Happy sunshine everyone

[mogleyboo]

Since it has been such a long time since I had the time to post, I decided I would take a minute and write and find out how all of our little (or not so little) ones are doing. How is Lillian, Celena, Kylynn, Emily and whoever else my fried brain can't remember.
I hope now that it is starting to get warm in some places that the Psoriasis Fairy is out making all of them clear for a while.
Unfortunately, Hunter is not doing so well right now. I have been a really bad mommy lately and neglected his treatments for the past two months. Since they have been so inconsistent, needless to say, he is pretty bad. But then again, he has looked worse before.
Anyway, we went to the derm and found out that he has developed an allergy to certain metals and that is why the skin on his tummy has been so bad for the past year. The snaps and buckles from his pants and belt cause a reaction and thanks to the K effect the psoriasis appears and makes it look worse. The derm did give us a new prescrition for a product called Elidel. It's an ezema med that she thought might help. (Heck it's worth a try when I get free samples for the derm.) It has very low side effects and I can use it on Hunter's face and ears. It seems to work faily well and is faster than Dovenex. Unfortunetly, even with our insurance, it is still $65 a tube so this stuff is like gold. Almost shot the 18 month old when she got a hold of it and put half a tube on her doll. But then I couldn't help but laugh when I thought about it, monkey see, monkey do. I guess she has seen us putting a lot of medicine on Hunter in her life.
Anyway, let us know how everyone, kids and moms too, is doing.
Laura

[G.J.]

Hello Laura,
I am soooooo sad to hear that Hunter is not doing well. I've thought about you and he. Celena is doing well, I am not. I have psor all over my legs. I give up. I could do the steriod, sun booth like I do every year but for now I'm just going to let it go and wear jeans for awhile and hope for fading. But my princess is pretty clear (that's what really matters to me). Honest to golly, ever since her tonsils were taken out (last June, her entire body cleared and she has not had one cold all year (zero absent days). Thus, no flares of psor either!! She's still polka dotted everywhere with different colored pigments, but it doesn't matter to her (it never really did though - I was the one that got just sick about her psor). Don't beat yourself up about not treating Hunter steadily, sometimes there's nothing wrong with a break for everybody! Take care and yes, let the sun shine in.
Gail

[Shana Hansen]

Hi Laura,
Good to hear from you, but not so good about Hunter, Hang in there. I know you must stay running and I don't think there is anything wrong with a break for the both of you for a little while. Lillian is still her happy little self and always making us laugh with her antics. She had surgery last Thursday, where they scoped her and were hoping to dialate her eosphagus but it was still very fragile and already constantly bleeding without them even going down so they didn't. She has a stricture that has closed it up to about 3mm and the scope is 8-9mm so they weren't able to go past the stricture to see the bottom half. However they feel like it had healed some and were able to do biopsies this time. They are starting to wean her off the cyclosporine, so that is good, she will just be taking the prednisilone and getting remicade treatments. Her skin is looking beautiful. Our only problem is the granulation tissue around her g-button,on her bottom and in her mouth, has anyone else had problems with granulation tissue at wound sites? Anyway on a postive note she has now had her cochlear implant turned on for nearly 2 months and is doing excellant with it. She is starting to recognize sounds like the telephone and is babbling up a storm, except when we step in to the speech therapy room, then she won't say boo. Very funny, I think she must be concentrating on listening when we're there or at least that's what we tell the speech therapist. Well I hope everyone is enjoying spring and healing up in the sunny days.
Take Care
Shana

[SANDRA LEE]

Hi Sunshine Ladies,
Here in NJ summer is just around the corner. I hope all of our children will enjoy this time. I know Kylynn loves the summer.
Don't beat yourself up about Hunter's
treatments. I have allowed Kylynn's body and immune system to do the work on her skin. Yes, we do treatments and chase her rashes when her body can't keep up. Sometimes these children need a break. Too bad about his allergies.
Kylynn is having a good day. It is Mother's Day and she gave me flowers. This week has been interesting. We filmed an informational web cam video on growing up psoriasis. It will be on the healthology web site around the end of June. Kylynn had a good time doing it. It made us realize that we are so use to having psoriasis for her whole life, that when a child or teenager or even an adult gets it at a later time in their life they must be devastated.We are use to it. It is normal to us.
Kylynn went to neurology this week and she needs to have 2 brain cat scans.(she cant have an mri because she has braces on her teeth) She needs this because she has always had such severe headaches. They want to rule out brain swelling. She needs a scan without a headache and then one during a headache. Her hereditary angioedema disease is so unknown that the neurologists have never dealt with a child with it before. So she is their first and with uncontrollable body swelling we need to find out if the brain swells too.
Last week was bad for headaches and hae attacks on her face and neck. This week will be better, I hope.
Kylynn's psoriasis looks good because of the hae medicine. Her skin is still tricolored spots. Her legs and face and ears are still broken out but her arms look good.
Have a great week everyone.
Take care,
Sandy

[Tephywashere]

OK so as usual.....I am the last to respond..
I am so glad to hear from all of you....I don't know if I ever really fully thanked you for all the support that you gave me and Emily last year.......I couldn't have made it without you all!

Sorry to hear that Hunter is still very spotty....I'm sure those allergies have got to be making it worse...but hey summer is here and if I remember right that helps him quite a bit! And how are you doing?

Wow! It sounds like everyone is having a busy spring/summer....we have had a rough winter/spring....one broken arm(Joseph)... one broken leg(Emily) and 19 stitches in the head(Joseph)....Joey takes it in stride... so did Emily but my gosh the poor little thing has been in some sort of cast for the last two months...she is killer in the wheelchair(we couldn't find crutches small enough for her)...Hopefully Monday she gets the last cast off! Keep your fingers crossed!
We have had a great year though for her P... she has been about 99.5% clear since about October...she is even tanning almost evenly I must admit I am scared though about when they take the cast off...but we will deal with what we get!
It's good to see you are all doing well!
Stephanie
Emily's Mom

[SANDRA LEE]

Wow, what a year you have had. I hope all of the bones are healing. Try to stay out of the emergency room.

I hope the summer is wonderful for everyone. My family is doing well.

Talk to you later,
Sandy