Hello, Everyone! We have been in the Children's Hospital since Wednesday morning. I have to share that this place is amazing! Everything is such a vast difference in comparison to the care we have received previously. Even the ease at getting the sensors glued to his head to the way they wrap him up and the pack that they use. Instead of being confined to a tiny room on a short length of cord he's in a large room and is allowed to go on a battery pack to play out in a central area with other kids. The nursing staff is nice. The Neurologist/Epileptologist comes around 2-3 times a day and is informative, friendly and helpful.
They started to ween Abe off his Klonopin the first day to try and instigate a seizure. So far he hasnt had an "episode" but his EEG shows multiple bursts of epileptiforms throughout the day which is indicative of seizure activity. He had been very lethargic and sleeping A LOT which is very much not Abe. He has been very cuddly though so I'll take the cuddles!
The plan seems to be to add in Keppra, an anti-convulsant and slowly take him off the Klonopin once we get back home. Due to withdrawal issues that has to happen slowly and with his sleeping issues we may keep a night time dose but aren't sure in that yet!
So, for now we just keep waiting! Thanks again for being amazing and for caring about Abe.
I just wanted to share that today Abram had an awesome day at Therapy! He said "UP!" to his speech therapist and mimicked "Ohhhhhh" in the mirror for the FIRST TIME EVER! He's been seeing her for over six months and today was the day he actually said a word in front of her. Sadly, she told me that she is leaving and we'll have to start over with a new Speech Therapist but HE VERBALIZED today and that was huge. He'd gone months without making much noise or babbling so we were getting very concerned and then all of a sudden he was making "brrrrrrrr" noises all day yesterday. I'm excited about that.
He also actually pedaled the trike with his Occupational Therapist today as well! He wanted to keep going down the hall even! So, we need to get on the ball and get the adaptive pedals for his trike so we can do the same at home. Right now he's still a little too small to reach the pedals so he needs some adaptive equipment to add on to the pedals to make 'em taller and to also strap his feet to them since he has Hypotonia it's easier for him to be strapped on for ease of movement! His OT sent us a link to some pedals that should work so we need to get those ordered soon so we can get him some good 'ol fashioned toddler exercise.
I went through all of his medical records tonight and have everything ready to go for Minnesota next week. Even made the hotel reservation for Tuesday Night as I plan on going up a day early to try to have an afternoon of fun with him before we're confined to one floor of a hospital! This kid loves being outside so i need to get in as much outside time as possible before we are admitted!
Everything is coming together nicely. Thank you so much for your help and for sharing Abe's story. You are amazing.
Things have been moving along as we now are only a week away from being admitted to the Children's Hospital in St. Paul, MN via the MN Epilepsy Group. Since my last update we had visited with Abram's Pediatrician who prescribed him a sleep medication to help him get some much needed rest. However, after just six days on the drug we realized that it was not a good fit for him. He was becoming very aggressive with his moods and three of the six nights Abram and I landed on the couch sleeping together as he just couldn't settle himself in at all. On the last night, he drenched two different jammie sets in sweat but was only 97.7 for his temperature so I called his Pediatrician and they had me ween him back off. The drug is also used to bring down blood pressure and heart rate and it was having quite the adverse affect on him. We are now officially off and tonight will be the third night. I'm hoping he gets some rest! We spent a lot of time outdoors today so I'm hoping all the nice fresh air will get him some sleep tonight!
Our Neurologist finally called us back today as well to tell me that the sleep medicine was not something that he would not have prescribed. Then when I asked him again about the new cyst that was reported in the Radiologist Report on his March's MRI he asked "What new cyst? I didn't even know there was one until I saw your email."(This is the kind of stuff that infuriates me.) But I digress. He is a good kind man and is doing his best. I'm just frustrated that the fact that: 1) I asked him directly about this in the hospital and he dismissed me with his hand like he was shooing a fly 2) The cyst is IN the Radiologist Report and 3) the Cyst is Flagged on the MRI. I just can't wrap my brain around a Neurologist NOT looking at an MRI that they themselves ordered but he promised to go over the images from March at our next appointment with him in June. It is what it is! I honestly feel guilty even sharing that tidbit but it's things like this that help people understand what we go through. Every single family I meet that is suffering with the unknowns of brain cysts, brain lesions and benign brain tumors as well as Epilepsy all go through the gamut of doctors where we all feel like we're chasing our own tails. This is the norm, not the exception but honestly, it feels better knowing that it's not just us!
The good news is we are off to a Nationally Recognized program that even the Director of the Epilepsy Foundation here recommended and confirmed as a good place to go. She was kind enough to chat with me over the phone again (we had spoken on the phone last fall before Abram's Epilepsy Diagnosis) and put me at ease that the people we have been discussing Abe's case with (Dr. Chugani in Michigan and Dr. Weiner at NYU) are highly regarded in the field of Epilepsy so she helped me to feel a lot less frustrated and more like we are on the right track!
One week from today, Mr. Abe and I will be in a hotel in downtown St. Paul. I'm hoping to get there the day before to get a day of fun in before we're confined to a hospital stay for 10 days or less!
Much love to all of you. Thank you again for all your help. We literally couldn't be doing it without you.
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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