 |
 |
 |
 |
#10355 - 01/07/05 09:00 PM
Re: Just got x-linked diagnosis
|
Member
Registered: 01/14/03
Posts: 515
Loc: virginia
|
Call me, my estriol level was a 0 ZERO with my second pregnancy, they doctors had no idea what was wrong with the baby, they said it was a "DOOMED" (their words) pregnancy and even pushed me toward an abortion. They said they never saw zero estriol and that the baby would probably be born dead, or not make it to term to begin with. I pushed for amnio after the second level ultrasound ruled out downs markers and other defects. My son is about to turn 8 in March and he is the best looking , "doomed" child I ever met. He has way too many girls calling the house and for a second grader has an extremely high score in math and science. His skin is dry compared to my other boys, which also have x linked ichthyosis, but no one knows he has it. His face, and body are normal. Only his shins it is noticeable. And his scalp has it, but people with dandruff have worse time than he has. I have met people with normal skin,( and I use this term loosly because what IS normal after all?)that have worse and more severe problems than my boys with x linked have ever gone through. I am sure people will write me after this, but I am so angry right now from every mom I have talked to that have Doctors telling them to abort. Im prochoice, I always have been, I understand that there are exceptions for every rule, but had I listened to the medical community in 1997, with out pushing for an amnio, that would have been the biggest mistake of my life, and my sons.
|
Top
|
|
|
|
|
 |
 |
 |
 |
 |
 |
 |
 |
#10358 - 01/13/05 03:06 AM
Re: Just got x-linked diagnosis
|
Member
Registered: 01/14/03
Posts: 515
Loc: virginia
|
Charmed is correct. There is a great website at e medicine. I had three c sections the last one doesnt count because it was an emergency c section. The first two were due to failure to progress, could not get past 1-2 with both. This can get complicated considering most doctors and hospitals will not consider a women in labor until they dilate to four. My labor with my first son was 32 hours. My second son was an induction do to low amniotic fluid (37 weeks) and they stripped the membranes two days prior, cervical gel the night before at the hospital and pitocin at 6 AM. = one fat round baby 8 pounds 6 ounces by c section at 4 50 PM. Hey I gave it a try for vbac. I do have to say this, several moms that I have met on this board delivered their x linked boys with no problems at all, vaginally. One mom that had girls had easy deliveries and the affected boys were difficult deliveries. You may or may not have this problem, and again, until SOMEONE DOES A STUDY, we wont know if its the estriol, or the steriod sulfatase defic, or what. Yes aquaphor I loved, we brought it with the third child, the peds Dr gave it to us with the second child. You will need written consent for the nursery to put anything on your newborn from your Peds DR or DERM. We had all of our boys room in, I really wasnt afraid of them catching anything. I have not had any of my boys get a skin infection related to X linked ichthyosis. Irritation to tags and seams, sometimes a tight waist band-even people with sensitive skin get this. I like cotton fabrics best, they work best with lotion. More than likely your son will not have any signs of x linked ichthyosis at birth. He may have the normal newborn quirky skin..you know the funny spots and millia, peeling, redness, (conehead) SMILE. At the end of the pregnancy you will need ultrasounds (sonagrams) to check amniotic fluid levels, and non stress tests are a good idea as well to be sure the placenta is functioning properly and the baby is not in distress. You should NOT go past your due date with an x linked baby, there is a high rate of stillborn babies that go past their due date. (cause unknown because no one has done a formal study) I found a website about the ear wax at www.entjournal.com/htm/article11 Also this is funny and maybe I should post this as a question to those that are older with x linked, but something about them NOT losing their hair...lol In my family when we trace it, this holds true but you cant always believe what you read! HA E medicine is a great web page I am going to write all of the pages I have found the information on so you can view them. Most are reputable sorces( such as dermatology, medical schools, hospital websites), some less reputable are animal studies,but it has nearly the same gene sequence and testing. Some are from Britain and some from Germany, luckily the German site is in English.
|
Top
|
|
|
|
|
 |
 |
 |
 |
 |
 |
 |
 |
#10359 - 01/13/05 03:32 AM
Re: Just got x-linked diagnosis
|
Member
Registered: 01/14/03
Posts: 515
Loc: virginia
|
Look up and search the following -steroid sulfatase deficiency -placental steroid sulfatase deficiency -sts -steroid sulfastase deficiency disease -ssdd -arylsulfatase C -ARSC1 -Gene map locus (Im sure you know this) Xp22.32 Do searchs on each of these topics, you will find more this way than entering x linked ichthyosis. They are all related to x linked ichthyosis. Another good website other than emedicine is www.ncbi.nlm.nih.gov type in omim first box) and x linked ichthyosis (second box) on their website for the search... its the johns hopkins university website. The wont go bald website is (had to add this)www.keratin.com/ac/baldnessbiology/baldnesscauses It relates that men with sts deficiency do not develope pattern alpecia regardless of family history. Yes I have read everything. LOL thats what moms do when they want to learn more for their children...if it was published I read it. North Carolina at chapel hill also has site info they were doing a study on skin and cholesterol. There is more, but I need sleep. [This message has been edited by threerxli (edited January 12, 2005).]
|
Top
|
|
|
|
|
 |
 |
 |
 |
|
|