So, to recap for anyone that hasn't kept up with us, in September Emily had the port placed. In October and November she was inpatient for staph in the port for three weeks. She was home for about a week when she got the sinus infection. After trying all of the normal antibiotics, after having her sinuses scraped, then re-suctioned two weeks later, another 31 days on Augmentin, it's back. We went to our pediatrician on Monday. She ordered Zithromax, despite my protests. Our infectious disease doctor at Shands had said that Zithromax doesn't really help sinus infections and it's a waste to try. So, I had called them to see what else we could do. They called in a prescription for Ceftin (Cefuroxime) for her. She had her first dose Monday night. She was fine that night and Tuesday. Yesterday I was called to come pick her up from school. Her stomach was killing her. So, because I am a pharmacy by now, I had some Zofran to give her. About a half hour later she vomited. So, I ran and got the Zithromax anyway.
When I spoke to the ID docs, they had said that really if the Ceftin didn't work then we'd probably have to have a new culture. That would mean dealing with the ENT's again, but ours doesn't really seem to understand the whole immune suppression thing. They were under the impression that ten days of antibiotics would be enough and they wouldn't believe the infection was still there until they cultured it again. So I'm not too thrilled about the idea of talking to them, but ID had really only gotten into this mess because they work so closely with our rheumies. So what to do? We have another appointment with our pedi today, but I'm not really expecting much. Maybe if I just tell people "Ok, her Remicade wipes out her T-cells AND her Rituxan wipes out her B-cells", maybe they'll understand better? This is why I really need to become a doctor. Soooo frustrating!
In the meantime, we've been tapering her Prednisone down. Her doctor wanted her down to 3mgs last month, but because her thighs kept hurting we didn't want to jump into it. We just spaced it out more and tried to "trick" her body into accepting it by doing 3mgs for two days then back up to 3.25 mgs for two days. We did that for about two weeks. She seems to be accepting it well. Her thighs and knees have been stiff and tired, telling me that nothing is under control yet, her ankle has been hurting and she's having back issues. I think the back issues are from the steroid taper. Our PT explained that since she went from no curve in her back to too much curve from the steroid belly, her back would be affected when the weight started to drop off. Even getting better hurts with these damn diseases!!! Then again, she also doesn't think her Remicade is working. I hate to mention that to the doctors because we are running out of options. I believe that our only other option would be Actemra, but knowing so many other kids that were on that and failed it, I don't really consider that a serious option.
The bright light in all of this is that I told my husband the other night that I WILL be homeschooling them next year. We will find a way to make it work. She has missed 57 days of school this school year, mostly due to her infections and hospitalizations. Because of my work schedule, she knew that she had to go to school unless she was contagious or really just couldn't make it. She knew that she could call me out of work, but I had to at least try to go to work. She would have missed a LOT more if I didn't have to work. So, we're going to sacrifice. If I can work ten hour days on Saturday and Sunday then we can make it, and they'll be home with me. Zachary has been begging me to homeschool him for the whole year! He's doing well, but he is definitely getting sick more often since starting Enbrel. He's had some headaches but that's about it.
Please, let me know what the heck you would do on the doctor situation!!! I am lost for once! Thank you!
Showing posts with label Enbrel. Show all posts
Showing posts with label Enbrel. Show all posts
Thursday, April 12, 2012
Friday, February 10, 2012
Em's surgery & a sick boy
Well, for those not following the saga on Facebook, we finally got to a point of panic with Emily's sinus infection. Her surgery date was February 22, and with every day that passed by it became more and more clear that she would not make it that far ahead. The Septra that her pediatrician had called in was doing nothing but making her worse. I took her back to the pedi on Monday, panicking because I just didn't know what to do. How could she continue to go to school, how could I get to work every day, if she felt so ill? 16 days was a long wait. So I brought her to the pedi, hoping that she would prescribe Clindamycin since that had worked pretty well the first time that she used it. She didn't like that idea. Apparently, Clinda can be rough on the joints, but also it can lead to an increased risk of C. difficile (Clostridium difficile- a bacterium that can cause severe diarrhea that doesn't improve and can be contagious.) Awesome. So we left with another prescription for Augmentin, which had stopped working 2 weeks before, and a low maintenance dose of Septra, which also wasn't working. To say that I had little faith in this plan was akin to saying that a shot of Prozack could fix it. I just knew better. I have come to this point where I just KNOW things. It may make no sense, but I'm usually correct, and it usually isn't good. My intuition with medical is extremely accurate. Imagine how panicked I was. So, my brain working furiously, I'm thinking "well, maybe if I go to the Children's hospital I can get an antibiotic IV for her". I didn't want to undermine our doctor though, so I called her to see if that would be a better idea. Not liking her answer, I called our ENT. I asked them the same question, and I asked about their cancellation list. I begged them for anything that I could do to keep her going until the 22nd', explaining the situation. When you have a child on 4 immune suppressors, it tends to panic the doctor's sometimes.
About 2 hours after my conversation with the office, they asked me if I could bring her in on the 9th. HECK YEAH! I would find a way to make it work. So she had her surgery yesterday around 2 P.M. She was so excited about the prospect of surgery. You know you have a very sick child when she wants to have surgery. My brave little girl didn't utter the "I'm kinda scared" until we were on the way there. And even then, she was still happy about it. The only crimp that we had was that they didn't have a way to access her port. They had to give her an IV in her hand, which she really hates. Fortunately, she was warned and they do it under sedation, but she still cried about it. The thought of an IV in her hand was more scary than surgery, and she's had surgeries before!
Today she is resting semi-comfortably at home. She is annoyed at all of the drainage, but that's because her sinuses were much worse than what the CT scans showed. The doctor was shocked at how badly her sinues were packed, and he said that no antibiotics could have cleared that out without help. In other words, it's a damn good thing we got her in when we did. So is a little upset because she can't breathe out of her nose, she said she still feels sick, but at least we're on the right track now. The ENT said that we should have the culture results back by Monday. That will tell us which antibiotic will help her now that the crap is all out of there.
And my son is a little sick. Not like that bad, but sick. His last antibiotic didn't clear his infection completely. He has some residual drainage also, and his asthma is acting up a bit. She prescribed Augmentin for him, and I'm going to withhold his Enbrel and Methotrexate this week. I hate to do that, but I would really hate for him to go through what his sister is going through more. Take one step forward, two steps back. All in all, I think we're on the right course. At least there is a plan in place and things in motion.
About 2 hours after my conversation with the office, they asked me if I could bring her in on the 9th. HECK YEAH! I would find a way to make it work. So she had her surgery yesterday around 2 P.M. She was so excited about the prospect of surgery. You know you have a very sick child when she wants to have surgery. My brave little girl didn't utter the "I'm kinda scared" until we were on the way there. And even then, she was still happy about it. The only crimp that we had was that they didn't have a way to access her port. They had to give her an IV in her hand, which she really hates. Fortunately, she was warned and they do it under sedation, but she still cried about it. The thought of an IV in her hand was more scary than surgery, and she's had surgeries before!
Today she is resting semi-comfortably at home. She is annoyed at all of the drainage, but that's because her sinuses were much worse than what the CT scans showed. The doctor was shocked at how badly her sinues were packed, and he said that no antibiotics could have cleared that out without help. In other words, it's a damn good thing we got her in when we did. So is a little upset because she can't breathe out of her nose, she said she still feels sick, but at least we're on the right track now. The ENT said that we should have the culture results back by Monday. That will tell us which antibiotic will help her now that the crap is all out of there.
And my son is a little sick. Not like that bad, but sick. His last antibiotic didn't clear his infection completely. He has some residual drainage also, and his asthma is acting up a bit. She prescribed Augmentin for him, and I'm going to withhold his Enbrel and Methotrexate this week. I hate to do that, but I would really hate for him to go through what his sister is going through more. Take one step forward, two steps back. All in all, I think we're on the right course. At least there is a plan in place and things in motion.
Wednesday, January 25, 2012
ENT and Enbrel!
Ok, so just so everyone can see the crazy, up/down days that we have, I will post a breakdown of the day. This is why we are so used to dealing with stress.
8 A.M.- The kids don't want to get up (and neither do I!) but we get up & ready to go.
9:30 A.M.- We leave and take Zachary to school.
10:20 A.M.- We arrive at the ENT. We wait for about an hour, which is fine because we were so early.
11:20 A.M.- We get set up with the nurse. Being a mom now accustomed to the things that doctors need I have a typewritten list of meds that Emily is currently on, a print out of all prescriptions taken since the start of the infection with the antibiotics highlighted in yellow, along with CT scans and the radiology reports.
11:30 A.M.- The doc comes in with the scans. He starts showing us how the sinuses should look and how Emily's are not performing where they should be. The Ethmoid sinus looks good from a frontal view but not so much as you go farther back. He throws out two ideas. One is that we can do the culture that our pedi requested under anesthesia to find out which antibiotics will work best against this. The second option is that we can do exactly the same thing, plus add on another ten minutes to scrape the junk out of the inner sinuses. That is the best option to me. If that stuff has been hanging out for God knows how long, it may not come out on its own, and then we'd have to get the scraping done anyway.
Noon- We're talking to a nurse, in hopes of setting up the procedure, but with all of Emily's medicines and such, she doesn't want to do it without consulting our rheumy group. They also want to hold off on prescribing a new antibiotic until they talk to our rheumy's, which leaves me a little nervous.
12:30 P.M.- A nice quiet lunch
1 P.M.- A quick visit to the park! Not that she runs around, but it's nice to go be closer to nature.
2:30 P.M.- We head to my parents house for a visit. During said visit my mom again discusses how more of her colon is blocked and she's afraid that they won't be able to do the 2nd colonoscopy. Also, my father feels tired suddenly so he goes to take his blood pressure. It turns out to be 80/37. Ouch. Mom gets him some potato chips to bring his pressure up and he's good. I take some time to order a bunch of prescription refills.
4:30 P.M.- We head to the school to get Zachary. He tells me how his throat has been hurting all day. Once home I pull out my scope (don't hate) and look down his throat. Bright red. Great.
5 P.M.- While I really want to nap, I realize that I still need to call the pharmacy about Zach's Enbrel. It had appeared in my history, then disappeared a day later. It had also showed that our pay portion was $2100, so I was a lot panicked. I had called a month ago to give them our Enbrel Support info, and I had emailed it as well.It turns out that they LOST that info. I was absolutely thrilled to find out that his Enbrel will be FREE!!! Best. News. Of. The. Day. True story.
5:30 P.M.- I decide to see if my school's website could tell me why I haven't seen any more info about my financial aid. I had electronically signed the paperwork, verified everything and returned it all. I see NO SIGN of that. I once had an amount that I was supposed to be allowed and now I see nothing indicating that I was ever approved. Hmmm. I make a mental note to call on Tuesday when my son vomits. He hadn't told me that his stomach hurt, just like he didn't tell Daddy that his throat hurt. Now I'm really in a panic. Need to take yet another day off of work, make another doctor appointment. I have Omnicef at home, but with him starting Enbrel and needing his Methotrexate on Friday, I really can't take chances. So, I call in to work for tomorrow.
7 P.M.- I realize that I need to scan a bunch of documents relating to their healthcare and send it to the school. I email both kids teacher's.
See the up & down pattern? Welcome to a typical day in my life. And I have it easy compared to the kids. They still have to go to school, pretend that they are normal kids, do their normal work, then have their meds, their shots, the infusions and the constant doctor appointments and tests. Thank you Lord for making children resiliant!!!
8 A.M.- The kids don't want to get up (and neither do I!) but we get up & ready to go.
9:30 A.M.- We leave and take Zachary to school.
10:20 A.M.- We arrive at the ENT. We wait for about an hour, which is fine because we were so early.
11:20 A.M.- We get set up with the nurse. Being a mom now accustomed to the things that doctors need I have a typewritten list of meds that Emily is currently on, a print out of all prescriptions taken since the start of the infection with the antibiotics highlighted in yellow, along with CT scans and the radiology reports.
11:30 A.M.- The doc comes in with the scans. He starts showing us how the sinuses should look and how Emily's are not performing where they should be. The Ethmoid sinus looks good from a frontal view but not so much as you go farther back. He throws out two ideas. One is that we can do the culture that our pedi requested under anesthesia to find out which antibiotics will work best against this. The second option is that we can do exactly the same thing, plus add on another ten minutes to scrape the junk out of the inner sinuses. That is the best option to me. If that stuff has been hanging out for God knows how long, it may not come out on its own, and then we'd have to get the scraping done anyway.
Noon- We're talking to a nurse, in hopes of setting up the procedure, but with all of Emily's medicines and such, she doesn't want to do it without consulting our rheumy group. They also want to hold off on prescribing a new antibiotic until they talk to our rheumy's, which leaves me a little nervous.
12:30 P.M.- A nice quiet lunch
1 P.M.- A quick visit to the park! Not that she runs around, but it's nice to go be closer to nature.
2:30 P.M.- We head to my parents house for a visit. During said visit my mom again discusses how more of her colon is blocked and she's afraid that they won't be able to do the 2nd colonoscopy. Also, my father feels tired suddenly so he goes to take his blood pressure. It turns out to be 80/37. Ouch. Mom gets him some potato chips to bring his pressure up and he's good. I take some time to order a bunch of prescription refills.
4:30 P.M.- We head to the school to get Zachary. He tells me how his throat has been hurting all day. Once home I pull out my scope (don't hate) and look down his throat. Bright red. Great.
5 P.M.- While I really want to nap, I realize that I still need to call the pharmacy about Zach's Enbrel. It had appeared in my history, then disappeared a day later. It had also showed that our pay portion was $2100, so I was a lot panicked. I had called a month ago to give them our Enbrel Support info, and I had emailed it as well.It turns out that they LOST that info. I was absolutely thrilled to find out that his Enbrel will be FREE!!! Best. News. Of. The. Day. True story.
5:30 P.M.- I decide to see if my school's website could tell me why I haven't seen any more info about my financial aid. I had electronically signed the paperwork, verified everything and returned it all. I see NO SIGN of that. I once had an amount that I was supposed to be allowed and now I see nothing indicating that I was ever approved. Hmmm. I make a mental note to call on Tuesday when my son vomits. He hadn't told me that his stomach hurt, just like he didn't tell Daddy that his throat hurt. Now I'm really in a panic. Need to take yet another day off of work, make another doctor appointment. I have Omnicef at home, but with him starting Enbrel and needing his Methotrexate on Friday, I really can't take chances. So, I call in to work for tomorrow.
7 P.M.- I realize that I need to scan a bunch of documents relating to their healthcare and send it to the school. I email both kids teacher's.
See the up & down pattern? Welcome to a typical day in my life. And I have it easy compared to the kids. They still have to go to school, pretend that they are normal kids, do their normal work, then have their meds, their shots, the infusions and the constant doctor appointments and tests. Thank you Lord for making children resiliant!!!
Wednesday, December 14, 2011
Illness Update
While I told Emily Monday night that there was absolutely no way that I could stay home Tuesday, she was so miserable Tuesday morning that I caved. Yes, I'm very worried about keeping my job, but what can I do? She is so sick. She functions so well, but no doubt she is still very sick. For a girl whose temp is normally about 97F, today she was 101F in the doctor's office- and that's after being on Omnicef since Sunday. According to my bean, it hasn't helped at all.
The weird thing is that she was fine until Saturday. I know I wrote this in my update on Sunday, but she had a 10 day antibiotics course that ended on December 7. I believed that this was her sinus infection coming back because she had her Remicade (immune suppressing infusion) on December 5th. So, it's a good thing that I listened to the doctor and made an appointment for bright and early today.
Our pediatrician believes that she may have multiple infections causing this. She added Clindamycin in addition to the Omnicef, and she ordered a sinus CT. Our health insurance apparently needs a prior authorization before we can have it done (because a doctor's order just isn't good enough these days!), so we had no sooner time slot than Saturday. Hopefully it will be read before Monday. I already had an appointment for Gir made for that day; I just added Emily on to that one. We have been at our pediatrician more in the past three weeks than I can remember at this point.
I'm still working on getting my FMLA leave to go through. Apparently our doctor's didn't fax in Emily's stuff. I haven't been able to get a hold of them to find out if they didn't get my fax, if it was thrown aside and forgotten, or if perhaps it needs to go to some other department. I have no idea. I really need to get that done. Much as I would love to be a stay-home mom, it doesn't really fit in the budget. Oh, how lovely it would be to not have to worry how to get a bazillion appointments done around work, how nice it would be to not have to feel guilty every time I went to work when one of the kids needed to stay home, or to not have to feel guilty for calling into work when they are very sick. Many days it seems that, no matter what I do, by doing the "right" thing for one person, I'm ticking off somebody else. Thank God our school understands with Emily. I so love them. <3
It's a little more delicate with Zach right now. For one thing, anyone that doesn't know him likely worries that he is contagious when they see him. He is truly a mess. There is nothing that we can do except wait for the Enbrel and hope for the best. Well, that's not 100% true. I could slather him with Aquaphor all over, but he really, really hates that. It's greasy, he sticks to everything and he's uncomfortable. That's been the only thing that we find that works, and he begs us to not do it. We figure, if he hates it enough that he would rather walk around feeling miserable, it must be pretty bad. We have found a few things that help for his head. Clobex works the best, but it's a prescription and our insurance doesn't cover it. We would have to fail everything else first, then pay $325 per bottle for it. No thanks. Or there's Paul Mitchell Tea Tree Special Shampoo. It doesn't really stop the progression of the disease, but it does help remove some of the scales. We use a nail brush, like a mechanic would use on their hands to get the grease off.
Well, anyway, back to the school issues. I don't have an IEP or 504 Plan for him yet, so we have to be careful of his time missed. That would be easier if I could remember to get notes from the doctor's for him. Today we have to take him back for his TB test results, and then we will hopefully be able to start his Enbrel. I am currently going through an insurance nightmare with this, but I hope to get everything settled soon. (Good thing I've been stuck home the past few days!) I cannot wait to get his Enbrel started!!!
Let me also say that, before Zachary developed psoriasis, I had no idea how bad it was. I didn't understand it at all. Psoriasis is also an autoimmune disease. (Again, autoimmune is where the body attacks itself.) Psoriasis is it's own disease, but it can turn into Psoriatic Arthritis, which is what has happened to my son. Psoriasis itself can really take over. He went from having just a small patch on his ear to having his ear covered pretty quickly. Now, years later, we marvel at how it has taken over. It's popping up on his joints now, too. I notice little ones trying to start all over his jaw. It's in the folds of the knees and elbows, and the bony parts, too. It is in his eyebrows, but it has also formed in the past on his eyelids. He has one trying to start in the lower fold of the eye. It itches, it burns, it doesn't feel good, and people stare. It lowers one's self esteem. My poor little man has been so embarrassed because of it. Hopefully once we start the Enbrel, we will regain control of his skin issues and also head off anymore joint involvement. I see where it's going and it scares me. I also know that having finger involvement means that he'll likely be polyarticular (5 or more joints involved). I'm really praying that the Enbrel is as much of a miracle for him as it was for Emily. Yeah, what we go through is pretty crazy, but by the grace of God we get through. As long as we have Jesus on our side, we will continue to get through with a positive attitude, knowing that He is there to lean on when we grow weary and we will be cared for. That's enough for me.
The weird thing is that she was fine until Saturday. I know I wrote this in my update on Sunday, but she had a 10 day antibiotics course that ended on December 7. I believed that this was her sinus infection coming back because she had her Remicade (immune suppressing infusion) on December 5th. So, it's a good thing that I listened to the doctor and made an appointment for bright and early today.
Our pediatrician believes that she may have multiple infections causing this. She added Clindamycin in addition to the Omnicef, and she ordered a sinus CT. Our health insurance apparently needs a prior authorization before we can have it done (because a doctor's order just isn't good enough these days!), so we had no sooner time slot than Saturday. Hopefully it will be read before Monday. I already had an appointment for Gir made for that day; I just added Emily on to that one. We have been at our pediatrician more in the past three weeks than I can remember at this point.
I'm still working on getting my FMLA leave to go through. Apparently our doctor's didn't fax in Emily's stuff. I haven't been able to get a hold of them to find out if they didn't get my fax, if it was thrown aside and forgotten, or if perhaps it needs to go to some other department. I have no idea. I really need to get that done. Much as I would love to be a stay-home mom, it doesn't really fit in the budget. Oh, how lovely it would be to not have to worry how to get a bazillion appointments done around work, how nice it would be to not have to feel guilty every time I went to work when one of the kids needed to stay home, or to not have to feel guilty for calling into work when they are very sick. Many days it seems that, no matter what I do, by doing the "right" thing for one person, I'm ticking off somebody else. Thank God our school understands with Emily. I so love them. <3
It's a little more delicate with Zach right now. For one thing, anyone that doesn't know him likely worries that he is contagious when they see him. He is truly a mess. There is nothing that we can do except wait for the Enbrel and hope for the best. Well, that's not 100% true. I could slather him with Aquaphor all over, but he really, really hates that. It's greasy, he sticks to everything and he's uncomfortable. That's been the only thing that we find that works, and he begs us to not do it. We figure, if he hates it enough that he would rather walk around feeling miserable, it must be pretty bad. We have found a few things that help for his head. Clobex works the best, but it's a prescription and our insurance doesn't cover it. We would have to fail everything else first, then pay $325 per bottle for it. No thanks. Or there's Paul Mitchell Tea Tree Special Shampoo. It doesn't really stop the progression of the disease, but it does help remove some of the scales. We use a nail brush, like a mechanic would use on their hands to get the grease off.
Well, anyway, back to the school issues. I don't have an IEP or 504 Plan for him yet, so we have to be careful of his time missed. That would be easier if I could remember to get notes from the doctor's for him. Today we have to take him back for his TB test results, and then we will hopefully be able to start his Enbrel. I am currently going through an insurance nightmare with this, but I hope to get everything settled soon. (Good thing I've been stuck home the past few days!) I cannot wait to get his Enbrel started!!!
Let me also say that, before Zachary developed psoriasis, I had no idea how bad it was. I didn't understand it at all. Psoriasis is also an autoimmune disease. (Again, autoimmune is where the body attacks itself.) Psoriasis is it's own disease, but it can turn into Psoriatic Arthritis, which is what has happened to my son. Psoriasis itself can really take over. He went from having just a small patch on his ear to having his ear covered pretty quickly. Now, years later, we marvel at how it has taken over. It's popping up on his joints now, too. I notice little ones trying to start all over his jaw. It's in the folds of the knees and elbows, and the bony parts, too. It is in his eyebrows, but it has also formed in the past on his eyelids. He has one trying to start in the lower fold of the eye. It itches, it burns, it doesn't feel good, and people stare. It lowers one's self esteem. My poor little man has been so embarrassed because of it. Hopefully once we start the Enbrel, we will regain control of his skin issues and also head off anymore joint involvement. I see where it's going and it scares me. I also know that having finger involvement means that he'll likely be polyarticular (5 or more joints involved). I'm really praying that the Enbrel is as much of a miracle for him as it was for Emily. Yeah, what we go through is pretty crazy, but by the grace of God we get through. As long as we have Jesus on our side, we will continue to get through with a positive attitude, knowing that He is there to lean on when we grow weary and we will be cared for. That's enough for me.
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