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.

And the waiting begins.....AGAIN

Happy New Year from the Balints!  I hope this finds you and your family in good health and enjoying the return to school, work and normalcy.

The holiday season was busy and hectic and like so many other families was full of sickness.  That terrible flu/virus/cold thing that everyone you talk to had, hit our house as well.  Each of the kids had it to some degree, as did Paul and I.  Leah was one of the last ones to show the actual symptoms of the "flu" but she suffered from the side effects of her body trying to fight it off for days ahead of time.  On Boxing Day she was reduced to crawling or being carried - she had such terrible vertigo that she couldn't stand.  She had her usual hallmarks of an "episode"; blurry feeling in her head, right eye feeling funny, extremely cold, tired, weak, falling, dropping things and frequent sleep disturbances.  She missed out on fun activities with her siblings and her best friend.  

Her return to school has been pretty good so far, although on Tuesday there were tears, she didn't feel well, was tired and wanted to stay home.  Again we had to encourage her to push through it and hope that it would get better.

On Wednesday we returned to McMaster for another appointment with the Endocrinologist.  When we last saw him, he ordered an ultrasound on her thyroid because he could feel a nodule.  He also stated that any further follow up could be handled by her family doctor and he didn't need to see Leah any further.  Imagine my surprise when the office called to book the appointment!  We had already received the ultrasound report from Leah's family doctor and he had made it sound as if everything was normal.  

Realizing that everything was not normal, I began to do more research.  

By the time the appointment came, Paul and I had already reached a decision on the course of action we wanted the Doctor to take and I showed up for the appointment armed with documentation supporting our decision, prepared to duke it out with them.

What are thyroid nodules?
Thyroid nodules are growths in the thyroid gland, which is located in the front of the neck and controls many critical functions. Most nodules are benign tissue, but some can be malignant, or cancerous. Thyroid nodules are rare during childhood and adolescence, but they can and do occur. There are several types of nodules: Colloid nodule, a benign accumulation of thyroid cells forming one or more nodules on the thyroid gland; follicular adenoma (benign); thyroid cysts (usually benign), small sacs filled with fluid and sometimes with solid parts; Inflammatory nodules, formed as a result of chronic inflammation of the gland; thyroid cancer (typically hard nodules). Some nodules may affect the hormones produced by the thyroid gland, causing symptoms of hypothyroidism (under-active thyroid gland) or hyperthyroidism (over-active gland).

http://www.hopkinschildrens.org/thyroid-nodules.aspx

As it turns out, Leah has a pancake shaped nodule in the left lobe of her thyroid that has partial cystic qualities.  The nodule is over 11 mms at it widest section.  It is common practice that once a nodule is bigger than 10 mm, a Fine Needle Aspiration Biopsy (FNAB) is recommended.    

So before I even had a chance to put on my big girl panties and spout research stats, the doctor took the wind out of my sails by advising we proceed with the FNAB.

Fine Needle Aspiration Biopsy (FNAB)

Once the patient is ready, a small, fine-gauge needle is inserted into the nodule. The needle is smaller in diameter than the needle used in most blood draws (usually a 25 gauge 1.5 inch needle). The patient holds his breath while the needle is rocked gently to obtain as much tissue as possible. (The reason for holding the breath is to minimize movement of the structures in the neck.) The needle is then withdrawn and pressure is applied over the thyroid area to minimize bleeding. This procedure is usually repeated four to six times to ensure that an adequate amount of tissue has been collected. After the procedure, pressure is applied over the neck area for 5 to 10 minutes to assure that the bleeding has stopped. The pressure also helps to reduce any swelling that may occur. The entire procedure usually takes less than 20 minutes.

http://www.medicinenet.com/fine-needle_aspiration_biopsy_of_the_thyroid/page2.htm

The doctor expects the FNAB to be scheduled within a month (I’ll believe it when it happens!) with the potential of a “pre-op” appointment due to her young age and the possible need of sedation.

He threw a lot of stats and numbers at me, most of which I was already familiar with. 

Here is the Coles Notes version:  

• Nodules are uncommon in children, however they are upto 4x more likely to be malignant than in adults.  
• It is estimated between 15 and 25% of nodules in children are cancerous.  
• He was also very quick to point out that means there is a 75-85% chance that her nodule is not.

So we now begin a very LOOOOOONG couple of months of waiting and trying not to worry.

As always prayers are requested and very welcome!

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 :)

November's Update

After a couple of weeks full of doctor's appointments and trips to McMaster, I finally felt prepared to give a long comprehensive update on Leah.

INFORMATION IS POWER
As I think I have mentioned before I feel most in control of all of this when I am well informed.  I have been very heavy into research and networking with other patients and parents of pediatric patients with similar issues as Leah. There is so much information and data gathering that has to be done and kept up to date for each of her doctors.  I feel like I have turned into a fact-spouting documentation obsessed lunatic!

As a coping measure I have developed a large binder full of information on a variety of subjects relating to her issues as well as keeping copies of her medical history, bloodwork and diagnostic results and an ongoing list of questions.  The binder I use is similar to the one below.  It even has a shoulder carrying strap!  At Leah's last appointment I had it on the chair beside me open to a few articles that were heavily underlined with points I wanted to address.  When the doctor walked into the room I actually saw his shoulders slump!  Poor guy knew it wasn't going to be a quick easy appointment!

I have also created a document chronicling all of her bloodwork.  As I explained to one specialist when he wondered why I would do such a thing....I need all the doctors Leah sees to be able to take a look at the bigger picture.  They need to be able to see more than just the results of the tests THEY order.  Maybe if they had access to a document like this previously, so much time wouldn't have been wasted.  With this chart they can see at a glance how she is trending and draw conclusions from that.  For example, if her esoinophils and her IGE are consistently elevated (which they are - minimally) that indicates that there is an allergic response to something going on.  Now that triggers an investigation into what she is allergic to.  Eliminating any reason to rev up her immune response is our goal right now since it is already in a state of hyper-vigilance.

As well, everyone can see (especially me) what needs to be monitored and ensure that those problem results are routinely rechecked.   

Taking a step back and looking at how we were handling things at home and at doctor's appointments I realized that everything was happening TO Leah.  But she really wasn't an active participant and amazingly she didn't really have a good grasp on what was actually going on with her!  That one really shocked me!  How could she not know??  But then I gave my head a shake and realized she is only 8 and I can't just assume she would understand all of this.  I guess that it is a testament to how much she trusts us that she hasn't really questioned any of it.

As such, we have been encouraging her to take a larger role in her care.  I am encouraging her to be a more active participant in her appointments, to speak for herself instead of just pointing at me to provide the answers.  She fills out a daily chart outlining how she feels, what her symptoms were that day, rates her day based on a smiley face scale and even gives me a brief description on the back if something abnormal occurs.

SCHOOL
On the school front she has been doing very well.  Still missing a larger number of days due to either illness or doctor's appointments than I would like, but she is managing.  Her teacher says that she very smart and can pick up new concepts very quickly which is what is allowing her to catch up on missed school work.  Without that ability, she would be very behind.  However she is very very VERY disorganized.  She does well within the structure of the classroom where there are clear rules and schedule.  But give her any sort of freedom and she can't function.  She easily becomes overwhelmed and at times reduced to tears.  I am currently struggling with how to help her with that.  Her agenda doesn't really do it for her and I don't want to overload her with charts and check lists.  Anybody have advice?

MEDICAL
Recently Leah was seen by her new family doctor, a Neurologist and an Endocrinologist.  The outcome of all of that has been a couple of referrals to other hospitals.  In the coming months she will be seen at both Toronto Sick Kids and London Sick Kids.  She has a follow up MRI before the end of this month and an Ultrasound of her thyroid pending.  We will be gradually increasing her dosage of Kepra as she is still having frequent events (as the doctors call them) and her dosage was still at the "sub therapeutic level".

At the endocrinology appointment the doctor felt nodules in her thyroid and wants to do the ultrasound to investigate those as well as create a baseline to track any changes.

There is still some question in the minds of those doctors if the diagnosis given a Mayo Clinic is correct.  I am finding this increasingly frustrating.  I can't decide if it is ego, pride or just spitefulness that is causing their hesitancy or if there is a true doubt.   At least the psych consult is off the table now!

With regard to how she is feeling, Leah still is troubled by sleep disturbances which may or may not be seizure related.  She is frequently up during the night but doesn't remember much of what has gone on.  She comes to us seeking comfort which means none of us are feeling rested!  :)

Her mornings are still difficult and we have to be very firm with her and harden our hearts to some tears.  Not everyday thank goodness, but at least a couple times a week.

During the day she is still dealing with her sudden falls and dropping things.  Unfortunately this means her time on the monkey bars has had to be curtailed as whenever one of the Negative Myoclonic Seizures occurred, it caused her hands or legs to release and she was falling on her head!  She is still having her rest period at lunch time which I firmly believe is the reason she is able to stay at school most days.

In the midst of all of this, we have had a great month as a family.  Halloween was fun despite the rain and the kids are really looking forward to our annual trip to Great Wolf Lodge tomorrow!

I did however forget to pack the donations for Ronald McDonald House and Ronald McDonald Family Room into the van on our last trip to Hamilton, so for those of you who had sample sized toiletry items to donate but hadn't got them to me yet THERE IS STILL TIME!  :)  For those of you who have already gotten them to me or promised to do so THANKS SO MUCH!    I know they will be greatly appreciated by the families that will use them.