Never Once
We are one weekend away from starting IVIG Round Two.
It's hard to believe that my nerves are increased with this treatment. So many reasons for the feelings, but the top of the list is the itchy, red rash that is still very present on Hunter's body.
We have been to the doctor three times to have our pediatrician look at him and give us her opinion about the future of IVIG treatment. She conferenced with our Neuroimmunologist yet again yesterday, and he still wants to continue on Monday. According to both of them, the benefits outweigh the risks.
I spent the other night researching WAY too late, and corresponding with a mother in my PANDAS mom's group. She asked me if Hunter was IgA deficient...and I looked through all of his labs, but could not come up with that titer. If you are IgA deficient, you can't receive particular types of IVIG (those containing IgA)- you would make strong antibodies against it, and anaphylaxis could result. Dr. G thought that the rash was not a deterrent to continuing therapy, as the rash won't morph into anaphylaxis (she said 99% of skin rashes won't turn towards that route). However, there is still the chance of a reaction the second time. Their plan was to calm down the immune response by continuing the antihistamines, and premedicating on Monday with SoluMedrol (steroid) to avoid further reactions. As a precaution, our pediatrician drew blood yesterday to give us a measure of the IgA. We should find out the results by tomorrow at the latest.
With our children, we make daily decisions for them. The clothing, the meals, the timing and balance of homework, extracurricular activities...the list goes on. Intuitively, we know what to do in the majority of situations. However, when you are dealing with trust, it can be a game changer. As much practice as we have been given in making decisions for our children, it never gets easier when it comes down to trust.
We have to believe in our physicians, believe in this treatment, and believe that God will be standing there by us.
Round Two is weighing heavy on our hearts and our minds...I feel like I have been walking around in a fog this week. I have made every phone call possible to try and reassure us of the plan- the infusion nurses who took care of him, his neuroimmunologist, his immunologist, his PANDAS doctor, other PANDAS parents, our pediatrician....I don't know how many phone calls it would take to bring me to an adequate level of comfort.
So now, easier said than done, is time to get out of the fog and continue on ahead. 'Cause we aren't walking through this alone.
Matt Redman wrote a song called "Never Once" from the CD entitled '10,000 reasons.' Thought it was interesting that his album title mirrors the thoughts running through my head. Love this song that came on my Pandora this morning...
time to trust.
http://www.youtube.com/watch?v=n1bXG4WIesA
NEVER ONCE
Standing on this mountain top
Looking just how far we've come
Knowing that for every step
You are with us.
Kneeling on this battleground
seeing just how much you've done.
Knowing every victory
is your power in us.
Scars and struggles on the way
but with joy our hearts can say,
yes, our hearts can say
Never once did we ever walk alone.
Never once did you leave us on our own.
You are faithful, God you are faithful
You are faithful, God you are faithful
Scars and struggles on the way
But with joy our hearts can say,
Never once, did we ever walk alone.
Carried by your constant grace.
Help within your perfect peace.
Never once, no we never walked alone.
Never once did we ever walk alone.
Never once did you leave us on our own.
You are faithful, God you are faithful.
Every step we are breathing in your grace.
Evermore we'll be breathing out your praise.
You are faithful, God you are faithful
You are faithful, God you are faithful.
Cause you are, God, you are faithful.
You are faithful, God, you are faithful.
It's hard to believe that my nerves are increased with this treatment. So many reasons for the feelings, but the top of the list is the itchy, red rash that is still very present on Hunter's body.
We have been to the doctor three times to have our pediatrician look at him and give us her opinion about the future of IVIG treatment. She conferenced with our Neuroimmunologist yet again yesterday, and he still wants to continue on Monday. According to both of them, the benefits outweigh the risks.
I spent the other night researching WAY too late, and corresponding with a mother in my PANDAS mom's group. She asked me if Hunter was IgA deficient...and I looked through all of his labs, but could not come up with that titer. If you are IgA deficient, you can't receive particular types of IVIG (those containing IgA)- you would make strong antibodies against it, and anaphylaxis could result. Dr. G thought that the rash was not a deterrent to continuing therapy, as the rash won't morph into anaphylaxis (she said 99% of skin rashes won't turn towards that route). However, there is still the chance of a reaction the second time. Their plan was to calm down the immune response by continuing the antihistamines, and premedicating on Monday with SoluMedrol (steroid) to avoid further reactions. As a precaution, our pediatrician drew blood yesterday to give us a measure of the IgA. We should find out the results by tomorrow at the latest.
With our children, we make daily decisions for them. The clothing, the meals, the timing and balance of homework, extracurricular activities...the list goes on. Intuitively, we know what to do in the majority of situations. However, when you are dealing with trust, it can be a game changer. As much practice as we have been given in making decisions for our children, it never gets easier when it comes down to trust.
We have to believe in our physicians, believe in this treatment, and believe that God will be standing there by us.
Round Two is weighing heavy on our hearts and our minds...I feel like I have been walking around in a fog this week. I have made every phone call possible to try and reassure us of the plan- the infusion nurses who took care of him, his neuroimmunologist, his immunologist, his PANDAS doctor, other PANDAS parents, our pediatrician....I don't know how many phone calls it would take to bring me to an adequate level of comfort.
So now, easier said than done, is time to get out of the fog and continue on ahead. 'Cause we aren't walking through this alone.
Matt Redman wrote a song called "Never Once" from the CD entitled '10,000 reasons.' Thought it was interesting that his album title mirrors the thoughts running through my head. Love this song that came on my Pandora this morning...
time to trust.
http://www.youtube.com/watch?v=n1bXG4WIesA
NEVER ONCE
Standing on this mountain top
Looking just how far we've come
Knowing that for every step
You are with us.
Kneeling on this battleground
seeing just how much you've done.
Knowing every victory
is your power in us.
Scars and struggles on the way
but with joy our hearts can say,
yes, our hearts can say
Never once did we ever walk alone.
Never once did you leave us on our own.
You are faithful, God you are faithful
You are faithful, God you are faithful
Scars and struggles on the way
But with joy our hearts can say,
Never once, did we ever walk alone.
Carried by your constant grace.
Help within your perfect peace.
Never once, no we never walked alone.
Never once did we ever walk alone.
Never once did you leave us on our own.
You are faithful, God you are faithful.
Every step we are breathing in your grace.
Evermore we'll be breathing out your praise.
You are faithful, God you are faithful
You are faithful, God you are faithful.
Cause you are, God, you are faithful.
You are faithful, God, you are faithful.
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