Before I talk about our day and the general health of my family, I would like to ask for prayers for all of our juvenile arthritis friends. Some are suffering from severe systemic affects of the disease, some are suffering from psychological affects, and some from related conditions (because dontcha know that having one autoimmune condition can open up a whole new can of worms). One friend who is only around Emily's age is having his colon removed. He's only between 10-12. We have friends who suffer from more autoimmune diseases than you have fingers on your hands. Painful GI related diseases, and of course other systemic diseases. The worst that we have seen is Dermatomyositis, which is horrible, but I know that some suffer more than what we've seen.
Emily asked me yesterday what would have happened if she didn't get treated for her DM, if they didn't know what it was or if we hadn't changed doctors. I had to explain to her that not only can it affect your internal organs but it can also affect swallowing and breathing. She did have some esophogeal dysphasia (weakened throat muscles). If she wasn't treated shortly after she was, she likely would have required a breathing tube until the inflammation was under control and the muscle tissue was rebuilt. This is what DM kids face, and while there aren't a few million of them, there are too many kids suffering. Please pray for all children with autoimmune diseases. They are a terrible way to have to live.
We are very blessed that, while Emily has her share of challenges and hard times, she isn't suffering the way that many kids are right now. Not to say that she has it easy- she does not. But she's not doubled over in pain 24/7 or losing blood constantly, she can eat and sleep and walk. That's a pretty good day right there. We continue to deal with the chronic sinus infections. She has another few days of antibiotics. Our hope is that this round of IViG will kick in and boost her immune system up more. Her Igg counts on her labs from yesterday looked pretty good, but next month when she gets her Rituxan next (along with Remicade & IViG all in one day, likely overnight) they will drop so it's important to continue to boost her Igg. This is how it works a bit: Remicade blocks anti-TNF alpha, Rituxan wipes out the 'B' cells. The combination wipe out the immune system. IViG builds the immune system back up. Things like the particular form of sinus infection that she has are caused by the immune system being too low. If we can boost it enough she may shake this thing yet. They ran the IViG over 4 hours again so I'm a bit worried, but it's a different dose & a different brand. Apparently they use one brand for outpatient & one for inpatient. Outpatient's get the brand that causes fewer side effects. Here's hoping. If she's going to react then it should happen between 3-5 today.
Otherwise she looks good. She's had some back, ankle, knee, shoulder and toe pain, but they are not visibly swollen or red. We discussed her Prednisone taper and the scare that we had, and we are now working on going from 1.25mls to 1ml. (3mgs).
Camp called us today to talk about our applications. They said that they won't release who is accepted until May 1st but I don't think they called me last year, the only year that Emily didn't get in. They confirmed that they received all of our paperwork from us, our pedi & our rheumy's, so hopefully they will both be accepted! As much as we'll miss them we know how good it is for them. I love them so much my heart melts! And that's about it for now. I have to steal a quick nap. The day after hospital wipes us both out. Good day to ya :)
Tuesday, March 27, 2012
Sunday, March 25, 2012
March has been a blur!
I have been in a bit of a funk, and feeling overwhelmed by Facebook and bad news. I've been rather antisocial lately. I can't believe it's been more than 3 weeks since I posted. The time has been flying by. I am typing from a hotel as we await morning for our monthly hospital visit. Emily will be having her first 8-hour IViG treatment since the one that they messed up in November. I'm a little nervous about doing a faster one, but our doc has assured us that this is a lower dose and the infusion room nurses don't make the same mistakes that they do on a ward like where we were staying then. Still, I'm a bit nervous, but more than anything we just want it to kick in and start helping her immune system stabilize.
She is still on 1.25mls of Prednisone. We attempted the taper when we were supposed to, but a few days later her thighs hurt. Kevin thought that perhaps it was all of the running around at a birthday party that they had been at, but Emily said that it felt like a flare. She was also sleeping a little more than normal, so we went back to her old dose, to the 1.5mls. I was worried. As terrible and disabling as RA & JA are, Dermatomyositis (& Polymositis) are worse. The thought of that returning is something I can't think about. I was very, very thankful when a friend (thank you again RHT!) told me about a plan that someone else was using to help taper. She's been back on 1.25mls for about a week and so far seems to be handling it ok now.
The other issue is still that stupid sinus infection. UGH! I am so beyond over it! She had her 21 days of Augmentin, though missing a dose or 2 cuz' the pharmacist didn't mix it, and I'm certain that I messed the first bottle up. She had about 2 days off of it when she started coughing up green again. She had stopped coughing only a week or so before, so we noticed it right away when the cough came back. Very frustrating. She's back on another ten day course, and the ID doc is going to pop by to look at her tomorrow. She still looks pale and sick, but she says she's feeling better and she's acting ok.
Zach is doing all right. He turned 9 on Saturday! He gave himself a skinned knee and elbow for his present. Not so much fun! Before that he had a day or two where his knee was hurting. His hands look a little weirder to me every day and he's still getting headaches on the sides of his head. I'm praying that it's just a coincidence and not a failure of his Enbrel. Enbrel has done wonders for his psoriasis. He's almost 100% clear! Overall he's doing well. He's going on a field trip with school tomorrow to LegoLand!!! I wish that I could go, but.... I'm needed here. I sure never thought that this is how my life would turn out but it is amazing how my heart melts for my kiddos! Poor Ash is home today not feeling that great. I hope that she's not sick. I wish I could be there for her today, too. Even though she's almost an adult. How crazy that it! Anyway, we have to be up early. I'm grateful we don't have to be up at 4 A.M. to drive here though!!! That is NOT easy for us. I'll try to post tomorrow if I have time and don't get sucked into hospital time. Take care, ya'll!
She is still on 1.25mls of Prednisone. We attempted the taper when we were supposed to, but a few days later her thighs hurt. Kevin thought that perhaps it was all of the running around at a birthday party that they had been at, but Emily said that it felt like a flare. She was also sleeping a little more than normal, so we went back to her old dose, to the 1.5mls. I was worried. As terrible and disabling as RA & JA are, Dermatomyositis (& Polymositis) are worse. The thought of that returning is something I can't think about. I was very, very thankful when a friend (thank you again RHT!) told me about a plan that someone else was using to help taper. She's been back on 1.25mls for about a week and so far seems to be handling it ok now.
The other issue is still that stupid sinus infection. UGH! I am so beyond over it! She had her 21 days of Augmentin, though missing a dose or 2 cuz' the pharmacist didn't mix it, and I'm certain that I messed the first bottle up. She had about 2 days off of it when she started coughing up green again. She had stopped coughing only a week or so before, so we noticed it right away when the cough came back. Very frustrating. She's back on another ten day course, and the ID doc is going to pop by to look at her tomorrow. She still looks pale and sick, but she says she's feeling better and she's acting ok.
Zach is doing all right. He turned 9 on Saturday! He gave himself a skinned knee and elbow for his present. Not so much fun! Before that he had a day or two where his knee was hurting. His hands look a little weirder to me every day and he's still getting headaches on the sides of his head. I'm praying that it's just a coincidence and not a failure of his Enbrel. Enbrel has done wonders for his psoriasis. He's almost 100% clear! Overall he's doing well. He's going on a field trip with school tomorrow to LegoLand!!! I wish that I could go, but.... I'm needed here. I sure never thought that this is how my life would turn out but it is amazing how my heart melts for my kiddos! Poor Ash is home today not feeling that great. I hope that she's not sick. I wish I could be there for her today, too. Even though she's almost an adult. How crazy that it! Anyway, we have to be up early. I'm grateful we don't have to be up at 4 A.M. to drive here though!!! That is NOT easy for us. I'll try to post tomorrow if I have time and don't get sucked into hospital time. Take care, ya'll!
Thursday, March 1, 2012
Our new plan!
Ok, so again I am completely exhausted. Forgive me if this doesn't make any sense, but I want to get it out before I forget it all. We had another crazy day. Hospital time runs at a totally different speed than real time. It really seemed like I woke up, blinked, and the day was gone. I didn't even get time to just chill out on Facebook. Emily got quite a bit done. She was up early, got some TV time in, went to the playroom for a while, found a book to read that she enjoyed, played some video games, made some creations and watched a couple of movies.
I started my day by running 2 toys that were given to us to take to the infusion room. I figured that while I was there I would get a copy of her labs. I figured that they may be off a little, but I didn't expect them to be completely out of whack. I was shocked at how many exclamation points there were. (They indicate levels out of range.) Her inflammatory markers are elevated, but with an infection that is to be expected. Her urine was all messed up, but they said that looked more like a contaminated sample. (Phew!) Her liver enzymes (used to measure her muscle activity) look fantastic! Those running amok is one of my biggest fears. Almost everything else was off, though. That worried me, of course. I patiently waited for a few hours to see a doctor. Praise the Lord, we have been through enough of this to not worry just because something looks like it may be a problem. Problems usually seem to not be so glaringly obvious with us.
Towards the end of the day one of the doctors came in. Before I go further, let me say that one thing that I love about our rheumy group is that they don't just treat what looks rheumatological and hope someone else will deal with the "other stuff". Dr. E asked the Infectious Disease doctor to come talk to us. Let me tell you- I was soooo excited to see her. Dr. E had told Dr. V that she had ordered the Rocephin antibiotic because it's very good for sinus infections. We explained once again how the past few months have gone, listing each antibiotic and the amount of time prescribed. We established that I need to be more firm with these other doctors when it comes to prescribing antibiotics for an actual infection. I admit, that's not something that I'm good at. I feel that, while I do probably know more about rheumatology than they do, it's not my place to tell them how to do their jobs, and while I should have a medical degree, I don't actually. We talked about that for a while. She said that she would never prescribe less than a 21 day course of antibiotics for anyone for a sinus infection- never mind an immune suppressed child! I will now be more firm on that.
Despite me asking the ENT's to send over her file, despite me signing paperwork on Monday for them to do just that, they haven't done it yet. Dr. E had her nurse practitioner working on it, too. That said, they could only rely on what I was told by the ENT's from the first culture, which was that it was weak to Augmentin. Knowing that Augmentin was the only antibiotic that seemed to do anything (except for a few days before her scraping when it seemed to stop working) they prescribed a 21 day course. They also want us to keep doing IViG monthly to boost her immune system back up and then maintain it. Yesterday's labwork showed her Igg at 435. They usually do IViG for levels that fall below 500. I feel a huge sense of relief with this.
As I said in yesterday's post, we will wait two weeks to resume her Methotrexate, and then it will be at a lowered dose to begin with. She's one of the few kids that loves her Methotrexate because it helps her to not be so itchy. Dermatomyositis can cause severe itchiness, and even though hers is much better now than it was since her muscles aren't flaring, it's still annoying. I'm more excited about the Prednisone decrease!!! Again, a drop from 4.5mgs (1.5mls) to 3mgs (1ml) is huge!!! She'll have two weeks on 1.25mls, but that's ok. It's been so long since she's had a decrease. I realize that the slower the decrease the less chance of flaring so I wasn't complaining, but perhaps on the new dose she'll be able to lose some more water weight. She is still so self-conscious. And that should help her growth to get back to a more normal rate.
Last but not least, we had a roommate this time. Bless her heart, the girl has Crohn's Disease. She was given the option between trying Remicade via IV or trying a feeding tube at night with formula that would help to heal her colon. She really thought that the tube would be a good idea. That poor girl cried and cried, begging her mom to take it out. Before we left she decided that she would try Remicade- despite having a huge fear of needles. We were able to help them feel more confident about their decision, and give them some idea on what to expect. God puts people where they need to be. I truly think that we may have helped them a bit tonight. I hope so!!! I am hoping that Emily feels much better in the morning, too!
*Written at 12:04 A.M.*
I started my day by running 2 toys that were given to us to take to the infusion room. I figured that while I was there I would get a copy of her labs. I figured that they may be off a little, but I didn't expect them to be completely out of whack. I was shocked at how many exclamation points there were. (They indicate levels out of range.) Her inflammatory markers are elevated, but with an infection that is to be expected. Her urine was all messed up, but they said that looked more like a contaminated sample. (Phew!) Her liver enzymes (used to measure her muscle activity) look fantastic! Those running amok is one of my biggest fears. Almost everything else was off, though. That worried me, of course. I patiently waited for a few hours to see a doctor. Praise the Lord, we have been through enough of this to not worry just because something looks like it may be a problem. Problems usually seem to not be so glaringly obvious with us.
Towards the end of the day one of the doctors came in. Before I go further, let me say that one thing that I love about our rheumy group is that they don't just treat what looks rheumatological and hope someone else will deal with the "other stuff". Dr. E asked the Infectious Disease doctor to come talk to us. Let me tell you- I was soooo excited to see her. Dr. E had told Dr. V that she had ordered the Rocephin antibiotic because it's very good for sinus infections. We explained once again how the past few months have gone, listing each antibiotic and the amount of time prescribed. We established that I need to be more firm with these other doctors when it comes to prescribing antibiotics for an actual infection. I admit, that's not something that I'm good at. I feel that, while I do probably know more about rheumatology than they do, it's not my place to tell them how to do their jobs, and while I should have a medical degree, I don't actually. We talked about that for a while. She said that she would never prescribe less than a 21 day course of antibiotics for anyone for a sinus infection- never mind an immune suppressed child! I will now be more firm on that.
Despite me asking the ENT's to send over her file, despite me signing paperwork on Monday for them to do just that, they haven't done it yet. Dr. E had her nurse practitioner working on it, too. That said, they could only rely on what I was told by the ENT's from the first culture, which was that it was weak to Augmentin. Knowing that Augmentin was the only antibiotic that seemed to do anything (except for a few days before her scraping when it seemed to stop working) they prescribed a 21 day course. They also want us to keep doing IViG monthly to boost her immune system back up and then maintain it. Yesterday's labwork showed her Igg at 435. They usually do IViG for levels that fall below 500. I feel a huge sense of relief with this.
As I said in yesterday's post, we will wait two weeks to resume her Methotrexate, and then it will be at a lowered dose to begin with. She's one of the few kids that loves her Methotrexate because it helps her to not be so itchy. Dermatomyositis can cause severe itchiness, and even though hers is much better now than it was since her muscles aren't flaring, it's still annoying. I'm more excited about the Prednisone decrease!!! Again, a drop from 4.5mgs (1.5mls) to 3mgs (1ml) is huge!!! She'll have two weeks on 1.25mls, but that's ok. It's been so long since she's had a decrease. I realize that the slower the decrease the less chance of flaring so I wasn't complaining, but perhaps on the new dose she'll be able to lose some more water weight. She is still so self-conscious. And that should help her growth to get back to a more normal rate.
Last but not least, we had a roommate this time. Bless her heart, the girl has Crohn's Disease. She was given the option between trying Remicade via IV or trying a feeding tube at night with formula that would help to heal her colon. She really thought that the tube would be a good idea. That poor girl cried and cried, begging her mom to take it out. Before we left she decided that she would try Remicade- despite having a huge fear of needles. We were able to help them feel more confident about their decision, and give them some idea on what to expect. God puts people where they need to be. I truly think that we may have helped them a bit tonight. I hope so!!! I am hoping that Emily feels much better in the morning, too!
*Written at 12:04 A.M.*
Subscribe to:
Posts (Atom)