Showing posts with label Eczema. Show all posts
Showing posts with label Eczema. Show all posts

8.07.2012

Miss K is 1 Year Old!

I can't believe how fast time has flown.  My teeny, tiny 5 pound 12 ounce baby girl is now a chubby 17 pound 4 ounce one year old :o(, I love to watch her grow and change but I also just want her to stay little forever.  We feel so blessed for all the prayers we have had answered and all the love and support we have had from Miss K's very beginning.

In the past year we have dealt with a lot starting with Miss K's heart condition, her 4 days in NICU after birth, her 3 weeks in PCMC after her release from NICU, seizures, herniated umbilical, monthly and every other month Cardiology appointments, constant and painful blood draws, medication 4 times daily, Thrush, Yeast Infections, Eczema, constant constipation from her medications among many other minor side effects (see also Amiodarone Side Effects), and more.  But we made it through it all!  Through everything Miss K has always been happy and smiling, nothing can get her down!  She is our light, she brings so much happiness and love into our home.

So onto her Cardiology check up today :o).  Miss K's EP Cardiologist was impressed with her today, and he is happy with her progress.  He asked me if it was OK if we stopped giving her the Amiodarone, of course I responded with a resounding "YES!" and he laughed and told me to stop giving it to her.  We are supposed to keep what is left just in case but she does not need to take it anymore.  It will take at least a month for it to run out of her system completely and could take up to 2 weeks before we will truly know if she is done with it.  He says that occasional SVT episodes while off the Amiodarone, as long as they are short and she is coming out of them mostly on her own, are a good thing.  It will teach her heart that it doesn't need the Amiodarone anymore and hopefully help it to not depend on it anymore if it needs that help.  And NO BLOOD DRAW today (see Side Effects)!!!  We were so happy to just leave the exam room and be gone instead of heading down to the dreaded lab :o).

The EP Cardiologist also talked about taking her off of the Propanolol sometime in the next 6 months O_O.  He smiled and told me he completely understood when I told him "I'm more than fine with taking her off of the Amiodarone, I know she'll do great, but the day you actually are serious about taking her off of the Propanolol I'm going to be scared to death and may try to talk you out of it."  He said the parents who's child was in SVT 30 minutes to a day tops and never deal with it again are always a lot more eager to get rid of the medications than the parents, like us, who had to go through weeks in the hospital trying to get their child to stay out of SVT for at least a few hours/days.  He told me he understood my fears of ending up right back where we started, which really isn't my fear, I know that if she isn't ready to be taken off the Propanolol we won't end up in the hospital I'll just be on the phone with him getting the OK to start giving it to her again and she'll be fine once it's back in her system.  It's the fear of her having SVT period that makes me hesitate, I really don't want her going into it at all and knowing that the Propanolol is what is keeping her out of it makes me very hesitant.  But it is exciting to hear him talk about trying to wean her in the next 6 months after having him tell us that she will not outgrow the PJRT and that she will end up taking the Propanolol until she can have the Catheter Ablation at 45-65 pounds.

We have some great parties planned to celebrate Miss K's first birthday :o).  She is going to feel quite spoiled.  Tomorrow she will officially be a year old and we will have a small cake with her grandparents from both sides and a few really great friends who adore her.  This coming weekend we will have a HUGE birthday bash to really celebrate her birthday, and her big brother's who's birthday is in a mere 2 weeks, this party will be with my whole family.  And in 2 weeks we will have another HUGE birthday bash with Daddy's family to celebrate both Miss K's first birthday and her big brother's 3rd birthday yet again :o).

Just a little look back on how far we have come with Miss K:
August 8, 2011.  Just mere minutes after birth.  Those purple little feet and hands make me so sad.
About an hour after birth once they figured out why her coloring was off, now she's nice and pink though looking sad with all that stuff on her :o(.

Almost 24 hours old, still nice and pink and doing well :o).
6 days old and day 2 at home and doing great!
7 days old, hours after being admitted to PCMC.

One of the first days in PICU at PCMC.
PICU

Home?  You mean this isn't home?  And I get to see this place called "home" tonight?!?

Day 4 home from PCMC and nearly 1 month old.

2 months old.

3 months

Always smiling at 4 months

5 months, it's amazing how most of the time blogger will turn my photos for me but then just once it doesn't and I can't fix it.

6 months


7 months, her famous cheesy toothless grin.

8 months, one of my favorite smiles :o).

Our sweet 9 month old

Quite an energetic 10 month old

11 months, nearly 12 months.  Sorry, the pics end here since August has barely begun and all my photos are on the camera and not accessible right now.

5.14.2012

The Strange Life of Amiodarone

I think I really need to stop stalking the internet for information about SVT and medications...seriously, lately I'm finding more and more information that literally scares me to death.  My most recent finding is an article about Amiodarone.  I found it while trying to figure out what a skin rash caused by Amiodarone looks like.  As I've posted before Miss K has a chronic case of Eczema but a few weeks ago she had a breakout on her chin that turned into an infection.  After a visit to the Pediatrician I was not too concerned about it, especially after it cleared up within days with an antibiotic cream and Hydrocortizone.  This week she developed the same rash on her right elbow and it is now showing up on her left forearm and elbow as well.  I immediately started applying Hydrocortizone to the areas but it still has ended up looking like her chin did so I've started applying the antibiotic as well.  I'm not sure if I need to be concerned or not, I'm guessing it may be the sunscreen we are using that could be causing these rashes so I have stopped using it and switched to another and I hope it works.  Otherwise I am afraid she's starting to have a reaction to the Amiodarone, but in the back of my mind I can't help but think that the rash wouldn't go away with an antibiotic cream if that were the case, or would it????  So today I started researching again and found this article, there wasn't anything helpful about skin rashes but it was enough to terrify me about other side effects, seriously what am I giving my poor little girl?

Source:  http://heartdisease.about.com/library/weekly/mcurrent.htm

The strange life of amiodarone
By DrRich
Amiodarone is the most effective, and certainly the strangest, antiarrhythmic drug ever developed.  (Antiarrhythmic drugs are used to treat heart rhythm disturbances.  Click here for a quick review of heart rhythm disturbances.)  Anyone being treated with amiodarone should understand the idiosyncrasies - and the risks - associated with this highly effective drug.
The strange history of amiodarone in the U.S.
Amiodarone was developed in Belgium in the 1960s as a drug for treating angina, and was quickly released for marketing in most countries except the United States.  Doctors noticed that, in their patients placed on amiodarone, heart arrhythmias greatly diminished.  Clinicians quickly began using the drug to treat cardiac arrhythmias of all sorts.  Within a few years, word began filtering into the United States - amiodarone was a unique antiarrhythmic drug that was said to "always work, and had no side effects."  Both of these assertions, of course, proved false.
In the late 1970s, American doctors began obtaining amiodarone from Canada and Europe to use in their patients with life-threatening arrhythmias who did not respond to any other drugs.  The FDA sanctioned this activity on a limited basis, but the drug seemed so effective that literally hundreds of American electrophysiologists were soon obtaining the drug (one way or another) and by the mid 1980's tens of thousands of Americans were receiving the drug.  The Americans, as a group, studied the effects of amiodarone somewhat more rigorously than their overseas colleages, and here's what they found: Amiodarone was indeed far more effective at suppressing arrhythmias than any other drug they had ever seen, but it produces a bizarre series of side effects that doctors around the world seemed to have "missed."  By the mid 1980s, the FDA was essentially forced to release amiodarone for marketing in the U.S. - the foreign manufacturers of the drug threatened to cut off the American supply (having supplied free drug to thousands and thousands of Americans for more than 5 years,) and the American doctors impressed on the FDA what a medical disaster that would produce.  So, unlike any other drug in modern history, amiodarone became FDA approved without rigorous, FDA-approved randomized clinical trials.  The true breadth of amiodarone-induced side effects took more than a decade to uncover.
Why amiodarone is a strange drug
Amiodarone has several characteristics that make it unique. 
First, the drug takes weeks to achieve its maximum effectiveness.  This is because amiodarone is stored in most of the tissues of the body, and to "load" the body with the drug, all the tissues need to be saturated.  The typical "loading" regimen of amiodarone, therefore, is to use very large doses for a week or two, then taper the dosage over the next month or so.  It is not unusual to give patients 1200 or 1600 mg per day at first, and then maintain them on as little as 100 or 200 mg per day chronically. 
Second, amiodarone leaves the body very, very slowly.  It is not excreted (like most drugs) by the liver or the kidneys.  It is lost when amiodarone-containing human cells are lost - such as skin cells or cells from the GI tract, which are shed by the millions each day.  Thus, if it is decided that one needs to stop amiodarone, the drug remains in the body in measurable quantities for months and months.  The "half life" of the drug, in contrast to most other drugs, is measured in weeks instead of hours.
Third, because amiodarone is stored in many different kinds of tissues, it can produce side effects affecting many different organs.  Some of these side effects take months or years to develop, so it is never true that one can stop being vigilant. 
Fourth, amiodarone works through many different mechanisms, unlike most drugs.  It fits into two separate categories of antiarrhythmic drugs (Class I and Class III, for what it's worth); it acts as a beta blocker; it acts as a calcium blocker; it acts to dilate blood vessels; and it often acts to "block" the effect of thyroid horomone.
The strange side effects of amiodarone
One reason the side effects of amiodarone were not spotted for years was that they often take weeks or months to develop (unlike side effects from typical antiarrhythmic drugs, that usually appear within days).  Also, the kinds of side effects produced by amiodarone are not the kind that heart doctors typically expect with antiarrhythmic drugs. In any case, it took more than a decade for many European doctors to admit (even after the American medical literature became saturated with articles) that they had been missing some rather remarkable side effects.
Amiodarone commonly causes deposits to form on the cornea of the eyes - in fact, this occurs in virtually every one taking the drug.  These deposits often cause no visual disturbances, but not infrequently patients complain of "halo-vision," where looking at bright lights at night is like looking at the moon on a foggy evening.
Amiodarone can cause a very disfiguring blue-grey discoloration of the skin, generally in areas of sun exposure, and that gradually worsens over a period of years.  It is not clear that this "smurf syndrome" clears up when the drug is stopped.  In younger patients this side effect can be devastating.
Amiodarone often sensitizes the skin to sunlight, so that even trivial exposure can cause a fairly nasty sunburn.  People taking amiodarone must often cover the body completely when going out during the summer, especially in hot, humid climates.
Each amiodarone molecule contains four iodine atoms - so a typical dose of amiodarone provides far more iodine to the body than is needed.  It is thought to be the iodine that mediates the thyroid side effects of amiodarone.  The more common of these is hypothyroidism - low thyroid.  This, fortunately, is relatively easy to treat with thyroid medication.  But some patients develop hyperthyroidism - high thyroid - and this can be a real problem and a real challenge to treat. (They hyperthyroidism often does not respond to the "typical" treatment used for this problem.)
Amidoarone can cause liver toxicity, so liver enzymes need to be monitored periodically.
The most serious side effect of amiodarone is pulmonary toxicity - lung disease.  This comes in two flavors.  Amiodarone can produce an acute pulmonary syndrome that looks and acts just like typical pneumonia - sudden onset of cough and shortness of breath.  This condition usually improves rapidly once amiodarone is stopped.  It can occur within days of beginning amiodarone.  The second flavor is more insidious - it is a gradual, unnoticeable, "stiffening" of the lungs that both the doctor and patient can overlook until finally severe, probably irreversible lung damage is done.  This problem can occur years after the drug is begun, or as early as a few months after beginning amiodarone.
When should amiodarone be used?
If Satan were going to develop an antiarrhythmic drug, he would make one that suppressed arrhythmias very well (so people would want to use it,) had none of the typical side effects, but that had a host of atypical, relatively subtle, but ultimately dangerous side effects that doctors were likely to overlook.  He might not be satisfied with amiodarone, but would likely consider it a pretty good first approximation.
Amiodarone should be used for arrhythmias that are life-threatening or that are very disruptive to one's life, and for which there are no other reasonable therapies. Despite its drawbacks the drug has helped tens of thousands of patients, and has restored them to a nearly normal life.  When used appropriately, amiodarone can be a major benefit.
But because of the potential toxicity its use should be limited.  No doctor should blithely prescribe the drug, but should do so with reluctance, realizing that he/she is exposing the patient to long-term risks.  The doctor should, by prescribing the drug, be committing him/herself to being a long-term partner of the patient. He/she should carefully coach the patient on what problems to look for, and together they should be ever vigilant for the side effects of the drug. 

4.30.2012

Eczema Infection Update

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!

4.26.2012

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.

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: