We just got back from our 1st family vacation in the mountains. It was a nice, long, relaxing week for all of us. During the weeks, possibly months, prior to our vaca, we noticed something in our little guy, but honestly, didn’t really think too much of it. In fact, I recall my mom mentioning it to me while on vacation and I told her that it was something Graham did. I write this and question myself. Something my son ‘just did’? Sounds a little crazy, I know, but it’s true.
They were like little startles. Ever so tiny jerks. At first, I (we) did think he was being startled and/or scared easily. They started out very infrequent and increased over time. I am not a hypochondriac (like some peeps in my family, not mentioning any names, but you know who you are - LOL). I wouldn’t consider myself the polar opposite of that either. I lay somewhere in the middle…questioning things, but typically not over reacting. I have to admit, it is very easy to over react when dealing with a medical concern for your child though!
We got home that Sunday afternoon, June 17th. The usual, unpack, get everyone ready for the week (work week, that is). Business as usual! Monday morning, I was getting ready for work and had Graham in the walker in our bathroom. Out of nowhere I saw him fling his head forward and hit the tray in front of him (connected to the walker). Thankfully he had his helmet on, so I don’t think it hurt him in any way, but it definitely scared him. And me. I made a mental note to be extra careful watching Graham to see if I noticed any other abnormal behavior.
The next morning, Nina, our OT, came over for her usual visit with G and grandma. While there, Nina noticed Graham do the head drop several times and called me at work. She said she didn’t know as she wasn’t a doctor, but thought G could be having seizures. Seizures? Say whaaa? Ummmm….that was not a word that even entered our vocabulary, much less our minds. How on earth could this be seizures? Trying not to get too carried away, I called our pediatrician and got an appointment the next morning.
And then I sent out the following email to a few very close friends…I knew I was in need of prayer…
Date: Tue, 19 Jun 2012 16:20:40 -0500
Ladies,
I am sending this to you because I look at each of you as my dear sister in Christ. At this very moment, I am fighting back tears of fear, of worry, of the unknown. My God says in Phil 4:6 'Do not be anxious about ANYTHING, but in everything by prayer and supplication WITH THANKSGIVING let your requests be made known to him' and I must hold on tight to HIS promises. For He is my rock and my fortress as the verse in Psalm 31:3 stares at me on my desk at work right now. I am in need of these reminders...
We have noticed a couple things with Graham lately and we do not know what is going on. Our OT came over today and suspects it could be seizures, but she doesn't know. I am taking G to our pediatrician in the morning. I contacted the DS clinic downtown and they told me that children with DS are prone to infantile spasms (seizures), told me to see our ped and to have an EEG or be referred to a neurologist. At this point there are so many unknowns and I am trying NOT to worry, but my heart is starting to hurt.
So, I am asking each of you to please lift up our little guy to our Lord who is the able to do ALL things. Pray for good health, for healing of whatever it is going on with Graham, pray for wisdom for the doctors to know what is going on and next steps. Pray for peace for me and Scott - knowing God has control.
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Dr. Agolia was his usual-proactive, attentive self. This, I can say, are extremely important characteristics for your children’s doctor! He had already called and got us set up for an EEG the following day (Thursday) at St. John's Mercy Hospital. Scott took G for the appointment and we were able to see the pediatric neurologist, Dr. Steven Rothman, the following day (Friday).
All on the eve of Graham’s 1st birthday...(thank goodness for my sister-in-law, Heather, who was able to step in and make sure nothing slipped thru the cracks with all the set up for G’s party). She was a life-saver, seriously!
This was the verse on my mind that day…
"Give thanks in ALL circumstances"....just came to my mind. I think God is trying to tell me something - isn't He always teaching us something? Yes, I will give thanks, I will give praise...
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My email below sums up the update:
On Jun 25, 2012, at 10:14 AM, "Georgia Damalas Snodgrass"
Good morning everyone.
Sorry I did not respond sooner, but this weekend was NOT about tears, sadness or fears - this weekend was ALL ABOUT GRAHAM! And celebrating this little guy's 1 year birthday! And celebrate, we did!
We have been thru a LOT over the course of this past year. Graham has taught us so many things - we have laughed, we have cried and we have loved ever so deeply. Each day, we are in awe of him. And, I know we are his parents, but seriously, Scott and I just can't get over how cute that little boy is!
We have been blessed with a very healthy boy for most of his life, thus far. There are many medical issues/concerns that are typical with children with Down syndrome and we need to give thanks for the many things that did NOT happen to Graham.
But, we also always knew he was never out of the woods - there is always something that could happen (just like something could happen to anyone of us).
Friday morning, we went to the neurologist for a follow up to Graham's EEG and he confirmed Graham is in fact having seizures (infantile spasms). As you can imagine, this is not easy news for a parent to hear. But, there is some comfort in "knowing" so that we can try to be proactive going forward. Was there any damage? We do not know. What we do know is that seizures tend to cause developmental delays. Since Graham has DS, we know he will have developmental delays, so we will never really know if the current delays he is having is due to DS, the seizures or a combination of both.
The doctor gave us two options. One, was to put G on an anti-seizure medicine (that he could possibly be on the rest of his life). Two, try a round of steroids (very high level) which has been shown in some studies to stop the seizures all-together. We jumped on #2. Started the meds Friday afternoon - no need to delay any longer. The steroids can make him irritable, gain weight, and not sleep well (all of what one might think of a typical steroid). We have definitely seen an increase in appetite in just a couple days! I asked the doc how in the world can 1 drug taken for 2-3 weeks stop seizures permanently. He said that was a very good question, but the truth is no one really knows. Just like no one really knows why seizures occur. There are many theories out there, but nothing totally concrete. It's one of those medical unknowns.
God is constantly reminding the Snodgrass household that HE is in control and we are not! He continues to give us just enough grace to get thru each day. In our struggles, He is teaching us to lean on Him more & that we canNOT do this on our own accord. We do feel His strength and we know He is watching over us.
Please pray with us that the steroids WILL cease the seizures. There is power in prayer!
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After a week on prednisolone, we informed the neurologist that the spasms had decreased significantly (approx. 6-7/day that we were noticing) from where they were before (approx. 6-7/hr), although still present. The dr. stated some kids do not respond as well to the 1st round (3.3 mls 4x/day) and had us double the (6.6 mls 3x/day) dosage. Trying not to be in fear of the 'what ifs', we did not see G have any seizures after a few days. PRAISE GOD! That truly is a blessing!!!
After another week, we started the weaning from the steroids – it was a 15 day process.
We continued to keep a close eye on Graham. We continued to pray for God's favor.
Like I mentioned before, studies have shown this drug to cease seizures permanently in children. But, there have also been cases of seizures ceasing for a time period and then re-appearing. Every child is different. I am 'trying' very hard NOT to go there in my head. To be thankful for today and the blessings God has given us. You guessed it - WAY easier said than done!
So, again, we grow and we learn from our God - - - that our children are a gift, that we have no control (ultimately) of their lives or their future. That God does know how this story continues to unfold, although we have no idea. We hold tight to the fact that our God will never leave us nor forsake us, He is with us always. Can NOT imagine living life any other way.
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Right in the middle of all this was 4th of July. We made the best of it and Scott was a trooper! Our day wasn’t your typical ‘family’ day as we were a little separated. With Graham being on such heavy doses of steroids, me & Scott had to tag team (G couldn’t be in the sun while on the medication & our heat this summer has been a bit unbearable! 100’s is definitely unbearable!) Additionally, the meds suppress his immune system, so we have been more selective on where we bring him (especially where there are lots of people and possibly lots of germs). Writing this now, after the fact….the 4th seems a bit of a blur…
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At this point, beginning of July, things were looking pretty good for our little man. No signs of spasms, but...(I hate it when there's a but), but there is here...
We started noticing something different than before - something that to us, appeared to look like a seizure. It started settle with his eyes rolling every once in a while. Then, by Thursday, July 11th, the episodes started to occur about every 60 seconds. Scott took G to the ER. I was rushing home from a business trip in KC and met them at Mercy – where we spent the night. We started an anti-seizure medication immediately, Kepra. After doing another follow up EEG the following morning, the neurologist that had been treating Graham, said the EEG was clean, discontinued our use of the meds and told us it was behavioral. We asked what he wanted us to do and he said to follow up with him in 2-3 months. In our gut, it just didn't feel right. We asked if he would assist us in getting a 2nd opinion (something that is probably a little hard for dr's to hear, but necessary). He called Children's Hospital and we were able to get G looked at the following Tuesday (July 17th). Let me just preface by saying we were currently already working on trying to get into Children's for a 2nd opinion since it is one of the top children's hospitals out there. When we called, they said their next opening was April of 2013! So, we were extremely thankful to get in so soon!
We had another EEG - reviewing the EEG (somewhat quickly) they didn't notice any signs of seizures. The told us to continue the weaning of the steroid. Would schedule an MRI to rule out anything else (although they expect it to be normal), but did want another neurologist to thoroughly review all EEG's (Graham has now had 4). They also said that sometimes they do not have all the answers. While I appreciated the honesty, I really wanted some answers.
After further review, the nueros stated that they did see some change in the EEG when Graham has his "episode/spasm". Because of this, they believe that Graham IS in fact having some type of seizure. They do not know if it is IS (infantile spasms) or another type of seizure. They scheduled us for a 24 hour EEG to look deeper. Additionally, they still want us to do the MRI due to a light test they do with the EEG - in which, one side of Graham's brain responded normal and the other did not.
In the interim, we got started on another anti-seizure medication, Topomax. The doctors feel pretty confident that we caught this in time to get a handle of it. That is comforting to hear and I pray they are correct.
As you can imagine, Scott and I are emotionally DRAINED at this point. Seeking wisdom. And especially healing for our Graham.
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Encouraging news was on its way…
After a long 24 hour EEG, the neurologists at Children's Hospital were able to confirm Graham had infantile spasms, but is NOT currently having seizures. That really was encouraging news. We opted to keep him on a low dose of the anti-seizure medication as preventative measure to ensure the spasms do not return and to hopefully prevent any seizures in the future (by reading the EEG, the doctors could tell that G is prone to having seizures – he has an abnormal reading).
Additionally, we had an MRI on Monday, August 6th. They had to sedate him – it was a bit scary, but we knew he was in good hands.
More encouraging news…
The MRI came back clean! The doctor said the brain is made up of white matter and grey matter that is clearly defined against each other. When someone experiences seizures, the grey and white matter can become intermixed – which is not a good thing. In these cases, the doctors sometimes perform surgery to remove that part. But, no signs of this for our boy! Praise God!
At this point we decide to wean Graham from the Topomax as he is having a very difficult time taking liquids (one of the many side effects from the drug). It will take 3 weeks to wean him! And we had to start Kepra (a different anti-seizure) medication as well. The thought is we will follow up with an EEG in 6-12 months and if all continues to look good, then G can come off the meds permanently. Oh how I hope and pray that happens. We hate giving him meds every day. Scott even commented that he feels like he’s poisoning Graham when he gives him these medications. I can relate. It’s not something you want to do as a parent. But, you have to consider the alternative as well. And none of us want the seizures to return. So, prayerfully, this will be only for a time…
And even more encouraging news…
Graham’s “episodes” are becoming fewer and fewer all the time. While we do not know and possibly will never know what that exactly was, we are thankful to see them going away. And may explore additional tests in the future, but taking it one day at a time right now.
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But, there is still one thing we had to address. One 'tiny" thing (or was it really so tiny after all?) that was taking it's toll on us in a "BIG" way...
When we were @ Children’s hospital for the 24 hour EEG, they took routine blood work to check G’s levels due to the meds. His white blood count was low. 3.3 to be exact. 5 and above is considered ‘normal range’. At first the docs asked us if Graham was recently ill, had a fever, etc. We said no and asked why, that’s when they told us about his blood work. Scott mentioned the high dose of recent steroids. While they were not for certain, they thought that was probably the case, but informed us to follow up in 2 weeks with another test.
I called our pediatrician, Dr. Agolia about the blood work. He asked us to come in for a visit to get up to speed. We met him on that Wed, August 1st. He got us the script for the blood work. It was nice to talk with him. We feel very blessed to have a doctor that cares and is proactive about getting things done!
Scott took G in to draw the blood on the following Wed, August 8th. He said it was hard. The tech had a difficult time finding a vein. Our cute little boy is a bit like the Michelin tire boy – round and plumpy and those veins are buried in there! His one good vein was punctured due to the recent MRI and having to give him an IV. Ugh, I hate thinking about it. But, they got it done. Thank goodness.
We got the results back late Friday, August 10th and his count went down even further. 2.6. Huh? Definitely not what anyone expected to happen. Dr. Agolia called Children’s hospital to verify the original blood count. He didn’t want to speculate & gave us a referral to a hematologist to do further testing. We set an appointment for Friday, August 17th with Dr. Hanson @ Mercy Hospital.
So, once again we wait.
We wait to get an appointment.
We wait for additional tests.
We wait for results from those tests.
We wait for a follow up consultation.
We wait for the next steps.
We do have Graham’s annual appointment with the Down Syndrome Center a little later this month, on Tuesday, August 28th. This is a routine appointment to keep a close eye on things that can be areas of concern for children with DS (such as his heart, he will have an EKG, eyes, ears, thyroid). We will also speak with the geneticist. And now I am reminded of how thankful I am to live in a city, a country with such amazing resources all within a short drive away. Yes, even in the midst of trials, there is always something to be thankful for.
Is it even possible the news can get any better???…
Well, yes, it can!
I leave work early to go home and pick up out little guy to meet Scott at the hospital. We weren’t in the “official” hospital. We were in a section behind the main office. The cancer building, to be exact. Ugh… That is not a place you want to go to. Ever. But, here we were. I keep a smile on my face and positive thoughts on my mind. Our Lord is in control. I know this. I continue to repeat it to myself in my head. Scott, has no idea. He is nervous, that I know. So I try to make small talk on other things. We get to the area – it was so cute. Yes, that probably seems strange, but it’s the truth. A lot of children go here for their cancer treatments and it was a breath of fresh air to see the area decorated so well. Fun things for kids to do in various places. Cool pictures of Cardinal players on the walls. Definitely not your typical boring looking hospital waiting room.
Dr. Hanson walks in and asks us to tell him about Graham, to tell him why we were there. I look at Scott and ask him to “go”. He proceeded with saying G was born a little over a year ago with Down syndrome. Immediately, the dr. said, “I know, I could tell.” Scott and I both just kinda look at each other. And then the dr. said he also has a daughter with DS, she’s 13. Said he feels he has a knack for noticing others with DS. To that, we smile. I think Scott’s blood pressure just dropped about 20 points too. ;)
Dr. Hanson asked lots of questions about our little guy. He was so interested in Graham. We discussed many things – not just the issue at hand. It was one of those little miracles from God. Giving us the comfort we needed at that exact time. I mean seriously, what are the odds of that? I can tell you, they are slim to nil!
The dr. said he would take some more blood and call us a little later with the results. Huh? Later today? You mean to tell us we DON’T have to wait until Monday for results? Scott mentions to the dr. that almost all of our appointments have been on Fridays and we have had many waiting periods in the past couple months and quite honestly, expected no less today.
Not only would the doctor take the count levels, but would do what they call a smear and be able to closely look at the cells themselves. He would be able to tell if there were pre-cancerous cells.
After a very nice, long talk with the doctor. We leave. Within about 30 minutes, Scott got the call. His heart hurt for a moment. This is a call that could change the course of time, change life as we know it in a very dramatic way.
“Graham’s white blood count went up significantly and there are no signs for pre-cancerous cells”.
And we praise the one and only responsible for this. The one and only responsible for everything. Thank you Jesus. Our cry is that we never, not ever, forget this day and the favor our Lord has given us.
And the cloud has cleared an opening in the sky, the weight on our shoulders has been lifted, the worry in our hearts has been replaced with joy. And all this happened from just June - August. I am smiling now as I write this and it's a good feeling to say that...
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