This is a new one for me…..I think I am so overwhelmed right now with all of this new information regarding Hannah’s health that I just have no words. I have been so trapped in my mind the past few days that I don’t know if I have really spoken much to anyone. My mind sure won’t stop but no words will form……
We went to Tampa earlier in the week to meet with Hannah’s Neurologist. Bottom line is this…..Hannah’s “official” diagnosis that people in the medical field recognize is “autoimmune encephalitis.” Frankly, it is PANDAS with a name that doctors, hospitals and insurance companies believe truly exists. With that diagnosis, we received the advice of treatment that we were hoping for; although with that treatment the risks are far greater than I had imagined. Hannah needs High-dose IVIG. IVIG is Intravenous Immunoglobulin that is used mainly for people with low immune systems, which Hannah has as well. But, the difference between IVIG for low immunities and encephalitis is the dosage. With IVIG that is used for immune suppressed patients it is done at a much lower dose, usually monthly, as an outpatient procedure. With autoimmune encephalitis it is a much larger dose done in-patient over 2-consecutive days. Usually IVIG is done monthly for years when dealing with low immune systems. When dealing with autoimmune encephalitis it is a “walk in the dark,” as our Neurologist told us on Tuesday. In other words….we have no clue how many treatments Hannah will need.
The past 18 months has been a “walk in the dark,” and it appears that treatment will be as well. This is very disheartening to this mama! It is a guessing game and when you are dealing with your child’s health there is no game in that! The side effects to High-dose IVIG can be pretty bad; and in some cases downright horrific! We have no way of knowing how Hannah will respond and that is scary for us. We have been told that since steroid therapy works wonders for Hannah; that this might also, although it might not work either. We have no guarantee of anything. This is what I know…..it may put Hannah in remission, as there is no cure for this. It may not work at all or it may make her significantly worse! That is all I know. With that said, we also feel that we have no other choice but to try it. Of course all of that depends on insurance approving it! That might be a long and difficult process in itself.
We had hoped to be able to stay here in town and have this treatment done, especially since we don’t know how often she will have to have it; but we will not be able to do it here. We will have to go to Tampa for all the treatments. That was not what our hopes were but Tampa is better than other places, I suppose. I guess it could always be worse.
At this time, we have submitted everything to our Neurologist at All Children’s Hospital in Tampa and he will be fighting with the insurance company on our behalf. Once insurance approves the treatment we will head to Tampa to have it done. Whether she needs one treatment or 100 treatments that is where we will be. Hopefully between treatments we will be able to be here at home. For this treatment to work properly though, Hannah will live in “our little bubble.” Being around germs or sickness would set her back and my number one goal will be to protect her from catching anything. Again, a walk in the dark as we don’t know how long it will take for this treatment to work or if it even will. Our goal, our hope and our prayer is that this treatment (no matter how many of them she needs), will give Hannah back to us completely…..healed and whole!
Our specific prayer requests are:
- If this is God’s will for Hannah to have HD IVIG, that insurance will not put up a fight but rather approve it quickly.
- Our team of doctors and nurses that will be caring for Hannah will be kind, gracious and full of God-given wisdom and knowledge.
- THIS ONE IS HUGE…..that Hannah will have NO side effects to this treatment. That her body will respond perfectly and accept this Immunoglobulin like it is starving for it. No pain, no headaches, sickness or the other more horrific side effects that I won’t get into here.
- That the Lord, as He always has, will supply all of our needs while we are away.
- For peace, strength, grace and mercy for Dennis, Hannah and me as we continue to walk this dark journey
- No matter what…..God will use this as a ministry tool for Dennis and me to sing of His praises no matter how difficult the storm or how it rages. That no matter what God will be glorified for His grace, goodness and love.
Thank you all for walking this dark journey with us, for praying for us, for encouraging us and for loving us! Your prayers, friendship and love do not go unnoticed! We are so very grateful!
Until next time……….