posted April 09, 2003 06:20 PM               

I don't believe that EHK in it's self is the key factor why your daughter keeps waking up at night, however there are a few comfort factors that could make a world of difference in how often she wakes up. Here are just a few suggestions from a mom who's not only been there done that with her own EHK child, but has experienced these things herself as someone who has EHK herself.

1. Itching can be horendous thing for her to put up with and for some reason night time seems to be the worse time. you may want to talk to your Doctor about the possibility of giving her Benedryl at night to help her keep from itching and to rest through the night. I have taken this pretty much all my life and it's been a blessing, i also have given my daughter benedryl for itching during times that it became too intense for her to deal with.

2. Heat is another factor for us, we tend to overheat EXTREMELY easy and if she's covered up a bit too warm, not only will she be uncomfortable due to being to warm, but when we get overheated it seems to make the itching even that much worse. So not only is she dealing with being too hot, but she's also dealing with an extreme intensity in the itching.

3. Blistering of any kind, rather this be caused by infection or just from getting to warm during the night. Blisters can appear over night with us, and if she's getting too warm, this can cause the skin to get too soft and form water blisters in those areas that are moist from being overheated and obviously this can cause some discomfort.

As for her being thirsty, perhaps you could offer her some water prior to putting her down for the night and maybe that will help. Once again, these are just a few suggestions from a mom who's been there done that and many times had to look at these areas for her own daughters comfort as well as mine.

I would also like to take the time to welcome you to our group. We have a WONDERFUL group of people here who will be a great support to you in the years to come. Through the difficulties you'll no doubtedly face as your daughter grows and starts entering a more social situation rather it be school, church, day care, whatever there will be things that will come up that will break your heart, but whatever you do STAY STRONG, stand firm and start teaching your daughter at a young age about her skin condition.

I have come across so much ignorance in the world that it's amazed me at times, but i'm a firm advocated for encouraging people to ask questions and lots of them. I found through my lifetime that if they don't feel they can ask, they'll come up with their own conclusions and more than likely be totally incorrect on what they THINK is wrong with her.

When i was 14 i was climbing a fence to take a shortcut to a friends house when this woman seen me and started screaming "DON'T DO IT, DON'T DO IT!!!" I had no clue what she was talking about but the fence i was climbing was like in a T position and on the other side of the top part of that T was a freeway. Well to come to find out, she thought i had cancer and was going to jump off onto the freeway and commit suicide. You see, I also happened to be born without my left leg (totally EHK unrelated.) but she thought the loss of my leg was due to the "cancer" i obviously had. So i learned at a young age to encourage questions.

It's really very comical to see a seven year old child sitting a Dermatologist down to educated them on something they should already know, but from day one of my daughter starting school, she would go in introduce herself, tell the class what she has and explaine it to the in the best way possible then open herself up for questions to eleviate their fears. In doing this, it got a lot of their concerns and questions out in the open and made it much easier for them to accept her and not fear her. After all, anything we don't understand we fear, and how can we understand about something or learn about it if were not taught so this helped a lot in that area. Now, don't get me wrong, she still had many problems over the years with kids and teachers, only because kids can be mean and some adults aren't much better, but her experience wasn't near as bad as mine growing up and i believe it's largly due to her willingness and ability to be able to do this.

If you look back on the BB you'll see where a few years ago we had a situation come up where my daughter was greatly discriminated against not by kids, but by the techers of her Jr. High School. For the first year in her life of starting school, she was being denied the right to give her yearly presentation to her classes and she had nothing but problems with both the kids and the teachers. This created a HUGE mess and i was not willing to sit down and take it or make her go through it. I stood my ground and with the tremendous support from God, THIS GROUP, my stubborness, and the news media we got it taken care of rather quickly. But our people flooded them with so much mail, both email's as well as regular mail, and phone calls that they begged me to ease up on them even though THEY were the ones who created the mess. I asure you, that they will think twice the next time before they act out of ignorance and discriminate against someone simply because they may be a little different.

Anyway, if you'd like to read about what happened with my daughter i'm sure you can find it on here somewhere, my username is prayerkaren and my daughter's is Cindie, we lived in Fort Smith, AR at the time this all happened. I strongly encourage you to keep in close contact with the people on this site as well as the F.I.R.S.T. Foundation for they can be your biggest advocate in times of need, your best support morally as well as emotionally and you will gain some wonderful friends that you'll be proud to call "friend".

If at anytime you have any questions that you think just maybe i can help you with or suggestions please don't hesitate to email me and ask.

Once again, i'd like to welcome you all to the group and were glad to have you. May the Lord bless your families greatly.

Sincerely,
Karen Sawyer
prayerkaren
Hemet, CA