Angels and webwaves

I had the pleasure of speaking with a wonderful soul today. She, too, has a son with Dravet Syndrome. What a comfort it was to speak with someone who truly knew the trials of our plight.

God keeps sending us angels....

I contacted her through her site about her son. She willingly responded with such kindness. It isn't easy for us parents that's for sure, but she took the time and it really helped me today and I'm so thankful.

Valproate good. Illness bad.

So, overall Tommaso has had some success being on the Valproate. He's on a mega dose of it too! He used to have hundreds of tiny 1 second long seizures that have reduced to maybe 2 or 3 a day. Not bad!

Although, yesterday he had 2 long seizures (10 minutes each)that required 3 doses of Midazalam and 1 dose of Diazepam to stop. His oxygen level was at 51%. Not good.

He's now on a strict alternating doses of Tylenol and Advil as I think he caught my husband's cold.

People used to say when I used to freak out about germs around my kids when they were infants, "let your kid catch a cold, it's good for their immune system!".

What an inconsiderate comment! Too bad the kid they intended this advice for has seizures so bad they could cause death because he has a low-seizure threshold. As much as people want to undersand, sometimes they just need to humble themselves.

OK - enough ranting...

Lunches and friends

Lunches used to be the best way for me to catch up with friends.

Today, however, I realized that it's getting harder and harder. I had lunch today with an old friend of mine who is in town fom her now home, The Canary Islands. It would have been a perfect day, but when we finally sat down to order, Tommaso was having a bad seizure. Before we left, my heart was telling me that he didn't look quite himself. Recently, when you'd put him in the stroller, he gets really quiet and almost in a daze. I think he's been sensitive to the sounds from the cars and the brightness of the sun. When I checked his temperature, it was elevated so I gave him som Tylenol in case he was about to get a fever.

Sadly, I may have to limit our outdoor activity. He's been doing so well that I thought his new medication was doing something positive.

I have so many amazing friends.

Anne Marie - thanks for your notes. I thank you for your encouraging words and for your love and support.

Tara - I want to see you. It's been hard doing anything these days. It's hard to function. Tommaso's illness is weighing on me. On us.

To all my friends & family, if you don't hear from me, it's not because I'm ignoring you, don't care about you or don't need/want your love andsupport. It means so much to have you apply yourself to my family. I appreciate everything you do for us. It's just been hard to live normally. I'm trying so hard not to make it sound like Tommaso's illness is the end of the universe. It's just that to me, it is my universe right now.

When things with him have resolved, I promise, I will be a better friend. I hope you understand.

From rock stars to goldfish

When I was in my late teens and early twenties, I was fascinated by music and television. All I dreamt about was getting the opportunity to work in an industry that moved pop-culture in some shape or form. I was such a flake in a lot of ways - didn't care about what was happening in the news, was consumed in Hollywood gossip and my hair was what I spent the most time.

Landing a gig at a major music television station which ultimately led to a job as a record label executive was the ultimate for me. Working several years promoting some of the biggest artists and their records from the late 90's to the early millenium, I can truly say I had some rockstar experiences. What will go down in the history books are nights we all piled into Tommy Lee's limo and the tour that made me the fifth Black Eyed Pea.

By the time I got married and later pregnant with Stefano, I was ready to begin a different chapter in my life. I experienced the height of my career at the moment when it was acceptable to stay young. I felt then and still feel now, that I had it all.

So playing with stickers and play dough isn't quite as glamorous as escorting multi-platinum selling artists down a red carpet but it's certainly and indication that I grew up and found meaning.

DO I have regrets? Maybe. Would I change anything? HELL-TO-THE-NO!

Even amongst thick clouds the sun can shine through...

We finally got a sunny day. A day that was HOT and sunny.

Despite all the chaos our family has had in the past 3 weeks, I just wanted to take a moment and appreciate the near perfect day we had.

Firstly, we all went to bed early last night and had a marvelous sleep. In the morning, I got the kids fed and dressed and Robert was is such a good mood (the first day that you could not see worry all over his face), that he was playing music on the CD player. He chose happy music of nostalgia and played it...loud.

Stefano was a little rowdy with all the commotion, but Tommaso remarkably did not have seizures. I suggested that we go out for lunch today and take a stroll along College St. The feeling I had on our journey was like the days I used to take for granted. The freedom to walk down the street and see your kids and your husband happy and enjoying something so simple brought me joy.

Tommaso went most of the day seizure free. There were a couple of questionable movements, but overall Tommaso looked more alert and was truly with us.

This is the first day we've had like this in a long time. Stefano could even feel that the negativity had lifted. When you're waiting for Tommaso to have a seizure all the time, it's difficult to let loose. Robert and I had great random conversations. It was a nice departure from the serious talk we've had in brief conversations over the phone while I was watching Tommaso at the hospital. We talked today about how some parents complain about how hard it is to have kids. It's amazing how your bar gets raised when you have a child with a challenging form of epilepsy or any illness for that matter. You wish that having the pains of healthy children was your only worry. Not to negate any one person's trials, but I guess there is always a certain perspective to be searched for and viewed.

I'm not going to think about the worries right now however. A little bit of light shone upon us today and I appreciate every minute of it. Praise God for this tiny miracle.

Epilepsy Ontario Fundraiser

My sister and her husband have teamed up with Epilepsy Ontario to dedicate their upcoming marathons to Epilepsy. This will be a fundraiser to help raise funds for research and help support epilepsy patients and their families.

My brother-in-law's event:
http://www.endurrun.com/
ENDURrun 2009 to Raise Money For Epilepsy Toronto has it's own Facebook Group. This is an open event. Anyone can join and invite others to join. There is an online form that people can fill out and if you donate more that $20, there is a gift that can be sent to you!

My sister's event September 5th, 2009 for more info go to:
http://www.trisportcanada.com/guelph2.php

Alternately, you can make donations directly to:
http://www.epilepsytoronto.org/

Thanks Betsy and Dave! We'll be rooting for you!!!!

Had another hospital visit, but glad to be home now...

A couple of days ago, Tommaso continued to have very short clusters and it made us worried. Within an hour, he was seizing. It was a partial seizure then it stopped and became a full body episode. We used A LOT of medication to get it to stop. We called 911. It stopped at the 15 minute mark, but we went to the ER anyway.

He hasn't been tolerating the new baseline drug that he's been given called, Valproic Acid or Valrpoate. He's been vomiting a lot lately (projectile, 2-4 times a day). He's had nausea we suspect it's a side effect of the Valproate.

We spent the last 2 days in hospital. He had another long seizure last night where his eyes were deviated and his eye brows were twitching for 12 minutes before they gave him Paraldehyde. He stopped seizing and today he had a remarkable day. 2 very short arm jerks and a vomit this evening, but he looks great despite everything.

I'm still very hopeful that he will get better. Sick Kids Hospital put him on an emergency list for the Ketogenic Diet. They only take 1 patient a months. Only patients with refractory and challenging epilepsy get a spot. It's a very intensive diet mainly of fat and protein and it's very strict (minute traces of something not listed in the diet can cause seizures). The success rate for controlling seizures on this diet is amazing. There has only been 1 person in the last 5 years that didn't do well on it, so I'm praying for a miracle.

Speaking of miracles, our friends, family and the loving staff at Sick Kids have been a God-send. I'd like to acknowledge my sisters, Katie and Betsy for spending 4 days with me. Katie, I can't believe you came all the way from Kelowna to show your support. Betsy, you are ALWAYS there and we love you both! So does Stefano, by the way. Julie and Frank, that evening you spent dinner with us, it really meant a lot to us. We need a lot of that. Franca, Anthony and family - It was a nice afternoon. Lucas and Valerie thanks for keeping Stefano Happy. Tara, I love your surprise visits. They are so meaningful - friends for life! Anne Marie and Natina, we love you!!! Paty, I'm so happy that you are in my life. I do not exaggerrate when I say you give yourself to the people! Kim, I'm so sorry that he vomitted. You're a true friend when you'll help clean another child's vomit! Love you! Claudia, Gina and Diana - you inspire me. I've learned a lot from your understanding and I know how much you all love my kids. Thank you for your support and kindness. Mom and Dad, we would not be able to survive without your support and unconditional love. You inspire us to be great parents and I hope that we can only live to be just like you - loving and caring. We are so lucky. If I haven't mentioned you, give me some time. I'll remember and I'll either call you or mention it again later.

Thanks for you love and support,
Celestine

Dravet Syndrome?!

So, it's taken me some time since my last posting but, we've received some terrible news about the potential diagnosis. Based on his clinical history and his abnormal EEG, they seem to think Tommaso has Dravet Syndrome or Severe Myoclonic Epilepsy of Infancy (SMEI). It will be confirmed if he is positive for a mutation that they are studying right now. We are still waiting for the results, but they think he has it.

It is any parent's worst nightmare. This syndrome has a poor prognosis and will cause severe cognitive deterioration within the first 2-4 years of life. There is a high percentage of morbidity because of status epilepticus (long seizures - Tommaso has had many) and accidents due to seizures.

I'm not convinced he has this syndrome because he is well developmentally and one of the key indicators is a decline in cognitive development beginning at the onset of the seizures. He was 3 months old when they started and although he's had a poor response to drugs, he continues to climb in development particularly in speech. He is 21 months now and has a vocabulary of over 60 words and can speak 3-4 word sentences: "I want to see", "go down", Who's that?", "I want that!" for example and can say words as complex as: "Octopus", "sanitize", "cereal". He is late with walking, but he cruises very well and to be quite honest, if I was on industrial doses of anti-epileptic drugs for my whole life, I wouldn't be that strong on my legs either.

However, there is always a chance that he has Dravet's, but I'm hopeful still of the slight chance that he does not have it.

A good friend of mine, Pauline, called me the other day. She had these encouraging words:
"Don't give up on your faith, doctors are wrong all the time, God makes miracles everyday. Keep praying and hang on for Tommaso."

Well said, Pauline. You were my angel that day and I will not give up for Tommaso and our family!

If you've read this, can you please take this moment and pray 5 "Hail Mary's" for Tommaso right now.

I thank you from the bottom of my heart,
Celestine

Day 13 in Hospital - plan for discharge by tomorrow

He looks good this morning. Tommaso had a restless sleep and was awaken this morning so they could draw some blood. We needed to check his Valproate levels. We all waited anxiously. Finally arrived - 330. Therapeutic range is 350-700. The level is climbing which explains why he looks so good this morning. Other than being tired and bothered with blood tests, he had only 2 very brief eye deviations (lasting a second each) that we could see.

Reem the fellow who I have so much in common with (she has 2 young kids and is likely around my age) has mentioned that if his level continues to rise and he looks good by tomorrow, then she'll prepare our discharge papers and we can leave after our clinic visit with Dr. Snead.

*Crossing our fingers*

Our first day in the hospital SEIZURE FREE

It's been 12 days since the dreaded 2 and a half hour seizure that resulted in admission to Critical Care at Sick Kids hospital. We were transferred to the Neurology floor and since the doct'rs decided to change his baseline medication, Phenobarbital to Valproic Acid (AKA Valproate), Tommaso's had seizures every other day.

He starts his day with clusters of very short and subtle seizures. They are almost unnoticeable unless he is smiling and he will lose the expression off his face and his eyes will role to one side and the arm from that side will send a quick jerk, kind of like a tremble. Sometimes they become a more troublesome seizure where a body part won't stop jerking and the longest one since we've been on the Neurology floor has been 16 minutes.

Today has been a good day for Tommaso. No seizures today. Well, I counted 4 very small jerks, but no dramatic ones that lasted a long time and needed to be treated.

Tonight, I'm sitting at home with Stefano, his big brother who is letting me help him place some Batman stickers in his sticker book. I love this time with him. Time could stop forever.

Robert, my husband, was kind enough to give me a couple of hours with Stefano. He is staying with Tommaso at the hospital right now. He is feeding him and putting him to sleep and giving him his evening meds. Thank God for his support. It's stressful for him too. It's stressful on all of us. Our family is separated right now, but our strength keeps us together. We have our good days and our low days but we strive every day together.