior to that), we got another prescription.

 

The day before he began this fresh course, he and his dad went over to our health club to take a swim; not being particularly athletic and loathe to "sweat" because it makes him feel "dirty and sticky," swimming is about the only physical activity he truly enjoys, and he's good at it, too! We really enjoy seeing him feeling so free and unencumbered by all the obsessions and compulsions his OCD behaviors tend to bring to most aspects of his daily life. Anyway, this particular day, they'd barely left before I got a phone call from my husband, telling me that they'd only made it as far as the lobby of the club when our son lost it, melting down about how filthy the floor was (major snow storm so slush, salt, mud, etc. were being tracked everywhere) and how he couldn't possibly stay there, go in the locker room or swim because it was too disgusting and dirty there. He was beyond reason and making a scene, so they cashed it in and came home. Then he was upset with himself for "giving in to the OCD" and spent the rest of the night beating himself up about not having been able to push past the contamination fear.

 

Well today, Day 3, he packed his swim bag and headed off once again with his dad to the club to swim. Still snow and ice on the ground, and therefore slush and salt in the building lobby. He was nervous. But HE DID IT! B) He made it all the way into the club, through the locker room, into the pool, had a nice, long, energetic swim, and made it back home with a smile on his face! Now he's tucked into bed, pleased with and proud of himself, physically satisfied and no longer afraid to do one of the things he's always enjoyed the most until the OCD tried to take it away from him.

 

I give credit to both the abx and my determined boy!

 

What's YOUR Small Success Story?

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It's not recent but it was the one of the first things he overcame. It was with his first exacerbation. Big fear of germ, dirt, contamination. It was right after XMas. He pretty much boycotted all his toys, including what he got for XMas becasue his sister eneterd his room and he saw her touching a battle coach toy (form Imaginext Castle). Well, one day I decided I'd try to get him to play. He was adamant that he wouldn't. It caused anxiety and a semi meltdown. Finally, I lost my cool and figured I make him do it. I grabbed the battle coach, grabbed his hand and put that toy on his hand and closed his fist around it. Well, boy that was a mistake. All heck broke loose.

 

So, he eventually calmed down, I was crying, well, you know how it goes. I realized I really messed up and I just totally reinforced his fear and possibly made it worse. In hindsight, I should have waited a day or two, but indtead I pulled that toy out og his room along with the rest of the castle toys. I placed them on the living room floor. He just stared at them. He didn't want to play. I picked up that battle coach and told him to please put one finger on it. It would be okay. I showed I wasn't getting hurt by it. I somehow got him to let me hold his hnad agian and I placed one of his fingers on it. I waited for the anxiety to go down and them then put another and another. before I knew it he was holding that battle coach. And then I was sitting there playing with my son! It had been months since he did that. From that day on he was still hesitant about the toy, but I learned to take them out of his room so he wouldn't feel overwhelmed by the other toys and just leave them in the living room. I'd walk away and sooner or later he sit and play. One time I even got him to continue to play even though his sister sat with us. granted it lasted less than 5 minutes, but to him his sister was conatminated. It was a miracle.

 

That was also how I learned to approach his OCD in baby steps and to wean him off of it.

 

Today, that same boy plays with all his toys and even his sister's toys and in his sister's room! The same room he couldn't bring himself to pass w/o spining in circles or holding his breath. Miracles happen and it is amazing.

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It's not recent but it was the one of the first things he overcame. It was with his first exacerbation. Big fear of germ, dirt, contamination. It was right after XMas. He pretty much boycotted all his toys, including what he got for XMas becasue his sister eneterd his room and he saw her touching a battle coach toy (form Imaginext Castle). Well, one day I decided I'd try to get him to play. He was adamant that he wouldn't. It caused anxiety and a semi meltdown. Finally, I lost my cool and figured I make him do it. I grabbed the battle coach, grabbed his hand and put that toy on his hand and closed his fist around it. Well, boy that was a mistake. All heck broke loose.

 

So, he eventually calmed down, I was crying, well, you know how it goes. I realized I really messed up and I just totally reinforced his fear and possibly made it worse. In hindsight, I should have waited a day or two, but indtead I pulled that toy out og his room along with the rest of the castle toys. I placed them on the living room floor. He just stared at them. He didn't want to play. I picked up that battle coach and told him to please put one finger on it. It would be okay. I showed I wasn't getting hurt by it. I somehow got him to let me hold his hnad agian and I placed one of his fingers on it. I waited for the anxiety to go down and them then put another and another. before I knew it he was holding that battle coach. And then I was sitting there playing with my son! It had been months since he did that. From that day on he was still hesitant about the toy, but I learned to take them out of his room so he wouldn't feel overwhelmed by the other toys and just leave them in the living room. I'd walk away and sooner or later he sit and play. One time I even got him to continue to play even though his sister sat with us. granted it lasted less than 5 minutes, but to him his sister was conatminated. It was a miracle.

 

That was also how I learned to approach his OCD in baby steps and to wean him off of it.

 

Today, that same boy plays with all his toys and even his sister's toys and in his sister's room! The same room he couldn't bring himself to pass w/o spining in circles or holding his breath. Miracles happen and it is amazing.

 

:) Great story! Kind of like a "fairy tale" that came true . . . everybody learned something (you - take it slow; him - my toys won't hurt me), and they all played happily ever after! May there be many more happy tales to come!

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Great idea!

 

My 8 yr old dd who is touch sensitive and does not like most people (especially her sister) to touch her (or hug or kiss) is now sometimes starting wrestling matches with her and they are rolling around on the floor with each other laughing instead of screaming and crying. It doesn't last long, but it is thrilling to see. It is because of our increased abx.

 

Susan

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I have stories that can be attributed to meds and some to other intervention. Like when my son, during an exacerbation that included very physical rages, was on the verge of a physical meltdown that was going to include hitting,kicking, etc.... I picked him up and he raised his hand to hit or punch me. In mid air, he stopped and lowered it and didn't try any harm to me at all. That was totally the success of meds. It was at that point I knew recovery was possible.

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I love threads like this one. Over the past few years, these threads sustained my family when things looked awfully grim. So it's fun to share good news!

 

As some of you know, we've tried a lot of different treatments for our son, with mixed results. Three rounds of IVIG didn't get him back to baseline, and the improvements they triggered didn't last. Then we started the high-dose augmentin XR about 3+ months ago, and it's a very different story.

 

In the past week, our son took his 1st shower since prior to his major exacerbation last March. Yesterday, he ate his first meal in our kitchen since last March, and without anyone reading to him; for the past 9+ months, he would only eat meals in my home office, and only if my wife or I were reading to him. If we stopped reading, he stopped chewing. These seem like such little things to those who have not experienced PANDAS firsthand... but for everyone on this forum, we can appreciate how huge these small victories are!

 

So in a nutshell: 4-5 months ago, our son was going through 2-3 cans of Lysol every day, spraying everything in sight (including his own skin). Now he doesn't touch the stuff. Back then, he could not touch anything without wearing disposable latex gloves, and would throw away a pair after he touched anything with them. We were going through hundreds of pairs a week. He hasn't worn any in months now. He could not watch anyone prepare or carry his food back then and would pinch his eyes shut to avoid it; now, he's preparing his own meals and doesn't flinch if he drops a utensil or gets some on his fingers. He could not touch any other human being; today, he gave his grandma and grandpa each a big hug!

 

He's not 100% yet. The war isn't over. But he's winning small battles every day. I think we've finally got the damned PANDAS on the run!!!

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WorriedDad- This is HUGE! It brought tears to my eyes. Congrats to you and your family! Enjoy the improvements!

 

I can say that after a combo of pex (for one), zithromax, and steroids my girls are doing really well today! We have had peace and happiness and normalcy (wll, for the most part) in our house since Thanksgiving. The girls are not 100%, and I don't know what tommorrow will bring, but I am grateful for every good day that we have.

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WorriedDad- This is HUGE! It brought tears to my eyes. Congrats to you and your family! Enjoy the improvements!

 

I can say that after a combo of pex (for one), zithromax, and steroids my girls are doing really well today! We have had peace and happiness and normalcy (wll, for the most part) in our house since Thanksgiving. The girls are not 100%, and I don't know what tommorrow will bring, but I am grateful for every good day that we have.

 

 

WorriedDad- I share dcmom's sentiment here. Your post also brought tears to my eyes. I am thrilled for your child's success. Very much hope for continued improvements....for everyone here.

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Yeah!!!!!!!!!

 

 

So is anyone else like me and when they see a stuffed panda bear at the store, they just can't look at it? My daughter has Littlest Pet Shop toys and has a panda bear. I just hate that thing!

 

He's not 100% yet. The war isn't over. But he's winning small battles every day. I think we've finally got the damned PANDAS on the run!!!
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I love threads like this one. Over the past few years, these threads sustained my family when things looked awfully grim. So it's fun to share good news!

 

As some of you know, we've tried a lot of different treatments for our son, with mixed results. Three rounds of IVIG didn't get him back to baseline, and the improvements they triggered didn't last. Then we started the high-dose augmentin XR about 3+ months ago, and it's a very different story.

 

In the past week, our son took his 1st shower since prior to his major exacerbation last March. Yesterday, he ate his first meal in our kitchen since last March, and without anyone reading to him; for the past 9+ months, he would only eat meals in my home office, and only if my wife or I were reading to him. If we stopped reading, he stopped chewing. These seem like such little things to those who have not experienced PANDAS firsthand... but for everyone on this forum, we can appreciate how huge these small victories are!

 

So in a nutshell: 4-5 months ago, our son was going through 2-3 cans of Lysol every day, spraying everything in sight (including his own skin). Now he doesn't touch the stuff. Back then, he could not touch anything without wearing disposable latex gloves, and would throw away a pair after he touched anything with them. We were going through hundreds of pairs a week. He hasn't worn any in months now. He could not watch anyone prepare or carry his food back then and would pinch his eyes shut to avoid it; now, he's preparing his own meals and doesn't flinch if he drops a utensil or gets some on his fingers. He could not touch any other human being; today, he gave his grandma and grandpa each a big hug!

 

He's not 100% yet. The war isn't over. But he's winning small battles every day. I think we've finally got the damned PANDAS on the run!!!

 

This is AWESOME and very inspiring! So glad to hear about the great progress! I can just picture you and your spouse looking at each other with Cheshire cat grins every time he's willing to do something the "normal" way again, rather than the convoluted-PANDAS-OCD-contamination way! What joy! May he continue to heal every day, and may you continue to be optimistic and resilient, even if there's an occasional tough day! Heartfelt congrautions to all of you! :)

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So is anyone else like me and when they see a stuffed panda bear at the store, they just can't look at it? My daughter has Littlest Pet Shop toys and has a panda bear. I just hate that thing!

 

Actually my dd8 loves panda bears now. I can only think it's because learning about PANDAS put a name to her problems and made her feel less crazy and helped to justify her problems to herself and everyone else around her who didn't understand her problems. Now when she sees panda bears, she wants to get them to take care of them. I guess because of that, I love them too.

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A few weeks ago we were in an exacerbation with all the fixings...OCD issues, anxiety, severe rages, etc. Over the last 10 days it has been clear he has been getting better and better. Currently he is on azithromycin and steroids and we are proceeding with IVIG this month. We did PEX over the summer and at least our exacerbations are not as bad as they were pre-PEX.

My son wanted to play basketball and I let him despite my fear that I might regret it. Last year playing was a nightmare. The coach yelled at him constantly and thought all his movements were just ADHD and behavior problems. On Saturday watching him it was clear he is doing well and it actually brought tears to my eyes. He could sit on the bench still and watch the game without moving constantly. When he was put in the game he followed the plays and looked just like all the other boys playing. He even scored in overtime! He was so proud and all th eother parents were congratulating him but they had no idea how far we have come.

On a funny side note, he is gaining weight fast on steroids and actually looks pretty normal now (before he was really skinny). He weighed eighty pounds this week which is an eight pound gain in the last few months. He asked (with a sly smile) if he could stay on steroids so he could continue to gain weight fast and be able to sit in the front seat!

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I am almost not "ready" to talk about this --(I know some will understand that) ...

Our second d started struggling with OCD behaviors late summer-- it quickly escalated. Raging, obsessive explaining to the point of tears, sleep problems. Very difficult to watch. (Cam Kinase 181)

 

We tried 500 mg of Augmentin twice a day for a couple of months--and steroids. Saw distinct improvement, but only about 30% not entirely. She was around a friend who was at the end of a cold a few weeks ago and things exploded behaviorally. Exhausting to start this again with a second child.

 

This week we moved (in desperation) to the Saving Sammy dose. 2000mg of Augmentin XR. Thankfully we have a doctor who was kind enough to try it-- This weekend, my husband and I are looking at each other like, "can this be happening?!?" as this weekend was almost back to normal. Oh my goodness, she was happy and singing again-- like a different child. I don't know if it is the accumulation of a couple of months of antibiotics, steroids finally kicking in, or that we started Augmentin XR but we are looking at a truly amazing change.

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Awesome news, T.Mom! Hope the XR continues to work for you!!!

 

 

I am almost not "ready" to talk about this --(I know some will understand that) ...

Our second d started struggling with OCD behaviors late summer-- it quickly escalated. Raging, obsessive explaining to the point of tears, sleep problems. Very difficult to watch. (Cam Kinase 181)

 

We tried 500 mg of Augmentin twice a day for a couple of months--and steroids. Saw distinct improvement, but only about 30% not entirely. She was around a friend who was at the end of a cold a few weeks ago and things exploded behaviorally. Exhausting to start this again with a second child.

 

This week we moved (in desperation) to the Saving Sammy dose. 2000mg of Augmentin XR. Thankfully we have a doctor who was kind enough to try it-- This weekend, my husband and I are looking at each other like, "can this be happening?!?" as this weekend was almost back to normal. Oh my goodness, she was happy and singing again-- like a different child. I don't know if it is the accumulation of a couple of months of antibiotics, steroids finally kicking in, or that we started Augmentin XR but we are looking at a truly amazing change.

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