My heart is hurting as I type this, our little one is struggling. Her health is declining, she is changing both physically and mentally. There are moments when Lucy is Lucy, and moments when Lucy is extremely irritable and agitated, screaming inconsolably for hours. Common everyday situations can set her off, and there is really nothing you can do to calm her. Dr. R was able to experience first hand last Monday Lucy’s “new” behavior. He has witnessed her behaviors in the past, but for over an hour he was able to really experience what we have been describing to him, and we all agree that this is new and much worse than ever before. Lucy has always struggled with sensory issues, obsessive compulsive behaviors, and irritability. She is not diagnosed autistic but has autistic-like tendencies which we have learned to work with and continuously try to manage. These new behaviors are different, heighten, severe! We know that Lucy’s brain chemistry is different, she has paradoxical reactions to most medicines that we have tried for her. Her neurological system is affected as a result of her mitochondrial disease.
We are not sure what exactly is causing Lucy’s new issues…is it a side effect of a medication, a paradoxical reaction to the morphine, or disease progression? It could be any or all of the above. We need to wean Lucy off of the morphine in an effort to isolate the cause of her heightened behaviors. Dr. R is hoping that by weaning her off of the morphine that we will see a decrease in the intensity of these behaviors. At the same time, we are in need of achieving some level of pain control. It is thought that Lucy could be experiencing neuropathic pain, morphine is not necessarily the first drug of choice for neuropathic pain. I have a love-hate relationship with narcotics, they were absolutely what she needed to get through her most recent situation, but I hate what they have done to her and the weaning process. It is awful seeing your child, your baby, go through withdrawal. We are weaning her slowly but aggressively.
This is so tough…mito sucks!
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So sorry to hear this for your sweet little girlie. :(
Im completely new to your blog but felt I wanted to comment. Im so sorry to hear Lucy is not doing well. There is a charity in my town (UK) who supports a boy with Alpers Syndrome and I have decided to support this charity by running a half marathon in September. They are funding a research programme into finding mito.
Its so horrible what this does to babies and children and as a mother mysel I dont know how I would cope. I know the little boy near me is currently struggling with things.
I will keep thining of you and the other mito children and families.
praying!!
I have watched Lucy for years now & always thought she has such a beautiful spirit shining through those eyes. We are praying & hoping a change will bring her happiness back.
Lorrie, Nate & Abbie
I'm so sorry to hear that Lucy - and you and your family - are going through such terrible struggles right now. I pray the doctors will be able to figure out a way to help ease her extreme irritability and pain and give her the comfort and happiness she truly deserves. God bless her and all of you.
Praying for you guys and sending love and hugs!
Nicole we all love you... Prayer always not only for Lucy but for you to....
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