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What's New
August 13, 2002 - 4 Month Check-up
Everything is good, Miah weighs 15 pounds now!!!
August 22 2002 - Genetics Clinic
Well the gentics clinic was interesting, they explained the gentics of the disease, which is way to complicated to explain on here. We are moving on to DNA testing to see where the missing link is. Hopefully the insurance will cover it because it is a test.
October 26th 2002-Appt. at WI Dermatology conference.
We had a good time at the conference.
We were among others woth skin problems and all together Miah saw about 40 doctors.
Her regular doctor said her skin was looking real
good and now we will not go until April unless there is a problem!
We were among others woth skin problems and all together Miah saw about 40 doctors.
Her regular doctor said her skin was looking real
good and now we will not go until April unless there is a problem!
March 10, 2003:
We went to the doctor today
and we are finding out about Miah's different cycles.
We can actually time them now. She is doing well and weighing in
at 22 pounds and growing tall!
We will be back to Dr. Esterly on May 1st for a whole work up again.
We went to the doctor today
and we are finding out about Miah's different cycles.
We can actually time them now. She is doing well and weighing in
at 22 pounds and growing tall!
We will be back to Dr. Esterly on May 1st for a whole work up again.
SEPTEMPBER 17TH -
DEMATOLOGY FOLLOW-UP
Miah is doing good the EHK is darker now and they said that is normal and will stay darker. We got more samples of moisturizers to try and some other things. No more Lac-hydren, we were givin U-Lactin to try.
We will be going to a dermatology conference Oct. 26 2002 for her next appt. I get to meet other parents and other doctors get to look at Miah and learn more about EHK!! We cant wait!!
She is 16 pounds now (what a big baby)!
DEMATOLOGY FOLLOW-UP
Miah is doing good the EHK is darker now and they said that is normal and will stay darker. We got more samples of moisturizers to try and some other things. No more Lac-hydren, we were givin U-Lactin to try.
We will be going to a dermatology conference Oct. 26 2002 for her next appt. I get to meet other parents and other doctors get to look at Miah and learn more about EHK!! We cant wait!!
She is 16 pounds now (what a big baby)!
December 3rd, 2002
Miah's DNA testing is back!!
Her mutation is on the keritan 1 gene, usally people with this mutation have their palms
and soles covered with EHK. Miah does not have symptoms of this yet.
It is possible that she will have these sypmtoms in the future, all we can do is wait.
See the full results on the GENEDX Page.
Miah's DNA testing is back!!
Her mutation is on the keritan 1 gene, usally people with this mutation have their palms
and soles covered with EHK. Miah does not have symptoms of this yet.
It is possible that she will have these sypmtoms in the future, all we can do is wait.
See the full results on the GENEDX Page.
Miah's 1st Christmas!!!
Come and see pictures!! Miah now has 50 percent of her stomach covered with EHK.
Her legs are not scaley but dry and pigment has changed.
Her back has spots and her whole neck are is covered.
Come and see pictures!! Miah now has 50 percent of her stomach covered with EHK.
Her legs are not scaley but dry and pigment has changed.
Her back has spots and her whole neck are is covered.