Hello everyone, sending love, hugs, and many prayers your way. I wanted to update you on my dear lovebug. He went to see the neurologist yesterday to have an EMG.
An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals. Nerves control the muscles in the body by electrical signals (impulses), and these impulses make the muscles react in specific ways. Nerve and muscle disorders cause the muscles to react in abnormal ways.
Measuring the electrical activity in muscles and nerves can help find diseases that damage muscle tissue, or the nerves. It confirmed that he definitely has Chronic Guillain Barre Syndrome. What is Guillain Barre Syndrome?
Guillain-Barre syndrome is an uncommon disorder in which your body's immune system attacks your nerves. Weakness and numbness in your extremities, are usually the first symptoms. These sensations can quickly spread, eventually paralyzing your whole body. They are going to set him up for a weeks worth of
IVIG treatments. What is IVIG used for?
IVIG is approved by the FDA for use in the treatment of the following diseases: Kawasaki disease, dermato/polymyositis, idiopathic thrombocytopenic purpura (ITP), Guillain-Barre syndrome, polyneuropathy, some viral diseases, and some forms of immune deficiency. IVIG is often the first treatment choice for patients with Kawasaki disease or ITP. For other diseases, it is used after other forms of treatment have failed.
In addition, IVIG appears to work in systemic lupus erythematosus, antiphospholipid syndrome, vasculitis, multiple sclerosis, myaesthenia gravis, and a wide range of other diseases characterized by abnormal immunity. In these cases, particularly because IVIG is very expensive, it is usually necessary to obtain approval from your insurer before the drug can be prescribed. (Again, IVIG is usually used in these diseases only after other forms of treatment have failed.)
How is IVIG given?
IVIG is given intravenously (dripping liquid slowly through a vein) over several hours. The treatment is usually repeated for 2 to 5 days. Further, it may be repeated at 1 to 3 month intervals until a satisfactory response is obtained.
Body weight and specifics of illness determine the actual dosage. For instance, a common dose regimen is 0.2-0.4 grams of IVIG per kilogram of patient weight for 4 consecutive days, to a total of 2 grams/kilogram (0.7 grams/pound). For a 144 pound person (the typical 70 kilogram man), this would translate to 140 grams), dissolved in salt water.
The infusion time will also vary depending on the amount given per day and the person's tolerance. Your infusion rate will start slowly and gradually increase over the course of the infusion. A typical infusion of IVIG can take several hours.
So, please continue to pray for him. Also, pray for us financially. We appreciate your prayers more than you will ever know.
30 comments:
Denise,
All of this sounds pretty intense and I know how difficult it is when we have to go for treatments. I am keeping you and your Lovebug in my prayers. Thanks for the update.
Blessings,
Mary
Blessings Denise, Thanks for the excellent info and update on Lovebug!
I am continuing daily in prayer!
I think that my daughter had IVIG for her Lupus when they first were diagnosing it and we went and spent many mornings in the hospital out patient doing these for her first months. I needed to learn much at this time and the side effects, etc. but so did she and she was just a teen. Her little veins just had such a hard time. But she's now 30 and has little problems or meds now. I pray that Lovebug adjust well and that this procedure helps.
God be with both of you! And may God, Jehovah Jireh, supply all your needs! Love you & sending hugs & prayers,
Peggy
Praying for you and Eddie everyday. Sending you lots of hugs.
Praying for both of you!
Wow - I hope that the treatment will help your lovebug.
Thank you for sharing -- I will keep you in my prayers.
Love & peace,
Iris
Praying, Denise!!
my heart was like racing a bit while reading this. as i've said, i had GBS before and i was also scheduled to have IVIG treatment for antiphospholipid antibody syndrome (APAS) when i was pregnant. it was a horrible experience for me because before i had IVIG, it was found out that my baby died already. but i do believe that our God is our Great Physician. i'm not losing hope. i even believe that all through these years, He has already prepared me for my next pregnancy.
denise, whatever the doctor says, do what you have to do but hang on the truth of Jesus that by his stripes we are healed. i will forever hold on to that.
blessings to you sister.
My Precious Sister,
I so love you and your lovebug. I'm praying so hard for so many needs. We all are standing with you, upright and tall. The Lord just gave me a picture with my eyes closed...I see all of us praying for so many...I see all of us, many, many people coming with our loved ones and those that are in need of payer and miracles. I see us all coming, swiftly ever so swiftly to a large open field, to a place where we are all gathering...that's all I see.
I believe that He is calling all of us, gathering us all together...only He knows the purpose. I'm praying for divine miracles to occur...many in the name of our precious Lord and Savior Jesus Christ.
All praise, honor and glory are yours almighty Father forever and ever more. Amen.
I will continue to fervently pray and pray and pray. Oh how I love Him so.
Big Hugs and prayers sister,
Alleluiabelle
Thank you for the update. Praying continuously for the two of you. May the Lord supply all of your needs. God bless you both and praying for bro. Eddie's healing. Same with you sister. Take care. Be strong always. With His power and might!
Denise, you guys are in my continued prayers. Thanks for the update and I am believing with you for a miracle for your Lovebug!! -love and prayers, Laurie
Thanks for the update. I'm glad you guys have a firm diagnosis and a treatment plan. I will continue to pray for you both!
Denise, Thanks for the update!! i think about you guys a lot and wonder how you are doing. This sounds awful but when it comes to medical stuff it all sounds awful!! God has a plan for you and I know that you know it..
Sandy
Thank you for the update, Denise! You both have been on my mind so much. Prayers are continuing...
Praying with you!! and sending lots of cyber hugs,
andrea
I am going to send you an email in response.
I'm sure you've heard more medical-eze recently than you ever care to in a lifetime. Things which you had never heard of before are now becoming repeated often and applied to you--it may seem like a dream at times. "Cast (I think of this word as meaning Throw with vehemence)your cares on Him, for He careth for you." 1 Pet. 5:7 There is no way anyone can go through this without God's grace and love. I'm praying for a fresh load of grace to be backed up to your door and poured out over you. There is an e-card that I love, which shows this image of a dump truck full of the love of Jesus, and the back of the truck raising to Pour Out a cascading avalanche of His Love over a smiling girl with hands raised in the air--This is you! This is my prayer. Love you, Wendy
P.S. The process of administering treatment sounds like the chemo I had--you will have precious time together, and a whole new mission field of nurses where he receives treatment. Maybe God knew they needed to hear about Him.
Praying for you and your Lovebug!
Praying for Lovebug that all treatment is approved and goes well and just what he needs for a full recovery.
Wow I haven't heard of IVIG. I worked with a GB patient way back when I was an OT. Thank you for sharing this, now I know exactly what to pray for.
I will pray for you guys, physically, emotionally, financially & spiritually to be blessed with God's best! Love ya
thank you for the update. i will continue to pray for you both. i hope his body tolerates this treatment wonderfully and he starts to heal quickly.
Wow, that's a lot to process. I'm praying for you both. May God be your strength and healer. Love and hugs.
We'll keep praying, sweetie. Thanks for keeping us up to date.
Mama bear
I will keep on praying. You both are so courageous in this trial. I'm believing with all my heart for Eddie's healing...and soon.
Thank you for that information, Denise. Bless your hearts, that does sound as Mary said "intense." Thank God He is our hope and nothing is impossible with Him. Praying for you two. Love and Hugs ~
Just a little encouragement...We have a friend who was striken with Guillen Barre several years ago. She became completely paralyzed and could not move at all. But with treatment over a couple of months, she began to improve and regained almost 100% of her ability by the time they were finished. I know you have a long stretch ahead of you, but the end result could be promising. We are continuing to pray for you both.
Dear Sister in Christ,
You have such a beautiful faith! It is lived here in every post and seeps from your every word. May God indeed be glorified by providing a miracle for your Lovebug. He is The Physician and knows best how to heal each of us. May He provide all healing needed for His glory. May he give you both strength and peace. May others grow to love Jesus because of what they see in you!
Amen.
Shalom,
Kim
Goodness gracious mercy me! Thank goodness the Lord can handle every bit of that ...Still praying for you both!
Love you
I'm glad that you have a firm diagnosis. At least now, you know what the battle is, and of course, God has already won the war. xxxooo
Thinking of you both and praying for BOTH of you! God has stuff yet for you both to do! Tell Eddie that!
I love you dearly my sweet friend!
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