Happy Birthday Darling Leah! And the SHORT version of her update. The LONG version is next.

Today is Leah's 9th birthday!  And I thought it would be a perfect day to give the best update ever!

I know that many of you have been anxiously awaiting the results of Leah's hospital stay in London.   I am not quite sure what has caused my delay in writing, I did start it almost immediately but couldn't get the feel of it right.  Maybe it was because I was still attempting to process all of the information and the associated emotions of it all.....and there is a lot of it!

Okay so I will break it down into the short story for those of you that want to get on with their day  :)  and the long story for those of you (like me) who really want to understand what it all means.

SHORT STORY

Leah's medical team in London have come to the following conclusions

• Leah does have Hashimoto's Thyroiditis
• Leah does have Hashimoto's Encephalopathy (finally someone in Ontario agrees with Mayo!)
• the encephalopathy is at this point in remission
• should it relapse they have a plan in place and will treat her following the standard protocols
• she will experience flare ups of symptoms possibly for the rest of her life
• Leah's VEEG was completely clear - meaning even with weaning her from the Keppra (anti-seizure medication) she was seizure-free for the entire week.
• therefore they have discontinued the Keppra 
• this means that she does not have an Epilepsy diagnosis!
• her seizures were caused by the brain inflammation of the HE
• One radiologist has reviewed all 3 MRIs and has declared her most recent one as completely normal! 
• meaning she shows not residual damage from the encephalitis!
• Her London team will continue to see her every 6 months to monitor her.

A big THANK YOU! from Leah for all of the e-cards she received.  Every morning and afternoon more were delivered to her room.  She has made a scrapbook of them all so she can remember your kindnesses forever!

So it is with very happy hearts that we share this most excellent news with all of you!  As always we thank you for all of your love and support throughout this journey.  The road ahead will still have plenty of bumps for Leah, but at least now we have plans in place to deal with them.

A Princess and her Castle

After a busy and very exciting weekend, followed by a busy and exciting Monday, Leah is having a TERRIBLE Tuesday! Seizures, sleep disturbances, blurry vision, headache, weepy, tired, cold. She is obviously staying home from school. She had been doing so well too.

At least she was interested in learning more about what is going on with her. I gave her this analogy.

She needs to think of her body like a castle that is under attack(germs, viruses, etc) all the time. Inside the castle there are defenders(anti bodies) who run around defending against the attackers. Sometimes the walls of the castle are weakened by mysterious forces (sickness, stress, overtiredness etc) High in the tower(brain) is the princess. She has special protectors(Keppra). Sometimes the defenders are so eager to do a good job defending the castle that they get confused and start attacking the things that live in the castle too. When this happens the princess's special protectors help to keep her safe but sometimes, the confused defenders fight them as well. And as skirmishes breakout thoughout the tower different things(symptoms) happen.

This started a long conversation but she finally seems to "get it". Of course by this afternoon she may not remember we even had the conversation! But at least I will be able to refer back to it :)

Day 3 Update - Neurology

Our third day here was every bit as wonderful as all the others.  We moved over to the Ronald McDonald House and settled in.  It is a wonderful place, the people are kind and compassionate and have found the jobs they were meant to be in.

BTW....You can really tell you are in the states when you see signs stating guns are not allowed in the building!  That catches me by surprise every time!  :)

Leah's neurology appointment was 2 hours long!  He had reviewed her entire chart the night previous and was well prepared to speak with us.  He took a very in depth history, asked lots and lots of questions and then examined her.  He even sat back and very patiently listened when Leah was telling me the ENTIRE plot line of the chapter book she had been reading!

He began to develop a diagnosis and then called a colleague and had a telephone consultation with her.  They both agreed that what she exhibits is Negative Cortical Myoclonus  - which basically means a seizure disorder that presents itself as a sudden unexpected relaxation of the muscles; as opposed to a sudden contraction of the muscles as is stereotypical of a seizure.  Cortical meaning it takes place in the cortex.

The area that the seizures would be occurring is deep inside the two sides of the cortex which is notoriously  very difficult for eegs to pick up readings on. If my understanding is correct for Leah it would be effecting the purple, red and yellowish areas.  

The good news is the MRI showed no further white matter changes, the one area she had remained the same and there is no evidence of changes in the areas the seizures are occurring.

She has been prescribed the anti-seizure medication Keppra, we will trial it for 1 month and see if she improves.  The neurologist has requested we keep in telephone contact with him so he can follow her progress.  He will be sending his recommendations on to her doctors at home as well.  As a precaution he has ordered a set of bloodwork to rule out an autoimmune issue causing the seizures but he is quite certain that it will come back as negative.

Is it great news?  Epilepsy?  Not great, but totally able to deal with it.  She would need to be on medication for the rest of her life, have frequent blood work to check the levels of medication in her system and make changes to it as she grows, hits puberty etc.  It will impact her for ever, and she will have a hard time making people understand because it is the opposite of what people expect.  But keeping things in perspective, when we are in the children's clinic and see the spectrum of disorders and diseases the other kids are coming in with, I am grateful that epilepsy is all we have to worry about.

So now we are heading back to Pannekoeken for brunch!

Leah wants us to split one stuffed with bacon and one stuffed with chocolate chips.  Not sure if my system can handle that in one day, but I feel like celebrating so I will pack some Tums and let her go crazy!  :)

After that, we head over to the overseeing Dr. for our follow up appointment.  There we will get her opinion on the blood work that was done and find out if we also have to face a lifetime of synthetic thyroid medication.  Again, in the grand scheme of things, more bothersome than anything and completely manageable., We will also find out if we have to stay longer or try and make arrangements to come home early.

Update to come later one!