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Thursday, October 14, 2010

Please pray for wisdom with our son's Scleroderma


I have so many fun posts planned! I actually made something crafty and I have a great giveaway in store...but right now my heart is heavy and I need you friends.

Our son Nate, 14, was diagnosed with Scleroderma Coupe de Sabre about a year ago. This is a rare disease and not much is known about what causes it or what it will do. It is considered untreatable. His doesn't not seem to be systemic (which would be fatal) and has remained superficial (only affecting his tissue and muscles.) His started on his chin and is continuing up the left side of his face. He has discoloration on his chin, and above his lip. The disease has taken the left side of his lip, and he has lost all flesh and fatty tissue. He now has skin on bone until right below his eye.

Nate is experiencing a very rare and not very documented disease. It is referred to as an "orphan disease." No one really knows what it will do. It affects people very differently.

The next season is crucial for him. He has had two episodes of pain. The pain normally associated with this disease and Parry Romberg Symdrome is excruciating and untreatable. It is referred to by Drs as the "suicide disease." His pain hasn't been that bad. Pray it doesn't continue. With the onset of this pain many experience seizures and stroke. Our hope and that of his Dr. would be that because his manifestations have been superficial so far they wouldn’t cause these symptoms. Because there is no true pattern this disease follows, we are left to speculate and wonder. I have talked to two families whose chidlren showed the symptoms Nate does and then developed seizures and one a stroke.

Some lose their organs. It appears that Nate's eye will not be affected by the disease but losing the fatty tissue in that area can cause the eye to sink bank into the socket and disrupt sight. There is a woman on youtube who "looks fine" but describes her Sceleroderma and deteriorating sight.

Nate is being referred to a neurologist, an ophthalmologist and will have blood tests done. These may or may not show us what is going on but will serve as a base line to anything that does happen. Nate is being prescribed medication that we aren't sure about. There are also some routes that we would like to take nutritionally. The drugs that are typically prescribed would inhibit the immune system (because his is attacking himself.) I have not seen cases where they truly help the way that we would like to see. There are some nutritional things (like shitake mushrooms) that can help calm his immune system and balance. He was prescribed anti-inflammatory drugs. There are things that can be done nutritionally to do this but they would drastically reduce his diet.(no diary, wheat, corn or eggs, among other things) Keep in mind that nothing has been shown to slow down or combat this disease. We, as the parents of a child afflicted are trying to find a cure for an incurable disease.

Please pray for wisdom, for answers, for peace. For the physical and emotional energy we will need during this time. For unity and laughter for us together as a family.

Nate continues to have an amazing attitude through this all. His parents are worried yet trusting God. How will we pay for any of this? How can we quickly figure this all out when the experts can't? What is going to happen to our son? What is his future? Where would a stroke, loss of eyesight, seizures or chronic pain leave him? What about all the dreams we have for our first born?

I have no eloquence right now.  I included pictrures of Nate because he really doesn't look that bad. He does have severe facial deformity but because of it's placement it needs to be pointed out. So far. These are especially odd pictures because he is ALWAYS smiling. Even when it really isnt the right time to be:)



There is some information online that will better explain the things that I had trouble with
Sceroderma Coupe de Sabre:





Parry-Romberg syndrome:




Neuropathic Facial Pain and TN (Trigeminal Neuralgia)


God Bless!

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19 comments:

Jen @ Forever, For Always... said...

Praying for you, your son, and your entire family!!

Andria said...

Sorry you all are going through this. You are so right to trust God, only He knows the plan. I am praying for you all and espically for Nate.

wendy said...

I'm sorry you have this in your life, I will pray for you guys. What a handsome guy he is- those eyes! I can attest to those diet changes affecting the immune system for the better. It's overwhelming and all-consuming to begin that change, but it is very doable and gets easier once you familiarize yourself with the products you CAN buy and eat. Don't think of it as reducing his diet...just eating different stuff! If it were reducing, I would've lost weight by now--lol! Let me know when you need menu ideas!

Holly said...

I am praying for your family during the difficult time, praying that doctors and researches can find out more about this condition. Please keep us posted, and know that you have friends on your side listening.

Summer said...

Praying for Nate and your family.

2 Corinthians 4:7 - God can give us that "power beyond what is normal" to keep us strengthened during times like these.

Isaiah 33:24 - We can look forward to a time were no one will say they are sick. (Revelation 21:1-5)

Dawna said...

Praying for your son and the whole family. HUGS

Rheanna said...

oh my goodness. I am so sorry. I will praying for you guys that you are able to remain strong and at peace. I know God is there walking with you as you go through this.

bless you
Rheanna

bluecottonmemory said...

Moms do not need words to be eloquent - their hearts, like your are eloquent enough. You and your son are in my prayers! Praying for Healing!

Staci said...

Hopping back through… and a new follower too! Praying for your son, your family, and the doctors! It is so hard when it's our child and we can not do anything for them.

7 on a Shoestring

Roshan John said...

Check out this CNN article. Maybe the same Doctor can help you and your son?

http://www.cnn.com/2011/HEALTH/02/25/surgery.parry.romberg.disorder/index.html?hpt=C2

musicalmel said...

http://www.dailymail.co.uk/health/article-1360820/The-little-girl-doctors-told-face-eating-away--theres-cure.html

In this article, a girl with the same disease is now being treated for it. Maybe you can find somebody? I do hope your son will be okay, and will keep him in mt prayers (:

Brittany said...

I am also 14 and have had Scleroderma since i was four. i know what your family is going through since mine is going through the same thing. Stay strong and trust in God xoxo

Frazier said...

I am 20 years old and was just diagnosed this past summer. All things are in Gods hands. He is in control. This is but the presence of sin in the world, but we can look to the day when our bodies are made whole again as we enter the kingdom to be with the father forever. For now it is just difficult to watch who you are change... and this change has changed my thought of who i am. Yet i have to remind myself daily that i am still the same person. I find my Identity now, just the same as I always have- in Christ alone. And that can never change, and that never me taken from us.
I will be praying for yall! especially you Nate! Pray for me as I return home from college this Christmas to see family and old friends with a new face. It is tough and I know you struggle too with this but pray that I will see myself the way the Lord sees me. And I will pray that you see yourself the way the Lord sees you; Handsome and Courageous and kindhearted.

Terri said...

Kathy, the doctor in the video on CNN is our doctor too! He is amazing! I did research and truly believe he is the best answer for this disease right now! Here is a link to the story done on Hank while we were in NYC. I left you my number on Facebook. Let's talk! I can help!
http://www.foxnews.com/story/0,2933,598207,00.html

Anonymous said...

Kathy, I will pray for Nate and all your family! My Mum died of scleroderma, she had systemic diffuse one, doctors said she had 5 years to live when I was 4, she died when I was 24! She was a fighter, she did it for me. You have got to be strong for Nate, and I pray to God that his condition doesnt get worse. Keep faith, there are so many treatments available today compared to 20 years ago. God bless!!!

Jennifer Leblanc said...

I am praying for your family during the difficult time, praying that doctors and researches can find out more about this condition. Please keep us posted, and know that you have friends on your side listening.

Anonymous said...

I recently stumbled upon this post and I hope that things are still going well with you and your family. I know it may be a hard thing to have to accept but I know from what I have read that your son is surrounded by love and support. That is what we all need in this life! Thank you for sharing your story

ebulla said...

I was reading about DMSO and it's use as a treatment for scleroderma. It sounds quite promising. I just ordered some myself. Just make sure you get the 99.998% pure stuff as it transports anything mixed with it directly to the cells. It's cheap and unregulated. If you haven't tried it you should really look into it!

Amy Reid said...

My name is Amy Reid. I have Scleroderma En Coup De Sabre and I have now connected with two others with the same condition. Your son would be the third. If you would like to contact me, my email address is reidrolfe@hotmail.com =0)