Flag Football

When Carson was a baby I remember Brian telling me how excited he was that he had a son that could play football, just like he did. Looking at our tiny guy I thought he was out of his mind and I would fight that battle when the time came. Soccer, baseball, or golf sounded so much safer, and I hoped I could convince Carson that they would be so much more fun.

How the years have flown by! Carson is a tough, fast, five year old who has had his heart set on football since the day his cousin Austin started playing. And we live in Texas, the football capital of the universe (ever seen Friday Night Lights?? It REALLY is like that here!), so, what chance did I ever really have?? We have compromised with no-contact, flag football, so I am praying Carson's bones stay intact.... Practice and games are held on Saturdays, which is wonderful because we don't have to rush on the week nights to make it.

I have so much to learn! I know NOTHING about football, plays, or positions, but I at least know what direction the teams should run with the ball. And I know that when Carson grabbed the flag off the kid with the ball, it was a good thing. He did too!!

I think his favorite part of football so far is the mouth piece; he felt so cool! Look how red he got from running around:

Misdiagnosis

It's NOT Infantile Spasms.

Are we thankful we got another opinion after this guy told us that it was Infantile Spasms, despite having the data to back it up? Absolutely!

Are we celebrating? Unfortunately, no.

Yesterday was a long one. We were scheduled to be admitted at 11:00am. At 10:30am we were driving to the hospital when we received a call saying they were on "orange status" meaning there were no available beds and that we would have to come the following day. I explained that we were already on our way, and that Brian and I had both taken off of work. After they made some phone calls, we were told that they would make room, but nothing would be available until 2:00pm.

My mom is watching Carson while we are in the hospital, and planned to go to the zoo, so we decided to join them while we passed the time. I am so glad we started the day enjoying the cool weather and having a great time with the boys.

We made it to the hospital, checked in with admissions and were on our floor by 2:00pm. The room was still not ready, so we waited. Some time around 4:00pm we got in our room. Deacon was so exhausted from the busy day, we were hoping he would sleep through the electrode placement. I think he was too exhausted from our busy morning and being messed with was the last thing he wanted, especially since it took over an hour for all of the wires to be attached with the extra strength glue that was used. He cried pretty much the entire hour we held him in place.

After he was wrapped securely he tried to sleep, but just could not get comfortable with the wires, and people coming in taking stats and asking questions. His huge metal crib (really?? a metal crib for kids with seizures??) shook loudly every time he rolled around making it even more difficult, and couldn't snuggle with blankets like he usually does because they need to see all of him on the video camera. To add to our luck, he also has what seems like a cold, and has been running a low fever with runny nose and cough.

He was finally about to dose off at close to 10pm when the nurses came in to draw blood and put in an iv. By that point I was drained too, and cried along with him as we held him down AGAIN to fill up 6 viles of blood and insert the iv.

Brian and I slept on the full size pull-out couch along with Deacon, who stayed on top of the covers and in full view of the camera at all times. lol

This morning we were told by the attending Neurologist that the EEG does not support the diagnosis of Infantile Spasms. They have seen 3 seizure-types since we have been here: myoclonic, atonic, and epileptic spasms. Having more seizure types make seizure control more difficult.

The information I was able to drag out of the doctor didn't sound promising. Because of the slow background on his EEG/developmental delays, it rules out the better end of the spectrum for myoclonic epilepsy. The doctors don't know what exactly it is, or the cause, because it isn't "classic" symptoms for types they have in mind, and we were even told that there is a chance we may never get a clear cut diagnosis and that at any time new seizure types could come and diagnosis could change.

They have sent the bloodwork off for more B12 testing, that we should get today or soon after, and genetic testing that will take about 30 days. So, we are continue to wait for answers. I have done a little research online and read some terrible prognosis, up to severe dementia requiring institutionalization and have forced myself to stop.

We went to an amazing service at church on Sunday and this verse has been running through my head since:

Have faith in God. Truly, I say to you, whoever says to this mountain, 'Be taken up and thrown into the sea,’ and does not doubt in his heart, but believes that what he says will come to pass, it will be done for him. Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours. Mark 11:22-24

Our pastor summarized with: Don't tell God about the mountains in your life, tell those mountains about God.

So that is what we are doing. God has already tackled the Infantile Spasm diagnosis, now we are praying for another dose of bad news to be shot down by Him.

Deacon Update

Medical updates:

1) Labwork: The doctor called with results from the Methymalonic Acid Test, which gives a better indication of his B12 level. The highest end of the normal range is at 318, his was 321.

Guess what this means??

Inconclusive... What the heck! Can we not get a straight forward result for ANYTHING!?!

She spoke with the Geneticist again and they said abnormal usually is in the 1,000's, so they don't think it is the cause for the seizures. But, they want to do the test again.

2) 24 hour EEG: On the bright side, the hospital called yesterday and there was a cancellation, so they are now able to admit him a WEEK early for his 24 hour EEG. A week may not sound like much, but I could possibly be THE most impatient person in the entire world, so 168 hours sooner is fantastic! Not only that, but I am a teacher and the other dates we had scheduled fell on TAKS (state standardized test), and those are the worst days to miss.

We will also get his labwork re-done while admitted and b/c we will be in-patients, the hospital does the labs themselves, getting us the results much sooner.

Deacon updates:

Deacon has been in a great mood these past few weeks with lots of smiling, and some laughing and eye contact too. His coordination has grown leaps and bounds. He stumbles very little now and has improved at getting around obstacles.

I am trying to be an optimist in all this, but don't want to paint a false picture of how everything is effecting him.

You know how babies faces light up when they hear or see their parents? We very rarely get that. Most of the time there is no recognition in his eyes when he looks at us. It is like he is seeing us for the first time every day. He will wander around our house aimlessly and doesn't seem to notice or care whether or not we are there with him. He will let us hold him as long as we like, but doesn't initiate contact. He turns his head when we lean in to kiss him.

It is hard to see some of the milestones he previously hit disappear. Deacon was saying "mama", "dada", and "bubba" at 5 months and now is at least starting to be vocal again, but will mostly hum or make an "a" sound. He is still having trouble holding his bottle while upright, and wants nothing to do with a sippy cup (I have an upcoming blog dedicated to this topic alone).

The medicine has greatly reduced the spasms, but they are still happening up to about 10 times a day. Half the time he catches himself before he falls, but the other half he doesn't. He has constant cuts, bumps, and bruises on his face. Because of this we are looking into getting him a helmet. I know it sounds so terrible on my part as a parent, but I have really been delaying getting him one. Everyone who knows about his medical issues and then meet him are so surprised on how "normal" he looks. I don't want that to change. I don't want him to look "different." I don't want kids at the daycare to stare at him or ask Carson what is wrong with his brother. But, it is getting to be a safety issue, and I will choose that over something as stupid as vanity any day. And, he would wear it mostly just at daycare, where he typically gets injured more often because of the amount of cribs in his room to be bumped into.

Some days all of this can be a little tough to swallow.

But other days we catch a glimmer. The recognition. A laugh. Leaning his forehead against us as we kiss him. Snuggling tighter or laying his head on our shoulder when we hold him. That is what we are fighting so hard for. He is in there and he is relying on us to find an answer.

Deacon's Labwork

I left a message with Deacon's Epileptologist this afternoon to see if anything had come back regarding his labwork. A couple of hours later the doctor called with some of the results.

His Organic Acid level was elevated. Normal level ranges from 0-6; his was 14. She said that this is the second time he has had this test, the first time it came back at the top of the normal range of a 6. The high level indicates a metabolic issue that causes an enzyme deficiency preventing him from absorbing the vitamin his B12. This very well could be the culprit for the seizures and developmental delays.

Our doctor said that labwork could have errors from a number of things, for example the length of time it took for it to be processed or the sample drawn, so wanted us to get more testing done to check the validity of the results. We went TODAY for more bloodwork and the lab told us it will take 3-5 business days to hear back.

We are praying the deficiency is the cause. If so, we will be referred to a Geneticist and Deacon will be given something either to help him absorb the B12, or injections of the vitamin itself. This could mean that his struggles with Infantile Spasms may disappear!

I am trying not to get overly excited because I know that the results could come back with no metabolic connection or that this could mean a whole other set of issues. But I am hopeful that this could be the answers to our prayers.

ECI Update

While we wait for Deacon's 24 hour EEG (scheduled April 4th), we are definitely utilizing his Early Childhood Intervention services! The picture above shows some of the goodies they have given us for Deacon to use. The item around his neck is called a chewy tube and is basically a baby chew toy to keep him from gnawing on his clothes while he is teething. On his hands are thumb splints. One of the things we have learned is that many children with neurological issues have a habit of tucking their thumbs inside their fists, which interferes with fine motor skills like pinching and grasping items. The splints keep him from tucking his thumbs in, but allow him to hold stuff. He is supposed to wear these at least 8 hours a day, but he actually likes them (he must think they are another item to chew on, and with 2 new teeth arriving this week they have come in handy). We have already seen improvement in him holding cookies and his bottle.

Deacon's newest service, Vision, is provided by our school district, but they keep in close contact with ECI. We were given district enrollment paperwork and it feels so strange to be filling it out for our 1 year old, instead of our 5 year old!

I have heard fabulous things about his VI teacher, who services some children at Deacon's daycare, including the directors grandson. She already knew who Deacon was, and has peeked in on him a couple of times before he was officially added to her caseload. Last week she did her formal observation and sent me an email about her first impressions:

Wanted to let you know that I worked with Mr. Deacon this morning. First of all, he is so precious! I worked with him in the "barn" and noticed some great things. I will, of course, write up a report that I will send to you, but wanted to give you some quick things that I noticed. First, I noticed that peripheral vision on left side seems somewhat delayed which could account for the bumps on the head most often on that side. [It amazes me that she said the same thing the neurologist told us about the spasms happening in the right side of the occipital lobe, where left vision is effected.]

Next, he appeared to be most interested in toys with lights when the overhead lights were off. In this unfamiliar environment of "the barn" he was not quite as willing to walk around like in his familiar classroom. That's okay and can work towards his benefit. Since he's not sure of new environments, this behavior will keep him safe....that smart boy has figured that out.

Also, I noticed a sudden "drop down" where he was standing and got on almost all fours in a very quick motion. I don't feel like this is balance, but him trying to figure out where he is in space and feeling most comfortable with this constant contact (think of being on a cliff and looking over, you would drop to all fours to keep a better sense of where you are...I'll explain this one in person).

When she called, she said that Cortical Visual Impairment is a spectrum and he appears to be on the better end, especially in that he is walking and many kids with this don't. She also told us that with intervention other parts of his brain can learn to compensate for his vision and we will see a big improvement.

She will also be referring Deacon to the Orientation and Mobility Specialist, who helps Deacon learn to move around safely. If he qualifies, he will be up to FOUR visitors each week! I can't even begin to say how completely grateful we have been to this program and the information and suggestions they have given us already.

Ladies & Lil Gents

Although our blog may appear like Carson has disappeared, I assure you he has not. :) To be perfectly honest, I don't know what I would do without him. I really believe that I would be institutionalised from the stress surrounding Deacon's future, if I didn't need to be strong for Carson. God plans accordingly for these types of things. I have no doubt that this is one of the millions of reasons God gave Carson to us: so that this momma didn't lose her mind when times get tough, because baths still need to be given, lunches need to be made, and laughter needs to be heard.

Last weekend Carson and I had a date that rocked, and we are still laughing about the fun we had.

Our city held a "Ladies & Lil Gents" dinner for moms and sons. My friend, Care (I put a link to her blog in hopes that she decides to EVER update it...) had posted on her facebook that she was going, and it looked like so much fun, I decided to get Carson and I tickets at the last minute too!


It was a western theme this year, and you would think that b/c we live in Texas, we should just have boots and cowboy hats sitting in our closet waiting to be worn...well think again. We improvised with what we had (ie. I wore a dress, and Carson had a button-down with cargo shorts and flip flops...).

Not only did the event have dinner and a dj, they also had a TON of activities geared towards the little guys! The frame pictured above was actually built by us!

They had a huge haystack filled with prizes to be found:

Carson dug up a sheriff's badge:

Popping balloons to find what team they were on for the next game:

...followed by a relay race around haystacks in cowboy attire:

and Limbo:

Carson's favorite activity was dancing!! From the moment we walked in the door, he was getting his groove on! And he has got some moves, too!

He was such a gentleman all night long and even opened doors for me! When we left he said that was the best date ever! (I will remind him of this when he is 16...)

2nd Opinion

What a difference a doctor makes! We didn't find out news that was any more optimistic, but we at least felt heard, informed, and not rushed.

Our new Epileptologist gave us insight on the reasoning behind decisions that have been made, and also had some completely different answers to some of our questions than the previous Epileptologist did.

First, they aren't 100% sure that it is Infantile Spasms. They appear to be because of the way his body startles when he has one, and the multi-focal spikes on the EEG, but they have not caught an actual spasm on the EEG. (We didn't even know this!) The muli-focal spikes are how his brain normally looks when not having the spasms (a pattern for "normal" brains are just waves, not the spikes). But, spasms typically come in clusters, not single spasms like he has, and usually show hypsarrhythmia on the EEG, which his hasn't (maybe b/c they haven't caught a spasm on the EEG??). She said that if it is Infantile Spasms, it isn't a typical case, and doesn't necessarily mean better or worse news...

If it isn't IS, it may be Myoclonic Seizures/Epilepsy, which from what she said, seems to have a similar prognosis as Infantile Spasms. She said the seizure's outward appearance is very similar to to IS, but the EEG looks different. (I tried to do research on this, but there are so many different types, it is hard to find definitive information for the general term...)

So, as of now, our main goal is to get a definite diagnosis from an EEG that actually catches a spasm in action. To do this, they will admit Deacon into the hospital for an EEG lasting 24 hours. It looks like the first opening they have is in April, but they will call this week to confirm a definite date.

Depending on the diagnosis, we will address treatment options. The reason they did not immediately put him on ACTH, is b/c of the absence of the hypsarrhythmia (hyps). She said it is protocol to use that only when hyps are present due to the small success rate in cases w/ no hyps compared to the terrible side effects from using the medicine. (Could the other dr. not have told us this??) For now, she is comfortable with the Topamax prescription we are on, and agrees with the increase in dosage.

She also ordered more labwork to be completed to look at his metabolism and make sure it is working properly; Quest told us it takes 4-6 weeks to get these results, as well as 6-8 weeks to get the genetic results we already had done.

The Epileptologist gave us more information on treatment options. She said about 33% of people with epilepsy do not respond to medication, and usually after 3 different medications are tried with no seizure elimination, the success rate is about 1% for additional prescription trials. Because Deacon took such a small dosage of the Keppra, she said that won't count as a trial, so the Topamax he is on now will be considered his first.

If we get to the point where we have tried 3 prescriptions that don't work, we will then discuss brain surgery. The majority of this problems are coming from the right part of the occipital lobe, so brain surgery would most likely entail removing that part of the brain. The removal would cause his left vision to be eliminated (right side of brain controls left side of body). Both eyes would still work, but he would have no vision in the left direction. The other 2nd-line treatment option for the seizures is the Ketogenic Diet (very similar to Adkins, but everything must be measured, weighed, and there is NO cheating for it to work). This is basically the last resort, if all else fails. It has a decent success rate, but is hard to follow, especially in small children due to no flexibility in meal options.

We already feel much better to be working with someone who is on the same page as us, and Deacon liked her too! Our next appointment with her depends completely on the results from all of the tests we have coming in.