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|Daughter's Inpatient Treatment and Trial
Part I, November 19, 1999
Mr. Dewke: Hello again! I would like to fill you and everyone else in. [For background on Dedo's six year-old daughter's trials at elementary school, see links at bottom.]
In the beginning of October we were told my daughter would go into the hospital over Christmas break for the light treatments. However, when they saw her November 5th (with 75% coverage) they wanted to put her in immediately. That should give you some indication just how fast it was spreadingjust in one month's time it had gotten significantly worse. Anyway, she went in on the 10th. They gave her lights twice a day until they burned her. So, no lights for Saturday or Sunday. By Monday she was peeling and they started lights again. They have given her lights all week long. Today is Friday, November 19. She is being discharged! She will still have lights three times next week and twice the week after that. We will get new prescriptions, I'm not sure what stuff they will give her.
I must say that I really wasn't sure about giving her this treatment only because I was never hospitalized for my P even though it was real bad when I was a kid. I seem to be "growing out of it." It seems that as I got older it changed and mellowed. It's still always there but I don't really get flare-ups very often and when I do its just more small spots. Of course, I thought maybe I'm better off now because I never went through any intensive skin-damaging therapies as a child. I thought maybe by sending my daughter to the hospital now her skin might be damaged later. I also thought, what if it doesn't work, or what if it works but not for long? Putting your little girl into the hospital for treatments you never had to endure is not an easy decision. I'm sure you can imagine all the second guessing and rationalizing that went on. When they said we want her in ASAP it was like hitting a wall: "OK. No more should-we or shouldn't-we indecision." Finally, we decided to just do it.
I'm glad we did. I am praying that this will last a long long time. She looks so good! All the patches feel like regular skin to the touch! They are still visible, but not active (they are not raised up at all and there is no broken skin). The Dr. says the spots will fade away soon. The light treatment has worked. It is truly amazing to see such immediate relief.
She is still itchy on her scalp, but even that has dramatically improved. Every night they put some med on her scalp then wrapped her head in Saran Wrap. Now all of the patches have gone. It took a few days to comb them all out. A lot of hair came out; it's real noticeable around the hairline. It should grow back.
While we were up there we participated in the genealogy study. She gave blood, they took a picture of her back. Her Dad gave blood, he doesn't have P. I gave blood, they took a picture of my leg. My Mom and dad are going to give blood although neither have it. I'm not sure if his Mom and dad will give blood but it would be nice since his Mom has it.
Thanks for the support. -Dedo
Part II, December 8, 1999
Mr. Dewke, Hello, happy holidays.
When I wrote last my daughter had just been discharged from the hospital. She looked fantastic, we were just hoping it would last.
In the hospital, my daughter received UVB light exposure and a regimen of creams up to three times daily. She was given topical steroids, 'water washable base,' and a medicated type of mineral oil for her scalp (called D&P or something like that). She was also allowed an anti-itch medication that made her very tired.
Her skin got so clear in the hospital! When she was being discharged the derm was saying probably 2 visits a week [for light treatments] to keep it like that.
She was discharged the Friday before Thanksgiving. We still kept her out of school for the M-T-W of that week, because she was having outpatient light treatment on those daysnot that if she has light treatments she can't go to school. It's that we live an hour away from the hospital, her father only lives 20 minutes from the hospital. So, she just stayed at his house. It was more convenient for all of us.
She went back to school on the 29th of November, 10 days after her 10-day stay at the hospital. She went back to school with very bad flaking of the scalp and big red spots on her face (the P was not visible on her face while she was in the hospital).
The P is already active and in some spots getting scaly. in other words it's coming back. There are even new patches breaking out in that rash style that I've mentioned before.
So much for that 'remission' the doctor was so sure of.
As of today she has been out 18 days. The derm wants her up there 4 times a week now. I want to scream.
Also she became ill with sore throat and fever the 2nd day back at school. We had to keep her out for another two days so she could get a culture done to check for strep infection. It came back negative, at least that was good news.
We are currently residents of Ohio, so we are going to move to Michigan ASAP to be closer to the U of M, because that is where she gets her treatment.
We are going to move to the same school district in which her father lives. That public school district has a Montessori-type school, to which we will enroll her. The district also employs a teacher to visit any child who has to be out of school for more than a week. The Motts Children Hospital also has a teacher on staff. It's nice to have both available, and to know whenever she has to go back to the hospital the two teachers will work together.
The hardest part of this has been watching my daughter go through it. While in the hospital she got better so quickly it was amazing. She didn't believe it. I told her how great her skin looked several times and she got tears in her eyes. She disagreed for several days. When she was finally able to look in the mirror and not see the P, she defiantly perked up! So, it is very hard now to watch her reaction to the returning lesions.
Well, it seems there are still a thousand things to tell you about. However, I will only mention one more thing: my accommodations during my daughters hospital stay.
My husband and our child joined me for part of the time. We all fit nicely in a room at the Ronald McDonald House. I cannot say enough nice things about that place. The cost is $8.00 a day. They gave me a 30 minute calling card, but there is no phone in your room. Just payphones around the house, and some phones with a direct line to the hospital. You have to share a big bathroom, and you have a small chore to do each day. They have several washers and dryers and three game rooms, one devoted just to toys. Really, just a very relaxing place. Let me take a moment to address anyone who reads this: Check out your local Ronald McDonald House, and remember to save those little tabs from your pop cans. The pop tabs can be turned in to help support the Ronald McDonald House. -Dedo
Ed's Response: I sat here for the longest time, Dedo, staring at the screen, occasionally reaching up to the keyboard then putting my hands back in my lap. What I really want to do is pass around some hugs ... and I can't do that at the keyboard. As I write this (December 31st, 7:00 a.m.), my two 6 year-old granddaughters are asleep in "their room" at my house. We were busy last night taking "computer pictures" to email to distant family. While they posed and I snapped we wondered aloud about what the Y2K bug will look like....
While I think about the recent events you describe in your emails, I reflect on the faces of my two angels, and then I have to stop typing again ... for a few minutes....
I am so glad you are strong for your daughter's sake! Is it wrong for me to be grateful that you have been there and you know what your little girl is going through?
We know that there are no pat solutions for P at this time. It was natural for us all to have high hopes about the inpatient treatment for your daughter, and we could argue (I suppose) about whether or not the derm was overly optimistic (you knew he was), but the remaining factafter going through this inpatient cycleis that the regimen of light therapy and topicals worked, but intensity of treatment, and quick onset of improvement, did not correlate with longevity of remission. We find ourselves in a glass-half-full vs. glass-half-empty situation. You are already showing your approachyour glass is half fullby making plans to be closer to the resources your daughter will need to continue treatments. It will take time to discover a course that works best for your daughter, but we know she is reactive to the therapy, and we know that you are going to be relentless about finding what works best for her. I don't know you personally, Dedo, but I feel a great deal of vicarious pride for your spirit and your plans. You are teaching me and others who visit here some important lessons in attitude and care-giving.
Please keep the reports coming. -Ed
(1st email) School is Mistaking
Daughter's P for Head Lice