Weekend stuff

Seizures are weird now-a-days. Just months ago, seizures were only prevalent after waking up from sleep. Never going to sleep, never in the middle of the day, just coming out of sleep. They came in the form of clusters, always.

Now it seems as though sleeping has nothing to do with it. The clusters of seizures are few and far between ( other than this morning, he went a week without a middle of the night cluster) but now his day is filled with single spasms. One at a time, randomly throughout the day. I mean its the exact opposite of seizures just months ago. I Just don't get it

And besides that, we now know he has the potential to have many seizure types such as Grand Mal, Tonic, and drop seizures along with the Infantile spasms. Always fun having those looming around in the back of your mind. Hoping and praying you never see one of those again.

I say this to say, that when we talk about his case that was conferenced about at UAB this coming Tuesday I hope we get some solid answers. Solid hardcore answers like will he be a candidate for brain surgery. None of this wishy washy stuff. I want black and white, yes and no answers.

Now to change gears a little, just wanted to talk briefly about some of the new stuff Dawson is doing ( good and bad )

We have found that Dawson loves talking on the phone. If you call our house or cell, be prepared to have a conversation with Dawson on the phone. He can carry on a decent conversation as long as you are the one asking all the questions. ( this is good)

Dawson loves Fruit Loops in a bowl so he can dump them out and then eat them off the couch like a chicken pecking the ground for food ( this falls under the bad category)

He has also learned how to drink soda straight from the can ( usually without spilling it) Pretty impressive huh?? ( once again, good category)

He has started putting his shirt in his mouth and sucking on it until it is completely soaked.
( yuk, and bad )

And calling the dogs by name is a pretty new trick. He can call Lucy, and for Sophie he says
"Lufie"

So despite numerous seizures, and behavior problems, ( which are a little better for now) we still have some good things happening for us over here. And we are truly thankful!!

Love to all

Jeff and Allison

Upcoming stuff and the last few days

The past couple of days have been pretty good. Seizures down in numbers and we have continued to see " the old Dawson" shine through. Today and this evening have been kinda iffy though. He had lots of single seizures today and plenty of fussiness to go with them. The longer it goes the more it appears that he CAN feel the seizures coming on, and whatever is going on in his brain prior to a seizure.... Well it just doesn't seem to like it at all. Can't say I can blame him.

Developmentally were still doing really good. His biggest area of opportunity is of course speech. Speaking of which, we have a Neuro visit this coming Tuesday and while there, I think the plan is to do an EEG and then we will be meeting with the Speech Therapist to do a complete work up and get a game plan together.

Dawson's case was supposed to be discussed with the big wigs at UAB hospital yesterday. Neurologist and Neuro surgeons both were to discuss the findings of his most recent PET scan, MRI, and 8 day VEEG. We have not heard anything back from his Neuro on this yet and she may be waiting until she sees us on Tuesday to discuss the findings. I hate to wait any longer than necessary but it seems plausible that it should be a face to face kind of conversation I guess.

Thats about it for us. Hanging in there and like I said earlier, very relieved to see Dawson running around and playing again.

Thanks as always for your thoughts and prayers for us

Jeff and Allison

Answered prayers

Just a quickie update about answered prayers. This afternoon, evening, and tonight we got our Dawson back. He has been super happy,running around the house playing with Madison, pulling the puppy's tail, walking around with a laundry basket on his head, and talking on the phone to whoever calls us. There have been no outburst and this is a testament to answered prayers.

We are so glad to see him HAPPY!!!!

We are so thankful to those who specifically prayed about this issue. We needed this break. We needed to see Dawson's wonderful personality again because we really have felt like we were losing him to the seizure monster.

Thank you God for these wonderful moments with Dawson tonight

Jeff and Allison

Stress

This weekend was a little rough. Seizures were better but his mood was not. He was really clingy and on edge all weekend. He basically wanted to snuggle with me all weekend, which makes it super difficult and super stressful for me. Don't get me wrong, I love to snuggle on the couch with my little man, but snuggling doesn't get the laundry done, or the dishes clean, or supper cooked, or the house picked up...all the mommy/wifey things that need to be taken care of. His fussy outburst and crying jags are really starting to wear on me. I try to be strong and pretend everything is okay, but my stress level is about maxed out!!! I miss my happy little boy!!! Don't get me wrong here either....he does have happy, playful moments, just not like he used to, or maybe its just that the fussy moments overshadow the happy ones right now...

T.G.I.F

Whew what a week!! It seems at though we have been running at 120 mph this week and are hoping for a restful weekend. My oldest two will be home this weekend and so 2 kids become 4 and the reality of a restful weekend is honestly just wishful thinking. I wouldn't trade it for anything though!!!

Just a quick update as things around here are still about the same.

Fevers are gone but snotty noses, sniffles, and coughs echo throughout the house. Dawson, Madison, and Allison all got their hair did this week ( pics coming soon.)

Seizures are definitely better this week compared to last so maybe the Zonegran is starting to prove itself useful. He had his first increase two days ago ( Deb, we are giving it to him at bedtime) and although he is still having seizures, number wise, they are much improved ( heading in the right direction we pray)

Mood wise is following suit with the seizures. Don't know if its because when we went up on the Zonegran, we went down on the Keppra ,or possibly fewer seizures = fewer outburst. They are also known as " freak out sessions" " going off the deep end" " having a come apart" and
" flipping out." Either way, his mood is better and that in itself is a blessing from God.

We have also noticed that some of these episodes come on so fast its almost like he is in pain, such as tummy pain or gas pains. We have started to give him some stuff for that and although its too early to tell, it seems to be helping too.

So I thank you God for this past week, and I pray for continued healing in my son's body.

We wish you all a great weekend

Our love to you

Jeff and Allison

More of the same and jumping around

The past few days have brought little changes. I guess in some ways that is good, and in other ways..... well, not so good.

seizures and mood have not changed any, and tomorrow will be his first decrease in Keppra. Kinda looking forward to seeing what mood changes will come from decreasing. One minute he is completely fine. Laughing, spinning in circles, having the best time ,and literally one Milli second later, he is in some kind of raging, body flinging, cup throwing, screaming, biting, fit. We have all grown kinda weary of this and its been a concern of mine for a while. My prayer is that God will intervene and sooth whatever is causing him to do this.

On a more positive note, we have been working with him on jumping for a couple of weeks now. He would squat way down and go through the jumping motion, but his feet would never actually leave the ground. Last night something must have clicked because he was jumping around like a little Mexican jumping bean with both feet leaving the floor. This is a developmental milestone and anybody who knows us knows we celebrate and brag about each and every one he reaches.

So, way to go Dawson!! I hope you continue to jump like a frog my little man!!

That's about it for us, Madison has been under the weather today with some crud and fever so I took off work and got to hang out with my littlest of princesses today. I enjoy my job, but I love hanging out with her better!!

Keep the prayers coming. God has been, and continues to be SO good to us.

Our love to each of you

Jeff and Allison

Start of Zonegran

The scary thing about starting a new drug is that you never know what your going to get as far as how well its going to work and the side effects of it. Dawson started Zonegran a few days ago and were watching him closely to see if its having any effects. I know, I know, its WAY to early in the ball game and his starting dose is very low to tell any difference.. But were watching him closely anyway.. Were weird like that I guess.

So far, no change in seizures. Still having a cluster at some point in time during night time sleep and the rest of the day he has a fussy clingy period followed by a single spasms like seizure. He is having about 6-10 daytime seizures. I am so tired of these things. The seizure itself is very brief but all the crap leading up to the seizure can last 30 min to an hour. If you do that math, that leaves little time for him to be down running around playing and just being a kid. It seems like this month we are loosing more and more of that precious time with him to fussy seizure/med stuff.

I can tell already that the Zonegran seems to be making him sleepy, which in turn, also makes him fussy. He is napping more and longer than usual and I'm sure that once we get titrated up and he gets used to it,that will subside right??? somebody please tell me it will... Lie to me if you have to because we hate seeing Dawson this way. We have a few days left before we make the first decrease in his Keppra ( which hopefully will help some too)

Hopefully tomorrow will be a little better than today was.

Thank you for your many prayers!

Jeff and Allison

A good day

This is how my day started this morning:

ME. " Dawson, daddy is going to work do I get a hug?"

Dawson " Uh Huh" he then walkes over and gives me a two arms around the neck hug.

Me " I love you"

Dawson " La lou"

Me " bye bye buddy"

Dawson " bye"

I know that sounds simple, but if I could start everyday like that I would be a pretty happy guy. Last night he fell asleep around 6:30 and we reluctantly went ahead and put him to bed. Figuring he would wake around 9:00 rearing to go. He did wake up about 8:30 for a cluster of seizures but then went back to sleep and slept until about 7:00 this morning. The long sleep helped put him in a good mood this morning and is still in one tonight.

Just what the Doctor ordered

Days like today help make the bad ones just a little more bearable.

We bought him a battery operated toothbrush to help with the oral fixation and to stimulate him... He likes throwing it on the ground and watching the batteries pop out. Go figure!

God bless

Jeff and Allison

Neuro visit

First of all let me take a moment to say how much I just love Dawson's Neurologist. Since day 1 she and her staff have been nothing but helpful, supportive, encouraging, and most of all they really seem to be dedicated to helping solve all of the seizure riddles. Never once, during an office visit, have we ever felt rushed, or hurried, or felt like we were just " another patient"

Today's visit was no different. She spent an hour with us in the office ( 30 min of which was after hours) Intently listened to every word we had to say and then based on her knowledge along with what were telling her, she formulates a game plan that she feels will be best for Dawson. I know there are some awesome Pediatric Neurologist out there but I gotta tell ya, It would be awfully hard to convince me that he would be better off with another Doctor. My hats off to Dr. Martina Bebin and her wonderful staff!!

Ok, now that the commercial is over let me move on to some of the visit highlights.

We are going to start weening the Keppra as she also feels that it is playing a part in some of his over the top, dramatic, mood swings. Zonegran is going to be our new drug for a while. She feels based on the info she has that this is a good fit for him as it covers all the seizure types Dawson has a history of having. I gotta tell ya, its not going to be very hard for me to say goodbye to the Keppra. Ive never liked it and really don't think it's done anything for him as far as stopping the seizures. Helping to control them?? Yes Stopping them?? NO

If you are reading this and have tried Zonegran please weigh in under the comments section. I know every drug and every child are different and the results will different for each and every one but I still would like to know what experiences are out there with Zonegran. Good or bad please let us know.

Next thing, Dawson's case, based on his last 8 day VEEG, PET scan, and MRI will be presented at conference on January 27 at UAB. They will decide, based on the evidence, what options are available to us based on this information. Im trying not to fret too much over this one. Im looking at it as one of those " it is what it is" kind of things.

We voiced some concerns about his speech today as well. Some quick background info on this because it's been a while since we have talked about him developmentally. Dawson can talk. As a matter of fact he can say many words. He just doesn't say a lot on his own, which is the concerning part. He can repeat or mimic most of what you ask him to say but we want him putting words together. He can say " more" or " juice" but we can't get him to say " more juice"

We feel that he should be doing more I guess is the point, so were wanting to attack that a bit more aggressive. We have a visit scheduled on Feb 2nd and while there, we will be doing a sleep EEG ( provided Dawson Cooperates) and then we will have a full speech evaluation done with the speech therapist on her staff.

We also talked briefly about school. We are wanting to start pre school with Dawson, but that opens some doors that I don't know if we are ready to walk through yet so we will be talking through this over the next few weeks. We feel he needs the social interaction with other kids besides his sisters, but can't just drop him off at a public pre school because they have no idea about his seizure disorder and were just not comfortable with that. On the other side of that is that he technically has no developmental delays, so were not sure if he qualifies for a " special needs" school... ??? So yeah, we just not sure what to do yet. His neuro says he will qualify based simply on his diagnosis but then again we kinda like the idea of public school for him... Now that your as confused as we are....................

So all in all, a good visit and we feel we got a lot accomplished. Were looking forward to hearing about his case at UAB and seeing what options we have, and we pray this new drug were fixing to try will stop his seizures for good!!

Thanks for checking in on Dawson and we love you

Jeff and Allison

Dawson VS. Crystal Lite Fruit Punch

Its no big secret that Dawson needs to be watched every second he is awake. We do our best to accomplish this goal but lets face it, there is no way to keep an eye on a wandering two year old every second. Its just impossible. Found out the other day that Dawson is a big fan of Crystal Lite fruit punch... Tried to tell him its better when mixed with water, but he just doesn't listen

Saturday and today have been a little rough on Dawson. Terrible outburst throughout the day and today hes having one of those days where all he really wants to do is be held by Allison accompanied by a seizure every now and again.

Please pray that during his Neuro visit tomorrow evening that God will lead his Doctor to provide the treatment that will be best for Dawson. We will let you all know how it goes when we get home tomorrow night.

Love to all

Jeff and Allison

reminder

Oh I can't belive I forgot!!! another thanks to Heather in California for the reminder..


ROOOOLLLLLLLLLL TIIDDDDDEEEEEEEEEEEEEEEEEEE !!!!!!!!!!!


Even though I almost threw up in the 3rd quarter because we looked so horrible

and again in the 4th because I thought we were gonna lose!!

Off the deep end Part 2

First and foremost, thanks for all the great comments and support regarding the instability of a two year old with seizures and those wicked meds they have to take. My heart really goes out to ALL these kids. The meds are so necessary and aren't we all thankful for them?? But sometimes I think that in some cases, the meds are worse than the seizures themselves. I KNOW that is not true, it just seems that way sometimes.

Heather THANK YOU and I plan on taking you up on your offer.

Really, thank you to all our friends out there. You continue to be there every time we need you

Dawson's mood this entire week has been so much better. Still problems, but SO much better.
Which means you all have been really praying for him. Thank you

We have an appointment with his Neuro this Monday about all this and in the meantime we have dropped his dosage of Keppra a little and it seems to be helping. I think we have his behavior problems broken down into two categories:

There is the Dawson who just wants to be snuggled up as close to mommy as possible. Does NOT want to be put down, does NOT want to be left. He constantly rubs her skin, will walk away on his own for very brief periods of time but for the most part will loose his mind if she is not holding him. I'm convinced this part of his behavior is seizure related. We might not be seeing physical seizures at the moment but you can just tell he is VERY irritated at whats going on in his brain.

Category two is the Dawson who is otherwise having a pretty good day. Playing with his sister, or playing on his own, when something goes awry. Usually very minor, but none the less he really flips out and just loses complete control of his temper. It escalates very quickly and really turns ugly!! I believe that this type of problem were having is more med/two year old related. Im not sure how to fix either one of these but maybe it makes me feel better to have them broken down like that.

Thank you God for this week. His mood/behavior has been markedly better and we even went a two day span without seeing any seizures this week. Continue to pray specifically that we will get a better handle on some of these behavior issues.

As a side note, Katelin had her insulin pump installed at Vanderbilt about a week and a half ago. Other than having to change the thing out on the side of the interstate on the way home it seems to be going really well. Were excited for her as she has been looking forward to getting it for so long. The technology gives her so much better control and freedom. She has to change her pod every three days, but that equates to getting stuck once every three days vs. a min of 12 shots over a three day span. Go Katelin!! were all so happy for you

Looking forward to a great weekend although its freezing cold in north Alabama. Literally!! I think the high today is 28 and the lows this weekend are single digit. BRRRR Everybody please go out there and crank up those SUV's we could use a little more global warming here. Hey get over it, its my blog and I can say what i want to!! ha!!

We love you all and thank you for your prayers and friendship

Jeff and Allison

Mr Emotional

This blog has been brewing in my mind for a few days now. The only problem I have is how do I explain what were dealing with with Dawson without making him sound like some demonic two year old.....

So let me say in the very beginning of this blog that what I am describing to you is not an all day event but there are periods of the day that he just doesn't seem OK. What I am addressing are those periods.

If you've been following this blog for any length of time you have heard me at one time or another mention Dawson and some of his, what I call, " rage issues." You have also heard me question weather or not its med related ( he still takes Keppra) seizure related ( hes still having seizures) or two year old related ( he is still two)

For the most part, Allison and I are at our witts end as to what to do with him right now. There is just no way it seems to keep him happy. One minute he is happy and litterally one second later he just starts freaking out. He bites pacifiers almost in two, grits his teeth, starts throwing things, becomes violent sometimes, and then starts flinging himself all over the place. Once this starts, there is no stopping him until he is ready to stop.

As soon as it began, its over. Until he starts again. Sometimes only moments later, sometimes 30 min later, and sometimes hours later. The point is, it always starts again. He seems like a ticking time bomb for the most part and we just aren't sure what to do about it.

Some might hold their noses in the air and arrogantly say " that young man needs more discipline in the home." ( trust me when I say there has been plenty of discipline in this house when it comes to these outburst)

Others might clasp their hands together and say" poor poor child, all he needs is to be loved and held through these tough moments until the fit passes." ( trust me when I say that method is practiced in this home over and over and over again)

I'm sure there are those who with arms folded would say " You should just turn around and act like he is not there when hes acting that way. He is only doing that to get your attention."
( trust me when I say..... ahh you get the point)

All these things have been tried and none of them really work for him. We have very successfully raised 3 other children past the toddler stages, and the terrible two woes with no difficulties but this is very different than anything I have seen.

We have become prisoners in our own home because we do not dare take him out in public like this. Not because we would ever be embarrassed but because its just easier to deal with him at home as opposed to some restaurant or shopping place. We did try and venture out Saturday to the mall with him as it seemed he was having one of his better days. We wanted to eat at
Chic-Fil-A in the food court. Ya know just normal family stuff. We stood in line, ordered the food, found a table to eat at, started eating, Dawson ate a couple of waffle fries, and I guess on about the fourth or fifth one he decided he didn't like them, and went off the deep end.

Here are some other things that send him off the deep end....

Telling him no, giving him cheese when he asks for it, giving him juice when he asks for it, trying to give him his meds, falling down, asking him what he wants, making him say " UP" when he wants to be picked up, asking him if hes ready for night night, giving him the wrong sippy cup,
and all kinds of other simple things like this will completely send him off the deep end.

It is very very frustrating for us as we have been " secretly" dealing with this for quite some time. The older he gets, the more frustrated we seem to be getting. I guess in a way, as a parent, I feel as though I have failed in some way. I see the family getting into a mindset of whatever you do dont upset Dawson, and things are getting to the breaking point I feel.

Allison and I both feel as though Keppra plays a pretty big part in this. The drug is known for its side effects of moodiness and rage. B6 is supposed to make this better but it does nothing for Dawson. We are ready to pull the plug on Keppra as they have not made his seizures any better.

I placed a call to his Neuro today. waving the white flag, and pleading for help. We just can't continue to go on like this. She is working us in next Monday evening and said we will definitely be making some changes in the med department. We were supposed to start the Modified Atkins Diet weeks and weeks ago, but I told her today that we can't even begin to try it until he get his moods under better control. Something is going on that is making him miserable in order to act this way and we feel that taking away the foods he loves to eat will only complicate these issues. I know the diet needs to be tried and we are wanting to try it, but under different circumstances. He/we can only take so much. And its not just us... Allison and I both have to work to take care of the family and so while were working during the day the Grandparents get to deal with all of these lovely things. If your reading this Grandparents, please know how much we love and appreciate the dedication you have towards helping us with Dawson. What in the world would we do without you??!!

I must mention, in all fairness, that this evening and tonight Dawson has been an absolute angle!! he has been funny and playful, talking up a storm and having the best time. We really really needed this tonight. God must have known we were at our mental breaking points!!

Please pray for us in this area. Mostly pray for Dawson. At the end of the day, all we want is for him to be happy. We prefer happy with no seizures ,but just being happy would be pretty awesome right now.

God bless and our love goes out to all!!

Jeff and Allison