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Post by lahdeedah on Nov 2, 2018 13:14:23 GMT -6
Feel better. weddingflamingo Enjoy!! tgrimes Sorry you still don’t have real answers. I can’t remember what happened with the allergist appointment? Did you go? If not, would that yield answers at all at this point? snoopmommymom Glad O seems to be doing well after the procedure! Hopefully this weekend goes great and he remains in good spirits. |
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Post by lahdeedah on Nov 2, 2018 13:16:54 GMT -6
Hi! I ended up staying at home today because our machine was still down. I got the rest of the walls painted, had lunch, and now just sitting watching TV and catching up here before having to get the boys later. We have a very busy day tomorrow so I’m relaxing while I can.
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tgrimes
Diamond
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Post by tgrimes on Nov 2, 2018 13:20:04 GMT -6
Feel better. weddingflamingo Enjoy!! tgrimes Sorry you still don’t have real answers. I can’t remember what happened with the allergist appointment? Did you go? If not, would that yield answers at all at this point? snoopmommymom Glad O seems to be doing well after the procedure! Hopefully this weekend goes great and he remains in good spirits. The immunologist did allergy testing through the blood work. They tested for several different kinds of mold, different types of grass, different trees, cockroaches and mouse urine. Nothing came up. |
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tgrimes
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Post by tgrimes on Nov 2, 2018 13:26:25 GMT -6
He said because of his age and the fact that he may need these ABX in the future, he wouldn't want him to become resistant to them by placing him on preventative ABX. He also said it was my call though. I have a pedi appt next week so I'm going to ask her opinion, too. He basically said there's no explanation for why his total immunoglobulin levels are low. Thoughts? If I send you screen shots of his labs could you look at it and tell me what you think? You know more about this than anyone I know right now so if you think I should do something else, please tell me. So first of all, you're definitely doing everything right. It's super frustrating and sometimes downright discouraging because it's hard to get in front of a doctor that doesn't dismiss you or condescendingly tell you there's nothing of concern. You've already accomplished that, and it's huge. That required tons of work and persistence on your part. Personally, yes, I would hold off on prenventive ABX. Now, I do have some very strong ABX I keep on hand because I have been explicitly directed to do so if I experience certain recurring issues I can use those before my infection becomes threatening. But I don't just stay on them regularly. You can send me his labs and I can compare them to mine, although I'm not sure what it can tell us. Can't hurt to look. As far as why his total IG levels are low, I would ask if he thinks he has effectively ruled out a primary immunodeficiency at this time. Is he willing to entertain that H has specific antibody deficiency? Also, I know this gets confusing here, but gene expression changes over time so even if they say no, I wouldn't completely let it go if he keeps getting sick. What we were told for Dude and X is that it might not show up on tests now, but very well might as they get older. When I get back to the office I’ll screen shot them to you. |
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Post by dapostrophe on Nov 2, 2018 13:30:04 GMT -6
joelies I'm way behind and just catching up but I've been meaning to PM you. Remind me if I lose track again!
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jewels
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Post by jewels on Nov 2, 2018 13:31:32 GMT -6
snoopmommymom , hope the tylenol relieves his pain! And just a reminder to stay ahead of it (ie redose before the last dose wears off!) joelies I hope the therapist helps and your H really tries to look at your perspective. tgrimes I agree with others, hopefully H is just getting all his sicknesses out of the way now  But i can only give Tylenol every 4 hours and it starts wearing off before the 4 hours is over. Oh man I'm sorry. Honestly, and take this as you will, I am NOT a dr or anything, but personally I would probably give it at like 3.5 hours for today. They said you can't give Motrin, right? |
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Post by snoopmommymom on Nov 2, 2018 13:36:45 GMT -6
But i can only give Tylenol every 4 hours and it starts wearing off before the 4 hours is over. Oh man I'm sorry. Honestly, and take this as you will, I am NOT a dr or anything, but personally I would probably give it at like 3.5 hours for today. They said you can't give Motrin, right? Yea he said no Motrin. |
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wedding
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Post by wedding on Nov 2, 2018 13:55:23 GMT -6
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tgrimes
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Post by tgrimes on Nov 2, 2018 14:13:26 GMT -6
But i can only give Tylenol every 4 hours and it starts wearing off before the 4 hours is over. Oh man I'm sorry. Honestly, and take this as you will, I am NOT a dr or anything, but personally I would probably give it at like 3.5 hours for today. *snip I'd do this, too. But I'm a rebel. |
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Post by peachsmama on Nov 2, 2018 14:35:06 GMT -6
Oh man I'm sorry. Honestly, and take this as you will, I am NOT a dr or anything, but personally I would probably give it at like 3.5 hours for today. *snip I'd do this, too. But I'm a rebel. I would as well just because if you don't stay on top of the pain he could start refusing food/drink and that would be bad. |
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lfig
Sapphire
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Post by lfig on Nov 2, 2018 14:37:44 GMT -6
Oh man I'm sorry. Honestly, and take this as you will, I am NOT a dr or anything, but personally I would probably give it at like 3.5 hours for today. *snip I'd do this, too. But I'm a rebel. This is what I'd do too. Also, how much are you giving him? If doing liquid, I would always give S 5mL based on her weight (30lbs) and what the bottle said (for up to 35lbs). But at the Hospital they were giving her 7.5 mL and so when we went home I started giving that. |
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tgrimes
Diamond
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Post by tgrimes on Nov 2, 2018 14:40:43 GMT -6
I'd do this, too. But I'm a rebel. This is what I'd do too. Also, how much are you giving him? If doing liquid, I would always give S 5mL based on her weight (30lbs) and what the bottle said (for up to 35lbs). But at the Hospital they were giving her 7.5 mL and so when we went home I started giving that. This is a good point. I still have ggandlee's dosage chart if you want me to calculate what it should be with his weight. snoopmommymom |
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Post by snoopmommymom on Nov 2, 2018 15:40:34 GMT -6
I'd do this, too. But I'm a rebel. This is what I'd do too. Also, how much are you giving him? If doing liquid, I would always give S 5mL based on her weight (30lbs) and what the bottle said (for up to 35lbs). But at the Hospital they were giving her 7.5 mL and so when we went home I started giving that. I’m giving 7.5 ml based on the chart on the side of the bottle. He’s perked up now but it took me 40 min (and 40 min of him crying) to get him to take the meds. Will definitely give it at 3.5 hours next time. |
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Post by snoopmommymom on Nov 2, 2018 15:40:45 GMT -6
This is what I'd do too. Also, how much are you giving him? If doing liquid, I would always give S 5mL based on her weight (30lbs) and what the bottle said (for up to 35lbs). But at the Hospital they were giving her 7.5 mL and so when we went home I started giving that. This is a good point. I still have ggandlee's dosage chart if you want me to calculate what it should be with his weight. snoopmommymom Yes please |
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tgrimes
Diamond
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Post by tgrimes on Nov 2, 2018 15:41:25 GMT -6
This is a good point. I still have ggandlee 's dosage chart if you want me to calculate what it should be with his weight. snoopmommymom Yes please How much does he weigh? |
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Post by snoopmommymom on Nov 2, 2018 15:44:32 GMT -6
44 lbs i think. Edit: 45lbs. |
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tgrimes
Diamond
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Post by tgrimes on Nov 2, 2018 15:46:00 GMT -6
44 lbs i think. Edit: 45lbs. hold please. |
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wedding
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Post by wedding on Nov 2, 2018 15:49:24 GMT -6
And I think I said it before snoopmommymom but make sure to wake him at night to dose. Also it sounds counterintuitive but C actually swallows pills way better than liquid. It might be worth a try if the liquid is a huge battle. |
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tgrimes
Diamond
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Post by tgrimes on Nov 2, 2018 15:49:41 GMT -6
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tgrimes
Diamond
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Likes: 139,261
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Post by tgrimes on Nov 2, 2018 15:50:02 GMT -6
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wedding
Emerald
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Post by wedding on Nov 2, 2018 16:19:32 GMT -6
Do you have that puppy yet mwhip? |
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Post by dapostrophe on Nov 2, 2018 16:56:59 GMT -6
Hi Ladies. This week has almost killed me dead. I am way behind, but I miss you. I'll be back when I am no longer a hollowed out shell of my former self. There will be wine involved.
See you on the flip side 😉
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chrisy01
Emerald
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Post by chrisy01 on Nov 2, 2018 17:31:53 GMT -6
Hi crazy at work again. I’m still there actually. snoopmommymom I’m glad he’s doing ok tgrimes that sucks. I wish they can give you real answers. |
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mwhip
Opal
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Post by mwhip on Nov 2, 2018 18:24:18 GMT -6
Do you have that puppy yet mwhip? Yes! I got home with her about 5:15. She had one accident already, but it was right after we got home and she was very excited. Everytime Ive taken her since, she has gone potty.   |
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Post by snoopmommymom on Nov 2, 2018 18:51:10 GMT -6
mwhip super cute! wedding I’m not going to wake him tonight. Even when i gave him medicine at 3.5 hrs after last dose he cried at every swallow. No way do i want to do that every 3.5 hrs through the night. Maybe I’ll eat my words tomorrow. When did C turn a corner in his recovery after his surgery?
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Post by snoopmommymom on Nov 2, 2018 18:53:23 GMT -6
I now realize that the surgery was the easy part. The pain management while he recovers is much harder. He’s not talking and lots of drooling as he tries not to swallow. When he does i can tell he’s in a ton of pain. Hoping tomorrow is a little bit better for him.
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tallb
Amethyst
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Post by tallb on Nov 2, 2018 19:12:57 GMT -6
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Post by lahdeedah on Nov 2, 2018 19:44:25 GMT -6
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trtlcrzy
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Post by trtlcrzy on Nov 2, 2018 20:29:35 GMT -6
mwhip super cute! wedding I’m not going to wake him tonight. Even when i gave him medicine at 3.5 hrs after last dose he cried at every swallow. No way do i want to do that every 3.5 hrs through the night. Maybe I’ll eat my words tomorrow. When did C turn a corner in his recovery after his surgery? He may wake up every 3-4 hours on his own if he’s in pain. Hopefully the next few days go quickly and he’s back to normal. |
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trtlcrzy
Moderator
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Post by trtlcrzy on Nov 2, 2018 20:36:22 GMT -6
My lower back still hurts. I was able to run a couple of errands this evening but now I’m paying for it. I hope I wake up feeling much better in the morning because I don’t want to be dealing with this during the party tomorrow night.
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