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.

VEEG - London Children's Hospital

So here we are again, all wired up and ready to....wait.  :)

Leah and I arrived at the hospital around 1pm and she immediately went to the EEG department to get all the wires attached.  This time they have used a type of adhesive similar to model airplane glue and an air "gun" to  quick dry it.  As well, they have wrapped her head up in a turban and **fingers crossed** everything will stay attached and sending strong and reliable signals back to the computer!

They have said we should be prepared to be here until Monday at least, so we have already unpacked and settled in.  Leah has brought a variety of movies, books, activity books and her pencil case.  That should get us through to tomorrow, after that I will be relying quite heavily on the Child Life Specialists and the playroom to keep her busy.  This is how the hospital website defines the role of Child Life

A hospital visit can sometimes be a scary and unfamiliar experience for infants, children, youth and families. It is often a source of tremendous stress and anxiety.

The Child Life program strives to meet the psychosocial needs of children and youth while being in the hospital by helping them adjust to and understand hospitalization, medical procedures, illness and injury.

The Child Life program strives to:

• Promote optimum development of children and adolescents
• Maintain normal living patterns
• Help alleviate the stress and anxiety that children and their families may encounter as a result of the hospitalization/medical experience

Child Life Specialists

• Help children and their families understand their reactions and concerns to the hospital experience by providing accurate and honest information.
• Explain medical experiences and what you may see, hear, smell, taste and feel while being in the hospital.
• Create opportunities to explore and cope with “pretend” and/or actual medical equipment. This may increase your comfort level and familiarity with medical care.
• Help families select procedures, tests and exams that are most helpful during your health care experiences.
• Suggest coping techniques for procedures such as distraction, deep breathing and relaxation techniques.
• May be present during medical procedures and provide information about medical events.
• Offer support to family members such as siblings by helping them adjust to the hospital environment and understand health care experiences.
• Provide opportunities to play.
• Offer and adapt activities when you are on bed rest and/or in isolation.
• Coordinate holiday entertainment, special visitor events, and recognize significant events such as holidays and birthdays.
• Design all play and activity areas so they are welcoming, safe and healthy.

What to Expect

The Child Life Specialists will use play, role-playing, teaching puppets and dolls to help make you feel more at ease while being at the hospital.

They will also help you understand complicated medical stuff in a way that is easy for your to understand, and help make the scary times a little easier.

The hospital also offers a really cool e-card service.  London Children's Hospital e-card link  If you have a few spare moments, please send Leah an e-card, she will be tickled pink to get them!  She is currently on B6 room 214B.

April's Update - Good News Only..

My apologies go out to everyone for the extended silence.  Our lack of progress and a couple of set backs has me very tempted to rant and rave, so I have been trying very hard to take Thumper's advice.

So lets just focus on the good things, we just got Leah's most recent bloodwork and ultrasound results back and they were both good!  This is the first time since August that she hasn't had to change her dosages, her thyroid tests were exactly at the midpoint of the ranges.

Her thyroid ultrasound showed very minimal change to the nodule.  Due to the pancake shape of the nodule, they are unable to do the Fine Needle Biopsy as the thinness precludes them being able to get a good sample.  This is giving me many sleepless nights and minor heart palpitations when I think about it, so I am doing my best not to dwell.  Our only other option is to have her thyroid removed completely and that is just way too drastic.

Her weight is holding steady at around 54 lbs, she has grown 1/2" and her attendance at school while not perfect is still so much better than last year.

May 21st Leah and I return to London Children's Hospital for her VEEG.  As you can see from the article below, the hospital had a refit a couple of years ago and now offers a "state of the art" VEEG unit.  I am hoping we get some more reliable results than her last one.  

Epilepsy treatment goes high-tech at London Health Sciences Centre

(LONDON, Ontario) - The Epilepsy Unit at London Health Sciences Centre (LHSC) has been refitted with the most state-of-the-art equipment to monitor and investigate epileptic seizures. The new equipment will provide more accurate and efficient detection of seizures to determine whether patients are candidates for surgery to help stop the seizures. LHSC's Epilepsy Unit is the largest of its kind in Canada and a world leader in epilepsy treatment.

Each of the eight beds in the unit will now be equipped with a colour video camera, microphone, and a cutting-edge version of equipment which traces electrical impulses in the brain, called an EEG (eletroencephalogram). Physicians and staff will now be able to monitor patients 24-hours a day, without interruption, and capture seizures and pinpoint their origin in the brain as they happen.

Understanding exactly where seizures begin in the brain is key to determining if surgery is an option. The audio and video equipment is inconspicuous and mounted in the ceiling so it's not intrusive to patients. The video equipment, which also has infrared capabilities to view patients sleeping at night, will provide an opportunity to record and see physically what happens to a patient during a seizure.

The new technology also provides for remote monitoring. Patients can leave the unit and walk to other parts of the hospital and still be monitored. Physicians and staff can also access the live EEG recording and video of a patient from any of LHSC's three campuses.
Dr. Samuel Wiebe (weeb), Neurologist and Director of LHSCs Epilepsy Program, says, "This incredible new technology will provide us with even greater precision in detecting where in the brain the seizures begin, and continuous monitoring gives us the capability to capture more seizures over a shorter period of time. It's a huge step forward in helping our patients. It also means patients will now spend less time in the hospital, and they will know sooner whether surgery is an option."
LHSC purchased the new equipment from XLTEK for just over $890,000. Dr. Wiebe and the Epilepsy team are also working with XLTEK to develop non-invasive technologies to view the origin of seizures in the brain through Magnetic Resonance Imaging (MRI).

London Health Sciences Centre (LHSC)
Epilepsy Unit - Fact Sheet

• The unit is the largest of its kind in Canada and a global leader in epilepsy treatment. Dr. Samuel Wiebe is the Director of LHSC's Epilepsy Program. The unit is located at LHSC's University Campus in London, Ontario.
• LHSC's Epilepsy Program began in 1974. A four-bed unit opened in 1986. The unit expanded to the current eight-bed unit in 1993.
• Approximately 250 patients are cared for each year in LHSC's epilepsy unit. The majority of patients are from Southwestern Ontario, however, the unit is also a national referral centre for epilepsy. The unit has also treated some international patients.
• EEG (electroencephalogram): A recording of the electrical impulses of the brain.
• Definition of Epilepsy: The word "epilepsy" is derived from the Greek word meaning a condition of being overcome, seized or attacked. Epilepsy is not a disease. It is a symptom of a neurological disorder - a physical condition - that from time to time produces brief disturbances in the normal electrical functions of the brain. Epilepsy is characterized by sudden, brief seizures whose nature and intensity vary from person to person.
• A seizure may appear as a brief stare, an unusual movement of the body, a change in awareness, or a convulsion. A seizure may last a few seconds or a few minutes. Not all seizures indicate that a person has epilepsy.
• Approximately 1 per cent of the population, about 300,000 Canadians have epilepsy.
• Each day in Canada, an average of 34 people learn that they have epilepsy.
• Each year an average of 14,000 people learn that they have epilepsy; 3,200 are children under the age of 10, and 3,936 are over the age of 60. This means about 60 per cent of new patients are young children and senior citizens.
• The major form of treatment is long-term drug therapy. Drugs are not a cure and can have numerous, sometimes severe, side-effects.
• Brain surgery is recommended when the seizures are confined to one area of the brain where brain tissue can be safely removed without damaging personality or function.

Leah has in addition to her massage therapy for chronic aches and pain, has been seeing a chiropractor.  Dr. Todd Watson at Advanced Chiropractic Clinic has been a real boon for Leah.  At the very beginning he did an incredibly thorough exam, history, took baseline data for her movements, took pictures and xrays.  Her lower spine had developed a curve, she had forward head posture and tilted a bit to one side.  As well, she had a gait analysis and we discovered that she had also developed flat feet.  These changes were relatively new, as she had been assessed by both the Niagara Peninsula Children's Centre and a chiropractor less than two years ago.

Next week Leah goes to get her brand new orthotics and we are going today to find some brightly coloured (her request) new shoes - she is hoping for neon.

 

And finally, Leah is heading to an allergist for some preliminary testing.  Since her bloodwork consistently shows her  Esinophils and IGE as elevated; we felt it was best to see what her body is reacting to.  It is our hope that if we remove those reactions, we can tame her body's overactive immune response and thereby minimize the attacks on her thyroid and brain.

Oh! And on the NEATO list...we have been asked to submit Leah's story for a book about Hashimoto's Encephalopathy.  It will be the first book focused on first person accounts of their struggle with HE.  People from around the world will be contributing.  They plan on having a pediatric section which is so So SO important since it is appallingly under-diagnosed in children!

February

Not really much to update on.

Upping Leah's seizure medication for her night time dose has made a huge difference.  She is sleeping better, which means that we are no longer dealing with her sobbing every morning before school.  It isn't that she didn't want to go to school, but that she just felt so darn tired, sick, blurry and dizzy every morning.

Leah's appointment at London's Sick Kids was about what we expected.

They are not willing to acknowledge the diagnoses given by Mayo Clinic.  They will not consider further treatment until they can be confirmed in Ontario.  So very, VERY frustrating!  So for now we continue to treat the symptoms instead of the cause.

We have a week long inpatient admission to look forward to in April.  She will be going in for another  Video EEG.  But the biggest difference is she will be able to be mobile for this one.  In fact they are encouraging her to be since what they are really trying to capture are the moments when she suddenly falls (Negative Myoclonic Seizures) - they need to see exactly what is happening in her brain when that occurs.  She will be up playing in the playroom, doing school work in the classroom and just walking around.  We will have to wean her from her medication prior to the admission so the weeks leading up to the VEEG might be a little yucky.

No forward motion on the biopsy yet, I will be speaking with the doctor on Monday to get that sorted out.

Next weeked Leah and her sisters have been invited to participate as background actors on a film shoot.  One day they will be in a semi-formal dance scene - so lots of girly dresses, pretty hair and sparkles, and the next day will be gym and classroom scenes.  We are turning it into a "Girl's Weekend" and staying in Toronto at a hotel with a pool (I promised the pool part!  Come on Priceline....get me a good deal).  They are so excited!  I am sure we will have some pictures to share from all of that.

3 Weeks Have Dragged By and No Appointment

I really do think this has been the longest three weeks of my life - with no end in sight.  Despite repeated calls to McMaster, we still don't have a date for Leah's thyroid Fine Needle Aspiration Biopsy.  It seems there is a back up in Diagnostic Radiology and her appointment will be delayed while they "triage" the wait list.

I want to scream and shout and throw the mother of all tantrums!  "What is there to triage, this is an eight year old little girl!  She needs this done NOW!"
But of course I don't, because my more logical self knows that

• it won't do any good - it might feel good to just let it all out but it won't help
• there are many people on that waiting list with the same feelings I have
• because Thyroid Cancer is as her endocrinologist says "the good cancer" or, "If you're gonna have cancer, this is the one to have!"  And this means they won't triage her as urgently as I want
• the scared mommy side of me really doesn't want to know because then it is real and right now I can still pretend

Right from the start of all of Leah's issues, when I would feel myself sliding into bouts of self pity and "poor Leah", I could give myself a kick in the pants by reminding myself it could be worse, it could be cancer.  When we finally got her MRI back and it didn't show any masses, it was a big PHEW! moment - not cancer.  I have always figured I could handle anything as long as it wasn't cancer.  

Now when I am having a bad day dealing with the doctors or watching Leah have her issues, I automatically start my mantra, "remember, it could be worse it could be cancer....oh wait, it might be!"  Which then starts a whirlwind of thoughts and feelings that just feed off each other.

I need a new mantra.  Something a little more positive.  Today I am drawing a blank, but I am sure it will come to me.  Because really, I have to remember that even it if is cancer, we CAN handle it.  It won't make me throw my hands in the air and give up.  I can't, Leah will need me.

Questions and Answers

In response to the previous post, we were asked some very good questions; it made me realize in hind sight that in my attempt to avoid over dramatizing the situation, I may have in fact mislead everyone as to the serious nature of what we are facing.  I wanted to address those questions.

1. .......You may want to research the side-effects of biopsies before going ahead with one. Did you know that if there are cancerous cells, a biopsy can increase the risk of spreading these cells from this localized area?
2. My mum had been told she had a thyroid nodule and was told to have a biopsy. I cautioned her about it so she only had an ultrasound instead and opted to take natural means and supplements to get her thyroid back to normal - she'd never seen her doctor so upset with her before!   Anyway, about 8 months later, she took another ultrasound test (one of the safer medical tests) and her tests were fine - no thyroid nodules!
3. ....what are the doctors going to suggest as a solution? Surgery and thyroid med's for life? 
4. I just wanted to let you know of other options in case you wanted to investigate them further......

The first question I would like to address is the Fine Needle Biopsy.  Leah will be undergoing an Ultrasound Guided Fine Needle Biopsy.

Fine Needle Aspiration Biopsy (FNA): An introduction

A Fine Needle Aspiration (FNA) Biopsy is a simple procedure that involves passing a thin needle through the skin to sample fluid or tissue from a cyst or solid mass, as can be seen in the picture below. The sample of cellular material taken during an FNA is then sent to a pathology laboratory for analysis. Fine needle aspiration biopsies are often performed when a suspicious lump is found, for example a breast lump or enlarged lymph node, or if an abnormality is detected on an imaging test such as x-ray, ultrasound or mammography. Fine needle aspiration is a relatively non-invasive, less painful and quicker method when compared to other methods of tissue sampling such as surgical biopsy. A cyst aspiration can also be achieved with a FNA, where the fluid is drained from a cyst with no need for analysis........The risks of fine needle aspiration biopsy include the possibility of cancer cells being trailed into unaffected tissue as the needle is removed, but this is rare when the test is performed by skilled practitioners. 

 

Is there a risk of cancerous cells being trailed behind?  Yes there is, but looking at the overall picture, I would rather take that risk than the risk of not finding cancerous cells at all.  Ultrasound alone can not reliably offer a diagnosis of whether a nodule is malignant or not.  Without the FNAB we are putting her at a very great risk.  We can not afford to stick our heads in the sand with this.  As it stands right now, Leah has a 25% chance that the biopsy will reveal cancerous cells.  If you had a 1 in 4 chance of winning the lottery you would buy a ticket right? - you would think the odds are in your favour?

Question #2 - It is a medically accepted fact that thyroid nodules in children represent a higher risk.  Both because they are relatively rare in children and because if they turn out to be malignant, it is very aggressive.

• Thyroid nodules in children present a much higher risk of malignancy that in adults (25% versus 5%) .2  In light of this finding, all thyroid nodules in children must be considered worrisome until proven otherwise using ultrasound (US) and fine needle aspiration biopsy (FNAB).  Nodules bearing low-risk cytology findings need to be closely monitored with interval US to confirm that there is no change in size. 
• http://www.ut-ent.net/2817/management-thyroid-nodules-children/

• Thyroid nodules are uncommon in children before puberty (1.5% or less). Any nodule discovered in such an age group should therefore be viewed with suspicion and the diagnostic approach should be more aggressive in children than in adults because they are more often malignant than in adults. The mean incidence of thyroid carcinomas in childhood thyroid nodules which were operated on is summarized in Table 1⇓ and shows an overall 26.4% risk of cancer.
• http://erc.endocrinology-journals.org/content/13/2/427.full

•  Thyroid cancer is very rare in children, but when it does occur, it can be more  aggressive than it is in adults, often spreading into nearby tissue such as the lymph nodes. The most common type of thyroid cancer in children is papillary cancer.Because the cancer can be more aggressive in kids, treatment must be equally aggressive.
•  http://www.netplaces.com/thyroid-disease/thyroid-disease-and-children/thyroid-cancer-in-kids.htm

Supplements - I spend hours and hours researching a natural approach to helping Leah - as a compliment to the medical interventions, not as a stand alone approach.  I have read books and research papers by so called "experts" and so much is contradictory.  I can do real harm to Leah if I make the wrong decisions on supplements and natural interventions.  Keeping in mind that she is not just dealing with thyroid issues.  She has an ongoing Autoimmune Disease that is affecting many areas in her body and it is a very misunderstood disease and not much is known about it as a whole.  Currently we are modifying her diet, eliminating all soy and goitrogens - 

• Goitrogenic foods: Goitrogenic are foods that can affect thyroid function by inhibiting synthesis of thyroid hormones, resulting in enlargement of the gland (goiter). Goitrogenic foods include Brussel sprouts, kohlrabi, turnips, rutabaga, radishes, cabbage, kale, and cauliflower.

She is taking an excellent quality mulitvitamin, Vitamin C and an excellent quality of Amino 3s for brain health. 

As well, she is set to go see an allergist to rule out food allergies and/or gluten intolerance that may be contributing to the high immune response in her body.

She sees a massage therapist to help with the aches and pains from her body's inflammatory response that is so commonly seen in Autoimmune Disorders.

To assist with her nutritional deficits due to a very poor appetite she chooses one of these each day.  She is 10th percentile for weight and 25th percentile for height - she used to be between the 70 and 85th percentiles for both.

http://abbottnutrition.com/Products/pediasure-sidekicks-clear

Question #3 - Leah is already on a lifelong course of thyroid meds.  Her thyroid has already been damaged beyond repair.  Our goal at this point is to minimize any further damage and to support it with the thyroid meds so it can continue to produce the natural hormones for as long as possible.  The current thinking in the medical field is this is the only way to treat it.  Unfortunately I don't accept this answer and continue to look for ways to minimize the immune reaction and therefore minimize the damage to the thyroid.  There are lots of information out there supporting my thinking and we will continue to research this.

And of course it goes without saying, should the biopsy show cancerous cells there will be a surgery of some sort - whether that means a full thyroidectomy or just removal of the left lobe would be decided if/or when necessary.


Question #4 - We are always looking for and open to options, innovations, solutions....anything!  No decision is made without HOURS and HOURS and HOURS of research, thought, prayer and discussion.  I belong to several forums and groups of parents of children with Hashimoto's and groups for adults with Hashimoto's.  This way I can find out what is being prescribed for other patients, what their medical care plans are, what has worked for them at home, what supplements or alternative therapies they are using and so on.

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!