cagoldi
Opal
Vegan Demon
Posts: 8,349 Likes: 53,471 
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Post by cagoldi on Jan 23, 2019 11:52:06 GMT -6
Totally scream worthy, lfig. I’m sorry. Hope they have some other ideas that might help. |
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Sunny41
Sapphire
Posts: 4,704 Likes: 22,250
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Post by Sunny41 on Jan 23, 2019 11:53:32 GMT -6
I just learned that Necco candy went bankrupt last year and there are no more sweetheart candies But, but, but... No! They were bought by another company and will be back next year or you can get knock offs |
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guster
Emerald
Posts: 11,536 Likes: 67,147
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Post by guster on Jan 23, 2019 11:58:25 GMT -6
That’s terrible, lfig. I hope the doctor has an idea to help you out. |
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guster
Emerald
Posts: 11,536 Likes: 67,147
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Post by guster on Jan 23, 2019 11:59:11 GMT -6
I just learned that Necco candy went bankrupt last year and there are no more sweetheart candies I thought I bought the real ones this year, but I just went to left and they’re the Brachs’ ones. |
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trtlcrzy
Moderator 
Posts: 10,085 Likes: 58,458
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Post by trtlcrzy on Jan 23, 2019 12:01:09 GMT -6
I tried these and they were a pain in the ass. I've never tried them. Our sheets have deep pockets. Mine are supposed to have deep pockets but 🤷🏻♀️ |
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trtlcrzy
Moderator
Posts: 10,085 Likes: 58,458
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Post by trtlcrzy on Jan 23, 2019 12:02:55 GMT -6
That sucks so hard lfig. Insurance companies are the worst. |
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Post by wineallthetime on Jan 23, 2019 12:05:44 GMT -6
lfig, omg I'd totally scream. I'm sorry 
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tgrimes
Diamond
Posts: 27,968
Likes: 139,249
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Post by tgrimes on Jan 23, 2019 12:14:57 GMT -6
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tgrimes
Diamond
Posts: 27,968
Likes: 139,249
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Post by tgrimes on Jan 23, 2019 12:15:28 GMT -6
I've never tried them. Our sheets have deep pockets. Mine are supposed to have deep pockets but 🤷🏻♀️ Lol. Time to get new sheets! |
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lfig
Sapphire
Posts: 4,464 Likes: 34,089
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Post by lfig on Jan 23, 2019 12:15:58 GMT -6
lfig, I'm sorry. Did they cite a reason for denial? Yes, apparently that drug is considered experimental or investigational for intractable epilepsy (her diagnosis). I just spoke to one of the nurses and she said that basically, there’s not much more we can do at this point for that med. they think down the road it will become approved for intractable epilepsy. But that doesn’t help us now. So the nurse is going to talk to the dr about other options. Either an increase in one of the 4 meds she’s on or trying something new. |
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tgrimes
Diamond
Posts: 27,968
Likes: 139,249
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Post by tgrimes on Jan 23, 2019 12:17:33 GMT -6
His tubes were dry for the first time ever. The ENT said It may not last long since he’s really snotty right now. But he’s never seen him with dry ears. Lol. They did another hearing test but we couldn’t get an actual results. Every time she placed that thing in his ear it would give an error message so it just wouldn’t lay right for her to conduct the test. She said sometimes that happens and kids with tubes. So we’ll go back in three months to try it again. I had him look over his lab work after revaccinating with the Prevnar. He told me to ask the immunologist about selective immunoglobulin deficiency and immunoglobulin anemia. Remind me whether or not they already ruled out Specific Antibody deficiency? Nope. That one is already on my list to ask about though. Our follow up isn't till Feb 28, but I'm going to email him today to ask about all of these. |
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slenle
Sapphire
Posts: 3,181 Likes: 26,368
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Post by slenle on Jan 23, 2019 12:19:46 GMT -6
Ugh. I’m sorry lfig. How frustrating! |
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kim22
Amethyst
Posts: 5,504 Likes: 36,604
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Post by kim22 on Jan 23, 2019 12:22:35 GMT -6
lfig I’m so sorry, probably far fetched but are there any clinical trials on that drug you can apply for?
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lfig
Sapphire
Posts: 4,464 Likes: 34,089
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Post by lfig on Jan 23, 2019 12:29:29 GMT -6
lfig I’m so sorry, probably far fetched but are there any clinical trials on that drug you can apply for? I think they are past the clinical trial stage for that drug. |
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klong11
Ruby
Posts: 15,002 Likes: 86,174
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Post by klong11 on Jan 23, 2019 12:34:25 GMT -6
lfig, that is really annoying. I hope they are able to find something the insurance will be willing to cover.
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klong11
Ruby
Posts: 15,002 Likes: 86,174
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Post by klong11 on Jan 23, 2019 12:34:52 GMT -6
My taxes are done.
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cagoldi
Opal
Vegan Demon
Posts: 8,349 Likes: 53,471
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Post by cagoldi on Jan 23, 2019 12:39:07 GMT -6
Remind me whether or not they already ruled out Specific Antibody deficiency? Nope. That one is already on my list to ask about though. Our follow up isn't till Feb 28, but I'm going to email him today to ask about all of these. I only ask because with specific antibody deficiency, the ear/sinus/respiratory infections are common and frequent. (IGG deficiency) With the IGA deficiency, then they are more likely to have frequent GI problems/infections. Worth them to check all though, I guess. Hope that your questions steer them in the right direction. Fingers crossed for you guys. |
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wedding
Emerald
Posts: 14,402 Likes: 77,820
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Post by wedding on Jan 23, 2019 12:40:17 GMT -6
lfig, that is so upsetting. I hope they can come up with an alternative.
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vino
Opal
Posts: 9,054 Likes: 56,450
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Post by vino on Jan 23, 2019 12:53:37 GMT -6
I'm glad you got some answers yesterday cagoldi , hopefully scheduling the therapies works with your daily schedules. How did the boys do in the bunk beds? Did Miss P sleep well after her first daycare day? I'm so sorry lfig , how frustrating! |
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Post by flamingo on Jan 23, 2019 13:36:52 GMT -6
Oh my gosh lfig that’s beyond frustrating. Rant all you want. I’ve heard of that happening before. If you do opt to appeal I will cross my fingers that it somehow is approved, maybe your doc could put in a personal request if s/he hasn’t already. |
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Post by dapostrophe on Jan 23, 2019 13:38:21 GMT -6
Hi Ladies! Busy day over here as we prepare for H to go out of town for 4 days for a hockey tournament. He asked if he should leave early tomorrow and I listed off all the things we still needed done before he left...clean house, laundry done (and put away, otherwise it doesn't count), pinewood derby car completed...and all of this is on top of a sports physical for the teen and 3 y/o well child for Theo tonight. Plus, QT with his wife this evening of course (not cutting that one out, sorreh). I was like you decide if you can leave early, it's fine with me if we get everything done. He said he'll either stay up until midnight or leave work early tomorrow to finish up before he goes. Atta boy 😁 Wine and fridge are stocked and I picked up my books from the library today, so I think I've done all my important things.  |
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Post by dapostrophe on Jan 23, 2019 13:41:11 GMT -6
lfig That sounds incredibly frustrating, I'm sorry. Scream away, I don't blame you one bit. FX a solution presents itself, that sounds like a game changer.
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Post by dapostrophe on Jan 23, 2019 13:43:16 GMT -6
Hang in there cagoldi. You've got a lot of balls in the air, and there's bound to be a rough day here and there. We are here for you! |
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lfig
Sapphire
Posts: 4,464 Likes: 34,089
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Post by lfig on Jan 23, 2019 14:00:28 GMT -6
So finally heard from the dr and she wants to hold off on med increase for now because her sleep study still showed moderate sleep apnea despite the removal of tonsils and adenoids. So she is scheduling us with a sleep specialist and thinks will see a decrease in seizures if we can get that taken care of. Because the majority of her seizures are within an hour or two of her waking up. So they think that she’s not getting quality sleep. Which I can buy. Sleep has always been a big trigger for her seizures.
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joelies
Sapphire
You must chill
Posts: 4,686 Likes: 33,805
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Post by joelies on Jan 23, 2019 14:19:17 GMT -6
It's fractured. I think I'm in shock, I really didn't see that coming.
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nam2013
Emerald
Posts: 13,885 Likes: 69,375
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Post by nam2013 on Jan 23, 2019 14:22:43 GMT -6
It's fractured. I think I'm in shock, I really didn't see that coming. 😱 oh no!!! |
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tgrimes
Diamond
Posts: 27,968
Likes: 139,249
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Post by tgrimes on Jan 23, 2019 14:23:00 GMT -6
It's fractured. I think I'm in shock, I really didn't see that coming. Shit! Is it in your foot or your ankle? |
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klong11
Ruby
Posts: 15,002 Likes: 86,174
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Post by klong11 on Jan 23, 2019 14:28:31 GMT -6
That sucks joelies! Did you get a walking boot or do you get to use a knee scooter? |
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lfig
Sapphire
Posts: 4,464 Likes: 34,089
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Post by lfig on Jan 23, 2019 14:28:36 GMT -6
It's fractured. I think I'm in shock, I really didn't see that coming. Oh no! I’m so sorry! What’s the treatment? Boot? Cast? Lots of Alcohol? |
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vino
Opal
Posts: 9,054 Likes: 56,450
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Post by vino on Jan 23, 2019 14:32:06 GMT -6
It's fractured. I think I'm in shock, I really didn't see that coming. Shit!!! |
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