I’ve tried in vain to organize my thoughts over Rhema’s test results from her hospital stay earlier this week.
The good news is that her EEG came back clean.
The not-so-good news is that the only medication that seems to stop Rhema’s seizure-like activity is high-dose diazepam/valium. There is a risk that Rhema will become addicted to this drug with long term use.
A little less than a year ago, a very high-dose diazepam protocol was given to Rhema in order to “rescue” her from a pattern a continuous mini-seizures. The results were astounding – she went from a spike index of 85-100% to less than 2%. We were thrilled!
Rhema during an EEG last September
Because of its addictive properties, our neurologist did not want her to stay on the med long-term. We immediately began weaning her over several months. The hope was that the first bolus had shocked her brain out of the seizure pattern and that another anti-seizure med, Lamictal, (non-addicting) would maintain the seizure-free state.
An EEG in June confirmed our fears that the seizure activity had indeed returned with a vengeance. She was put back on the diazepam, and now, several weeks later, her EEG is clean again.
Over the past 3 years, we have tried many anti-epileptic meds to no effect. Her options:
1) Diazepam long term
2) Intensive steroid therapy – her dr. is very much against this
3) A brain surgery called MST – definitely a last resort
Our “choice” for now is clear: uncontrolled seizures or unknown reactions to the drug in the future. But the last thing we need is a child with symptoms of drug dependence, and my biggest fear is putting a 5-year old with autism through some horrible drug withdrawal down the road. (Not to mention, the diazepam makes her very h-y-p-e-r-a-c-t-i-v-e – as if we needed more of that. Ugh!)
How long term is long term? Nine months? A year? We don’t know.
But for now, her brain is quiet and she has a chance to really learn and perhaps even gain language. And for that I am grateful.
But no matter how I spin this, I just can’t seem to get settled on it. Maybe I’m numb. Truly, I don’t know what to think, how to feel. There is fear, worry, and hope… always hope. There is information overload from googling Landau Kleffner syndrome and diazepam dependence all night long. There is the constant wondering if we’re doing the right thing for her.
An autism mom who reached out to me years ago recently told me something so simple yet so profound that I’m clinging to it now. She said, “I will pray the Lord will give you peace today as you learn to lay tomorrow at His feet.”
So here we go.
rhemashope.wordpress.com 
Long term medicinal choices are always difficult to make. I too “will pray that the Lord will give you peace today as you (we all) learn to lay tomorrow at His feet.”
*HUGS*
Lots of hugs and love to you. You’re doing the only thing you can: making the best choice at the time. I know that doesn’t make it any easier. I hope that your friends, family, your faith, and your fans out here can ease your burden just a little. You are amazing and brave. Sending you a really big hug … really big.
Rhema is fortunate to have such a wise mama. Yes, this is precious time to learn. Your reasoning is sound. I hope you are (or become) confident in whatever decision you make.
On a different note, is there some way of getting a 2nd opinion, w/o subjecting Rhema to repeat testing. You know, transfer the file to some one else, and get some one else’s read on it? Just to gather data?
One positive circumstance resulting from autism (especially your particular seizure variety) is that it frees me from the annoying habit of offering unsolicited advice. Who would hazard a suggestion to one in your shoes? Only God dare advise…so let’s just share a little joint focus on Him. “Nothing can hinder the Lord from saving, whether by many or by few.” I Samuel 14:6
Sometimes our choices are tough. This is harder than any I’ve had to deal with and I’m so sorry that this is laid out before you. I know whatever you do it will be the best thing for Rhema. You are wonderful thoughtful parents. I’m so sorry we couldn’t see you on our travels this time!
Let me echo Michelle, who so simply captures it all by saying your choice is so much more difficult that any decision she (or I) has had to make. It is so much more than any parent should ever have to face. And, yet, I find strength in your thoughtful reflection; your obvious grace and wisdom bring a sense of calm to my own stressful life. Thank you, thank you, Jeneil, for showing us what it means to truly be a mother.
I’m so sorry you are struggling with this. The feeling of wondering if you are doing the right thing must be so hard. BUT – know that no matter what you do, the Lord is looking out for Rhema. HE will take care of her.
That quote from your friend is so simple, yet so profound. Cling to the Lord, Jeneil. I will continue to pray for Rhema.
Just thinking good thoughts for you.
xoxoxoxo
Sending you many goo dthoughts
UGH. Sigh.
I’m collecting my thoughts in what to say. I think, possibly, you read my post on Valium. Sorry to put the link here, but just so you have it…
http://www.generalhysteria.com/2009/08/ix-nay-on-the-alium-vay/
Now, Alex’s spikes weren’t as “productive” as Rhemas. But, we have moved from Diazepam to Depakote. We have seen amazing results. Is this an option for her? Alex is 6 so maybe it’s an age things, but really, we’re starting to see amazing (small) results. We’re only on about day 3 of 1/2 of the dose we’ll be at, with a slow increase. But….
Let me know. Feel free to email me. (Sorry I lost touch with you). GeneralHysteria AT gmail DOT com.
Hi Mia,
I am SO happy that you’re seeing amazing results with Depakote! LKS is notoriously hard to treat and every child responds differently – I am truly encouraged to hear about Alex.
We tried Depakote for over a year. It never worked for Rhema. We’ve also tried Keppra (aka Kepp-rage = TOTAL NIGHTMARE), and we tried Lamictal and Lamictal with Diazepam. As I posted, they were all ineffective and in some ways made things worse. Thankfully, Diazepam is (currently) working.
So glad we’re in touch!
Hi there.
I know that you are good friends of Jess, and well, any friend of hers is a friend of mine.
I’m sorry that you and your daughter have to go through this.
You know, right now I am reading Wally Lamb’s book “The Hour I First Believed”, and it raises many questions about faith. It’s hard for me to read and process. It’s confusing to me why things happen to good people.
I so admire your faith, conviction and strength.
I will hold you and your family in my heart and prayers.
Very pleasing the results came back clean. Hopefully some calms times ahead for Rhema and some difficult decisions for you. Wishing you all the best.
Lucas is the youngest of my 4 children. He was diagnosed with LKS a year and half ago. I was terrified when his neurologist wanted to put him on prednisone, but at that point his language was practically nonexistent. So we went with the prednisone in combination with ospolot. I must say that it helped very much and very fast. He stayed on for about a year. We had to take him off because his body could not take it anymore. He developed many side effects including high blood pressure, Cushing’s syndrome, high glucose levels and others. Once I had to take him to emerge for something else and the doctor there told me that the side effects could be avoided if the doses is given all in the morning and the child is carefully monitored by multiple specialists, not just the neurologist. In our case the neurologist didn’t care too much about other parts of Lucas’s body, just his brain. If you want to go with the corticosteroids, make sure you have good doctors monitoring your girl carefully.
Other than that, it was quite effective and once we figured out the right dosage he was doing OK. He didn’t like changes in dosages very much and was always very cranky for a few days until his body adjusted.
You are in my thoughts, I know God will give you the wisdom to do what is best for your baby girl. Tough choice, no parent should ever have to make. Sending you hugs!
I love the picture of Rhema looking out of the window. Was decorating the window part of the kit you took to the hospital to keep her entertained? Or is that something that the hospital does?
I like your friend’s prayer for you. I will make this my prayer for you and Brandon. One pastor who had a great impact on my paraphrases Elizabeth Elliott’s response to how she continued despite two husband’s being taken from her in very trying circumstances. She said, “I just get up each morning and do the next thing.
And as my husband is fond of saying, “I may not know what the future holds, but I know the One who holds the future.”
Back to my former pastor, “There is nothing we can do that God can’t undo.” If you are prayerfully making each decision, then you are in God’s will. Remember that He loves you, Rhema and your family very much. You haven’t done anything wrong to be living in your current circumstances, but the Lord has allowed these things for your good and His Glory. I know He is looking down from heaven on you, Rhema and your family and He’s pleased with you because of the work Christ.
I’m keeping your family in my thoughts & prayers. I know that whatever decisions you and Brandon make, even in these difficult matters, will be guided by the Lord. He is and always will keep watch over Rhema & your family.
My friend, I can only imagine how difficult this decision is for you and Brandon. My thoughts and prayers, hopes and dreams are with you always.
i am so sorry you face these decisions. holding you close – always
You are not making the decisions your faith is.God knows all that Rhema is dealing with and has her in his hands.I know your and Brandon’s parental instincts kick in( and Thank God they do) but you have always given over to God and he has given you two the wisdom to do what is right and safe for Rhema and Hope.
I will pray and pray for all of you but know in my 76 year old heart and wisdom he has it all under control.
Love you much,Gramma
Grace to you. And peace.
These decisions are SO hard.
Just wanted to add some hugs and prayers. Thinking about you guys.
Oooh. These are not fun decisions at all. My daughter’s bouts of steroids have been the worst times of our lives by far, but I think the dosing is different in LKS. I know the choice of a benzo long-term is scary, but I know a brain can function and learn much better without the spiking.
Hoping that you find peace with your decision and that more options open up to you. Your comment about considering surgery on my page, is that a second opinion, or have you chosen to more closely consider the surgery you mentioned here?
Thank you for your prayers. I have prayed for Rhema, but will do so for the whole family as you get ready for the deployment. I am happy to hear it sounds like you have a great church family who can offer support as well.
Thinking of you!
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