Monday, October 05, 2009


It is a common complaint among SJS/TENS survivors that it is typically described as a "rare" condition, when it is our feeling that it is not only NOT rare, but we believe to be ever-increasing. It is horribly misdiagnosed (I was, TWICE) and when it is diagnosed, often not properly treated or reported. One reason I believe it isn't that rare is that I have noticed more of those creepy drug commercials on t.v. including vague descriptions of SJS in the warnings. The wording they choose really runs the gamut, from "serious rash" to "potentially life threatening skin reaction," followed by "see your doctor immediately."  

I receive a monthly Google Alert for anything containing the keywords "Stevens Johnson Syndrome" or "Toxic Epidermal Necrolysis." What usually arrives in my inbox is usually a combination of new drug warnings that include SJS/TENS or a story about a law suit or someone's death. 

So in-between inconsistent descriptions of SJS like, "rash (may be serious, eg, Stevens-Johnson syndrome)," "Bullous dermatologic reactions" and "exfoliative skin conditions including Stevens-Johnson syndrome" - there are people's real experiences, "SJS Made Me Look Like a Dead Man," "Judith Matthews Cronmiller, 64, of East Lansdowne, a registered nurse, died Saturday of complications from Stevens-Johnson syndrome, a skin disease." and "Kay Thornton, of Mississippi, lost her sight in 2000 when she came down with a case of Stevens-Johnson syndrome."

That last one cracks me up - "came down with a case.." - like it's a cold. That makes you go blind. And the one description that calls it an "exfoliative skin condition" makes it sound like it's no different than getting a facial peel done at the spa. 

It is apparent to me that no one is really holding these pharmaceutical companies responsible, not even to come up with a consistent and CLEAR definition of SJS. Is it just me, or is this plain WRONG?

The drug warnings were referring to the following medications:
Anti-Depressant, Alpenzin  Source
Muti-use, Gleevec (was approved for use in 8 different disorders... and despite having an SJS warning, the article is about the drug being awarded as best pharmaceutical product)  Source
Diabetes medication, Januvia/Janumet  Source

The real stories were from:
Dead Man
Lost Vision

Thursday, September 10, 2009


It has now been over 6 months since my (step)Dad, Holger, died unexpectedly of a heart attack. He was definitely one of those people who you would think was going to live forever, or at least certainly not die so young (he was only 48).

I'm sure my grief is nothing special - many people are really feeling this loss, but my memories of are unique, as experienced by me.

I remember nights on the back porch of whatever house we were living in at the time (we moved a lot), Holger would come out and share beers with me and whatever guy I was dating at the time (hey, remember, moved a lot) and bum cigarettes from us.  I think he enjoyed feeling like he was breaking the rules, remembering the rush of teenage rebellion and of course we were happy for the free and good quality beer versus the usual crap we had.

It was a fair exchange and Holger was always fun company. All of my friends always liked him, even if they were a bit intimidated initially by his height and deep Schwarzeneggeresque voice. I bet many of the guys had images of the bad guys in Die Hard in their heads when they heard his voice on the phone. And his accent wasn't even that strong.

I miss him so terribly much. I have to stop myself from thinking about all of the future events he won't be taking part in. Coen's first Christmas. Johannes getting married. And late night, beer-buzzed and smoky chats on the back porch of whatever house we're living in.

Sunday, August 23, 2009

Friday, July 31, 2009

Hello from Mommyland!

One of the very first pictures of us as Mother and Son
Matching seersucker shorts! Daddy Jon and baby Coen on the 4th of July.
5 months old!

Okay, so I officially sick at updating this blog and I am going to simply end my related feelings of guilt by accepting that I am no longer an active blogger and apologize to everyone who is even still "keeping up" with me this way: Sorry!

My life is busy with 5-month-old Coen, who was brought to this world Feb, 24th via a super-quick 1 & 1/2 hour delivery. While the speed of the event was surreal, it really allowed me to stick with my plan of going medication-free. My Mom was with us for the whole thing and was a real life-saver during my initiation to Motherhood.

Coen's name was chosen because of all of the meanings I found for it:
In Hebrew is means "God's Priest/Leader"
In old Dutch Koen means "Bold" and "Daring"
And in old German Koen means "Honest Counselor"

I feel especially blessed because Coen has been a healthy, happy and generally easy-going baby from the start. He's good at entertaining himself but also loves to interact with people. He's also quite the traveler: after our trip to the Cape next week, he will have flown on 11 flights, including a trip to Germany.

Sadly, the reason for many of these trips is because my dear (step)Dad, Holger, died only 11 days after Coen was born from a sudden heart attack. It has made this time very bitter-sweet for our family. It has been no simple task to deal with grief while also celebrating new life. Holger was so excited about Coen's arrival - it breaks my heart that they were not able to meet. I guess at least I was able to confirm that Holger did see some of the first photos that I had emailed only the day before his death.

Coen is 5 months and one week old today and coming along wonderfully in his development. He's rolling all over the place and is very eager to get crawling. He's so active and curious, I can tell this will be a true adventure once he's really mobile! We're working on sitting up even though he's more interested in standing. He's also very busy drooling and chewing in the on-going effort to cut teeth.

Coen's cousin, Ella, is 3+ weeks older and it's amazing to get a sneak-peek of what Coen might accomplish in just the next month! Coen has also developed friendships with Iso's 1-month-younger daughter, Helen, and R's 4-day-younger daughter, Izzy. I call them his German and American girlfriends :)

Well, that's about all - my life otherwise is full of laundry, friends, zumba, and my continued learning of sewing and embroidery. I'm looking forward to our October trip to Cancun! I'll try to post pictures... maybe by next year? ;)
At Oma and Opa's house in Germany for Coen's dedication service and later, the scattering of Holger's ashes in the Baltic Sea.
Coen at 5 months - the flash is bright!
See you later! Love you!!

Tuesday, May 05, 2009

Traveling with a baby

We just returned from a trip to Germany with our 2-month old baby boy. Here is what I learned:

As for traveling with a baby - I think you'll actually have more "trouble" with a toddler because he'll get restless and insist on getting out of his seat on the plane and running around. It's really hard to sit still that long!
But the real tricks I learned were: get ear drops! They numb the inner-ear so the air-pressure isn't quite as painful. You can also help out by trying to get the baby to suck on something on the ascent and descent. Oliver can suck on a lollipop to help pop his ears.
Bring twice as many onesies and bibs as you think you'll need! It's so much easier to change a bib than it is to change a whole outfit and a semi-wet outfit can be bearable if there is a dry onesie underneath. This is especially important if you won't have access to a washing machine. If you do use a washing machine, ask that they use less detergent than usual and run a 2nd rinse.

My Oma washed some of Coen's clothes and because most Europeans line dry, there were really crunchy and very detergenty-smelling. Or bring a cup of your own detergent if you want to ensure for baby's sensitive skin not being irritated.

We went back and forth on whether or not to bring the stroller. We did bring our collapsable stroller (a sturdy one) and were very glad for it. I assume the Brits do as much walking as Germans do, and unless your back is made of steel, the baby carrier will do a real number of your back after an hour of walking. But do not over-load the stroller on your day trips! Lots of train stations do not have elevators or escalators and you will have to carry the stroller up and down the stairs. Practice doing that a few times to find out who carries which end of the stroller better - it is awkward and you don't want to drop the baby. Same goes for escalators - we Americans aren't used to using one with a stroller but it's commonplace in Germany. Plan for the stroller to be two steps below the one you will stand on and be ready to tip the stroller slightly back towards you. Have a spotter on a step below the stroller in case you wobble.

BUT do bring a soft carrier or sling for the plane ride! I wore Coen for most of the flight - he was soothed and slept most of the time and my hands were still free. You can hold the baby, but your arms will get tired after an hour.

When you book your flight, call and ask for the "bassinet row" - it's the first row so there's no one in front of you and they can secure a little crib to the wall in front of you. We opted not to use the bassinet because it's unwieldy and and will block the person sitting by the window from getting out. 

If one of you is sitting in the aisle seat, be sure to hold the baby's head away from the aisle - you don't want to risk the soft noggin getting hit by the metal cart!

You are allowed to bring formula-related liquids through security now. We pre-filled bottles with filtered water. Once you are on the plane, ask whichever flight attendant seemed friendly for a large bottle of water to use for the rest of the flight. We brought 10 bottles for a 10 day trip. We really only needed that quantity for the flight itself because the plane water is not sterile to properly wash and re-use during the flight. Once on land, we really only needed about 5 bottles. We would wash them daily in the hotel sink. Take a towel right away and set it aside to dry the bottles on before anyone else can use it.

We were also allowed to bring Pedialyte, but it has to be refrigerated once opened. In Germany we bought electrolyte powder packets that you could add to water. We did all this because Coen had a little diarrhea the morning that we left but in the end it was good to have anyway because even after the diarrhea, the plane trip really dehydrated him and it's not good to give infants straight water because it can overwork their kidneys.

He did adjust to the time difference after about 4 days. Before that he would wake up about twice per night. The time change will probably be harder for you than the kids! try to share baby duty evenly between you and your spouse - one of you should be sleeping when the other one is up.  No child is better off with two exhausted parents! It's tricky though when you're all in the same hotel room. Try to set up a "baby area" near a dimly-lit place in the room, like near the bathroom. You can use the light coming through the cracked door so as to not wake everyone else up and hopefully get the baby to go right back to sleep!

Bring a few large-size lap pads or plastic-lined changer-covers to use as extra changing pads or for the baby to sleep on because who knows how clean the sheets are (or will remain once the baby's spit up on them!) Like these: Carter's Lap Pads or Boppy Changing Pad Liner (I am not endorsing these products, they are just what we used with success)

Bring a few large-size ziploc bags for clean bottles, dirty bottles, clean spare clothes, dirty clothes, whatever. Also a couple cloth/soft grocery bags can be used for day trips and folded back up into your diaper bag or luggage later.

Diapers: get an idea of how many you go through per day, per child. Don't bring a whole bunch of extras - they sell diapers over there and at least in Germany, they are the same brands as over here. You can use that space in the suitcase for better things, like burp cloths or blankets.

Bring your baby's soap! Burt's Bees sells a great baby travel kit - because the hotel soaps will be too harsh. Don't forget diaper rash cream, baby nail clippers and brush, too! I also packed a tube of vaseline and a few Q-tips for the cradle cap flakes.

Pay attention to your baby's cues and make sure they are getting enough quiet time each day. Try to find a quiet place to feed them and give you and and baby a little break from all the running around. No one likes a baby that's gone crazy from too much stimulation. 

Also, always be on the look-out for family bathrooms! They are great for giving everyone the chance to pee and not have to split the family/luggage up. You can usually find them in large shopping malls, airports and the like.

Last, don't let random people touch your baby's skin, especially the face or hands. One of the security people touched my son's cheek and I regret not saying, "Please don't touch him." to her in a firm tone. A sick baby will ruin your trip and that lady should have known not to do that, especially considering how she touches hundreds of people's things all day long. And wash your hands every chance you get - I am not a germ-a-phobe, but travel inherently involves touching all kinds of surfaces that are used by thousands of people all day (elevator buttons, stair rails, nasty airplane seats and arm rests, etc.).