As a child, do you remember waiting for that first snowflake to fall? You couldn’t wait to get out your sled or your old metal saucer pan and take off flying down a hill of snow. I remember my girlfriend and I spending what seemed like HOURS careening down the hill behind my Grandparents house. Swan Creek was at the bottom of that hill and we would wait till the last possible second to stick our feet out so we wouldn’t end up in the creek. Even at that, we would come in soaked and Grandma would put our mittens and snowsuits close to the old wood burning stove to dry things out so we could do it all over again later in the day.
Or maybe you remember someone trying to teach you how to skate?? Seems like it was usually the coldest day of the year when you’d see some patient Dad out there with a kid in tow (or maybe two kids if Dad was really brave!), double edged skates for balance and trying to convince them “you can do it!” The smile on those rosy, cold faces was worth gold to that Dad and I’m sure the kids have great memories of it too. Myself, I never DID learn how to skate, but I enjoyed playing on the ice or going ice fishing with my Grandpa.
If you found time after going sledding, ice skating or fishing, maybe you knew someone who could take you snowmobiling! What kid doesn’t like to climb onto a snowmobile and feel the wind ripping past him or her?? Or maybe you played hockey??
Then there was always the hot days of summer to look forward to. Did you have your favorite swimmin’ hole or lake? Maybe just an irrigation pond?? You probably went swimming some place; can’t you remember the thrill of finally getting to the lake, running down the beach to the shore, getting that initial shock of “The water IS COLD!” but ya dove in anyway? As a kid, wasn’t it always easier to just get totally under the water and absorb that shock of cold?? Or maybe you were lucky and the water wasn’t cold but luke warm?? And after a swim, maybe your parents took you for an ice cream cone??
Or maybe you just liked to laze in the back yard in a hammock with a cooling breeze blowing about, or maybe set up the tent in the back yard and hope it wasn’t too dewy during the night.
Now imagine as a kid having to give all that up or maybe never even having the chance to experience any of it.
That is exactly what has happened to one of our local little boys. He suffers from cold urticaria. And his little sister has been tested and it looks like she may have it as well.
I have the parent’s permission to tell you their story. Renae and I hope that it might help others who suffer from this condition. She and her husband, State Trooper David Moeggenborg were very surprised to find out that I have that same condition, so we’ve been comparing notes.
Renae and Dave had been trying for a long time to find out what was wrong with their little Joey. The first time they noticed a rash, Joey had been laying on the plastic covering the outside hot tub and there had been a bit of water on that plastic. So they attributed it to a reaction of being in some what old water and laying on the plastic. But then, when they got their swimming pool opened for the season, he ended up with more of this rash. They made an appointment with their Dr and was told that it was probably an allergic reaction to sunscreen and possibly the bleach in the pool, which made sense to them.
One day, the family went to the lake for some fun and for a swim. Little Joey ended up with the rash at the lake, and obviously there is no bleach in the lake. So, they thought it might be the sunscreen. (I hope I am getting sequence of events straight, so Renae, please forgive me if I am not).
Another day, at home, the kids rushed out and jumped in the pool before getting Mom’s permission to do so. They immediately were reprimanded for this and told to get out and get inside. Joey complained to his mom that he was cold and felt funny plus he had the rash (which she was going in to get Benadryl for as suggested by the Drs.). She told the kids to get dried off and she’d be back out in a minute. Without warning, she heard her older son SCREAMING that something was wrong with Joey. Renae was out there in an instant only to find Joey blue and cold and weak…and telling her “Mommy I can’t see you.” She managed to get the Benadryl down him and told the brother to call 911. She was carrying cold, convulsing little Joey in her arms into the house. By some miracle, David, her husband, decided to come home for lunch that day. When he saw his son, he thought from the color and the way he was acting he had drowned. By this time, Renae had Joey in the tub trying to get warm water over him to warm him up. Renae screamed to David “We’re loosing him!” So they got in the State Police car and headed for town. They met the ambulance on the way so got Joey inside and came into the hospital. His airway was almost completely closed and if Renae had NOT been able to get some Benadryl down him, they were told Joey most likely would have died. THIS WAS ALL DUE TO MISDIAGNOSIS OF THE CONDITION OF COLD URTICARIA. But they still didn’t know this at that time.
It wasn’t until they went to Mayo Clinic that they found out about this condition…didn’t even know there WAS such a thing. Local Drs and Drs at Marquette General kept saying he was allergic to molds, bleach and sunscreen. Once they described all of these symptoms to the Drs at Mayo, the Drs did the very simple, uncomplicated ice cube test. (I have shown you photos before of what that can look like) They placed an ice cube under his upper arm for a while and then took it away. Immediately, he developed a hive, which just kept spreading and spreading…Drs who were not even involved in the case stopped by to see this unusual “transformation”. It was unusual because the hive normally does not get that large from an ice cube test. He was given other allergy tests and nothing really showed up on those tests, so it WAS and IS cold urticaria.
Joey has just started to see a therapist for emotional support. When he almost died, he told his Mommy and Daddy that he saw a white, bright light! WHAT 6 YEAR OLD WOULD SAY SOMETHING LIKE THAT IF IT HAD NOT HAPPENED??!! This whole thing has left him emotionally traumatized and of course there is the sad fact that he no longer can play hockey, go outside at recess, go jump in a lake or even a heated pool…all the things you and I take for granted.
Renae and I want you to know about this in hopes if there are any other children OR ADULTS out there with unexplained “rashes”, check into it further. There is not a lot known about this condition and there is no cure, yet (you may remember I told you about the Dr from the University of Utah who is working on a cure and called me).
I ended up with hives on my feet and hands yesterday and Dan and I were walking around inside a heated building, but there was a concrete floor. I don’t know why I got them on my hands, other than the fact my hands are always cold. While we were outside looking at RV’s I started getting them on my ears and neck so I had to go back inside.
I have found that a cool breeze will trigger my hives and I’m pretty sure my days of eating ice cream are over. I don’t know if Joey has that problem or not, but he’s got enough on his plate so I hope he doesn’t have to give up cool breezes and ice cream. I KNOW I can’t go swimming; heated pool or not.
Joey now wears a medical alert bracelet with Cold Urticaria engraved on it and some other pertinent info on the back. I have ordered mine and it should be arriving soon. I am allergic to latex so I also had that put on my bracelet. On the backside of mine it states something like “Allergic to the cold. Could result in hives in mouth/throat leading to anaphylactic shock”. I have not had a breathing episode but that does not mean it could not happen. After that day I ended up with them all over my face and my face looked like one giant red pumpkin; let’s just say that scared me enough to cave in and order the bracelet.
I have a Dr appointment this afternoon in hopes of getting a chest X-ray ordered. I have this unexplained pressure and tightness in my upper chest on both sides that seemed to have started about the same time I got my red pumpkin face. I don’t know if there is any correlation, or if it is just stress or my hiatal hernia, but I want to make sure. And due to the fact I have very few white blood cells, to help keep me from getting sick from other sick people in the waiting room, they are going to put me in a room as soon as I get there. I thought that was very considerate of them and I appreciate it.
I am going to try to get Channel 9 and 10 to do a segment on their Healthy Living spot in hopes of getting more people educated. And I don’t just mean in case they or someone they know has hives, but in case they came upon someone having difficulty breathing and there was no other apparent reason. And if YOU can think of anyway to help publicize this, please let us know.
Our New Normal
4 weeks ago