Miss K saw the Ophthalmologist for a follow up today. It was a short and sweet visit thank heavens, especially after our horrible start to the afternoon.
I am ashamed to admit I had a "worst mom of the year" moment today :o(. When getting out of the truck to head inside Primary Children's Medical Center for Miss K's eye appointment I somehow hit the "lock" button on my keys and left them on the seat, I was looking for my sling to carry her in and in my frustration of not being able to find it I shut the door her seat is next to and went around to open the other door only to find that it was locked, and so were the rest of the doors :o(. Miss K was still inside buckled in her carseat and the keys were on the back seat next to her :o(. I called Daddy in a panic asking him what I should do. He had me try to open the back sliding window but it was latched shut and I was not strong enough to force it open, I got in the tool box and found a screwdriver to try forcing the window open but still couldn't get it. We also have a slim jim in the tool box for such occasions but I have no idea how to use it so I wasn't willing to take more time working on getting in there on my own. It was about 110 degrees outside and I could see Miss K was already getting flushed from the heat :o(. I was parked on the far side of the building and it was quite the run, as fast as I could go, into the hospital to the security desk. When I got inside I told the security lady that I had locked my baby and my keys in the truck, she didn't even hesitate as she got on her radio and yelled "there's a baby locked in a truck outside, get your slim jim and get your butts out there NOW!" I told her I was sorry but I couldn't wait inside so I described our truck and where I was parked and ran back outside as fast as I could so I could watch Miss K from the windows and keep an eye on her. I waited for about 3 minutes (though it seemed like FOREVER) and the 3 security guards, including the lady from the desk, came running to our rescue. It took them less than 1 minute to get the doors unlocked for me. I was so grateful, the tears I held back through it all almost fell at my relief. Luckily Miss K was only in that hot truck about 10 minutes before we got her out and she didn't start to panic and cry until just before security arrived to help, of course she was extremely happy to be rescued and turned out to be just fine, a bit red in the face from heat but otherwise fine.
Now on to the rest of the afternoon. As soon as Miss K was rescued we ran in to her eye appointment. The 1-2 hour appointment that I had anticipated turned into less than 30 minutes as they got Miss K back almost immediately and chose not to dilate her eyes since they had done that last time. The Doctor was impressed with her yet again and reports that she is doing great and here eyes look perfect :o). He doesn't wish to see her again unless taking her off the Amiodarone doesn't work and she ends up back on it. I, of course, reassured him that this wouldn't happen and told him that as much as we liked and appreciated him we would be glad to not ever be back :o), he agreed. (See Side Effects)
Then we had to head to the Pharmacy to pick up Miss K's medications. Amazingly there was not a wait there either. The pharmacist was still not able to explain why we're only getting 28 days out of a 30 day supply, they are baffled and couldn't tell me anything other than "hopefully this time it will stretch to 30 days like it should." I'm not happy with them but there's really nothing I can do about it. We left the pharmacy to sit in the hallway and give Miss K her Amiodarone since she hadn't had it in 2 1/2 days and I was instructed by her EP Cardiologist to get her dosed ASAP today when I picked up the medication.
I was amazed to be back home so quickly, we left home at 2:00pm and arrived back into town at 4:30pm. It was a great thing though since I am still shaken up about locking Miss K in the truck in the heat :o(.
Showing posts with label Ophthalmologist. Show all posts
Showing posts with label Ophthalmologist. Show all posts
7.02.2012
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).
4.05.2012
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).
3.16.2012
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).
2.21.2012
A Visit with an Ophthalmologist
The eye center Miss K's Cardiologist referred her to couldn't get her in until April, her cardiologist wanted her seen ASAP. I made the decision to get the name of a Pediatric Ophthalmologist from Miss K's Pediatrician instead, hoping they could get her in sooner, and was in luck, they were able to get her in within the week. Today was the day.
I was a little nervous about seeing this Eye Doctor, I had no idea if he would know anything about the medication Amiodarone, or if he would know what he was even looking for.
Now that the appointment has come and gone I'm still not sure the Doctor knew what he was looking for, he knew quite a bit about Amiodarone surprisingly. The appointment only took an hour, that was including waiting 30 minutes for Miss K's eyes to dilate, this seemed odd to me since the eye center her Cardiologist recommended said Miss K's appointment would take 2-5 hours??? The Eye Doctor took a few minutes to look at Miss K and then told me he didn't understand why I was there, he said she was too young for us to know anything about any side effects showing in her eyes and that he didn't think there was anything to worry about with her. He then asked if I had any personal reason to have her seen by him, of course my only reason was because her cardiologist wanted her seen ASAP. So this Eye Doctor's plan is to look up Miss K's Amiodarone ratios (her dose to weight ratio and the milligrams to milliliters ratio of her compound mix) and see what the clinical outcomes say about the possible side effects in the eyes, he said if there was anything relevant to Miss K's situation that he'd call me, otherwise she's fine.
Now I'm trying to decide if we can cancel Miss K's scheduled appointment in April with the other eye center or if I should keep it for a second, possibly more informed, opinion. I'm not quite sure what to do...I really feel that Miss K's eyes are just fine, but I want to make sure my feelings are correct and today's eye doctor didn't really help me out here.
I was a little nervous about seeing this Eye Doctor, I had no idea if he would know anything about the medication Amiodarone, or if he would know what he was even looking for.
Now that the appointment has come and gone I'm still not sure the Doctor knew what he was looking for, he knew quite a bit about Amiodarone surprisingly. The appointment only took an hour, that was including waiting 30 minutes for Miss K's eyes to dilate, this seemed odd to me since the eye center her Cardiologist recommended said Miss K's appointment would take 2-5 hours??? The Eye Doctor took a few minutes to look at Miss K and then told me he didn't understand why I was there, he said she was too young for us to know anything about any side effects showing in her eyes and that he didn't think there was anything to worry about with her. He then asked if I had any personal reason to have her seen by him, of course my only reason was because her cardiologist wanted her seen ASAP. So this Eye Doctor's plan is to look up Miss K's Amiodarone ratios (her dose to weight ratio and the milligrams to milliliters ratio of her compound mix) and see what the clinical outcomes say about the possible side effects in the eyes, he said if there was anything relevant to Miss K's situation that he'd call me, otherwise she's fine.
Now I'm trying to decide if we can cancel Miss K's scheduled appointment in April with the other eye center or if I should keep it for a second, possibly more informed, opinion. I'm not quite sure what to do...I really feel that Miss K's eyes are just fine, but I want to make sure my feelings are correct and today's eye doctor didn't really help me out here.
2.07.2012
Home 2-7-2012 Miss K is 6 Months Old!
Miss K had her 6 month Cardiology check up today. It went well so say the least...I'll leave out the whole complaint of it taking us over 4 hours to get through the visit and back home again, let's just say: I thought taking her to the nearest center her cardiologist is in would take 1/2 the time as taking her to the usual place we go to, I was wrong it took the same amount of time, the only difference was we didn't spend 3 hours of our total time driving, but instead we spent that time waiting and waiting, not quite sure what's worse?
Anyway, on to today's results and decisions!
Miss K is doing great heart wise. Her little heart was beating at 128 BPM today at her appointment, which is great :o). My only personal concern was her weight, she weighed 8 ounces less today than she did 2 weeks ago, I'm hoping that's not true and that their scales are just weighing differently than the pediatricians, we'll see tomorrow at her 6 month well baby check :o).
We decided to keep her on the Amiodarone a little longer. As her Mommy I just don't feel like she's ready to be off of it, her cardiologist agreed though he was more than willing to take her off of it today if I wanted him to. So essentially it was my decision to keep her on it. Those 2 SVT episodes last month really scared me into it. But the good news is that we decided to keep her on the same dose instead of adjusting it, YAY! We're thinking maybe she can be weaned slowly off the Amiodarone for good if we keep the dose the same and let her outgrow it, as long as she doesn't have a lot more SVT episodes that is. I mentioned 2 weeks ago that her cardiologist upped her dose of Propanolol over the phone due to her recent SVT episodes, so the plan is to try just adjusting the Propanolol in the future IF she does have more episodes. If Miss K quits having SVT episodes by her 1st birthday then we'll stop the Amiodarone and see if she can do without it. As of today Miss K is taking 6 ML's Amiodarone once daily and 2 ML's Propanolol every 8 hours.
Because we're keeping Miss K on the Amiodarone we are being referred to an Ophthalmologist to check her eyes and make sure the Amiodarone isn't harming them (see Side Effects).
All my concerns were considered. Most were explained and talked about, some I was told to ask the Pediatrician as they didn't seem to be heart related.
Miss K CAN take Tylenol, thank heavens! Now I can feel good about making her ear pain go away orally! The numbing ear drops do work but I feel Tylenol would work better.
Her sweating while eating did not concern the cardiologist, he felt sure it was caused by her congestion and that her heart is just fine. I mentioned that when she sweats profusely (from being too warm) she get's really stinky, sweaty stinky, and I asked if anyone else has mentioned that issue who was taking Propanolol and/or Amiodarone, the answer was "no, not that they knew of" so I guess Miss K could just be a stinky sweater (I sure hope not though!).
I asked about her joints popping, and if this could be due to medications, the answer was "no", we need to bring it up with the pediatrician tomorrow. Hopefully this is nothing to be concerned about but we'll see!
I asked about antibiotic interactions with her heart medications. The answer was "anything the pediatricians usually use is safe, there are 3 or 4 that could be issued but they're not in the top choices for pediatricians to use", luckily Miss K's pediatrician is VERY observant and careful and I don't need to remember the names of those "3 or 4" antibiotics, lol! But I feel better knowing that giving her antibiotics for her ears isn't going to interfere with her medications.
I asked about her Thrush issues. This is something we've been battling with her for about 4 months now, it comes and goes. We've tried treating it with Nystatin but it didn't work, I tried Probiotics and they did not work either, last resort was Gentian Violet and it did work but as soon as it wore off on the 3rd day of application the Thrush came back :o( so Miss K has been treated with it 3 times now and is ready for it again. As for the heart medications being the culprit, the answer was "not likely", Miss K is just one of those babies who gets it and keeps it :o(. She should outgrow it in time. I asked because her Pediatrician mentioned one of her heart medications could be the reason the Thrush wouldn't go away, not that it is the cause, just that it could be helping keep it around.
I asked about our method of giving Miss K her Propanolol. She LOVES to spit this one out and refuses to swallow it. One day out of desperation I found that if I gave her a "chaser" dose of Gripe Water (please note, this link says Gripe water may contain Alcohol, the brands of Gripe Water I use DO NOT contain Alcohol, if you find one that does I would NOT suggest using it for your infant) she would swallow the Propanolol without complaint, she LOVES the taste of Gripe Water for some reason. I was only concerned that there may be an ingredient that could interact with her heart medications. The cardiologist couldn't find any reason I shouldn't do it so we will definitely keep it up!
My last, and biggest, concern was her Potassium levels. In the beginning when she was hospitalized she had a large muscle twitch in her right side that the Neurologist attributed to possible seizure activity though they really didn't think it was seizures she was having. They put her on Keppra just in case and asked that we have an MRI done a few months later. When I was looking back in my journal about those few weeks I noticed that these "twitches" were happening at the same time they found her Potassium levels were too high, so I looked it up on the WWW ;o) and read up about signs and symptoms of Potassium levels being off and found that there was a slight possibility that Miss K's "twitching" could have been caused by the high levels of Potassium in her system. Last week Miss K started this funny little head thing, something that in a normal, perfectly healthy baby, wouldn't draw anyone's attention. It's VERY likely it's just a new little quirk about Miss K, the first time I noticed it she had a headband on, she hates headbands so I think that maybe she was just trying to rub it off. I'm still a little concerned and will be asking her pediatrician about it tomorrow but the Cardiologist didn't think it was anything to worry about. When I mentioned the Potassium levels he was more than willing to order a Potassium check along with her other usual blood work.
Amazingly the Cardiologist called me about 2 hours after I got home to tell me that her blood work all came back and it's all PERFECT, I did a little dance :o), I'm always stressed about what her blood work looks like, I panic when he calls thinking "this is the day that he tells me the Amiodarone is killing her", so when he tells me it all looks great I can't help but dance and sing :o).
Anyway, on to today's results and decisions!
Miss K is doing great heart wise. Her little heart was beating at 128 BPM today at her appointment, which is great :o). My only personal concern was her weight, she weighed 8 ounces less today than she did 2 weeks ago, I'm hoping that's not true and that their scales are just weighing differently than the pediatricians, we'll see tomorrow at her 6 month well baby check :o).
We decided to keep her on the Amiodarone a little longer. As her Mommy I just don't feel like she's ready to be off of it, her cardiologist agreed though he was more than willing to take her off of it today if I wanted him to. So essentially it was my decision to keep her on it. Those 2 SVT episodes last month really scared me into it. But the good news is that we decided to keep her on the same dose instead of adjusting it, YAY! We're thinking maybe she can be weaned slowly off the Amiodarone for good if we keep the dose the same and let her outgrow it, as long as she doesn't have a lot more SVT episodes that is. I mentioned 2 weeks ago that her cardiologist upped her dose of Propanolol over the phone due to her recent SVT episodes, so the plan is to try just adjusting the Propanolol in the future IF she does have more episodes. If Miss K quits having SVT episodes by her 1st birthday then we'll stop the Amiodarone and see if she can do without it. As of today Miss K is taking 6 ML's Amiodarone once daily and 2 ML's Propanolol every 8 hours.
Because we're keeping Miss K on the Amiodarone we are being referred to an Ophthalmologist to check her eyes and make sure the Amiodarone isn't harming them (see Side Effects).
All my concerns were considered. Most were explained and talked about, some I was told to ask the Pediatrician as they didn't seem to be heart related.
Miss K CAN take Tylenol, thank heavens! Now I can feel good about making her ear pain go away orally! The numbing ear drops do work but I feel Tylenol would work better.
Her sweating while eating did not concern the cardiologist, he felt sure it was caused by her congestion and that her heart is just fine. I mentioned that when she sweats profusely (from being too warm) she get's really stinky, sweaty stinky, and I asked if anyone else has mentioned that issue who was taking Propanolol and/or Amiodarone, the answer was "no, not that they knew of" so I guess Miss K could just be a stinky sweater (I sure hope not though!).
I asked about her joints popping, and if this could be due to medications, the answer was "no", we need to bring it up with the pediatrician tomorrow. Hopefully this is nothing to be concerned about but we'll see!
I asked about antibiotic interactions with her heart medications. The answer was "anything the pediatricians usually use is safe, there are 3 or 4 that could be issued but they're not in the top choices for pediatricians to use", luckily Miss K's pediatrician is VERY observant and careful and I don't need to remember the names of those "3 or 4" antibiotics, lol! But I feel better knowing that giving her antibiotics for her ears isn't going to interfere with her medications.
I asked about her Thrush issues. This is something we've been battling with her for about 4 months now, it comes and goes. We've tried treating it with Nystatin but it didn't work, I tried Probiotics and they did not work either, last resort was Gentian Violet and it did work but as soon as it wore off on the 3rd day of application the Thrush came back :o( so Miss K has been treated with it 3 times now and is ready for it again. As for the heart medications being the culprit, the answer was "not likely", Miss K is just one of those babies who gets it and keeps it :o(. She should outgrow it in time. I asked because her Pediatrician mentioned one of her heart medications could be the reason the Thrush wouldn't go away, not that it is the cause, just that it could be helping keep it around.
I asked about our method of giving Miss K her Propanolol. She LOVES to spit this one out and refuses to swallow it. One day out of desperation I found that if I gave her a "chaser" dose of Gripe Water (please note, this link says Gripe water may contain Alcohol, the brands of Gripe Water I use DO NOT contain Alcohol, if you find one that does I would NOT suggest using it for your infant) she would swallow the Propanolol without complaint, she LOVES the taste of Gripe Water for some reason. I was only concerned that there may be an ingredient that could interact with her heart medications. The cardiologist couldn't find any reason I shouldn't do it so we will definitely keep it up!
My last, and biggest, concern was her Potassium levels. In the beginning when she was hospitalized she had a large muscle twitch in her right side that the Neurologist attributed to possible seizure activity though they really didn't think it was seizures she was having. They put her on Keppra just in case and asked that we have an MRI done a few months later. When I was looking back in my journal about those few weeks I noticed that these "twitches" were happening at the same time they found her Potassium levels were too high, so I looked it up on the WWW ;o) and read up about signs and symptoms of Potassium levels being off and found that there was a slight possibility that Miss K's "twitching" could have been caused by the high levels of Potassium in her system. Last week Miss K started this funny little head thing, something that in a normal, perfectly healthy baby, wouldn't draw anyone's attention. It's VERY likely it's just a new little quirk about Miss K, the first time I noticed it she had a headband on, she hates headbands so I think that maybe she was just trying to rub it off. I'm still a little concerned and will be asking her pediatrician about it tomorrow but the Cardiologist didn't think it was anything to worry about. When I mentioned the Potassium levels he was more than willing to order a Potassium check along with her other usual blood work.
Amazingly the Cardiologist called me about 2 hours after I got home to tell me that her blood work all came back and it's all PERFECT, I did a little dance :o), I'm always stressed about what her blood work looks like, I panic when he calls thinking "this is the day that he tells me the Amiodarone is killing her", so when he tells me it all looks great I can't help but dance and sing :o).
12.28.2011
Home 12-6-11 Miss K is 4 Months Old
Miss K saw the Neurologist today: The Doctor agreed with me, she's been on the same dose of Keppra since she was 2 weeks old and has gained almost 8 pounds since then. They usually up the dose according to weight to keep seizure activity under control but Miss K's hasn't ever been upped and she's NEVER had any seizure activity since that day in the hospital. The Doctor and I agree that we've pretty much been giving her water these past few months and she wasn't having seizures and isn't going to have any. She's perfect in the neurology department :o). She passed every neurological test the Doctor did on her and we're going to skip the MRI because she doesn't need it :o). Miss K is no longer on the Keppra, as of today we've been told by the Doctor to stop giving it to her :o).
Home 9-21-11
Miss K had her first appointment with her Electro Physiologist Yesterday. He told me Miss K has PJRT: Permanent (or persistent) junctional reciprocating tachycardia, a type of SVT that's harder to treat :o(. She's now wearing a Holter Monitor until this afternoon. The Doctor wasn't happy about how often she's still going into SVT but is OK with it because we can get her out of it as long as she's not staying in it for more than a few minutes.
The frustrating news is this particular Doctor (Electro Physiologist) saw Miss K once while she was at PCMC and requested the Cardiology team consult with him about treatment before doing anything, I guess he's the only one in his field at PCMC and his field is actually the SVT specialty, regular Cardiologists don't know as much about SVT and they don't know the very best ways to treat it. Turns out they didn't consult with him though :o(. He is upset they put her on Amiodarone before trying 2 other medications that usually work and are way less toxic (See Side Effects). If they had consulted him he wouldn't have let them even suggest Amiodarone until the others didn't work. I guess once a baby is on Amiodarone they have to stay on it until the SVT is solved (either outgrown or by surgery) unless we want to spend 3 days to a week minimum in the hospital with her again having her weaned off of it and onto one of the other options :o(.
The verdict is: Miss K will be on Amiodarone and Propanalol together, like she is now, for a while. The Doctor's hoping she can be off of it at 6 months but he's not counting on it since she's got PJRT, he's betting it'll be more like 1-3 years and then he's almost sure she'll end up getting the ablation surgery around 3 years old because he doesn't think she'll be able to wait until she's 5 like they want her to. So that's the plan unless her heart changes, if she's having episodes more frequently and/or they're lasting 1 hour or more each time she has them then we will have to hospitalize her again and try new medication combos. So now we keep an eye on her and pray like crazy that she stays stable and stays out of the hospital. We're also praying she doesn't have any of the side effects of the Amiodarone. Next month she'll start seeing an Ophthalmologist for her eyes, we need to keep an eye on them to make sure she doesn't get any deposits on her retina from the Amiodarone (a possible side effect), if she does start getting deposits then we'll have to hospitalize and take her off of the Amiodarone, he's sure this won't happen but we need to be cautious. She'll also have her blood drawn and labs done about every 1-2 months to keep an eye on her Thyroid and Liver function, if either of those have issues we'll have to hospitalize and correct the issues if possible as well as get her off the Amiodarone.
There are so many scenarios and if's with this condition she has and the medication she's on! It's so frustrating.
Some good news though, she's getting used to the drowsiness effects of the medications and is awake and alert A LOT more often now :o). For a while there I thought we were going to have a little girl who just slept her first few years away, I'm so happy to see that she's starting to behave a lot more like a baby her age :o). She is also gaining weight...LIKE CRAZY!! two weeks ago at her 1 month check up she weighed 8 pounds, yesterday she weighed 9 pounds :o), and she's 21 3/4 inches long. You can literally feel the 9 pounds in her, lol, she's a chunker :o), I call her Pudgy, Daddy thinks it's mean but I think it's cute :o), I adore fat babies!
The frustrating news is this particular Doctor (Electro Physiologist) saw Miss K once while she was at PCMC and requested the Cardiology team consult with him about treatment before doing anything, I guess he's the only one in his field at PCMC and his field is actually the SVT specialty, regular Cardiologists don't know as much about SVT and they don't know the very best ways to treat it. Turns out they didn't consult with him though :o(. He is upset they put her on Amiodarone before trying 2 other medications that usually work and are way less toxic (See Side Effects). If they had consulted him he wouldn't have let them even suggest Amiodarone until the others didn't work. I guess once a baby is on Amiodarone they have to stay on it until the SVT is solved (either outgrown or by surgery) unless we want to spend 3 days to a week minimum in the hospital with her again having her weaned off of it and onto one of the other options :o(.
The verdict is: Miss K will be on Amiodarone and Propanalol together, like she is now, for a while. The Doctor's hoping she can be off of it at 6 months but he's not counting on it since she's got PJRT, he's betting it'll be more like 1-3 years and then he's almost sure she'll end up getting the ablation surgery around 3 years old because he doesn't think she'll be able to wait until she's 5 like they want her to. So that's the plan unless her heart changes, if she's having episodes more frequently and/or they're lasting 1 hour or more each time she has them then we will have to hospitalize her again and try new medication combos. So now we keep an eye on her and pray like crazy that she stays stable and stays out of the hospital. We're also praying she doesn't have any of the side effects of the Amiodarone. Next month she'll start seeing an Ophthalmologist for her eyes, we need to keep an eye on them to make sure she doesn't get any deposits on her retina from the Amiodarone (a possible side effect), if she does start getting deposits then we'll have to hospitalize and take her off of the Amiodarone, he's sure this won't happen but we need to be cautious. She'll also have her blood drawn and labs done about every 1-2 months to keep an eye on her Thyroid and Liver function, if either of those have issues we'll have to hospitalize and correct the issues if possible as well as get her off the Amiodarone.
There are so many scenarios and if's with this condition she has and the medication she's on! It's so frustrating.
Some good news though, she's getting used to the drowsiness effects of the medications and is awake and alert A LOT more often now :o). For a while there I thought we were going to have a little girl who just slept her first few years away, I'm so happy to see that she's starting to behave a lot more like a baby her age :o). She is also gaining weight...LIKE CRAZY!! two weeks ago at her 1 month check up she weighed 8 pounds, yesterday she weighed 9 pounds :o), and she's 21 3/4 inches long. You can literally feel the 9 pounds in her, lol, she's a chunker :o), I call her Pudgy, Daddy thinks it's mean but I think it's cute :o), I adore fat babies!
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