Happy boy again

Call it a fluke if you will, be we decided to go ahead and go back to the original dose of Zonegran he was on before we went to Memphis... and.....................

Already we are seeing our little boy come back to us. He has been more like himself ( yes a few small breakdowns) but other than that he is back to playing games with Madison ( instead of trying to kill her) and he has seemed very happy and pleasant for the most part of the day.

It just goes to show how even small increases and decreases in seizure meds can affect things brain related.

Welcome back Dawson!! We missed you

Now if we can only keep the seizure monster at bay on this dose... keep your fingers crossed!!

Much love to you all

Jeff

Surgery Date

Well, it took nearly a week but Allison was finally successful in getting the right people at the right time to give us some dates.

Oct 22nd we will go back to Memphis for another MRI. We will have this done outpatient and the scan will be using different kinds of software.

We will then go back on December 13th for the brain mapping process, and surgery. We could be there as long as two weeks which leaves us coming home on Christmas Eve Please keep these two dates in your prayers as we start to gear up for this frightening event. Allison and I believe that God led us to Memphis and these specific people for a reason. If you could only see the way this all came about you would have to agree. We also feel that this surgery will give Dawson his best shot as a seizure free life. God has instructed us to follow, and leave the details to him.. That's what we are trying to do.

Once again, we do not yet know how big of an area they will be removing.. This next MRI should provide those answers and ( in my own mind) have compiled a list of questions 3 miles long that I will try to cover with the surgeons over the next coming weeks.

In the meantime, something very very interesting has happened. His neuro in Memphis looked at the levels of seizure meds in his system and suggested going up on his Zonegran. We did, and Dawson has not has a seizure in five days. I cant even begin to tell you the last time we had one single day with no seizures.. much less 5!!

The downside to this is, is that this increase in Med seems to be having an extremely adverse effect on Dawson's quality of life. Since day one of the increase he has been different. Those who have followed this blog for the past 3 years already know of the aggression and behavioral issues. If this is a side effect of a drug, then Dawson usually reacts 10 fold.

He is having these horrible fits all day long, very aggressive and intentionally trying to hurt people. Not a good thing for a 3 year old. Point is, he is just not happy. As a matter of fact this increase seems to have made him pretty miserable. While we are excited about him not having seizures ( after all , this IS the goal) this is not a good alternative. As bad as it sounds, I would rather see him mostly happy having seizures, than no seizures and him being like this. There has to be a quality of life!!

We have called the Neuro and reported this and they want us to try giving the entire dose at night instead of twice a day to see if that helps. Well give it a go but if this keeps up were going to have to go back to the dose he was on prior to us coming home from Memphis. SIGH!!!!!


So, once again, a couple of specific dates to start praying for. We'll keep you posted.

We have also added a Paypal donate button. Prayerfully consider this and if you can... well you know... It's hard for us to ask this of people but even with insurance, were looking at quite an expensive ordeal. Co-pays, staying in Memphis for two weeks, food, gas and not to mention all the things that insurance is not going to cover.. Im just guessing brain surgery is pretty expensive.. Anyway, every little bit adds up and every penny donated will go to cover his medical expenses.

Thanks for your prayers and we appreciate all of you

Jeff

Rage

This weekend has been a little odd. Dawson has always had some aggression/rage issues, but this weekend they have been probably worse than I have ever seen them before. Im not sure what the difference is but he all of a sudden becomes violent. Pinching, hitting, biting...... throwing things( lamps, books, toys, drinks) turing over furniture ( kitchen chairs)

Seriously, One minute hes fine and the next minute he is freaking out.. Its as though he is literally loosing his mind ( no pun intended with the looming brain surgery) We just dont know what to do for him.. And the other weird thing....

No seizures this weekend.. None of this makes sense. Usually when the seizures let up a little, he is in a much better mood and frame of mind. Nothing this weekend has made sense with him.. And I just wish there was something I could do!!!

You can tell he can't help it... but at the same time, it puts a bad funk in the house while all this is going on

I guess this is part of life with a special needs seizure boy

Your prayers for a more peaceful Dawson are much appreciated

Jeff

Parolled

Thats right, we got early parole for good behavior. We were able to leave Memphis and return home. Ahhhhhhhhhh.... There is no place like home. We look forward to sleeping in our on beds tonight!!!

We got to come home because Dr Wheless felt he had everything he needed from the MRI and the seizures captured on his VEEG..

The results are something we have wanted to hear for a long time, but now that we have heard them, it leaves us feeling a little uneasy.

They found an abnormality in his right frontal lobe and they want to do brain surgery to remove that area. Thats about all I can tell you about it right now as thats pretty much all we know. Its unknown how big the area is, its unknown if its a section of the right frontal lobe or if they will have to remove the entire frontal lobe.. Still more questions than answers at this point.

Allison and I are both still trying to process this news.. I mean, its no surprise really. We have certainly read about others having this done during our 3 year stretch battling seizures. ( Mrs Foltz, I will be expecting a phone call from you!!) And after all the seizure meds we have tried and failed.. I can honestly say that there have been conversations between Allison and myself that discussed how awesome it would be if there was something in there they could just cut out and he would be seizure free forever..

BUT... saying that, and then it being an actual reality are two different things!!

Lots and lots to process over the next few weeks.

The plan??

We will return to Memphis and have another MRI done. It will be outpatient this time and it will be similar to the one we just had except they will be using different software to help better pinpoint what they are seeing.

The plan after that will be to schedule brain surgery. The surgeon said it would be a two phase ordeal and we would be inpatient for two weeks. Phase one would include putting EEG grids directly on the brain and do brain mapping to help locate the problem area and places to stay away from. Phase II would be to go back in and remove that area that the seizures are originating from.

Like I said... Lots to process.

Dont get me wrong, we are glad to have this as an option. Like I said, Dawson has failed all the drugs he has tried and Im tickled pink that we may have the opportunity to give him a seizure free life. But the surgery is risky.. It comes with no guarantees, and the right frontal lobe controls a lot of very important things... Like personality for one.. I can't imagine right now at this very moment giving somebody permission to cut my 3 year olds skull open and take out part of his brain..

And at the same time, I can't imagine ever watching my 3 year old suffer seizures/developmental delay/ behavioural issues for the rest of his life either.

Lots and lots of prayer that God will guide us in the right direction as we make decisions that can and will forever alter his life.

There are no re-do's here. Once its out, its out

Thank you again for checking in on us and for your many prayers this week. We are glad we got to come home two days early

Jeff

Memphis Day 2 PM edition/ The fighter

The day WAS going fine... That is until they decided that some of his leads were not properly affixed to his skull. So it was back to the torture chamber to re glue them back down...

I'm very proud of the way he fought. It takes three people to hold him down and if he could have gotten off that table I'm certain he would have whipped all of us. Three years fighting the seizure monster makes you pretty tough doesn't it Dawson!!!

Anyway, we are now back in our room resting and Dawson is giving the evil eye to anybody who even remotely resembles an epilepsy monitoring tech. And so am I.. Thats right buddy, fight em all!!!

Hopefully he will sleep as well tonight as he did last night! Thank you so much for your prayers this week.

Love to all

Jeff

Day 2 Memphis A.M. Edition

Day two finds things a little more calm then compared to 24 hours ago. Dawson has settled in and as unfortunate as it is, he knows this routine all too well. Late yesterday afternoon he was finally able to get some sleep and slept the majority of the rest of the day. He woke up for a while yesterday evening and then slept all night long. Poor kid, he was really sleep deprived!!

We were starting to get a little worried about seizure activity ( or lack there of.) He went all day with out a seizure and when your here to specifically capture seizures and you dont have any...... well that stinks.. This is the only time you pray for seizures HA! Only parents of kids wth epelipsy could understand this but we want him to have lots of seizures this week. The more he has, the better the Doctors will have an idea as to whats going on, in return the better the treatment.... He did finally have some seizures last night before going to bed. It was one of the harder ones that held and we are glad to get one of those nasty things on film. After the seizure ended, i was looking at his EEG and even though the seizure had stopped, his EEG looked crazy!!! All the lines were spiking all over the place and it took a while for them to nomalize again. Just goes to show that even though the physical part of the seizure has stopped, the chaos in the brain continues!!

A neuro psycologist has been in twice to do some evaluation type things. I think they are trying to get a very specific idea as to where he is developmentally. To be honest, its heartbreaking to go through this process. Listening to him ask Dawson question after question after question and the percent that Dawson knows the answer to is pretty small. I mean its not like we dont know he has developmental issues, but being hit in the face with them is no fun. 3 years of having seizures is taking a toll on his little brain.

Were waiting on the Docs to round this morning. Im anxious to hear what he has to say today..

Pics from above are Dawson finally crashing yesterday afternoon, a little playtime next door in the monitored playrom, and EEG showing seizure activity during sleep.

Thanks for the continued prayers

Jeff

Day 1

Were here, but its been a rough start. Our day started at 4:00 am as we had to be here from the hotel for a 5:30 am admission. That process went smoothly enough. Actually, the check in process was quite smooth compared to what were used to in Birmingham. But thats about where the good new ends..

We were first in line for the MRI this morning and they had a hard time getting a vein for his IV. It was quite the struggle!! His MRI went fine and he woke up good and then it was off to the torture chambers to get hooked up for his VEEG. I gotta tell ya, the older he gets the harder this process gets. He is so strong and he fought the entire time. I had to hold his feet and Allison had to hold his head and we had a hard time keeping him down. He is hoarse from screaming but the worst of it is over.

The good news is.. This place is wonderful so far. The staff here are outstanding and the facilities are top notch. We have yet to meet with Dr. Wheless. We are waiting on him to come up here and give us the scoop on what else we will be doing here this week. So were here, the MRI is complete, he is hooked up and so now the waiting game begins... Come on seizure monster.. show yourself..

Will update later

Thanks for your prayers

Jeff

Memphis Bound

I mentioned in an earlier post about Dawson's Neuro wanting us to get to Memphis to see a different Pediatric Neurologist to get another set of expert eyes on Dawson and his ever evolving seizures. Once again, God's timing is always perfect. Everything aligned just perfectly and there was a last minute cancellation and we are getting to go this coming Monday and will be staying the week at Le Bonheur Childrens running the gambit of tests. If it weren't for this cancellation, it would have been the end of November before we could get in to see him. We have been witness time and time again to God's hand spinning us in the directions HE wants us to go and this is no different.

We certainly dread the long week, taking a VERY active 3 year old and hooking them up to a bunch of wires glued to his head, which in turn takes away the freedom. We dread, as always, him being put to sleep, the MRI's, the PET scans and who knows what else they have in mind.. BUT..

We are excited that Dr. Wheless will be looking very closely at him and hopefully coming up with some great ideas that will help this little boy.... Baltimore this past weekend.... Memphis this coming week.... My my my aren't we the little traveler's now???

Keep us in prayer as we try to prepare mentally, emotionally, and financially for a long and draining week.

I do remember last year being at UAB for 8 straight days with him hooked up to a VEEG.. I also remember looking over at Allison on the drive home and I remember saying to her... " If we can survive being in that jail cell for 8 days and still be married..... we can survive anything!!!" So 5 days shouldn't be that bad right??

Our love to all of you

Jeff

Picture marathon and a lot of catching up

Well, we survived. Barley it seems at times but we made it. We tried going to bed early Thurs night because we had a 7:00 AM flight to Baltimore from an airport thats an hour away from here. Madison wasn't doing well Thurs night and even got sick before going to bed. We got up at 3:30 Friday morning to start getting ready to head to the airport and Madison is still sick. It was her first time flying so I dont know if she was really really nervous ( which she tends to get) or if she had some type of virus. We made the flight in time and she even got sick on the plane.

Thankfully Mr Dawson slept most of the flight to Baltimore. The time he was awake he was kicking the seat in front of him which thankfully was empty.

Our trip to Baltimore was for Allison's cousin who was getting married. They put the entire wedding party up at this beautiful mansion that was built in the 1700's. and as you can see from the pics above my little princess was one of two flower girls. The wedding was beautiful, the food and after wedding party was like stuff you see on TV. It was just fabulous!! I even got to sneak in a dance with the most beautiful flower girl I have ever laid eyes on.

We were a little worried at first ( we thought we were staying at a hotel) that Dawson wouldn't have anything to do all weekend. Boy were we wrong. He spent the entire weekend walking throughout the mansion. Up and down stairs, all around the grounds, up and down stars, up and down the halls, and did i mention up and down all the stairs?? His seizures have gotten so bad that I just dont feel safe with him on stairs right now. He is very sturdy on his feet but these stupid seizures are knocking him down and I was so afraid he was going to have a seizure while climbing on these stairs. Sooooo... We made sure to tag as closely behind him as possible the entire time. Very draining to say the least but what fun!!!

The flight home was perfect and once again Dawson slept for the great majority of the flight. Thank you God for blessing us with a sleepy little boy during both flights!!! So here we are safe and sound. The weekend was awesome but Allison and I are both absolutely drained. Its been a long time since ive felt this tired!! Hopefully sleep finds us early tonight because tomorrow starts all the catching up on work and other things around the house that got undone this weekend.

Seizures still about the same. It still seems as though they are evolving. He is having numerous myoclonic jerk type seizures throughout the day but is still having one or two hard lengthy tonic type seizures immediately followed by spasms type jerking. They are leaving him dazed and it takes a few moments to get his wits about him again. So painful for us to watch.

We did call his neuro before we left for Baltimore with concerns about these seizures and she is thinking she wants to refer us to a Neuro in Memphis to get another set of eyes on him.. Maybe I am wrong but thats kind of like saying I just dont know what else to do for your son.

Your prayers are appreciated and we are so thankful for those who prayed for a safe and mostly uneventful trip this past weekend. More pics will be trickling in from the weekend im sure.

Our love to all and God bless

Jeff

I'll take Happy Birthdays, hard seizures, and first days of school for $500 Alex

First things first. Dawson had a very happy birthday. The weather was perfect, he was in a great mood the entire time, and only had one seizure during his party. We stayed outside the entire time which is where he loves to be. We'll be putting some pics up soon but all in all the birthday was a huge success, and Dawson had a lot of fun.

We have are now off the clobazam and the number of hard seizures that are wiping him out have subsided to about one a day. He had a big one last night during dinner and these things are just heartbreaking. He still has the spasm type seizures that we are so used to seeing and as bad as it sounds we much rather like seeing those as opposed to those long seizures. Hopefully as the days progress the hard seizures will disappear completely.

In other news, Dawson started his first day of therapy at school today. He is going for an hour and a half three days a week and today he did just wonderful. He didn't fuss or cry and it sounds like he cooperated for the most part. Its just so hard to believe he is actually big enough to go to school.

We will be traveling this weekend so say some prayers for us. We are flying out of Huntsville Friday morning at 7:00 am ( cough cough) and will be in Baltimore for a wedding. I have to say i'm a little nervous about Dawson. First of all we are going to have to wake him up around 4:30am ( which is NOT going to go well) and then who knows how the rest of the day will go. This will be his and Madison's first time flying but when your stuck in an airplane with a seizure boy with behavioral issues......

Just pray for us ok??

We will be flying back home Sunday and Im sure we'll have some great stories to tell about our trip.

Thank you for all your prayers through these difficult days. God is the light that we follow through the stormy weather!!

Our love to all

Jeff and Allison

Yet another failed drug

Well that certainly was a short experiment. The Clobazam run didn't last very long at all. The fact is, is that since we introduced what was our best hope at a miracle drug, seizures have gotten worse while on it. Since the start a few weeks ago, Dawson's seizures have been on the increase with intensity. He is not having more seizures so to speak, but the ones he is having are getting lengthy and they are affecting him more. On average he is having anywhere from 2 or 3 a day up to 12-15 a day.

In the past, his seizures for the most part have lasted only seconds, we have watched them over the past couple of weeks get longer and longer and longer. We recently did an increase of the Clobazam as scheduled and they have gotten even worse. He had one today that lasted around a minute and they have been wiping him out afterwards as well. Hell have a big one and then immediately fall asleep. They are also leaving him dazed and literally knocking him off his feet when he is playing as well. So we called his Neurologist this afternoon and as we already suspected, we are to discontinue use of the Clobazam.... Another failed drug!!! Not only did it not help, it made things worse.

ACTH.. failed
Keppra.. failed
Topamax... failed
Zonegran.. failed
Banzel... failed
B6 Therapy... failed
Lamictal...failed
Vigabatrin.. failed
Clobazam.. failed

I have no idea whats next.. whats it gonna take?? Needless to say, this evening were feeling a little deflated about this beautiful little boy who is attacked relentlessly by the seizure monster on a daily basis.

Tomorrow our hero turns 3. Were having a family get together over here and since the weather is supposed to be absolutely awesome tomorrow, we plan to be outdoors ( Dawson's favorite place)

Pray for us as we work with his Doctors to try to figure out whats next..

Happy birthday little buddy!!!

Jeff