Thank you God for not passing this on to our children. Thank you God for sparing us the possibility of Harlequin Ichthyosis or one ov the other variations in our children, as it was a possibility that we didn't even know about.
I didn't know how blessed we really were until just this moment.
4 comments:
Your link doesn't pull up anything...
I googled it, and all I can say is that.... some things in life do happen for a reason, don't they? They must. Matt was supposed to wait until you were done having sweet babies before he went to the doctor about something that has challenged him all his life, because if he had done so sooner, you may not have risked having them.
I'm glad he finally went, and I hope they can do something to help him out.
Take note of that lucky star that must have been hovering over your heads, for sure.
I think a lot of doctors give blanket statement diagnosises.(sp)
All of my daycare kids that have gone to the doctor as of late have had 5 minutes of the doctors time and the conclusion that it is a virus. Well no s&%t sherlock but what are we going to do to relieve the symptoms of these children with diaper rash so bad their butt is bleeding- there mr. smarty pants.
Also if he has parents like mine...and they are told that it something that you just have to deal with....they just tell you to deal with it. Yeh it sucks...what do you do?
Glad he finally got a diagnosis and now will be able to seek treatment specifically. As a lifetime sufferer of atopic excema and getting much teasing myself. I feel his pain.
WHOA! I find it interesting that I have come across your blog.
My oldest son was diagnosed with "exzema" at six weeks of age. I thought he had cradle cap, but noticed it was spreading all over his body. So I took him to a derm. By the time he was two months old, he was already scratching his little head with his tiny little hands. He has gone to the same derm since six weeks of age.
He will be 14 in three weeks and has gotten much better over the years. Happily, he LOVES snakes and enjoys that his skin is similar. We find chunks of skin all over the house. Has always needed to be "greased up" with various creams, ointments, etc. At his worst, his eyes have swollen shut, his ears have become bright red and swollen. His skin has alternated between the scaly thickness in those photos on that site, and a thick hard shell that felt and sounded like wood when we knocked on it. I have some absolutely horrible photos, that he has forbidden me to show to anyone.
He had a nightmare when he was five years old. He dreamt that he was soaking in the tub (which he had to do every night) before he got "greased up" with all his ointments. He was itchy and was scratching so much that he eventually glanced down in the tub and it was full of blood, he had no skin left and chunks of his skin were floating on the surface of that water!??! At FIVE YEARS OF AGE, this sweet little angel had to suffer so much that this type of horror was on his mind.
When we take him to his derm for check-ups, he has mentioned this ichthyosis. Just in a casual way, like "Oh yes, that's just ichthyosis..." and then on to other things. I feel bad that I never paid much attention to what that meant. I assumed that he would tell me more if need be. We have always been happy with him. When we moved to SC for three years and my son was so bad that they wanted to hospitalize him in Charleston, I called this derm up here and cried on the phone with him for half an hour. He was SO SWEET and calmed me a bit and gave me ideas to sooth my son's pain and discomfort. So he HAS been wonderful, I am surprised that he is not more concerned about this. If this is something he has always had, I wonder why he didn't do something when my son was an infant??
Sorry to go on so long, this is just amazing to me! I need to take him back to his derm and see if there is something else we can do for my son.
I am so sorry for your husband's pain. I can't believe his parents! My husband and I have done anything we can to help our son. It is a very helpless feeling.
Lowa.. it IS odd that we "ran" into each other, isn't it!
The more I research Ichthyosis, the sacrier it becomes. I am shocked that your derm hadn't shown more concern! My next horror hurdle is finding out if my children are carriers... because although we risked passing this on to our kids ( unknowingly) and came out lucky, perhaps THEY won't be so willing. Lamellar Ichthyosis and other presentations are a real risk. I am SO scared for my children right now!
Your son.... what a strong young man. I hurt for that 5 year old little boy. When Matt was that age he'd use his mothers foot pumice stone and scrape and scratch at his arms and legs so much that he'd end up with huge bleeding/weeping areas on his body. The urge to be "normal" was so strong that he'd hurt himself, willingly, all the time, in an effort to be. His parents grounded him for using his mothers bath things. They taught him not to bathe.. Hot water dries out your skin, right? So instead of bathing him with warm water and lotioning his body, they just didn't bathe him. Great.
Your son is lucky to have you. I am learning that many forms of ichthyosis are easily managed with proper bathing/lubricating routeins. Matt has been prescribed a Salicylic Acid (Salex) treatment and already we see a difference in his most problematic areas. Have you found any particularly effective treatments for your son?
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