pjlippert
Cathlete
Hi my Cathlete sisters!!
I wanted to share this interesting info with you since sooo many of you have been supportive and helpful in your info and encouragement!
I attended a really interesting class on Atopic Dermatitis or AD for short (eczema's proper name) and learned some interesting things.... and I thought I knew EVERYTHING about eczema! Why do some kids get eczema and others don't? Genetics obviously play a major role (Gee, thanks, Mom is what Randy must be thinking!). There is apparently a lack of proteins that are imortant for the normal skin barrier to work. People with eczema are lacking this barrier protein. There is a chance that they may grow out of it by 8, 10 or 12 years old... if they still have it at that age, it will be a lifelong condition. Lack of proper sleep is the number one problem for families of a chronically iil child with AD. Oh, and kids with AD also have extra bacteria on their skin which can cause problems.
There is a clinical term known as the Itch-Scratch cycle. The more you scratch an itch, the more it will itch, scratch, itch, scratch, itch. By patting the affected area instead of scratching it, it disrupts or confuses the nerves and the itching will subside!! Randy is doing great at not scratching. They use an intensive reward system to encourage the kids to pat and not scratch. I think I'll need another suitcase for all of the prizes he has earned!! That is the behaviorial aspect of it- but it will be an ongoing positive reinforcement. About 50% of kids with AD will end up with asthma and allergies. AD kids also don't sweat as effectively as "normal" kids and they tend to run hotter. Really interesting stuff.
I won't bore you with the treatments and types of medications because it's very extensive. Randy will take a bath EVERY night for 20 minutes and then followed up with sealing with lotions and ointments. I will send photos once we get home which will be by Friday. The staff will send home a very extensive plan for going forward. I will be switching to Nat Jewish for his allergy docs going forward.
So, that was my class today. I do have to admit that it has been quite tiring going into isolation day after day. The staff at NJ is absolutely wonderful and that has helped. Randy has befriended a nurse named Laura. She's silly and goofy and just adores Randy. She loves to hang out with Randy whenever she gets the chance!! So, Anne and Beka, as nurses, you are such a vitally important piece of the medical world! I think it is even more true when our children are involved! Randy has handled isolation incredibly well! Despite some meltdowns due to boredom, he has been tough- of course we wouldn't expect anything less from my wonderful son!!
We met some former Dallas Cowboys Cheerleaders yesterday in the elevator and they fell in love with Randy!! He wasn't sure how to behave around these stunning beauties but that added to his charm! One of the gals, Cynthia and I chatted this evening again and she told me that they had been praying for us since we met!! WOW!! God is truly ALL OVER this trip! We have met the most wonderful people! Granted there are your usual cranky city folk and crazy homeless but we don't get near their energy- just smile and move on- ya gotta stay somewhat tephlon coated- but even those folks have been friendlyish. This one crazy woman shouted some obscenities and noticed Randy and pardoned her language!! How cool is that!. People seem to remember us wherever we go!! The staff at the hotel has been incredible as well! Lots more gifts for Randy from the hotel staff and special deals for us! We are making friends everywhere we go!!ALL God once again!
We had a couple of hours off this afternoon so we found the park near the Museum of Natural History. Back to the hotel, Llittle India called my tummy and Randy had some Mc'D's and my home made nachos! Time to relax, I hope!
See you all very soon!!
Love and hugs!
Pam
P.S time for Mommy to chill for the evening. I am beyond thankful for all of the blessings during this insanely trying time, but continue to put ALL of my faith and trust in the Lord. Even Randy feels it and I truly believe that is a major factor in helping him heal!
I wanted to share this interesting info with you since sooo many of you have been supportive and helpful in your info and encouragement!
I attended a really interesting class on Atopic Dermatitis or AD for short (eczema's proper name) and learned some interesting things.... and I thought I knew EVERYTHING about eczema! Why do some kids get eczema and others don't? Genetics obviously play a major role (Gee, thanks, Mom is what Randy must be thinking!). There is apparently a lack of proteins that are imortant for the normal skin barrier to work. People with eczema are lacking this barrier protein. There is a chance that they may grow out of it by 8, 10 or 12 years old... if they still have it at that age, it will be a lifelong condition. Lack of proper sleep is the number one problem for families of a chronically iil child with AD. Oh, and kids with AD also have extra bacteria on their skin which can cause problems.
There is a clinical term known as the Itch-Scratch cycle. The more you scratch an itch, the more it will itch, scratch, itch, scratch, itch. By patting the affected area instead of scratching it, it disrupts or confuses the nerves and the itching will subside!! Randy is doing great at not scratching. They use an intensive reward system to encourage the kids to pat and not scratch. I think I'll need another suitcase for all of the prizes he has earned!! That is the behaviorial aspect of it- but it will be an ongoing positive reinforcement. About 50% of kids with AD will end up with asthma and allergies. AD kids also don't sweat as effectively as "normal" kids and they tend to run hotter. Really interesting stuff.
I won't bore you with the treatments and types of medications because it's very extensive. Randy will take a bath EVERY night for 20 minutes and then followed up with sealing with lotions and ointments. I will send photos once we get home which will be by Friday. The staff will send home a very extensive plan for going forward. I will be switching to Nat Jewish for his allergy docs going forward.
So, that was my class today. I do have to admit that it has been quite tiring going into isolation day after day. The staff at NJ is absolutely wonderful and that has helped. Randy has befriended a nurse named Laura. She's silly and goofy and just adores Randy. She loves to hang out with Randy whenever she gets the chance!! So, Anne and Beka, as nurses, you are such a vitally important piece of the medical world! I think it is even more true when our children are involved! Randy has handled isolation incredibly well! Despite some meltdowns due to boredom, he has been tough- of course we wouldn't expect anything less from my wonderful son!!
We met some former Dallas Cowboys Cheerleaders yesterday in the elevator and they fell in love with Randy!! He wasn't sure how to behave around these stunning beauties but that added to his charm! One of the gals, Cynthia and I chatted this evening again and she told me that they had been praying for us since we met!! WOW!! God is truly ALL OVER this trip! We have met the most wonderful people! Granted there are your usual cranky city folk and crazy homeless but we don't get near their energy- just smile and move on- ya gotta stay somewhat tephlon coated- but even those folks have been friendlyish. This one crazy woman shouted some obscenities and noticed Randy and pardoned her language!! How cool is that!. People seem to remember us wherever we go!! The staff at the hotel has been incredible as well! Lots more gifts for Randy from the hotel staff and special deals for us! We are making friends everywhere we go!!ALL God once again!
We had a couple of hours off this afternoon so we found the park near the Museum of Natural History. Back to the hotel, Llittle India called my tummy and Randy had some Mc'D's and my home made nachos! Time to relax, I hope!
See you all very soon!!
Love and hugs!
Pam
P.S time for Mommy to chill for the evening. I am beyond thankful for all of the blessings during this insanely trying time, but continue to put ALL of my faith and trust in the Lord. Even Randy feels it and I truly believe that is a major factor in helping him heal!
