Wednesday, September 19, 2007

Neuro-fibro-matosis


This is what our oldest son, Michael, has.

A few weeks after birth, he had developed some spots (known as cafe-au-lait marks referring to their coffee-like color) since birth and I thought they were late-arrival birthmarks, which I thought was strange. I pointed this out to his pediatrician at his 2 month appointment. The doctor diagnosed Michael with NF1 (there are 2 types). At that time, the pediatrician we had scared us with scenarios of seizures, brain tumors, and a host of other complications. A visit to a specialist a few weeks later helped to paint a picture that wasn't quite so bleak!

We have found that most pediatricians don't know much about this disorder, making it important that we keep ourselves informed through reading and talking with others. Complications include learning disabilities, tumors behind the eyes, scoliosis (curvature of the spine), bone problems, high blood pressure, and non-malignant tumors visible on the surface of the skin (though it's rare, these tumors can become malignant). NF is hereditary or it can be a result of a chromosome mutation. Michael is fondly referred to as our mutant! His children, however, each will have a 50% chance of having the disorder and his severity does not determine their severity (ie - he may have a mild case but his child could have a severe case).

For several years, we didn't think too much of Michael's NF. Other than his "special spots," there were no other symptoms. We began taking him for annual eye check-ups when he was one year old because of the chance of tumors. But, life went along pretty normally.

Then, January 13, 2006, I took Michael to the pediatrician as he had been complaining of back pain and his back felt as though it had some tight muscles. When the doctor asked him to bend over for a back check, I almost threw up. The hump in his back was unbelievable. The x-rays confirmed a moderate to severe case of scoliosis - something he was checked for and didn't have 3 months earlier. The condition worsened at an alarming pace for the first few months, tapering off when his growth spurt ended (he grew almost 2 inches in a few months time).

Michael now wears a brace to try to stop the curving of his spine. This is not something that normally works with NF patients for a variety of reasons, but we are trying. On October 3, we go back to the orthopedic surgeon to find out if the brace has been able to halt the growth. If not, we discuss surgery - rods put in our son's back. I'll probably discuss this more at a later date, but, for now, suffice it to say this is a MAJOR LIFE-CHANGING surgery!! Michael has the best OP around, but I still hate these appointments as one of these days, it will be the appointment where we schedule this operation. Already, my stomach is in knots over this upcoming appointment and it's 14 days away!

NF is a scary disorder for us now. Sometimes, like last night, I worry and become afraid for what my son will have to go through. Right now, he does have evidence of learning disabilities and possible high blood pressure. My biggest concern, though, is the scoliosis and the threat of tumors in the next few years.

These things can make a mom crazy with worry. BUT, I am so glad to be a child of the GREAT PHYSICIAN. I don't expect Him to heal Michael. I trust, though, that He will give Michael, my husband, and I the grace we need to go through whatever trials may come our way as a result of this, so far, fairly unknown disorder.

Just in time for my panic attack, a sister-in-Christ reminded me of one of my favorite Scripture verses yesterday. I Peter 5:7 "Casting all your care upon Him, for He careth for you." God cares for this scared mom. God cares for my son. He knows all of our trials past, present, and future. He holds us in His hand and walks with us in our trials. I am so thankful that I can rest in this thought! God's grace is sufficient!

Pray for Michael.

Pray for us.

We are grateful!

7 comments:

Aaron and Stephanie Putney said...

We will be praying for Michael and your family. Surgeries on children are scary things, we can also say from experience that our God is great and can provide the grace needed. God bless.

Donald Randall said...

We will also be praying for you, Michael, and the whole family. Scripture assures us that God will not give us more than we can handle (although sometimes I think God thinks I'm stronger than I do).
I thank God for your faith in Him.

elianna said...

Thanks for the reminder to pray for you more! I'm afraid that I forget about Mike sometimes-you guys all handle it so well that I had almost forgotten how serious it is...I will certainly be praying for you all more! You have done a great job resting in the Lord so far & I'm sure He will give you the grace you need. The faith that your kids have is amazing, a challenge to me! And through it all that faith will be made stronger.
Love to you all, i'll be praying more...

becky said...

You know Michael will be in our prayers too! Give him and everyone else a hug from Aunt Becky!

Paulo aka mr. shadyshiest said...

I will pray for Micheal for God's healing power to touch him, I am Paul from uganda, I am now 26 and i have Nuero fibro matosis type 1. i recently (4 days ago) had my 4th surgery to remove some tumors and i am now just healing from the process. My family has been loving and has supported me. With the constant love around me, I totally forget my condition. I will pray for all the family too that God gives you strength to go through this and I believe He will make Michael better. Paul kityo(paulkityo@gmail.com)

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