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Old 03-30-2013, 08:42 PM   #436
petals
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Hope JJ is ok.
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Old 03-30-2013, 09:14 PM   #437
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We think we figured out what's going on with JJ. It was time to get his medication refilled. The pharmacy is no longer carrying the same brand of generic for one of his meds. This is the medicine that when it was increased last time he had all kinds of seizures. I guess he is going through another adjustment. This time to a different brand.

We went to DHS today. It wasn't as busy there as I had expected. We went to check out the Legend of Captain Jack Sparrow. Also saw Beauty and the Beast, watched JTA, tried a PB&J milkshake, and went to Character Palooza!

JJ had to use the w/c today. He did walk some but he was too tired. He's been wanting to go back to bed since he woke up today. It's that medicine. But he'll adjust. It took about 2 weeks last time. Hopefully they'll keep the same generic brand in stock and we won't have to go through this again.





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Originally Posted by ladylyons View Post
I didn't mention that our couch is not up against a wall and it tends to be a dropping point for my DH so when I was walking by his desk (which is near the couch) and looked down there it was. Thank goodness!!! Yes I did!! Plan on doing more this weekend sometime. Just not tonight after our busy day at our local theme park. First time I've ventured there just the kids and I!! Let's say it was crazy but we still had fun!!!
I understand about a dropping point.

That's great that you got to go to the local theme park. Glad you had fun.

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Originally Posted by Moodyzblu View Post
Hope JJ is ok ! I can't imagine how worried it makes you .. but glad to hear he is good so far today !

Still wondering how we might be able to sneak over to SWW even for just a few hours. We don't have hoppers but I am seriously considering adding them. Wonder if you can upgrade to hoppers mid-trip ? I know we don't need them the whole time.
I don't see why not? You'd think they would just pro-rate it? Do you have a travel agent? Maybe you can ask him/her.

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Originally Posted by annmarieda View Post
OH! just one more reason I am jealous of those who get to go to Flower and Garden... the pineapple booth! All those yummy pineapple treats!!!

Sounds like your birthday dinner was very nice. I love that Beast asked you to dance.

I am glad that you had such an amazing day with JJ and the egg hunts and such....I am sorry to hear that he was not having a great day yesterday. 4 weeks seizure free is so great! I wish for you all that it could last longer!

Looks like a fun time was had at the science center! I love the gifts that JJ brought for Ashley! So nice. That Chewbacca looks cute.
Have you ever been to the F&G Festival? They need a run, huh?

Yes, very nice b-day dinner. I was embarrassed to dance. You can tell by my awkwardness.

Pictures to come of the Easter Spring Fling at Epcot. If you want a sneak peak, you can check out kennythepirate's blog. The pictures are there.

Even with the funky stuff going on from the brand switch, he still is doing ok. He knows he's a little off.

It was a very special day at the science center for him. Thanks, dh did the sewing. I did the glueing and JJ supervised.

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Hope JJ is ok.
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Old 03-30-2013, 10:08 PM   #438
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Quote:
Originally Posted by lovethattink View Post
We think we figured out what's going on with JJ. It was time to get his medication refilled. The pharmacy is no longer carrying the same brand of generic for one of his meds. This is the medicine that when it was increased last time he had all kinds of seizures. I guess he is going through another adjustment. This time to a different brand.

We went to DHS today. It wasn't as busy there as I had expected. We went to check out the Legend of Captain Jack Sparrow. Also saw Beauty and the Beast, watched JTA, tried a PB&J milkshake, and went to Character Palooza!

JJ had to use the w/c today. He did walk some but he was too tired. He's been wanting to go back to bed since he woke up today. It's that medicine. But he'll adjust. It took about 2 weeks last time. Hopefully they'll keep the same generic brand in stock and we won't have to go through this again.







I understand about a dropping point.

That's great that you got to go to the local theme park. Glad you had fun.
Glad you figured out what was going on with JJ. Hope his adjustment improves.

Happy you guys still went to DHS and had a good time. Sorry he had to use the w/c more but at least you got to get out and have a good time.

We enjoy going to theme parks so I'm glad that we have one about 30 mins away and can have a great time!! Now just trying to figure out if I'll try bringing the kids by myself again!!
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Old 03-31-2013, 12:41 AM   #439
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I hate to hear about the twitching and hand tightening. It sounds like you've got the problem figured out though.

HAPPY EASTER!


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Old 03-31-2013, 07:50 AM   #440
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Because my husband has a strong bad reaction to a particular brand of generic (Sandoz), our pharmacy knows not to give it to him. They will actually get it from another local (i.e. competing) pharmacy for him if all they have available is Sandoz. I would ask your pharmacist to stick to one brand of generic and not change.

Although we are all fed the line that all generics are the same, they are not. They use different fillers and they may deliver differently once in the body. Once you find a generic that works, stick with it, don't let the pharmacist switch you around. It truly is easy enough for them to pick up the phone and get what you need quickly from another local pharmacy.

I'm sorry JJ has had to go through this med change. I hope he straightens out quickly.
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Old 03-31-2013, 10:11 AM   #441
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We tried to think of everything different. The temperatures are up. It's hit 80. The brand switch was another thing. Even sticking to the same brand, when it comes to his seizure meds, we notice problems between lot numbers too. His body is just so sensitive to the chemicals.

There is a drug interaction between his OCD med and the seizure med. That could be a part of it too.





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Originally Posted by ladylyons View Post
Glad you figured out what was going on with JJ. Hope his adjustment improves.

Happy you guys still went to DHS and had a good time. Sorry he had to use the w/c more but at least you got to get out and have a good time.

We enjoy going to theme parks so I'm glad that we have one about 30 mins away and can have a great time!! Now just trying to figure out if I'll try bringing the kids by myself again!!
Thanks. We had a great time.

I stopped taking JJ by himself to a park a couple years ago. It's just too difficult if something happens in the car, whether it be meltdown, seizure or something else. That's why I'm grateful I found someone to go with us to the science center last weekend. She sat with him. Everything was fine going to the science center, but coming from we were in bumper to bumper traffic. He got bored with his Leap Frog and annoyed. He started kicking my seat and she side-tracked him with games on her phone. Her brother has Autism so she is experienced with knowing when a meltdown is coming on and different techniques on how to calm him and side track him. She is amazing, I didn't have to say a word about kicking my seat and she didn't either. She just stepped in talked to him calmly and showed him what she was doing on her phone.



Quote:
Originally Posted by mickeystoontown View Post
I hate to hear about the twitching and hand tightening. It sounds like you've got the problem figured out though.

HAPPY EASTER!


Happy Easter! The tight fist was a new one for us. It was clenched so tight. This morning it was laughter and smiles in his sleep. I turned him on his side though, just in case.

Quote:
Originally Posted by pwdebbie View Post
Because my husband has a strong bad reaction to a particular brand of generic (Sandoz), our pharmacy knows not to give it to him. They will actually get it from another local (i.e. competing) pharmacy for him if all they have available is Sandoz. I would ask your pharmacist to stick to one brand of generic and not change.

Although we are all fed the line that all generics are the same, they are not. They use different fillers and they may deliver differently once in the body. Once you find a generic that works, stick with it, don't let the pharmacist switch you around. It truly is easy enough for them to pick up the phone and get what you need quickly from another local pharmacy.

I'm sorry JJ has had to go through this med change. I hope he straightens out quickly.
I had done a CE a few years back on medications for Epilepsy that said that a generic drug could be a certain percentage off from the brand drug. It said that if you switch from a generic that is on the low end to one on the high end that depending on the drug it could be potentially toxic. And on the other hand, switching from a high end to a low end it could be subtherapeutic. And as you mention the inactive ingredients can vary too.

Dh is my pharmacist and that was the only brand available for him to use. He gave me the heads up that it might taste different, but JJ never noticed the different flavor. Next time he won't wait til the last minute to fill it. He'll make sure we stick with the same manufacturer. He does this with the seizure med every time it's refilled.
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Old 03-31-2013, 11:46 AM   #442
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How the heck did I miss a thread change...no wonder why I have missed you. I just thought you were still having computer problems...now I have a lot to catch up on...

Goo-Joseph was just talking about JJ...wondering if he played skylanders...
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Old 03-31-2013, 11:48 AM   #443
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The beast asked you to dance...now how cool is that!
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Old 03-31-2013, 11:58 AM   #444
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I am hopelessly behind but I will catch up later... I wanted to stop by though and wish you all a Happy Easter.


For JJ:
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Old 03-31-2013, 03:17 PM   #445
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How the heck did I miss a thread change...no wonder why I have missed you. I just thought you were still having computer problems...now I have a lot to catch up on...

Goo-Joseph was just talking about JJ...wondering if he played skylanders...
This computer is nothing but problems. However, I am here. I need to pop over to your princess thread. I bet you all have made wonderful plans. How's your training going?

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The beast asked you to dance...now how cool is that!
Lol, yes.

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I am hopelessly behind but I will catch up later... I wanted to stop by though and wish you all a Happy Easter.


For JJ:
Happy Easter. I'll be sure to show him.
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Old 03-31-2013, 06:03 PM   #446
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This computer is nothing but problems. However, I am here. I need to pop over to your princess thread. I bet you all have made wonderful plans. How's your training going?
My training is having a lot of ups and downs...mostly downs but I am determined to run this with Ann.

We make ADRs tomorrow and booked our hotel last month...just have to head over there and check them out. I am hoping that we get a chance to DISmeet again...this time I am determined to do Disney by enjoying my time and NO COMMANDO plans!

I am still trying to figure out how I missed the change in threads...
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Old 03-31-2013, 06:41 PM   #447
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Originally Posted by lovethattink View Post
Thanks. We had a great time.

I stopped taking JJ by himself to a park a couple years ago. It's just too difficult if something happens in the car, whether it be meltdown, seizure or something else. That's why I'm grateful I found someone to go with us to the science center last weekend. She sat with him. Everything was fine going to the science center, but coming from we were in bumper to bumper traffic. He got bored with his Leap Frog and annoyed. He started kicking my seat and she side-tracked him with games on her phone. Her brother has Autism so she is experienced with knowing when a meltdown is coming on and different techniques on how to calm him and side track him. She is amazing, I didn't have to say a word about kicking my seat and she didn't either. She just stepped in talked to him calmly and showed him what she was doing on her phone.
Luckily the main problem I have to deal with is the meltdowns and the fighting between the kids. That's great you do have someone who can go with you and keep him distracted when other things don't work. We also had bumper to bumper traffic coming home so I can understand the joy of having someone to help. It's also great that she's got experience on how to help calm him down. Now I need to find someone like that!! I may try again but after today with my DH there we still had issues with Jeremy just not listening. That's our biggest fight right now with him.
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Old 03-31-2013, 07:32 PM   #448
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I stopped by to wish you a happy Easter this morning - and I don't see my post... My apologies!!! I hope you had a wonderful Easter.



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Old 03-31-2013, 08:10 PM   #449
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Thanks. Yes, he is getting around much better. Today we went to a museum and he didn't need the wheel chair at all. We left it in the car. We were only there a couple hours and he did fine. He sat down a few times, then kept going. Brings tears to my eyes and joy to my heart with how well he is doing lately.
YAY JJ! Seriously, you must be so proud of him, I am too and I have never even met him. I hope that continues.

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So I asked how I could purchase one for JJ. Sandra (ladylyons) worked some magic and yesterday a Star Wars super hero cape, personalized for JJ arrived in the mail! Thank you so much Sandra for working your magic.

I love the cape!! Didn't quote pictures because I didn't want to clog up the post, but it looks fantastic.

I loved all your BOG pictures, we had a great time there. We sat in the West Wing, I can see why JJ wouldn't like it, but we really enjoyed it. I think your picture of the rose is very good, it is pretty difficult to photograph, my pictures all came out terrible. Also, LOVE LOVE LOVE that you got JJ a "celebrating" pin. One month seizure free- what a great reason to celebrate!

Also enjoyed reading about the Ashley Eckenstein (may have spelled that wrong) meet. She sounds like a wonderful person, as does JJ's friend from theater. Sorry that Clone Wars got cancelled
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Old 04-01-2013, 11:00 AM   #450
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I hope you had a wonderful Easter!! I hope that JJ is feeling better. You can tell him that Trev LOVES his Yoda Easter basket!! That is the only basket Trev wanted to use all weekend for Easter egg hunts He was wearing his Vader hat too and he was getting asked where he got it. He said his friend in Florida gave it to him

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