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


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MomWithOCDSon,

I think that is a HUGE success story! I think besides medical treatment, learning to deal with OCD is a major part of the battle. Our small success story is that he is able to do many of the things we would not do at the beginning: go outside, play with the dog, handle dirty laundry, touch doorknobs, etc. We've all also learned to recognize OCD questions and not answer them, we've learned to laugh a lot of this stuff off. We've learned not to get frustrated, and we've learned that he can get back to normal on antibiotics plus steroids.

 

Now we just have to figure out a way for all of us to stay healthy so he doesn't keep going back to square one! But we are seeing the light at the end on the tunnel.

 

Give your son and yourself a good pat on the back for learning to deal with OCD!

 

Isabel

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MomWithOCDSon,

I think that is a HUGE success story! I think besides medical treatment, learning to deal with OCD is a major part of the battle. Our small success story is that he is able to do many of the things we would not do at the beginning: go outside, play with the dog, handle dirty laundry, touch doorknobs, etc. We've all also learned to recognize OCD questions and not answer them, we've learned to laugh a lot of this stuff off. We've learned not to get frustrated, and we've learned that he can get back to normal on antibiotics plus steroids.

 

Now we just have to figure out a way for all of us to stay healthy so he doesn't keep going back to square one! But we are seeing the light at the end on the tunnel.

 

Give your son and yourself a good pat on the back for learning to deal with OCD!

 

Isabel

 

Thanks, Isabel.

 

Well, unlike some PANDAS parents who have only been confronted with OCD behaviors fairly recently, we've been dealing with what we thought was OCD for more than 6 years! That's not to say we don't have to constantly "retool," because every time an exacerbation hits, he's that much older, in a different place academically, in a different place physically, in a different place emotionally, but we've had good professionals on our side all this time, and other parents like you to give us advice and cheer us on, too! :mellow:

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My dd started antibiotics in Nov and though we are not out of the woods yet we have many small things to celebrate. Her ocd touches every part of her life. Sometimes I don't realize a behavior is gone until she has a bit of a setback and the behavior returns. (most recently a cold caused a setback)

 

she is able to get into and out of the car without much difficulty. There used to be days she sat in it and cried or couldn't stop openeding and closing the door.

 

She is able to walk more easily without retracing steps and she gets up the steps to the house in just moments now....used to take 20 minutes at times with raging and crying.

 

She uses the bathroom independently and doesn't leave the floor soaked anymore from washing and drying repeatedly.

 

She is able to sleep at night, albeit on the couch, but she goes to sleep in half an hour without rages and getting onto and off the couch over and over. (most nights) That's a big one, sleep is so important. She's begun to talk about sleeping in her own bed but is not quite ready.

 

She can have sleep ovesr and sleep at other kids houses without melting down at any time during the visit.

 

She dresses in just a few minutes rather than putting it off all day long and raging and crying while she dresses.

 

She chooses to shower every few days and though she still needs help with the shampoo and conditioner, she gets it done and does it of her own accord.

 

She's brushing her teeth of her own accord once a day. (used to go days without brushing and when she did it caused GREAT anxiety) Now she's done in a minute or two. It still causes some discomfort with the need to repeat, but not bad.

 

She chose to sign up for skating lessons and has gone twice. She has gotten out of the house on time and enjoyed the class.

 

She seems to think more clearly. Less fog. Fewer "what?" with a look of complete confusion on her face. Is playing card games without losing her attention span so easily.

 

She is less angry and rages only once in a while. The rages are MUCH shorter lived and followed by an appology for her behavior.

 

She still struggles each day with reassurance questions and some other difficulties...I need to watch her eat and swallow to make sure she does it "normally." Still has facial tic, though vocal tic seems to be gone.

 

She begins a 5 day steroid burst tomorrow. I'm nervous and hopeful.

 

Angela

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I have an updated "gratitude" list to add today for another few small battles won. As of this morning, I am grateful:

 

1. That our pediatrician agreed to another 2 full months of Augmentin XR 2,000 mg. daily, if needed (prescriptions in hand!).

 

2. That my son was singing as he got ready for school this morning and announced that he's actually feeling more like a "regular kid" again!

 

3. That he added another class onto his school schedule beginning today, so he's only 2 classes short of being back to attending a full school day!

 

4. That I found this forum where I'm able to learn so much in one place!

 

Thanks!

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My son threw his empty deodorant (I know, he is only 7 but insists on needing/wanting it because his older brother NEEDS it)...

anyway, I saw in the trash today that he threw the empty "jar" away......my son throws away nothing! Not because he is lazy and just leaves trash around......but because it makes him sad to do it......hoarding was bad for him when he was in his bad episode. It still lingers....but...HE THREW TRASH AWAY ON HIS OWN TODAY!!!

 

Our small (huge for us) success story!! :blink:

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My son threw his empty deodorant (I know, he is only 7 but insists on needing/wanting it because his older brother NEEDS it)...

anyway, I saw in the trash today that he threw the empty "jar" away......my son throws away nothing! Not because he is lazy and just leaves trash around......but because it makes him sad to do it......hoarding was bad for him when he was in his bad episode. It still lingers....but...HE THREW TRASH AWAY ON HIS OWN TODAY!!!

 

Our small (huge for us) success story!! :blink:

 

^_^:):)

 

Congratulations!

 

Does he save ALL his school papers, too? I've had a devil of a time getting my son to clean out his folders and part with old quizzes, worksheets, etc., even when he's long since ended any use for them. His gifted teacher at school says that this is common for "gifted" kids, but I think it's sort of low-level hoarding activity on his part.

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Yep...sure does. If he sees I threw away a paper of his (I can't save them all...just the good stuff)...anyway, he will take it back out of the trash....he does this with anything though, not just his papers. Funny, I was told this year that he may be "gifted", also.

We'll see......

 

He is MUCH better than when he was in his episode...his hoarding was bad then....leaves, rocks, paper trash, food, etc. (he couldn't finish eating anything....a sandwich, a cookie...he would have to save part of it!)....... I would find little piles of the stuff everywhere. He doesn't gather stuff anymore....just doesn't like to throw things away. We are working on that (have you seen A&E's "Hoarders"? Monday nights, 10 p.m. East coast.....SCARY) Today he did it without prompting!!!!!

 

 

Thanks for the congratulations!!! :blink:

 

Congratulations yourself!!

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I always get perspective on this forum!

 

I guess I have a big battle, hesitate to say "won" for fear of jinxing myself and others! ?

 

A little over a year ago, my son was wielding metal candlesticks at me in a rage tantrum. Post IVIG, PEX, and antibiotiocs, he will now carefully help me light the candle in that same candlestick.

 

While we still have our issues, and I am with him 24/7, it takes a reminder like this one to make me realize how far he has come.

 

I do try to let him know that almost every day, but maybe it is me that needs that reminder?

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My dd8 has been sick all week and has been teetering on the edge of PANDAS behavior and I've been worried about her. But even so, this week, she said she wanted to stay home all by herself while I went to pick her sister up from school. Now I don't know if everyone will think 8 yrs old is old enough to stay home alone or not Iheck, I don't even know) but she wanted to do it and was up for the challenge. She shut all the curtains and locked the doors and called me 5 times in the 30 minutes I was gone. But she did it. She stayed in the house alone. Last year, she would not be in any room in the house without me, not even the bathroom.

 

1.gif

 

Susan

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I always get perspective on this forum!

 

I guess I have a big battle, hesitate to say "won" for fear of jinxing myself and others! ?

 

A little over a year ago, my son was wielding metal candlesticks at me in a rage tantrum. Post IVIG, PEX, and antibiotiocs, he will now carefully help me light the candle in that same candlestick.

 

While we still have our issues, and I am with him 24/7, it takes a reminder like this one to make me realize how far he has come.

 

I do try to let him know that almost every day, but maybe it is me that needs that reminder?

 

I think we ALL need to be reminded! Sometimes it's hard to see the trees for the forest, you know?

 

And now that my son is improving, he's pretty hard on himself, commenting about how he should be doing more, focusing better, etc. Still got enough of that "OCD guilt" hanging around to try and prevent him from reveling in his improvemen sometimes. :blink:

 

Sounds as though you've come a very long way, so kudos to both of you!

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I don't want to jinx it either...

 

My son has "autism" and every doctor we've seen said his raging meltdowns were just part of the "autism"- even Riley Children's Hospital said this..."better go get behavior therapy and Risperdal".

 

Well, we recently stopped his medication (Seroquel and Prozac), then we did steroid burst... he got worse, then we tried Augmentin and he got a little better... stopped pounding and banging til his hands bled, then we started Azithromycin 250 2xday and he stopped crying and no raging meltdowns!!!!

 

He still has a temper because he gets frustrated he can't talk but he is not attacking us or raging for 45 minutes anymore. He is happier and not crying all the time.

 

I pray this lasts!!!!!!!!

Thank you PANDAS group and Dr. K and Dr. T.

 

Laura

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I don't want to jinx it either...

 

My son has "autism" and every doctor we've seen said his raging meltdowns were just part of the "autism"- even Riley Children's Hospital said this..."better go get behavior therapy and Risperdal".

 

Well, we recently stopped his medication (Seroquel and Prozac), then we did steroid burst... he got worse, then we tried Augmentin and he got a little better... stopped pounding and banging til his hands bled, then we started Azithromycin 250 2xday and he stopped crying and no raging meltdowns!!!!

 

He still has a temper because he gets frustrated he can't talk but he is not attacking us or raging for 45 minutes anymore. He is happier and not crying all the time.

 

I pray this lasts!!!!!!!!

Thank you PANDAS group and Dr. K and Dr. T.

 

Laura

That "just part of the autism" crap really ticks me off. Where is it written in the dx criteria that autism includes raging misery?

So glad you've got things more under control!

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To the PP who mentioned stuffed/toy pandas... There has been a very large stuffed Panda hanging in a tree in the parking lot of my office. The first day I saw it was way before this. I laughed so hard! Now, I won't look that way. One day, that was the ONLY parking spot in the whole lot and I had to park under it. I sat there and cried then went and reported that it was trash and repulsive that it was still there and I demanded it be removed!

 

We're doing well. This was DS first episode and thanks to wonderful friends who identified PANDAS as I was telling them what was going on, and very helpful peds and an immunologist, DS is doing well. No more rages, his teacher is reporting he is now testing right at par with his class (he was literally failing first grade) and he is more often than not, an average, pleasant child. Granted, we still see mood liability and some instability at times - and DH and I are still reeling and partially living in fear I believe. Trying to adjust and fearing what may still be to come. Will there be more? Could he possibly be cured since it was caught so early? The unknown is what fears me most at this stage? I suppose I'm going through the stages of grief really.

 

I was so scared having major surgery myself last week - but it could not be avoided any longer. I must say = DS has sailed through it and has even been absolutely WONDERFUL! He has become my little helper 98% of the time and seems to relish the role. Even to the extent that he believes behaving for daddy (I can do little to care for him right now) and doing well in school to make me happy is helping me. It's wonderful. I did have one issue the day I came home though. He got upset over the slightest thing, took my walker away from me and slammed the bathroom door so I couldn't get in there. It was easily redirected though, which was rare! He did end up needing to visit me in the hospital and that went very well. He was more interested in the cafateria than seeing me - LOL!

 

So overall, we are doing well at the moment.

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  • 2 weeks later...

Okay . . . a new one!

 

DS12 returned to school for a full day today for the first time since October! Once we got him on abx, we've been slowly re-integrating him, basically one class period at a time. We are SO proud of him! And I am very grateful for having found this forum and "Saving Sammy," which, were it not for both, I know we wouldn't be in the positive place we are today.

 

Thank you, All!!

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Okay . . . a new one!

 

DS12 returned to school for a full day today for the first time since October! Once we got him on abx, we've been slowly re-integrating him, basically one class period at a time. We are SO proud of him! And I am very grateful for having found this forum and "Saving Sammy," which, were it not for both, I know we wouldn't be in the positive place we are today.

 

Thank you, All!!

 

What a great thing to read! Hope springs eternal and there is, truly, strength in numbers. Thanks so much for sharing this and congratulations to both your son and you. Enjoy the end product of your dedication!

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