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So my ds who was last week officially declared "in remission" has very few remaining symptoms. I can pick them out. Some of you might recognize them. But someone on the street would never notice.

The one big, huge change that remains a constant struggle is his fear of water.

 

As an infant he loved baths, at 9 mos we took swimming lessons and he loved them, and as a toddler he loved the pool. But with PANDAS he suddenly developed a combination of sensory issues with the feel of the water flowing across his skin (particularly his scalp) and a virtual terror of water itself. While the sensory issues seemed to have resolved, the fear of water remains quite strong. It is real struggle...okay, let's be honest...it's a freaking nightmare to wash his hair!! He's afraid the water will be too hot, too cold, too hard, too fast, get in his eyes, get in his ears (which I used to think were due to ear infections and sensitivity of his ears, but he's actually afraid of what the water will DO in his ears and not being able to get it back out).

 

He loved to go to the pool last summer but spent a large portion of the time cautiously avoiding splashes and watching everyone else play or clinging to me. He loves water rides and begs to go on them, though they scare him to death and the moment we're on them he wants OFF (always too late).

 

SO... in an effort to continue to help him move beyond this fear, I signed him up for private swim lessons and he went to the first one today.

SUCCESS.

 

He spent the entire afternoon grilling me with questions on "what are they going to do?" "am I going to have to go in the water?" "I can only hang onto the wall for 10 minutes" "what happens if water gets in my eyes?" I promised goggles (didn't use), ear plugs (didn't use), constant supervision, etc. He declared 10x "Nope, I've changed my mind. I don't want swim lessons." But we went.

 

I have to tell you, he shook the whole half hour. He was excited to be there and smiled and even BLEW BUBBLES!! He refused to do some things and got mad at one point at the instructor gently trying to convince him one too many times to put his hands on his head. He shook like a leaf out of fear, uncontrollably, but never wanted to get out and enthusiastically continued. He wasn't cold, but imagine how a child would shake if swimming in water that was 40 degrees...you get the idea.

 

BUT HE DID IT. And he's proud of himself and can't wait to go back. It was all I could do not to cry for joy for him right there in front of all these strangers who could never imagine why I was crying, because at 6, he clearly recognized his accomplishment.

 

So hope continues and I had to share. It was a good day today.

Edited by poetmom
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So my ds who was last week officially declared "in remission" has very few remaining symptoms. I can pick them out. Some of you might recognize them. But someone on the street would never notice.

The one big, huge change that remains a constant struggle is his fear of water.

 

As an infant he loved baths, at 9 mos we took swimming lessons and he loved them, and as a toddler he loved the pool. But with PANDAS he suddenly developed a combination of sensory issues with the feel of the water flowing across his skin (particularly his scalp) and a virtual terror of water itself. While the sensory issues seemed to have resolved, the fear of water remains quite strong. It is real struggle...okay, let's be honest...it's a freaking nightmare to wash his hair!! He's afraid the water will be too hot, too cold, too hard, too fast, get in his eyes, get in his ears (which I used to think were due to ear infections and sensitivity of his ears, but he's actually afraid of what the water will DO in his ears and not being able to get it back out).

 

He loved to go to the pool last summer but spent a large portion of the time cautiously avoiding splashes and watching everyone else play or clinging to me. He loves water rides and begs to go on them, though they scare him to death and the moment we're on them he wants OFF (always too late).

 

SO... in an effort to continue to help him move beyond this fear, I signed him up for private swim lessons and he went to the first one today.

SUCCESS.

 

He spent the entire afternoon grilling me with questions on "what are they going to do?" "am I going to have to go in the water?" "I can only hang onto the wall for 10 minutes" "what happens if water gets in my eyes?" I promised goggles (didn't use), ear plugs (didn't use), constant supervision, etc. He declared 10x "Nope, I've changed my mind. I don't want swim lessons." But we went.

 

I have to tell you, he shook the whole half hour. He was excited to be there and smiled and even BLEW BUBBLES!! He refused to do some things and got mad at one point at the instructor gently trying to convince him one too many times to put his hands on his head. He shook like a leaf out of fear, uncontrollably, but never wanted to get out and enthusiastically continued. He wasn't cold, but imagine how a child would shake if swimming in water that was 40 degrees...you get the idea.

 

BUT HE DID IT. And he's proud of himself and can't wait to go back. It was all I could do not to cry for joy for him right there in front of all these strangers who could never imagine why I was crying, because at 6, he clearly recognized his accomplishment.

 

So hope continues and I had to share. It was a good day today.

 

This is GREAT news!!! Your little man pushed through today and overcame something that has caused him great anxiety. He should be beaming with pride as should you! Poor thing...thinking of him quivering with fear but trying so hard to push that in the back of his mind and stick it out. What a tough little boy you have there with a very strong spirit and drive to not give up!

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Don't know how you kept those tears of joy in in - their falling down my face right now. How wonderful. Thank you for sharing. Congratulations to you both!

 

Kara

 

So my ds who was last week officially declared "in remission" has very few remaining symptoms. I can pick them out. Some of you might recognize them. But someone on the street would never notice.

The one big, huge change that remains a constant struggle is his fear of water.

 

As an infant he loved baths, at 9 mos we took swimming lessons and he loved them, and as a toddler he loved the pool. But with PANDAS he suddenly developed a combination of sensory issues with the feel of the water flowing across his skin (particularly his scalp) and a virtual terror of water itself. While the sensory issues seemed to have resolved, the fear of water remains quite strong. It is real struggle...okay, let's be honest...it's a freaking nightmare to wash his hair!! He's afraid the water will be too hot, too cold, too hard, too fast, get in his eyes, get in his ears (which I used to think were due to ear infections and sensitivity of his ears, but he's actually afraid of what the water will DO in his ears and not being able to get it back out).

 

He loved to go to the pool last summer but spent a large portion of the time cautiously avoiding splashes and watching everyone else play or clinging to me. He loves water rides and begs to go on them, though they scare him to death and the moment we're on them he wants OFF (always too late).

 

SO... in an effort to continue to help him move beyond this fear, I signed him up for private swim lessons and he went to the first one today.

SUCCESS.

 

He spent the entire afternoon grilling me with questions on "what are they going to do?" "am I going to have to go in the water?" "I can only hang onto the wall for 10 minutes" "what happens if water gets in my eyes?" I promised goggles (didn't use), ear plugs (didn't use), constant supervision, etc. He declared 10x "Nope, I've changed my mind. I don't want swim lessons." But we went.

 

I have to tell you, he shook the whole half hour. He was excited to be there and smiled and even BLEW BUBBLES!! He refused to do some things and got mad at one point at the instructor gently trying to convince him one too many times to put his hands on his head. He shook like a leaf out of fear, uncontrollably, but never wanted to get out and enthusiastically continued. He wasn't cold, but imagine how a child would shake if swimming in water that was 40 degrees...you get the idea.

 

BUT HE DID IT. And he's proud of himself and can't wait to go back. It was all I could do not to cry for joy for him right there in front of all these strangers who could never imagine why I was crying, because at 6, he clearly recognized his accomplishment.

 

So hope continues and I had to share. It was a good day today.

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So my ds who was last week officially declared "in remission" has very few remaining symptoms. I can pick them out. Some of you might recognize them. But someone on the street would never notice.

The one big, huge change that remains a constant struggle is his fear of water.

 

As an infant he loved baths, at 9 mos we took swimming lessons and he loved them, and as a toddler he loved the pool. But with PANDAS he suddenly developed a combination of sensory issues with the feel of the water flowing across his skin (particularly his scalp) and a virtual terror of water itself. While the sensory issues seemed to have resolved, the fear of water remains quite strong. It is real struggle...okay, let's be honest...it's a freaking nightmare to wash his hair!! He's afraid the water will be too hot, too cold, too hard, too fast, get in his eyes, get in his ears (which I used to think were due to ear infections and sensitivity of his ears, but he's actually afraid of what the water will DO in his ears and not being able to get it back out).

 

He loved to go to the pool last summer but spent a large portion of the time cautiously avoiding splashes and watching everyone else play or clinging to me. He loves water rides and begs to go on them, though they scare him to death and the moment we're on them he wants OFF (always too late).

 

SO... in an effort to continue to help him move beyond this fear, I signed him up for private swim lessons and he went to the first one today.

SUCCESS.

 

He spent the entire afternoon grilling me with questions on "what are they going to do?" "am I going to have to go in the water?" "I can only hang onto the wall for 10 minutes" "what happens if water gets in my eyes?" I promised goggles (didn't use), ear plugs (didn't use), constant supervision, etc. He declared 10x "Nope, I've changed my mind. I don't want swim lessons." But we went.

 

I have to tell you, he shook the whole half hour. He was excited to be there and smiled and even BLEW BUBBLES!! He refused to do some things and got mad at one point at the instructor gently trying to convince him one too many times to put his hands on his head. He shook like a leaf out of fear, uncontrollably, but never wanted to get out and enthusiastically continued. He wasn't cold, but imagine how a child would shake if swimming in water that was 40 degrees...you get the idea.

 

BUT HE DID IT. And he's proud of himself and can't wait to go back. It was all I could do not to cry for joy for him right there in front of all these strangers who could never imagine why I was crying, because at 6, he clearly recognized his accomplishment.

 

So hope continues and I had to share. It was a good day today.

Congratulations!! You should be very proud!!!

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Good to hear! Recovery and remission really is a long process. Even when I first declared my son "in remission" I would still have nice surprises. Like he would do something and I would be pleasantly surprised.Maybe one would say he had some minor residual issues that I had just become so used to that I didn't realize it was even a residual PANDAS issue. Anyway, you'll probably still have some nice surprises here and there.

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Congratulations!!! That's wonderful! I now the tears of joy feeling, our day care provider and I both cried the day my son asked me to open his banana! We felt like fools, but it was a great feeling. God bless your remission,my it be permanent!

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Congrats, what an awesome feeling to beat this awful illness!

 

My son has a horrible time getting his hair washed and b/c of that I keep it relatively short and only wash it every other day or so. When I do wash it, I let him hold a wash rag over his eyes and tip his head back. He still cries/screams but he "lets" me do it which is progress for us. He used to bat my hand away...

 

My 2yo, on the other hand, will NOT take a bath when he is in acute exacerbation. I have to bath him standing up, crying and clawing to get out the entire time. When not in exacerbation, he LOVES his bath and cries when I take him OUT!!!

 

These crazy kids! :)

 

Stephanie

So my ds who was last week officially declared "in remission" has very few remaining symptoms. I can pick them out. Some of you might recognize them. But someone on the street would never notice.

The one big, huge change that remains a constant struggle is his fear of water.

 

As an infant he loved baths, at 9 mos we took swimming lessons and he loved them, and as a toddler he loved the pool. But with PANDAS he suddenly developed a combination of sensory issues with the feel of the water flowing across his skin (particularly his scalp) and a virtual terror of water itself. While the sensory issues seemed to have resolved, the fear of water remains quite strong. It is real struggle...okay, let's be honest...it's a freaking nightmare to wash his hair!! He's afraid the water will be too hot, too cold, too hard, too fast, get in his eyes, get in his ears (which I used to think were due to ear infections and sensitivity of his ears, but he's actually afraid of what the water will DO in his ears and not being able to get it back out).

 

He loved to go to the pool last summer but spent a large portion of the time cautiously avoiding splashes and watching everyone else play or clinging to me. He loves water rides and begs to go on them, though they scare him to death and the moment we're on them he wants OFF (always too late).

 

SO... in an effort to continue to help him move beyond this fear, I signed him up for private swim lessons and he went to the first one today.

SUCCESS.

 

He spent the entire afternoon grilling me with questions on "what are they going to do?" "am I going to have to go in the water?" "I can only hang onto the wall for 10 minutes" "what happens if water gets in my eyes?" I promised goggles (didn't use), ear plugs (didn't use), constant supervision, etc. He declared 10x "Nope, I've changed my mind. I don't want swim lessons." But we went.

 

I have to tell you, he shook the whole half hour. He was excited to be there and smiled and even BLEW BUBBLES!! He refused to do some things and got mad at one point at the instructor gently trying to convince him one too many times to put his hands on his head. He shook like a leaf out of fear, uncontrollably, but never wanted to get out and enthusiastically continued. He wasn't cold, but imagine how a child would shake if swimming in water that was 40 degrees...you get the idea.

 

BUT HE DID IT. And he's proud of himself and can't wait to go back. It was all I could do not to cry for joy for him right there in front of all these strangers who could never imagine why I was crying, because at 6, he clearly recognized his accomplishment.

 

So hope continues and I had to share. It was a good day today.

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Stephanie - Just a thought: I learned with his sensory sensitivities that taking him to the beauty salon and letting them wash his hair was sometimes worth the expense and nerves. It still scared him/bothered him, but because it was a stranger, he wouldn't scream and fight. He preferred it because it was over quicker and at the worst of his sensory issues, it limited the amount of his body that had water running over it. I found it a relief not having to fight him.

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