As I said in my last Eczema Update, Miss K's Pediatrician looked at her chin and determined it was an infection. I have been applying her prescription ointment, Mupirocin, 2-3 times per day as well as Hydrocortizone. We are seeing great results! Her chin and neck look SO much better! The Eczema is still there, but it's no longer red and puffy instead it is a yellowish color and smooth, it's nearly invisible now. We'll keep applying both ointments for another 5 days or so to make sure it's really gone. I'm so relieved to see it improving so quickly though, I was really dreading another oral antibiotic.
Now Miss K's big brother is battling a bad Eczema outbreak. He's never had much of a skin problem, the worst we've dealt with is Hives when we try to use any baby wash or lotion other than Johnson and Johnson. Last week he developed a patch of Eczema on his face, at the top of his nose just near his eye. I treated it with Bag Balm and it cleared up within a couple days, now it's just a dry spot without redness or an itch. Over the weekend he developed a bad Eczema outbreak on his bottom, the backs of his thighs and in his groin area :o(. Bag Balm and A&D did not work so rather than try everything else in the cupboards I resorted to Miss K's Hydrocortizone cream, so far it's doing OK but not clearing up as fast as I would like it too. I'm just hoping it clears up and goes away without further treatment, if it seems worse or just the same by the end of the week I'll start applying Miss K's prescription ointment, as their Pediatrician gave us 2 refills and suggested I try it on Big Brother if I felt the need too.
I don't know if it's the extreme weather changes (highly likely) or if there is something in our water but these Eczema outbreaks are really getting ridiculous. My poor babies are suffering with the "itchies" and really not liking the burning and stinging effects of the Hydrocortizone :o(. Hopefully we can get it figured out and all cleared up soon!
4.30.2012
4.26.2012
Eczema Update
Miss K's Pediatrician was able to see her early this afternoon amazingly.
Miss K did have Eczema on her chin and neck but the broken skin caused by it allowed bacteria to enter and turned it into a skin infection :o(. She was prescribed an ointment called Mupirocin to be used until the rash is gone. I was also instructed to buy some Hydrocortizone cream and put that on her 2-3 times a day. I hope it works. The Pediatrician didn't look too confident though, he told me to keep an eye on it and if it only stays the same or gets worse after 5-7 days to call him, he'll need to prescribe an oral medication to help clear it up. I hope the ointment and cream work, I really don't want to be forcing an antibiotic into her, the heart medications are torture enough.
Today was day 4 of using the Good On Ya Treat cream on Miss K and as I was getting ready to rub her down with it tonight I noticed her Eczema is coming back on her back and shoulders so apparently this cream is a no go :o(. Instead of trying one more night I opted to go right back to the Aveeno Baby Eczema Therapy Cream, I really don't want her to really break out all over again and have to start from scratch.
Miss K did have Eczema on her chin and neck but the broken skin caused by it allowed bacteria to enter and turned it into a skin infection :o(. She was prescribed an ointment called Mupirocin to be used until the rash is gone. I was also instructed to buy some Hydrocortizone cream and put that on her 2-3 times a day. I hope it works. The Pediatrician didn't look too confident though, he told me to keep an eye on it and if it only stays the same or gets worse after 5-7 days to call him, he'll need to prescribe an oral medication to help clear it up. I hope the ointment and cream work, I really don't want to be forcing an antibiotic into her, the heart medications are torture enough.
Today was day 4 of using the Good On Ya Treat cream on Miss K and as I was getting ready to rub her down with it tonight I noticed her Eczema is coming back on her back and shoulders so apparently this cream is a no go :o(. Instead of trying one more night I opted to go right back to the Aveeno Baby Eczema Therapy Cream, I really don't want her to really break out all over again and have to start from scratch.
Eczema
Miss K has Eczema. She's had it since her first week officially home from PCMC. And believe me, it's not just small patches here and there, like my son and I have, it's very large patches on larger body parts. Her worst area has always been her upper back and shoulders, when not treated effectively it gets looking pretty awful. She also gets it fairly bad on her chin, neck and cheeks.
After weeks of using one thing after another on her, trying to at least make her comfortable, I found Aveeno Baby Eczema Therapy Cream accepted by the National Eczema Association. We had tried Baby Aveeno Soothing Relief Moisture Cream that is a bit cheaper than the Eczema one and it seemed to only make her worse. After just 1 day of the Eczema Therapy cream her skin looked SO much better, after a week it was like she didn't have Eczema at all, as long as we rub her down with it at least once daily that is. This cream is not cheap. I've been purchasing it at WalMart, paying about $11.00 for a 7.3 oz tube that only lasts about 3 weeks.
I'm currently looking for other options. If there is anything out there that could work as good for even a little bit less the cost I would LOVE to know about it. We have made 2 recent attempts with new creams since finding the Aveeno. Attempt #1 was homemade cream that my mom found a recipe for, we thought it would work as well or better since it is quite greasy and makes your skin smooth and soft instantly keeping it smooth and soft for 1-2 days after only one application and the total cost to make enough to last about 2 months was about $10.00. It didn't work for Miss K :o(, after just 2 days of applying once daily her Eczema was back with a vengeance, I swear she was having an allergic reaction to something in the cream as well as an Eczema outbreak. I quickly went back to using the Aveeno, and just like I expected, her skin cleared up after just one day. Attempt #2 I am currently trying, it's called Good On Ya' Skin Treat given to me by a friend I work with. She doesn't remember where she got it, she bought it for her son who has sensitive skin but he wouldn't use it and she's had it for at least a year just sitting in her cabinet. She gave me this cream to try in hopes it will work. The problem is I looked up the website to see pricing because she couldn't remember what she spent on it...OMG, it's NOT affordable. I REALLY hope she did not spend $60 on this 9 oz container. Hopefully she can remember where she got it so I can go price check there if it works. So far we are on day 3 of using it and her skin has stayed clear and glowing, I won't be surprised if does end up working, it's because it costs so much, she's turning out to be a very expensive little girl.
My newest concern though is a rash she has developed under her chin. It started out to be 2 or 3 pencil eraser sized spots close together then grew to about the size of a dime within 24 hours and looks a lot like bad Eczema. It has been a week since it first appeared and in that week it has spread and has so far not responded to any creams I have on hand. As of tonight it is now covering a quarter sized area under her chin and has progressed to the right side under her cheek and down her neck, it's now in her two creases in her neck and there are new spots appearing on her upper chest just at the base of her throat. I'm almost sure it's Eczema but I am a little worried about it since it has so rapidly spread, the lack of response to my usual (and some new) creams and ointments is a little worrisome as well. I have given this rash one more day to clear up and used one of my last few options on it all day long, it only seemed to get worse as today progressed though. Tomorrow morning I'm hoping her Pediatrician will be able to fit her in, I'd like for him to look at it and make sure it is Eczema, and then I hope he can give me some new ideas for treating this new outbreak.
Note: I typed the above late last night and rather than change anything I'm just adding here, I took the pictures this morning and noticed the rash has moved to her right cheek and the corner of her right eye, what was on her neck and chest appears to be worse than it was when I put her to bed last night. I contacted her Pediatrician and was able to schedule an appointment for her this afternoon.
These are the best pictures I could get of Miss K's chin:
After weeks of using one thing after another on her, trying to at least make her comfortable, I found Aveeno Baby Eczema Therapy Cream accepted by the National Eczema Association. We had tried Baby Aveeno Soothing Relief Moisture Cream that is a bit cheaper than the Eczema one and it seemed to only make her worse. After just 1 day of the Eczema Therapy cream her skin looked SO much better, after a week it was like she didn't have Eczema at all, as long as we rub her down with it at least once daily that is. This cream is not cheap. I've been purchasing it at WalMart, paying about $11.00 for a 7.3 oz tube that only lasts about 3 weeks.
I'm currently looking for other options. If there is anything out there that could work as good for even a little bit less the cost I would LOVE to know about it. We have made 2 recent attempts with new creams since finding the Aveeno. Attempt #1 was homemade cream that my mom found a recipe for, we thought it would work as well or better since it is quite greasy and makes your skin smooth and soft instantly keeping it smooth and soft for 1-2 days after only one application and the total cost to make enough to last about 2 months was about $10.00. It didn't work for Miss K :o(, after just 2 days of applying once daily her Eczema was back with a vengeance, I swear she was having an allergic reaction to something in the cream as well as an Eczema outbreak. I quickly went back to using the Aveeno, and just like I expected, her skin cleared up after just one day. Attempt #2 I am currently trying, it's called Good On Ya' Skin Treat given to me by a friend I work with. She doesn't remember where she got it, she bought it for her son who has sensitive skin but he wouldn't use it and she's had it for at least a year just sitting in her cabinet. She gave me this cream to try in hopes it will work. The problem is I looked up the website to see pricing because she couldn't remember what she spent on it...OMG, it's NOT affordable. I REALLY hope she did not spend $60 on this 9 oz container. Hopefully she can remember where she got it so I can go price check there if it works. So far we are on day 3 of using it and her skin has stayed clear and glowing, I won't be surprised if does end up working, it's because it costs so much, she's turning out to be a very expensive little girl.
My newest concern though is a rash she has developed under her chin. It started out to be 2 or 3 pencil eraser sized spots close together then grew to about the size of a dime within 24 hours and looks a lot like bad Eczema. It has been a week since it first appeared and in that week it has spread and has so far not responded to any creams I have on hand. As of tonight it is now covering a quarter sized area under her chin and has progressed to the right side under her cheek and down her neck, it's now in her two creases in her neck and there are new spots appearing on her upper chest just at the base of her throat. I'm almost sure it's Eczema but I am a little worried about it since it has so rapidly spread, the lack of response to my usual (and some new) creams and ointments is a little worrisome as well. I have given this rash one more day to clear up and used one of my last few options on it all day long, it only seemed to get worse as today progressed though. Tomorrow morning I'm hoping her Pediatrician will be able to fit her in, I'd like for him to look at it and make sure it is Eczema, and then I hope he can give me some new ideas for treating this new outbreak.
Note: I typed the above late last night and rather than change anything I'm just adding here, I took the pictures this morning and noticed the rash has moved to her right cheek and the corner of her right eye, what was on her neck and chest appears to be worse than it was when I put her to bed last night. I contacted her Pediatrician and was able to schedule an appointment for her this afternoon.
These are the best pictures I could get of Miss K's chin:
4.22.2012
Eye Exam Review Letter
We recently received the review letter from the Ophthalmologist Miss K saw earlier this month. I was impressed with the Dr. for making sure I received a copy for myself, and also relieved since he got one thing wrong, a very important thing...he sent a copy of the letter to a family Dr. who IS NOT Miss K's Dr., they pulled the wrong Dr. from their list. Her Dr. is Dr. Larson, with an "on", they sent her letter to a Dr. Larsen "en". Now I have to call the Eye Dr. tomorrow and ask them to please re-send the letter to her Pediatrician lol, yes I did lol because even though it's a bit frustrating it's also kind of funny in an ironic kind of way. Most funny to me is this other Dr. Larsen "en" is probably wondering who the heck this (Miss K) is and why he's receiving this letter lol! Anyway, here's the letter (I liked what it said so I'll share).
Dear Dr. Pilcher,
Thank you for referring (Miss K). As you know, (Miss K) has supraventricular tachycardia (SVT) and it sounds like the exact cause is not known. She is currently being treated with amiodarone and propanolol.
Her eye exam was normal without evidence of corneal verticillate or any optic nerve abnormality. Indeed, she had excellent fix and follow vision, briskly reactive pupils, and a normal cornea, iris, lens, vitreous, optic nerve, and retina OU. She was quite cooperative for her eye exam too.
I will screen her again in approximately 4 months to continue to follow her progress, but I do not see evidence for ocular toxicity.
Warmest regards,
David C. Dries, MD
My only other correction, not really a big deal and I'm not calling anyone about it though I will make sure at her next eye exam that I "remind" him about it, was his opening paragraph. I specifically told him at her eye exam that Miss K has PJRT, a condition that causes SVT. I find it odd that he didn't catch (or maybe didn't understand) what I said. It's clear he's not in the heart profession lol!
So good to know exactly what he thought of her eye exam from his professional point of view :o).
Dear Dr. Pilcher,
Thank you for referring (Miss K). As you know, (Miss K) has supraventricular tachycardia (SVT) and it sounds like the exact cause is not known. She is currently being treated with amiodarone and propanolol.
Her eye exam was normal without evidence of corneal verticillate or any optic nerve abnormality. Indeed, she had excellent fix and follow vision, briskly reactive pupils, and a normal cornea, iris, lens, vitreous, optic nerve, and retina OU. She was quite cooperative for her eye exam too.
I will screen her again in approximately 4 months to continue to follow her progress, but I do not see evidence for ocular toxicity.
Warmest regards,
David C. Dries, MD
My only other correction, not really a big deal and I'm not calling anyone about it though I will make sure at her next eye exam that I "remind" him about it, was his opening paragraph. I specifically told him at her eye exam that Miss K has PJRT, a condition that causes SVT. I find it odd that he didn't catch (or maybe didn't understand) what I said. It's clear he's not in the heart profession lol!
So good to know exactly what he thought of her eye exam from his professional point of view :o).
4.17.2012
Home 4-17-12 Miss K is 8 Months Old
Today was Miss K's 8 month Cardiology check-up. I've been looking forward to this day for weeks, sometimes it feels like there is just WAY too much time between visits.
Miss K is now weighing 16.4 pounds and is 27 1/4 inches long.
Her weight has caught up with her Propanolol dose finally. Her Cardiologist says she is now on a dose that would be considered the "starter dose" for her weight if we were just beginning the Propanolol for the first time, which means we have a lot of room to grow before we can no longer up her dose as needed. If she has any future SVT episodes we will be upping the Propanolol before upping the Amiodarone.
He was concerned that she's still having periodic breakthrough SVT episodes, she obviously hasn't outgrown the PJRT since we're still seeing them, of course we knew this already. He was happy to hear that she was barely in SVT before we caught it and got her out of it on our own.
He is not taking her off the Amiodarone as of now. He's for sure leaving her on it for 2 more months, he said that if she has absolutely NO breakthrough episodes between now and then that he'd be willing to try taking her off the Amiodarone but he warned me that if she did have any SVT episodes after taking her off of it that they may be long and that we may not be able to get her out of them on our own. He wants us to be prepared to be making ER visits with her if we take her off the Amiodarone before she's really ready. He is still wanting to keep her on the Amiodarone until her 1st birthday. He mentioned upping the dose since she's been on the same dose for over 5 months now but I talked him out of it since she's only having 1 or 2 episodes every 3 months. He was happy to keep everything as it is, if we keep the Amiodarone at 6 ML and she makes it to her 1st birthday then he explained it would be easier to take her off of it because there would be less in her system to work out, we could know within weeks if she needs to go back on it instead of 1-2 months like normal. I'm confident we won't be changing the dose of this medication any time in the near future if at all.
Her heart sounds great, the EKG went very well and her blood pressure is great. Overall the Cardiologist was impressed with how happy and alert she is, all she did was smile for him the whole time.
And some of the best news we received from the Cardiologist is that I do not need to give Miss K the Propanolol every 8 hours any more, he felt bad that he didn't mention this at her 6 month check-up, she just needs to get it 3 times a day and if we need to go longer than 8 hours that is totally fine. The Propanolol works best when spread out evenly in 8 hour increments but it's not a big deal to get off the schedule. I am so relieved! Putting Miss K to bed after we give it to her at 10:00pm and then waking her up (as well as myself) at 6:00am to give it to her again has really been wearing on both of us. Miss K absolutely hates getting up at 6:00am, usually she only wakes up just enough to take the Propanolol and eat a little then she goes back to sleep for almost 2 more hours. And she is always ready for bed around 9:00pm and therefore cranky and hard to please for that extra hour. I'm so happy to be able to let her set the schedule now! The Cardiologist's exact words "Oh heavens, please let her sleep! She should be allowed to wake up on her own when she's ready, she can wait to take the Propanolol until then!", he's such a wonderful Pediatric Cardiologist :o). Of course we'll still try to stick to giving it to her as close to 8 hours as possible to keep her from having SVT episodes but letting her sleep as long as she needs to at night will be heavenly.
We had lab work done to check her Thyroid and Lungs, just keeping a close watch to make sure she doesn't have any Amiodarone Side Effects. I haven't heard back from her Cardiologist yet, we may get the results tomorrow if not this evening, I'll update this post when I find out! (We got a call from Miss K's wonderful Cardiologist around 6pm, everything looks GREAT! I love that he calls us as soon as the results come to him, no matter the time and no matter what he's doing) Getting the lab work done was torture on our sweet baby girl. The technician tried her right arm first but couldn't get the vain, and rather than stop after the first try she kept trying and trying...and trying until it had been over 5 minutes on that same arm, Miss K screamed the whole time with great big crocodile tears rolling down her cheeks. I admit, I cried too, my tears were almost as big as hers. I felt awful holding her down like that :o(. The technician finally tried the left arm and found that the vein there was much better than the other arm, but Miss K didn't get to calm down much before I had to hold her down again and let the girl poke her yet again. We had instant screaming and tears all over again, a lot more hysteric the second time around but she got the vein and the blood within a minute and we were done. Miss K continued to cry crocodile tears for over 10 minutes after leaving the Lab :o(. Her poor Daddy could hear her screaming from the waiting room through 3 doors :o(, he admitted after the first 2 minutes he was about to jump over the desk and come rescue his baby doll, he's such a sweet and wonderful Daddy.
Miss K is doing awesome, she's growing like a weed and changing way too fast. She's adorably funny, cute as a bug and the clown of the house. She brings a smile to any and every face whether it be family or a stranger in a grocery store, nobody can look at her without smiling. Currently her most favorite person in the world is her big brother, she lights up like a fire cracker whenever he walks into the room, luckily he loves her just as much :o). She is the biggest Momma's girl ever, nobody can take care of her like her Mommy, or so she thinks.
Miss K is now weighing 16.4 pounds and is 27 1/4 inches long.
Her weight has caught up with her Propanolol dose finally. Her Cardiologist says she is now on a dose that would be considered the "starter dose" for her weight if we were just beginning the Propanolol for the first time, which means we have a lot of room to grow before we can no longer up her dose as needed. If she has any future SVT episodes we will be upping the Propanolol before upping the Amiodarone.
He was concerned that she's still having periodic breakthrough SVT episodes, she obviously hasn't outgrown the PJRT since we're still seeing them, of course we knew this already. He was happy to hear that she was barely in SVT before we caught it and got her out of it on our own.
He is not taking her off the Amiodarone as of now. He's for sure leaving her on it for 2 more months, he said that if she has absolutely NO breakthrough episodes between now and then that he'd be willing to try taking her off the Amiodarone but he warned me that if she did have any SVT episodes after taking her off of it that they may be long and that we may not be able to get her out of them on our own. He wants us to be prepared to be making ER visits with her if we take her off the Amiodarone before she's really ready. He is still wanting to keep her on the Amiodarone until her 1st birthday. He mentioned upping the dose since she's been on the same dose for over 5 months now but I talked him out of it since she's only having 1 or 2 episodes every 3 months. He was happy to keep everything as it is, if we keep the Amiodarone at 6 ML and she makes it to her 1st birthday then he explained it would be easier to take her off of it because there would be less in her system to work out, we could know within weeks if she needs to go back on it instead of 1-2 months like normal. I'm confident we won't be changing the dose of this medication any time in the near future if at all.
Her heart sounds great, the EKG went very well and her blood pressure is great. Overall the Cardiologist was impressed with how happy and alert she is, all she did was smile for him the whole time.
And some of the best news we received from the Cardiologist is that I do not need to give Miss K the Propanolol every 8 hours any more, he felt bad that he didn't mention this at her 6 month check-up, she just needs to get it 3 times a day and if we need to go longer than 8 hours that is totally fine. The Propanolol works best when spread out evenly in 8 hour increments but it's not a big deal to get off the schedule. I am so relieved! Putting Miss K to bed after we give it to her at 10:00pm and then waking her up (as well as myself) at 6:00am to give it to her again has really been wearing on both of us. Miss K absolutely hates getting up at 6:00am, usually she only wakes up just enough to take the Propanolol and eat a little then she goes back to sleep for almost 2 more hours. And she is always ready for bed around 9:00pm and therefore cranky and hard to please for that extra hour. I'm so happy to be able to let her set the schedule now! The Cardiologist's exact words "Oh heavens, please let her sleep! She should be allowed to wake up on her own when she's ready, she can wait to take the Propanolol until then!", he's such a wonderful Pediatric Cardiologist :o). Of course we'll still try to stick to giving it to her as close to 8 hours as possible to keep her from having SVT episodes but letting her sleep as long as she needs to at night will be heavenly.
We had lab work done to check her Thyroid and Lungs, just keeping a close watch to make sure she doesn't have any Amiodarone Side Effects. I haven't heard back from her Cardiologist yet, we may get the results tomorrow if not this evening, I'll update this post when I find out! (We got a call from Miss K's wonderful Cardiologist around 6pm, everything looks GREAT! I love that he calls us as soon as the results come to him, no matter the time and no matter what he's doing) Getting the lab work done was torture on our sweet baby girl. The technician tried her right arm first but couldn't get the vain, and rather than stop after the first try she kept trying and trying...and trying until it had been over 5 minutes on that same arm, Miss K screamed the whole time with great big crocodile tears rolling down her cheeks. I admit, I cried too, my tears were almost as big as hers. I felt awful holding her down like that :o(. The technician finally tried the left arm and found that the vein there was much better than the other arm, but Miss K didn't get to calm down much before I had to hold her down again and let the girl poke her yet again. We had instant screaming and tears all over again, a lot more hysteric the second time around but she got the vein and the blood within a minute and we were done. Miss K continued to cry crocodile tears for over 10 minutes after leaving the Lab :o(. Her poor Daddy could hear her screaming from the waiting room through 3 doors :o(, he admitted after the first 2 minutes he was about to jump over the desk and come rescue his baby doll, he's such a sweet and wonderful Daddy.
Miss K showing off her 2 BandAid covered Owies :o(. I'm sad to say she is getting some scaring on both arms in these locations :o(.
Miss K is doing awesome, she's growing like a weed and changing way too fast. She's adorably funny, cute as a bug and the clown of the house. She brings a smile to any and every face whether it be family or a stranger in a grocery store, nobody can look at her without smiling. Currently her most favorite person in the world is her big brother, she lights up like a fire cracker whenever he walks into the room, luckily he loves her just as much :o). She is the biggest Momma's girl ever, nobody can take care of her like her Mommy, or so she thinks.
4.10.2012
So Close, and Yet so Far...
We thought we made it, we thought we might get to say "No SVT episodes since January" come her next Cardiology appointment, we were so hopeful...
Last night was a huge disappointment for us. At bedtime I gave Miss K her Propanolol and for some strange reason she panicked trying to swallow, this is not something new to us. When Miss K was a tiny baby she would panic while swallowing it every time we gave it to her, and every time she'd do this it would cause her to go into SVT. For the last 5 months she has gotten used to it and even when she has panicked it hasn't caused SVT at all. Last night was rough, I don't know what happened but when I gave her the Propanolol she really panicked, and I mean REALLY, she stopped breathing for at least 30 seconds (a lot longer than she ever has before) and gasped and choked on the Propanolol. We got her calmed down, she was quite happy through it all strangely enough, and finished giving it to her she took the second half of it like a champ. I think she was just so happy when I gave her the first half that she was too distracted and didn't know what was going on until it hit her throat. FYI: if you've never tasted Propanolol you should know that it tastes like very strong cough medicine, it hits your throat like a ton of bricks, my best explanation is that when it hits your throat it's a lot like your very first shot of Whiskey (yes I have had Whiskey, don't judge, it was 100% medicinal), it makes you choke and gag like crazy, it can even take your breath away. About 10 minutes later I had her Daddy listen to her heart, I just felt like something wasn't right and you can guarantee when I feel this way and I know I'm right I will refuse to be the first to listen to her because it scares me to death. Her Daddy handed me the stethoscope and said "It's beating WAY fast" so I had to listen as well much to my dismay. Her heart was beating faster than I've heard it beat since her first episode in January, when I timed it I lost track multiple times and had to start over, in the end I estimated that it was beating in the 230 range or higher. Of course it scared me, it scared me to death, I really don't think I'll EVER get over that. Miss K was still happy and playing, she was actually full of giggles and smiles and just all out being a real goofball so you wouldn't have known anything was wrong without listening to her heart. The first Physical Maneuver I tried was to tip her upside down, the first try was for 5 seconds...No luck. Second try was for 10 seconds...Still no luck. One more try for 15 seconds...And again no luck. I tried to make her bear down by putting her knees to her chest and pushing hard...No luck :o(. Then I panicked more, I thought for sure we were going to end up in the hospital with a happy, seemingly healthy, baby getting an IV and Adenosine. On a whim I tried blowing in her face, since this did not work the last 2 times she was in SVT I wasn't confident it would work this time and was about ready to just skip it and move on to an ice bag...Amazingly blowing in Miss K's face worked like a charm, as soon as she got her breath back she was out of SVT and ready to go to bed. Needless to say we were quite relieved, but also quite stressed. We both spent the night listening for her to cry and checking in on her to make sure she was breathing and her heart was beating normal.
Her next Cardiology appointment is next Tuesday, she made it 3 months SVT free just like the last stretch, she got our hopes all up, I can't understand why just the week before her appointment she had to have an episode. I don't know what her Cardiologist is going to say about it, at least this time we know something put her in it and we know what that something was but I don't know if he'll see it as OK or if he'll really dislike it.
We were hoping and praying to get her off her Amiodarone SOON, I even was (and am still) hoping he might start weaning her off of it at this next appointment. My goal is still to get her Amiodarone free before or on her birthday. She has been on the same dose of Amiodarone (6 ML once daily) since she was 6 weeks old, she has gained over 10 pounds since then and at her 4 month appointment her Cardiologist mentioned that she was finally weighing what she should weigh for her dose (at 6 weeks old they had her on a dose WAY higher than recommended for her weight). So it's obvious that she's been taking less than what is OK for her current weight for almost 4 months now. That to me was a sign that we were weaning her slowly as it is and that she was doing great, the last SVT episode didn't cause her Cardiologist to up her Amiodarone dose, he upped the Propanolol instead and she's done wonderfully with it.
My hopes now are that her Cardiologist will start thinking about weaning anyway, that her weight to dose ratio will show that she's taking WAY less Amiodarone than she can and that it will show that she's been slowly weaning off of it just by not needing a higher dose with weight gain. I really don't think he'll up the dose at this upcoming appointment, but I'm not so sure it's likely he'll take her off of it like I hoped.
Maybe she'll be off the Amiodarone by her birthday....maybe.
Last night was a huge disappointment for us. At bedtime I gave Miss K her Propanolol and for some strange reason she panicked trying to swallow, this is not something new to us. When Miss K was a tiny baby she would panic while swallowing it every time we gave it to her, and every time she'd do this it would cause her to go into SVT. For the last 5 months she has gotten used to it and even when she has panicked it hasn't caused SVT at all. Last night was rough, I don't know what happened but when I gave her the Propanolol she really panicked, and I mean REALLY, she stopped breathing for at least 30 seconds (a lot longer than she ever has before) and gasped and choked on the Propanolol. We got her calmed down, she was quite happy through it all strangely enough, and finished giving it to her she took the second half of it like a champ. I think she was just so happy when I gave her the first half that she was too distracted and didn't know what was going on until it hit her throat. FYI: if you've never tasted Propanolol you should know that it tastes like very strong cough medicine, it hits your throat like a ton of bricks, my best explanation is that when it hits your throat it's a lot like your very first shot of Whiskey (yes I have had Whiskey, don't judge, it was 100% medicinal), it makes you choke and gag like crazy, it can even take your breath away. About 10 minutes later I had her Daddy listen to her heart, I just felt like something wasn't right and you can guarantee when I feel this way and I know I'm right I will refuse to be the first to listen to her because it scares me to death. Her Daddy handed me the stethoscope and said "It's beating WAY fast" so I had to listen as well much to my dismay. Her heart was beating faster than I've heard it beat since her first episode in January, when I timed it I lost track multiple times and had to start over, in the end I estimated that it was beating in the 230 range or higher. Of course it scared me, it scared me to death, I really don't think I'll EVER get over that. Miss K was still happy and playing, she was actually full of giggles and smiles and just all out being a real goofball so you wouldn't have known anything was wrong without listening to her heart. The first Physical Maneuver I tried was to tip her upside down, the first try was for 5 seconds...No luck. Second try was for 10 seconds...Still no luck. One more try for 15 seconds...And again no luck. I tried to make her bear down by putting her knees to her chest and pushing hard...No luck :o(. Then I panicked more, I thought for sure we were going to end up in the hospital with a happy, seemingly healthy, baby getting an IV and Adenosine. On a whim I tried blowing in her face, since this did not work the last 2 times she was in SVT I wasn't confident it would work this time and was about ready to just skip it and move on to an ice bag...Amazingly blowing in Miss K's face worked like a charm, as soon as she got her breath back she was out of SVT and ready to go to bed. Needless to say we were quite relieved, but also quite stressed. We both spent the night listening for her to cry and checking in on her to make sure she was breathing and her heart was beating normal.
Her next Cardiology appointment is next Tuesday, she made it 3 months SVT free just like the last stretch, she got our hopes all up, I can't understand why just the week before her appointment she had to have an episode. I don't know what her Cardiologist is going to say about it, at least this time we know something put her in it and we know what that something was but I don't know if he'll see it as OK or if he'll really dislike it.
We were hoping and praying to get her off her Amiodarone SOON, I even was (and am still) hoping he might start weaning her off of it at this next appointment. My goal is still to get her Amiodarone free before or on her birthday. She has been on the same dose of Amiodarone (6 ML once daily) since she was 6 weeks old, she has gained over 10 pounds since then and at her 4 month appointment her Cardiologist mentioned that she was finally weighing what she should weigh for her dose (at 6 weeks old they had her on a dose WAY higher than recommended for her weight). So it's obvious that she's been taking less than what is OK for her current weight for almost 4 months now. That to me was a sign that we were weaning her slowly as it is and that she was doing great, the last SVT episode didn't cause her Cardiologist to up her Amiodarone dose, he upped the Propanolol instead and she's done wonderfully with it.
My hopes now are that her Cardiologist will start thinking about weaning anyway, that her weight to dose ratio will show that she's taking WAY less Amiodarone than she can and that it will show that she's been slowly weaning off of it just by not needing a higher dose with weight gain. I really don't think he'll up the dose at this upcoming appointment, but I'm not so sure it's likely he'll take her off of it like I hoped.
Maybe she'll be off the Amiodarone by her birthday....maybe.
4.05.2012
Eye Doctor...
Monday we went in for another eye appointment, this time with a different Ophthalmologist. I felt we needed to see someone else since I wasn't satisfied with the first Ophthalmologist's opinion. I liked the first Doctor, he was very nice and talked and flirted with Miss K and made us feel comfortable but I didn't feel he knew enough about Miss K's situation. He also felt that I was there on my own fears and that I was overreacting about Miss K being on Amiodarone, even after I told him that Miss K's Cardiologist had sent us in. I felt like his assessment was very short and more geared towards making me feel better instead of really checking for any possible signs that the Amiodarone may be affecting her eyes (see Side Effects). When we left his office I decided to keep the appointment that we had previously made with another Ophthalmologist (when I had called to make the appointment they couldn't get her in for 2 months and her Cardiologist and I wished to get her in sooner, thus the reason we saw someone else).
The Ophthalmologist we saw this time was GREAT. Turns out he knew the first Doctor we saw and he was kind of surprised I was getting a second opinion from him but after I explained that I did like the Doctor but I didn't think he really knew enough about the situation then he understood and was more than happy to do a second assessment. He was great with Miss K and very fun to talk to. He did a little more in depth assessment of Miss K's eyes and gave her a clean bill of eye health. He was so much more understanding about our fears, he works in a Children's Hospital and sees the worst of the worst so he's a lot more careful about what he's looking for, he knows the absolute bad that can happen. He also knows Miss K's Cardiologist so he knew I was there on "Doctor's orders" not my own fears. He has requested we bring Miss K back in 3 months if she's still on the Amiodarone so he can keep a close eye on her, though he's not really concerned about Amiodarone side effects in her eyes, he says it's VERY rare in infants and small children especially if the child's family has no eye disease in the family, but like I said he's seen the worst of the worst so he's more than happy to watch her closely.
I'm so relieved to hear that her eyes are great, the Ophthalmologist was actually quite impressed (and I think excited) to see her perfect eye development, that makes a Mom fell great :o).
The Ophthalmologist we saw this time was GREAT. Turns out he knew the first Doctor we saw and he was kind of surprised I was getting a second opinion from him but after I explained that I did like the Doctor but I didn't think he really knew enough about the situation then he understood and was more than happy to do a second assessment. He was great with Miss K and very fun to talk to. He did a little more in depth assessment of Miss K's eyes and gave her a clean bill of eye health. He was so much more understanding about our fears, he works in a Children's Hospital and sees the worst of the worst so he's a lot more careful about what he's looking for, he knows the absolute bad that can happen. He also knows Miss K's Cardiologist so he knew I was there on "Doctor's orders" not my own fears. He has requested we bring Miss K back in 3 months if she's still on the Amiodarone so he can keep a close eye on her, though he's not really concerned about Amiodarone side effects in her eyes, he says it's VERY rare in infants and small children especially if the child's family has no eye disease in the family, but like I said he's seen the worst of the worst so he's more than happy to watch her closely.
I'm so relieved to hear that her eyes are great, the Ophthalmologist was actually quite impressed (and I think excited) to see her perfect eye development, that makes a Mom fell great :o).
3.29.2012
Any Thoughts? Advice? Suggestions?
I'm not sure if this is heart related or not so I thought I'd throw it out there and see if anyone else has noticed the same thing with their heart babies. Miss K is well known for holding her breath a lot, not when crying or any time she's upset and not to the point of passing out (I know a lot of healthy children who do this and know it's quite common), she just does it while playing or jabbering most often when blowing raspberries or spitting at us she'll just keep blowing and blowing to the point that we would normally need to take a breath and start over again, we've counted and she usually doesn't stop to take a breath for over 15 seconds. It doesn't seem to bother her in any way. She is also known for doing it while breastfeeding, it's like she forgets to take a breath or forgets what she's doing and she'll suddenly start choking and gasping for air, this is something that was at it's worst when she was just a few months old now that she's 7 months she's been doing it less and it's not as dramatic or traumatizing but still worrisome for me.
About a week ago I went to PCMC to refill Miss K's Amiodarone and we found that she only had a 10 day amount left on her prescription allowance but she had about 28 days before her next Cardiology appointment, it was a simple, and commonly made, miscalculation on the Cardiologits part when he first prescribed it back in September, we should have been able to get 30 day refills each time we went in until at least the end of April but he was short just a month. The pharmacy sent him a fax so he could prescribe it again but it was going to take a few days for him to get the fax and send in the prescription order and then the pharmacy needs 24 hours to mix the Amiodarone. I wasn't happy to hear this since we are 40 minutes away from PCMC and they are the closest pharmacy that is capable of mixing compound medications, I had made a special trip to fill it and I wasn't looking forward to making the trip again in a mere 10 days. I called Miss K's Cardiologist on my way home and asked what he thought, if maybe since he might be taking her off the Amiodarone at her next appointment we could just not refill it when it ran out and see how she does until the appointment date, I was kind of surprised to hear him tell me "no, she needs to stay on the Amiodarone until I see her". So we planned to go back in 10 days to refill again for a 30 day amount. Luckily we are a little ahead of ourselves on refill time with both the Amiodarone and the Propanolol, so instead of us having just 10 days or so before needing to go back we ended up with 18 days worth of Amiodarone left, so now I'm stuck with a tough decision. Miss K now has 9 days left of Amiodarone, her next Cardiology appointment is in 20 days, that leaves us with 11 days. The Amiodarone is kind of expensive to fill, especially on our already stretched budget, I really don't want to pay for a 30 day refill with only 11 days before her Cardiology appointment and have him take her off of it thus wasting that expensive stuff, but there's still the chance he may keep her on it for another few months. I guess I'm asking for suggestions or advice...I can see if the pharmacy will just give us the amount needed to make it to her Cardiology appointment thus saving us a little money and then go back for another refill on appointment day if needed or I can just get the full refill in 9 days and if the Cardiologist takes her off of it keep what's left in case she doesn't do well without it and we need to put her back on it. It wouldn't be such a tough decision for me if: A) the Amiodarone wasn't so expensive and B) the pharmacy wasn't so far away with a 24 hour notice requirement for compound refills.
About a week ago I went to PCMC to refill Miss K's Amiodarone and we found that she only had a 10 day amount left on her prescription allowance but she had about 28 days before her next Cardiology appointment, it was a simple, and commonly made, miscalculation on the Cardiologits part when he first prescribed it back in September, we should have been able to get 30 day refills each time we went in until at least the end of April but he was short just a month. The pharmacy sent him a fax so he could prescribe it again but it was going to take a few days for him to get the fax and send in the prescription order and then the pharmacy needs 24 hours to mix the Amiodarone. I wasn't happy to hear this since we are 40 minutes away from PCMC and they are the closest pharmacy that is capable of mixing compound medications, I had made a special trip to fill it and I wasn't looking forward to making the trip again in a mere 10 days. I called Miss K's Cardiologist on my way home and asked what he thought, if maybe since he might be taking her off the Amiodarone at her next appointment we could just not refill it when it ran out and see how she does until the appointment date, I was kind of surprised to hear him tell me "no, she needs to stay on the Amiodarone until I see her". So we planned to go back in 10 days to refill again for a 30 day amount. Luckily we are a little ahead of ourselves on refill time with both the Amiodarone and the Propanolol, so instead of us having just 10 days or so before needing to go back we ended up with 18 days worth of Amiodarone left, so now I'm stuck with a tough decision. Miss K now has 9 days left of Amiodarone, her next Cardiology appointment is in 20 days, that leaves us with 11 days. The Amiodarone is kind of expensive to fill, especially on our already stretched budget, I really don't want to pay for a 30 day refill with only 11 days before her Cardiology appointment and have him take her off of it thus wasting that expensive stuff, but there's still the chance he may keep her on it for another few months. I guess I'm asking for suggestions or advice...I can see if the pharmacy will just give us the amount needed to make it to her Cardiology appointment thus saving us a little money and then go back for another refill on appointment day if needed or I can just get the full refill in 9 days and if the Cardiologist takes her off of it keep what's left in case she doesn't do well without it and we need to put her back on it. It wouldn't be such a tough decision for me if: A) the Amiodarone wasn't so expensive and B) the pharmacy wasn't so far away with a 24 hour notice requirement for compound refills.
3.21.2012
A Cute Photo...
I was reading about a cute baby boy named Ryker who is dealing with Heteratoxy, born in March 2012, and came across a cute little picture of him that reminded me of Miss K so I found one of Miss K's hospital pictures and guess what? They are very similar photos lol! Here is Miss K in her first few days of life :o):
3.16.2012
Story Time...
Since I don't have much to update about (always a great thing with Miss K) and it's been quite a while since I posted last I thought I'd share a few stories :o).
In January I had a lady schedule to come to my home for a workshop to learn more about Heritage Makers. She brought a few friends along and we had a lot of fun talking and sharing life stories. When Miss K woke up from her nap and came out to see everyone the lady asked if she had met us before, other than at the county fair where she had learned about my business. I told her she looked familiar as well but I didn't know why, I assumed it was because I was remembering meeting her at the fair. Then she asked how old Miss K was and commented on how cute she was, etc., as always her smallish size was brought up and I explained she had a heart condition, that's when the lady realized where she had seen us before, she asked if we had brought Miss K into the local ER before and I said "yes, she was in SVT at 280 BPM" and she said "I was the one who did her work up in the ER!" Then she turned to her friends and said "this is that baby that came in last summer! The one who scared us all to death!" and the other ladies, who just happened to be nurses at the same hospital as well, all said "yeah! We remember that story! You guys were sure she wasn't going to make it!" Miss K has been quite the talk of the town since her scary SVT beginning!
About a month or two ago we were at Home Depot picking up some supplies. At checkout the girl was so nice and talkative. She saw the baby carrier in the shopping cart and asked if she could see the baby. Our conversation went sort of like this (though for sure not word for word, lol):
Checker: Boy or girl?
Me: Girl (lifting the cover)
Checker: Aww! She's so cute! And so tiny!
Me: She's actually kind of chunky, almost 16 pounds!
Checker: How old?
Me: Almost 6 months.
Checker: Awww, my baby girl is almost 13 months, I can't believe how big she is now, seeing younger babies always makes me miss the tiny baby she was.
Me: Yeah, she was quite tiny to begin with.
Checker: My baby was 5 pounds 14 ounces.
Me: Wow! My baby was 5.12!
Checker: My baby was delivered via emergency c-section.
Me: Mine too! Her heart was beating too fast.
Checker: My baby's was too! Does your baby have SVT?
Me: Yes she does! Your's does too?
Checker: Yes! She was life flighted to Primary Children's last fall in heart failure.
Me: I'm so sorry! Is she alright?
Checker: She's great, she's now on heart medications.
Me: Our little one is too.
We held up the line of customers behind me while she gave me her Facebook name so we could be friends and keep up with each other. Quite the coincidence to run into another SVT mom right here in town! Even more crazy that her baby is not much older than ours. It makes me wonder what is in the water here, lol!
We were in the Pediatrician's office last week to make sure Miss K's congestion wasn't moving to her ears or a product of an illness. While there the Doctor we were seeing (her primary Pediatrician wasn't available early enough for us) asked what medications she was currently taking, as always when I told him she was on Amiodarone and Propanolol he was quite shocked. I told him she had SVT and he got all excited, not uncommon lol. He told me a crazy story about a baby girl who came in to see him last fall, she was all flushed and didn't look like she felt well at all and when he listened to her lungs and heart he was shocked to find that her heart sounded like a little humming bird it was beating so fast. He realized this baby was possibly in heart failure and in his words "I took a deep breath and calmed myself before telling the mom that I thought she should probably take her baby over to the ER." He then said that within minutes of her leaving the Pediatricians office life flight flew in and took the baby girl to Primary Children's, the baby was in heart failure due to SVT. Turns out I'm pretty sure this baby he was talking about is the same baby who's mother I talked to in Home Depot!
We had to take Daddy to the after hours clinic to have a Strep Test done last week. While there the Doctor (who was new to us, we had never visited him before) was curious as to why exactly we wanted a Strep Test if Daddy wasn't having for sure Strep Throat symptoms, we let him know Miss K had a heart condition and we needed to keep her as healthy as possible. He completely understood and of course, being a doctor he wanted to know what her condition was. We told him she had SVT and he immediately got curious. He then asked, "wait, is she the baby that was in the ER here last summer?" Lol, we definitely started to laugh and told him yes she was, he was amazed to see she seemed to be doing great. I asked him if he was in the ER at the time and he told us that he was not, he had just gotten off shift in the after hours clinic when it was paged out to everyone. Yup, Miss K was definitely the talk of the town.
Miss K is doing great :o). Our next upcoming visits are in April, first to see another Ophthalmologist for a second opinion about her eyes (from Amiodarone side effects) just as a precaution to make Mommy feel better, then we'll see her Cardiologist a few weeks after for her bi-monthly checkup and then in May we'll have Miss K's regular well baby check for 9 months (wow, can she really be coming up on her 9 month mark? Time goes WAY too fast!). I feel great about how things are going and I'm confident these upcoming appointments are going to go very well for us :o).
In January I had a lady schedule to come to my home for a workshop to learn more about Heritage Makers. She brought a few friends along and we had a lot of fun talking and sharing life stories. When Miss K woke up from her nap and came out to see everyone the lady asked if she had met us before, other than at the county fair where she had learned about my business. I told her she looked familiar as well but I didn't know why, I assumed it was because I was remembering meeting her at the fair. Then she asked how old Miss K was and commented on how cute she was, etc., as always her smallish size was brought up and I explained she had a heart condition, that's when the lady realized where she had seen us before, she asked if we had brought Miss K into the local ER before and I said "yes, she was in SVT at 280 BPM" and she said "I was the one who did her work up in the ER!" Then she turned to her friends and said "this is that baby that came in last summer! The one who scared us all to death!" and the other ladies, who just happened to be nurses at the same hospital as well, all said "yeah! We remember that story! You guys were sure she wasn't going to make it!" Miss K has been quite the talk of the town since her scary SVT beginning!
About a month or two ago we were at Home Depot picking up some supplies. At checkout the girl was so nice and talkative. She saw the baby carrier in the shopping cart and asked if she could see the baby. Our conversation went sort of like this (though for sure not word for word, lol):
Checker: Boy or girl?
Me: Girl (lifting the cover)
Checker: Aww! She's so cute! And so tiny!
Me: She's actually kind of chunky, almost 16 pounds!
Checker: How old?
Me: Almost 6 months.
Checker: Awww, my baby girl is almost 13 months, I can't believe how big she is now, seeing younger babies always makes me miss the tiny baby she was.
Me: Yeah, she was quite tiny to begin with.
Checker: My baby was 5 pounds 14 ounces.
Me: Wow! My baby was 5.12!
Checker: My baby was delivered via emergency c-section.
Me: Mine too! Her heart was beating too fast.
Checker: My baby's was too! Does your baby have SVT?
Me: Yes she does! Your's does too?
Checker: Yes! She was life flighted to Primary Children's last fall in heart failure.
Me: I'm so sorry! Is she alright?
Checker: She's great, she's now on heart medications.
Me: Our little one is too.
We held up the line of customers behind me while she gave me her Facebook name so we could be friends and keep up with each other. Quite the coincidence to run into another SVT mom right here in town! Even more crazy that her baby is not much older than ours. It makes me wonder what is in the water here, lol!
We were in the Pediatrician's office last week to make sure Miss K's congestion wasn't moving to her ears or a product of an illness. While there the Doctor we were seeing (her primary Pediatrician wasn't available early enough for us) asked what medications she was currently taking, as always when I told him she was on Amiodarone and Propanolol he was quite shocked. I told him she had SVT and he got all excited, not uncommon lol. He told me a crazy story about a baby girl who came in to see him last fall, she was all flushed and didn't look like she felt well at all and when he listened to her lungs and heart he was shocked to find that her heart sounded like a little humming bird it was beating so fast. He realized this baby was possibly in heart failure and in his words "I took a deep breath and calmed myself before telling the mom that I thought she should probably take her baby over to the ER." He then said that within minutes of her leaving the Pediatricians office life flight flew in and took the baby girl to Primary Children's, the baby was in heart failure due to SVT. Turns out I'm pretty sure this baby he was talking about is the same baby who's mother I talked to in Home Depot!
We had to take Daddy to the after hours clinic to have a Strep Test done last week. While there the Doctor (who was new to us, we had never visited him before) was curious as to why exactly we wanted a Strep Test if Daddy wasn't having for sure Strep Throat symptoms, we let him know Miss K had a heart condition and we needed to keep her as healthy as possible. He completely understood and of course, being a doctor he wanted to know what her condition was. We told him she had SVT and he immediately got curious. He then asked, "wait, is she the baby that was in the ER here last summer?" Lol, we definitely started to laugh and told him yes she was, he was amazed to see she seemed to be doing great. I asked him if he was in the ER at the time and he told us that he was not, he had just gotten off shift in the after hours clinic when it was paged out to everyone. Yup, Miss K was definitely the talk of the town.
Miss K is doing great :o). Our next upcoming visits are in April, first to see another Ophthalmologist for a second opinion about her eyes (from Amiodarone side effects) just as a precaution to make Mommy feel better, then we'll see her Cardiologist a few weeks after for her bi-monthly checkup and then in May we'll have Miss K's regular well baby check for 9 months (wow, can she really be coming up on her 9 month mark? Time goes WAY too fast!). I feel great about how things are going and I'm confident these upcoming appointments are going to go very well for us :o).
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