Where do I start? Oh, Lord- I pray- help me.
Principal Dx: Seizures
Secondary Diagnoses:
a) Developmental Delay
b) Cryptorchidism BL
c) Behavioral changes/aggression
Procedures: Video EEG, CBC, RFP, Endocrine Labs, bone age xrays, microarray, chromosome analysis, The Very Scary Test I'm not ready to reveal to the world just yet
- If Logen has a few seizures in one day, we load up and head back to Children's for another stay- I have a note from our Neuro to hand the ER staff so that our admit process will go much more smoothly
- We are slowly discontinuing the Zonegran (over a period of 3 weeks)
- We are starting pediasure 3 per day (and are working with a nutritionist)
- Started b6, hoping it will help with the aggression/behavioral changes brought on by the Keppra
- Several clinics to go to in January.
Let me start here. THEY TOOK AWAY CEREBRAL PALSY. Just like that. Bam. It's gone. For the last 4+ years I have been emotionally trying to figure out how to be ok it- this 'brain injury'. And, now- they just take it away. Wow. I've meet some great folks b/c we had children who were 'alike', so now what?
We thought we would be excited about 'getting rid of CP'.
Oh we prayed for a miracle, that he'd just be cured and not have CP. With whats been discussed now, I'm praying FOR CP. It just sounds better. Nothing sounds perfect (out of the box we are 'getting' to chose from)
I don't get it. Why Logen? Why my baby? What did he do wrong? What did we, I do wrong? This disease/syndrome whatever it is- is most likely maternal. God, please- you're really going to have to help out if that is the truth. I just don't understand this all. I'm trying so so so hard to keep my faith in the Lord. I find myself closing my eyes and looking up whispering "God Please, please, please, please" about 1,000 times a day. I'm sorry this doesn't make much sense. I start to ramble when I think about this.
Blog Family- Keep on Praying. Please. We all need it. More than any of us, Logen does. Logen NEEDS every extra prayer there is.
Thank you all for my sweet messages. I love the comments, the texts, the emails- don't stop sending them. I need to know you all are still out there- still praying for us. It means so much to me. More than you can imagine, it means that much.
Principal Dx: Seizures
Secondary Diagnoses:
a) Developmental Delay
b) Cryptorchidism BL
c) Behavioral changes/aggression
Procedures: Video EEG, CBC, RFP, Endocrine Labs, bone age xrays, microarray, chromosome analysis, The Very Scary Test I'm not ready to reveal to the world just yet
- If Logen has a few seizures in one day, we load up and head back to Children's for another stay- I have a note from our Neuro to hand the ER staff so that our admit process will go much more smoothly
- We are slowly discontinuing the Zonegran (over a period of 3 weeks)
- We are starting pediasure 3 per day (and are working with a nutritionist)
- Started b6, hoping it will help with the aggression/behavioral changes brought on by the Keppra
- Several clinics to go to in January.
Let me start here. THEY TOOK AWAY CEREBRAL PALSY. Just like that. Bam. It's gone. For the last 4+ years I have been emotionally trying to figure out how to be ok it- this 'brain injury'. And, now- they just take it away. Wow. I've meet some great folks b/c we had children who were 'alike', so now what?
We thought we would be excited about 'getting rid of CP'.
Oh we prayed for a miracle, that he'd just be cured and not have CP. With whats been discussed now, I'm praying FOR CP. It just sounds better. Nothing sounds perfect (out of the box we are 'getting' to chose from)
I don't get it. Why Logen? Why my baby? What did he do wrong? What did we, I do wrong? This disease/syndrome whatever it is- is most likely maternal. God, please- you're really going to have to help out if that is the truth. I just don't understand this all. I'm trying so so so hard to keep my faith in the Lord. I find myself closing my eyes and looking up whispering "God Please, please, please, please" about 1,000 times a day. I'm sorry this doesn't make much sense. I start to ramble when I think about this.
Blog Family- Keep on Praying. Please. We all need it. More than any of us, Logen does. Logen NEEDS every extra prayer there is.
Thank you all for my sweet messages. I love the comments, the texts, the emails- don't stop sending them. I need to know you all are still out there- still praying for us. It means so much to me. More than you can imagine, it means that much.
Love you all~ Jess
KEEP ON PRAYIN'
Jess - You continue to be in my thoughts and prayers. I cannot imagine how you must be feeling right now. Your Mommy instincts had always said it was not CP, yet it was something that you could wrap your head around. You found all of us for a reason and a change in dx does not take that away. We are meant to be here for you in this difficult time.
ReplyDeleteKnow that I am thinking of you and sweet little Logen. I pray that you begin to have some of the answers.
Feel free to text anytime. Please keep us posted as you are able. I think of you all the time!
Jess - I am constantly thinking about you and hope you're holding up okay. Kiera is right, your Mommy instinct was right all along. You've been amazingly strong through everything so far and I know you'll continue to be strong for Logen. Never forget, you're a great Momma! Love ya!
ReplyDeleteYou are close in my thoughts at this difficult time.
ReplyDeleteWe are still praying for you here Audrianna when I asked what she wanted to tell logen even tho she can't really talk except Hi gave me a hug so I am guessing she wants to give logen a hug. Audrianna had really really bad behavior problems when on the keppra we hated it she would bit and hit and pinch and scream u name it. Then we had her on the B6 Vitamins she took 1 pill daily half in the am half at night It worked wonders up until she was taken off keppra. So i pray it works for logen
ReplyDeleteJess, I'm so sorry you're going through all of this. Thinking of you and sweet Logen. Mona takes Keppra, too. You can try Periactin (an antihistimine which increases appetite) to counter the non-eating side-effect. We've been down a similar path, Mona was dx'd with CP too at first and then finally when we learned about the microarray-- 2 years into the search--- we found her genetic disorder, a chromosome deletion (4p-) which explains everything, makes so much more sense and gives me more information about what to expect. Also, we've been able to get in touch with families whose experiences are so much like mine. So there is a benefit in just knowing. I know it's impossible to stop googling everything they tell you. But really, try to stop! All the negative descriptions of the disorder don't change who Logen is NOW. In so many ways he's doing incredible things. Mona's syndrome also has horrific descriptions in journals, etc, in the Merck manual it says some of the same things said of Logen's possible dx. So far, many just aren't true and as doctors are able to diagnose smaller chromosome abnormalities through the microarray, they are finding more and more "mild" cases, and in my opinion the whole description needs to modified to fit this. At first, only the most obvious, "severe" cases were diagnosed. Anyway, my point is that having an answer will be extremely useful, but at the same time don't lose sight of Logen's world today, his needs, his abilities, his health. Take it day by day just as you always have. You are an amazing mom and you can get through anything, I just know it. Please let me know any help you need, advice, etc, Mona has a lot in common with L, more and more it seems as these new dx's keep coming. We were just there with the seizures (inpatient LTM EEG) a few months ago. It sucks. There are a LOT of meds out there, and you will find what works. We've tried like 10! Keppra can cause behavioral issues and eating probs, try adding Vit B6 for the mood changes (your neuro can prescribe and advise) and Periactin for the appetite if they don't subside. Because otherwise it's great at controlling sz's and doesn't cause harm to liver or kidneys like so many others do. HTH
ReplyDeleteLove you,
Caitlin, Mona's mom