Things are continuing to go very well with Cully. The moments of rage have lessened a great deal and mum and Cully have found a way to work through them where Cully can take a moment to think before he reacts.
We continue to be seizure free...
The weight is about the same but he has toned up and is looking fantastic. The never ending appetite has gone away too.
We have enjoyed a sense of "normality" comparably speaking anyhow. Time has been given to getting things back in order and as a family as a whole. I pulled myself away from the computer and all those that I have been communicating with over these past months and just focused on us.... Now that we have found ourselves with such a wonderful outcome and had some "Our Time" I am going to take some time to speak with all the great friends we have made and get updates on their status. We have a handful of new connections that we worry about and really hope to meet up with at some point...
I have nothing to complain about or any urgent concerns to post. While we know we are in the early stages and anything can still happen, we are just really happy right now.. And so is my big ole Cully G.....
Isn't it amazing how we tend to focus so much on each thing that goes wrong in our life? It seems to be our nature to react to just what is effecting ones self first and react upon that situation as if every action has the common denominator of "ME".
Think about that for a moment..
Who are we to think that this world and everything in it is about "YOU..ME...SELF ? That is exactly what our thinking process is based on. It always stems from using yourself as the factor for what all things effect, are going to effect, or could effect. Even when we consider a kind gesture towards somebody else can you, to yourself, truly say that you do not "thought process" how your action will effect you?? Do you not spend a moment later to soak in the thoughts of your good nature? Is it possible to take the "ME" out of the equation? What would happen?
Crazy thought isn't it?
So now that Cully is doing so well with no seizures returning to this point, weight is coming down and all health issues seem to be a-ok.... why are we dealt another problem?? "Catch that? Why are we?????? As if it is about me again and not Cully. But that's what came out as I typed.
Cully is not the same Cully we had when we went into all of this 6 months ago. If you are one of the amazingly lucky people to get the opportunity to see Cully in a given day then you will see him as the big cuddly chunk that he is, complete with the chubby red cheeks and big ole belly that has to be moved about just to get his winter jacket zipped up. Your next observation is going to be his sweet demeanor and natural way of taking on a slow and gentle way of treating every child near him as if they were his own little baby. This goes for children younger and older than he... He has a big brother personality that makes others cover their mouths and gasp as he takes over for moms and dads and teachers.. You might even see Cully with nothing more than a simple smile too. Or...you might be one of those people at the next table over that thinks this child better get a good butt whoop'n and you would never allow your child to act like that..... Cully is not the same Cully anymore as he now is having more and more fits of rage each day..
So here is why I wrote my thoughts regarding how much we think about ourselves first in all things we do.
Cully is struggling with this. He is aware of this and is scared. He has compassion and a conscience. And how do I know that he is scared? He told us. showed us. In his own way he asked us for help.
Example.. Today after church we took mum out for a birthday meal. Cully was his usual self and was laughing and giggling when a piece of food fell off his spoon. This sent him into a rage and we had food and plates thrown, arms reaching out to hit and screams. Cully was aware of what he was doing and then immediately leaned into his mum and asked for a hug. When held after something like this Cully is shaking and very sympathetic. He needs to know that what he did isn't going to make us not be there for him. He wants to show how sorry he is.. He does not like that this just happened. And we see this reaction with almost each rage.
I think that the fact that Cully has these qualities is just another one the amazing gifted things about my special boy. But how hard it must be to be in his position...not mine where I am uncomfortable about what the people around me are thinking. I have been guilty on numerous occasions of wanting to let a parent know that they ought to give their child a good straightening out. And its me looking around worried about everyone's reaction when Cully has a melt down. When we got the diagnosis of the IS and the Autism it was not just the worry of our son making it through this but it was the selfish thoughts of how difficult it is going to be in the future having a special needs child. I kept thinking about how that moment in my life when my wife and I would have OUR time would never come and how cheated I felt. I even feel selfish to the fact that each night my son will call for mom and I will spend that rest of my night alone again.
I do not think that I am alone in having selfish thoughts but it is humiliating to think about it. Its a part of my nature I wish I did not have. Every negative moment in my life can be traced back to that common denominator of "ME".
I'm so very lucky to have a child that can remind me that he has feelings too. I wish I could make it all better for him.
Why were we hearing Cully laughing hysterically last night?? Cully stumbled on a video of the Dallas Cheerleaders in bathing suites.. He couldn't stop giggling... Parental controls are going on the computer as we speek...
I have not posted for a bit so I am going to toss out an update....
5 weeks seizure free.....
Cully is doing fantastic. He has lost several pounds and is now 45 pounds. His lower half is back to normal but above the belt line he has a long ways to go. His cheeks are not much smaller yet and the belly just started to go down..
He has his energy back and is keeping us on our toes. He also went from 18 medications down to 6. Blood pressure is even back to normal.
We have even taken Cully out in public again now that he is building his imune system back up. We surprised much of the family with Cully and his nephew and spent an entire evening visiting.
Cully visited his school too. He will be starting a special education program come January and he met his teacher and the other 11 students that he will soon call friends. He also did his "Building Blocks" program with mum, something he really enjoyed but had to discontinue due to the ACTH treatment. His visiting therapists have began to visit again as well.
Cully is acting like a 5 year old now and is showing huge improvements in his development. He is able to get onto the computer and use the mouse to reach websites such as YouTube and then look for football and Barney videos. He can do this on his own and he really enjoys it..
Our down side right now is Cully's tantrums. We suspected the withdrawal from the ACTH would cause this but as we get further away from the drugs end we are seeing an increase in the tantrums.
Tantrums is not a big enough word for what is happening..... What Cully is doing is scary.
The other day we thought Cully broke his mothers nose when she picked him up during one of the meltdowns and he slammed his head into her. Cully will throw things with the force of a teenager when he rages and he will run across the room after any one of us to hit and kick us. It is complete rage.
What sets him off can be anything. A simple no. Telling him to come to us or put something down. He dropped the IPad to the floor yesterday and I kindly said "thats not how we put that down. Pick that up and hand it to me." He broke down in tears and then lashed out. He was walking around with a plastic cup and a fork making drum noises and we were clapping and playing right along with him. He tossed the cup at mom just in a playing way and it hit her on the head and she said owe. Cully broke out in tears in an instant and then threw the metal fork very hard in anger and hit mom in the face and began his rage. Mom put her arms around him and he was shaking. This time the rage was set off by feeling bad that he hurt his mom but then he turned it against her. Because Cully also does things like run across the room and ram his head into the wall or throw himself down and repeatedly bang his head on the floor, we have to keep him extra close. He has no care if he does this on the tile floor or the carpet. He continues to hurt himself like this.
We have seen him show remorse very quickly after he has one of his episodes.
So this is the new bump in the road. I am about to reach out to all our new friends and ask for information on their experiences with the drugs Cully has been taking. And regarding IS as well. Just hope that this is part of ending the drugs as we did not have a Cully like this 6 months ago..
Cully has only two more injections of the ACTH. Tomorrow night it will be over...... I want my son back! but still glad for the drug as it did its job....
We don't always realize just what value we have in the things that belong to us. I have learned with each increase in my lifestyle comes higher standards to keep myself happy and content. I proved this to myself with a hand full of past incidents and am well aware this is fact. Having spent so much of my time this past month without my wife and Cully here in our home led me to be more self sufficient and accountable for what I had on hand. My reduced time working led to a significant drop in my income and set me back well over a year as well.
So why do I bring this up?
Well my wife and son are home again. And just the one minute I had when Cully came to sit on my lap tonight and lean in to me made me think how many snuggles I failed to notice before. Jewels came down the stairs this evening with two cups of coffee and we sat next to each other for 45 minutes. Nothing more that the two of us. At one point she reached over and put her hand on my arm and I melted. I forgot how precious a simple human touch is.
I realize all I have now. I also realize all the demands I have and the weight on my shoulders to live the way we do. If I can pull it off I will take us back to a small ranch with a small mortgage and two paid for inexpensive cars complete with dents and bad tires. My time with my family is being wasted on working to pay the bills and less devoted to the small things like a drive to no-where with a picnic basket or a freezing cold trip to the UP out of season for no reason other than to goof around with the family.
Cully is home and on a roll. His state of mind is unbelievable. On our drive home from the hospital I listened to Cully sing out with a strong clear adult voice to one song after another. ABC songs, Nursery rhymes, answering questions with word structure. He was alive, awake, developed. He was gifted. All this had been locked away behind his seizures and we did not even know it.. Cully is one month seizure free now....
Cully's physical appearance would make you gasp. He is bloated still, face swollen and belly extended. He walks stiff like a zombi and he is unable to get into a seat on his own. Yet he is far better than a week ago. The drug that saved his life has turned against him in so many ways but it is all about to end. He is on a unheard of reduction in this drug and will be done this Sunday. He is going through withdrawals from the drug that are rather severe but temporary. He is saved.
Last week I accepted, to myself anyhow that I did not think Cully was going to make it through this. I figured we gave our best but he was not going to return home to us. I was considering all the choices we had made for him and wondered if I had done this to him. Should I have done this or that ? He was not doing well and I did not have any way to express how bad he was to others. But he did return home today. And he smiles, goofs around and at times has a rough time of it. But............
Sure am glad to have Cully in my life..... Seems he is rather lucky to have this family too......
When you watch a love story movie on TV and the shot shows the woman jump into the mans arms and they hug as the camera spins around focusing on their arms wrapped tight as they hold each other...... Well that is exactly what we saw today when Douglas walked into the house and saw Cully in his sisters arms. Cully flailed his arms out and his smile widened as Doug reached out and lifted that huge boy out of Elora's arms. Cully wrapped his arms around Doug and squeezed him until Cully was shaking and he pushed his face into Doug until the pressure turned his cheeks white.
It's just such a good video to watch again at this time as we reach a big point in Cully's fight...
Well in just three days we will be five months into our journey with Cully Gage and his seizures. That day will also mark a very special day for us as it will be our one month anniversary for no seizures.
A recap of events.....and a long post...
Mom and I had reached a point back in June when we really needed an answer to why Cully kept behaving the way he did. He could not be left out of sight for a moment as he would climb out a window, turn on a stove, empty a cupboard or even worse, find his way to the street. With numerous children before him without this issue we knew something was not right. A trip to the U of M hospital and a multi day stay only led to us being investigated for possible child abuse and a clean bill of health for Cully. Child abuse due to us being completely open and expressing some of Cully's actions such as him trying to touch a hot stove or close his hand in a door. This was the behavior we were so concerned about and were seeking help for... A family pediatrician and a group of in home child therapists who we had visit often to help Cully made calls and put a stop to all of that abuse theory right away...
Next step? Cully returned home and suddenly he has what we believe to be a seizure. And another and another. Calls to U of M lend to the answer of "we will call you in November to schedule an appointment. That is 4 months away !! To the pediatrician we go where Cully goes into his seizures while in the doctors office. He immediately makes several phone calls demanding our child be seen. U of M gives no response but the moment we walked in our home it was Detroit Children's Hospital that called and set up an appointment for our son to be seen. We went to them with an overnight bag packed just in case and when we arrived they saw the bag and chuckled. "We have a 24 EEG open and can get him in immediately". And so they did. And within two hours the diagnoses came to us. But the 24 hour EEG continued.
Cully diagnosed Autistic and with epilepsy.
We have a son with epilepsy. Terry has it and we give the meds and see his neurologist and go two years between his rather mild seizures. Not too upset about the epilepsy but the autism we know little about. Autism worried us. We know little about autism but we will be ok here. We will learn and get the help needed. Time for a vacation to get away so a last minute reaction said pack up the van and off to New York and Niagara Falls we go to get away for a handful of days, fun with the boys before getting in gear with autism..
But..
Sunday morning while at a hotel room in Niagara Falls we receive a phone call from the neurologist that diagnosed Cully. "Get back right away, we need to start him on Vigabatrin". She explained that Cully had a form of epilepsy call Infantile Spasms. And so we packed and returned home. But what was this Infantile Spasms?
We googled all we could about IS. It is bad. It is not what we want for our child. The Autism seemed small now. Get home right away. This is rare. We now have to find the best place for Cully to get help. Where in the world do we need to go? Where is the specialist for this? A video popped up and it was a child who was having the identical seizures Cully was. I reached out to the mother that posted the video immediately.. Pleading for help.. What to do and where to go.. And she replied the next morning....
"Seek out Dr Chugani for your son. People from all over the world go to see him with their child".
Well it just so happened that it was Dr Chugani's department that gave Cully the original EEG and diagnosed him. We were already where we needed to be and were no longer alone now that we had this wonderful mother communicating with us.
We continued the high risk drug treatments but the seizures continued. The idea of the Ketogenic Diet was recommended by the doctor but after testing was done for Cully to start the diet we learned that Cully's body would not accept the Keto diet and that was not an option. We had one more option. A drug called ACTH. An injection that we would give Cully each morning and night for eight weeks. Hard on the heart, hard on the body, and with multiple side effects but it was a chance.. And we began the injections. And for a couple weeks we noticed nothing. Seizures continued. An appointment for Cully at Detroit Children's for a EEG ended up in him being admitted for a very low level of potassium. So low that Cully would not even complete his EEG.. And the ACTH dose was increased. Come the next morning Cully would have what would be HIS LAST SEIZURE. The increase in ACTH stopped the seizures. Cully remained in the hospital for the inability to keep his electrolyte levels correct. After a week he was released and he came home to continue the ACTH.
After another week of no seizures we began to ween Cully off the ACTH drug. Cully was now beginning to add weight and increase in size all over his body. Calls to his team at the hospital assured us that this was part of the drug. As time went by he continued to grow at an alarming rate but more calls continued to assure us this was part of the drug.. But after 18 days of continual growth we found Cully unable to move. He did not speak often and breathing seemed hard for him. He had gone from 36 pounds to 60 pounds and was in horrible discomfort. His scrotum had grown to the size of a softball and we had enough. We rushed him into the hospital where at first look they understood that what was happening to Cully was not normal for the ACTH drug. He was tended to immediately.
Cully remains at Detroit Children's Hospital to this day and may be there for some time yet. Since his admittance he has lost 7 pounds. His highest weight was 62 pounds. He was unable to move for days and could only lay on his back. A surprise visit from a little 14 day old nephew who was anxious to meet his Uncle Cully had made a miracle turn around for Cully. After that visit Cully sat up. He also decided he would begin to use the toilet and from that point on, with his mothers help he has continued to use the toilet every single time. Cully became more vocal and continues to call out for his little nephew Jaxon often. He is monitored very closely as his blood pressure is high and he is currently fighting off an infection or a bug of some sorts. He is on his way to recovery and while he has a long way to go before getting back to looking and acting like the old Cully, he is doing ok.
We had a rough time of it when Cully was mistakenly given a dose of his ACTH five times greater than the intended dose. This was a horrible error by the hospital but a human one as well. It does not appear that the overdose is causing any particular issues at this time but a close eye is on him. He is now once again back to a VERY aggressive ween from the ACTH drug which is believed to be the reason for the condition Cully is in right now...but we are not forgetting that this is also the drug that has stopped Cully's seizures and in no better words has "SAVED OUR CULLY".
Julie and I will never find the words to thank all the people who have helped us with all we have been going through these past five months. We have made some wonderful heart felt connections to some amazing people who share the same sorts of struggles with their child. People from all over the world in huge numbers have communicated with us and kept our son in their thoughts and prayers. Candles were lit, prayer chains were updated daily, and wonderful advice and connections have been given to us. And I would not have made it without all of those people and I am so glad you are there.
This is obviously just a general overview of all our Cully has been through and we could fill a book with each event and hurdle but....there is enough here to show that our little two year old boy has taken on more than most and still holds the most precious smile you ever might see. He is due for a break and that I think is right around the corner.
So in ending this very long post I will try to summarize this all.Cully is unfortunate to have IS and autism as we all wish our children to be happy and healthy.. Mom and I are doing all we can to end this IS and thus far it looks as if we have beat the odds and are one of the few and fortunate. And as for the autism? Well Cully doesn't know he has it. He is going to have a wonderful and fulfilled life regardless. It is our responsibility (and pleasure) to be certain that we open every door we can and find the help for not only Cully but Mom and I as well so that we can find the channels to teach him and communicate with him to the fullest. And all these issues he is having right now will pass. He is going to win......
Cully will come home. He has too much to teach us....
A gigantic bloated goofy tub of Cully has shocked us all once again. Unable to move much at all in his hospital bed yet he decided that it was time to potty train himself.
AND HE HAS DONE IT !
In four days he has not messed his diaper even once. And with his meds he has to pull this off multiple times a day too. Obviously with mum as the transport.. Cully just says the word and off they go. This is unheard of by the entire staff at the hospital. Doctors are coming in to say they heard the news and get the story. Staff from all over the hospital continue to visit our amazing Cully.
Things are continuing to improve. Cully has lost a total of seven pounds since he was admitted to the hospital. He is beginning to reduce in his tummy and feet as well as other places which will make him more comfortable by the day. He is on too many drugs but there are none without a good reason. Blood pressure meds were added today. He is fighting a intestinal infection or perhaps a bug of some sort this evening and is in a isolation room now. All in all though, doing well. And mum is holding up well too. And I miss her.
Yesterday morning started out rough when Doug missed the bus and had to get a ride from me. Then once at work that phone call came in that said Sawyer got sick on the bus. At this point I was already an hour plus away so back home I went. Only to find that what ever made Sawyer sick had been left on the floor of the bus.. Well, and on his jeans and jacket... But Sawyer felt just fine so what better excuse to do laundry..
Being a mum is tough stuff. I have NEVER underestimated the importance of my wife but I am surely learning to appreciate all she does even more now. I had to learn more of the task called laundry. ALL DAY. The boys and I took on this as a team. 100% of all the laundry, all 7 loads of it are done and put away. We then took on the house together and cleaned each room including walls, doors/handles, floors and drawers. The closets got cleaned and we emptied the fridge and cleaned her up real good. I can not imagine doing that with an autistic 2 year old on hand as well as the huge number of visiting therapists and appointments that Julie has with Cully and the boys.
So Cully.... the house is ready for you and so are we. I expect this may take a while but our fingers are crossed.
Last night someone at Detroit Children's Hospital made the mistake of giving Cully an overdose of ACTH, the drug we are so frantically trying to get out of Cully's system. He received a dose 5 times over what he should have gotten. Medical staff learned this late in the night and Cully was hooked up and tested again and again. The team has had close eyes on him but we are not seeing anything of the overdose at this time outside of an increase of cortisone and blood pressure. Because of this mistake we have lost the ability to continue the aggressive ween that began two days ago and now must increase his intake of ACTH and begin a ween that will take much longer. This is horrible for Cully.
Cully has not improved yet and he continues to hold fluid and is unable to do much of anything but lay on his back.We are not getting any better yet.
Today Cully has an amazing surprise and so did mum. My grandson whom we have not yet met. I surprised them by bringing lil Jaxon and my daughter to the hospital. I walked in with a handful of clothes for mum and acted as if I were about to drop them. Mum rushed over and lifted the clothes from my hand and found her beautiful grandson Jaxon in my arms. Cully's reaction would make a linebacker cry. We laid Jax down next to Cully and while he was unable to turn his head and look at him, his arm reached around him and he stroked Jaxon's hair, played beep the nose and held his tiny hand. The smile on Cully's swollen face was priceless and for a moment he was a very very happy boy.
At the time of this video three days ago we were concerned about our sons weight gain and had voiced our worries to the team at Detroit Children's Hospital several times. We were consoled and made to understand that the gains are all part of the ACTH drug which as we knew was a very scary drug but at the same time was also our chance to save Cully. And we had made a decision to try the treatment. At one point we took Cully to the local ER last week when we found pockets around his groin which looked like marbles under the skin. We were assured that these were pockets of fluid and they understood this drug would cause fluid retention. Home Cully went.
Cully kept growing in size and weight by the day. He became unable to move, care to speak, and was more uncomfortable by the hour. His scrotum even grew to the size of a softball and we had enough. Julie and I decided it was time to make the call and get to Children's Hospital regardless of the conversations we had over the phone with them. Regardless of the knowledge of these doctors and researchers, we are the eyes and the parents. While it all seems wrong to think we know better than these doctors, well, sometimes we do.. After all, parenting in my book is held much higher a position that any CEO, government seat or yes, even a doctor. And I'm so glad we made that decision.
Once at the ER the staff took one look at Cully and made him a priority. He was admitted and during the two hours since we had left home Cully had grown in size and weight. His scrotum now so large he could not sit or move and he was in horrible pain. He was completely inconsolable and began screaming, which would not end for several hours. Eyes were unable to open fully as his face was so swollen, his weight now was 62 pounds. Just 19 days earlier Cully was 36 pounds.
Nobody had a clear understanding just how bad Cully's health was. The staff speaking with us on the phone thought we were expressing the same concerns most parents have while on the ACTH drug. Yes, the cheeks swell, the weigh increases and they become uncomfortable. We were very concerned but at the same time we felt that the staff did a good job convincing us that what we were seeing was the norm. It took the hospital to actually see Cully for everyone to understand that what was happening was NOT NORMAL and Cully was in serious danger.
Cully and mum remain in the hospital. Tests after tests only tell us that Cully's kidneys have failed. The extent of their damage or if the damage can be reversed is still unknown. It seems likely that the ACTH and or the several other drugs he is on has done this. The ACTH can not simply be quit. It is a weening process that we had already began but the neurology teem took no time to make an unheard of reduction in the ACTH straight away. His ween will be a very aggressive one now.
The first issue at hand now is to rid Cully of all of this fluid trapped in his body. The difficult part is that the tools used to remove fluid removes potassium as well. His potassium has crashed very low again. In as much time as he has been in the hospital Cully has lost 4 pounds. He has a long way to go yet. His scrotum is still painfully large and he can not move or sit. His life at this time is laying in the crib and having one test after another.. Yet he still manages to smile and be his usual gentleman like self. The screams have stopped.
He is being observed by several teams from many departments and at record visits per day. Cully has become the hospital favorite once again and staff from all floors continue to visit him just to say hello. But we do not have all the answers yet. We have no idea what to expect in regards to his kidneys and all we can do is hope that they can be saved. He has a long road ahead of him and with so much unknown at this point we have little comfort in what the outcome is.
The wonderful news in all of this is that Cully is still 100% seizure free. While that may sound like a small accomplishment in comparison to Cully's current situation I can not find the words to express just how incorrect that would be. These seizures that Cully was having, the infantile spasms, were taking Cully from us. There was very little chance that we could stop the seizures but we chose to try these treatments just the same so that he had a chance. The alternative was not good. As the medical definition states... "Infantile Spasms is one of the most catastrophic forms of epilepsy". We are very lucky in this respect. We are winning that battle. We were on the down hill side when all these new problems came about and we need to get past all this so Sawyer can teach Cully to ride bikes..... We just need to hear the kidneys will come back.
Since the only update I can give is "ALL GOING WELL".... I figured this would be a good time to intro the good looking gal that everyone here calls MOM......
This is my "Jewels" and she is the reason we all keep our sanity.... Thanks for everything honey...
Cully's original EEG on November 6th turned into a near week long stay at Children's Hospital when his health took a turn for the worse. After his discharge Cully had another bout of the muscle spasms in his arm which was linked to the low electrolyte levels so he returned to the hospital for a day stay and an IV.
NOW THE GOOD NEWS !!
We returned again for another EEG yesterday as a follow up after the increase in ACTH. the results were GREAT ! Not a single sign of any seizure activity in his brain. Nor had we seen a visible seizure all week. The ACTH has done it... And now we start to wein him off the ACTH which will take 5 weeks. We were informed that there are some children that may need a second round of the ACTH and we will see how this goes over the next couple months. BUT IT WORKED !!
We knew something was up. Cully has been doing so good. The last few days he has been putting words together to make a full sentence. His speech is a little clearer too. His attitude has improved too. Without all that erratic activity in his brain he has been able to focus and stay on task.
ANOTHER BUMP THOUGH....
Today Cully had to return to the hospital once again due to the muscle spasms. They were much worse than we had ever seen. This time not in his arm but in his legs. Starting in the left and working to the right. He came yelling OWE..STOP IT...HELP..... The legs were twitching and cramping and it hurt him a lot. I think it could be described as the feeling of a charley horse that goes on for a while then to stop for a moment and return again. He was crying and begging for help but there was nothing we could do but panic, which we did. He would walk for a moment and then both legs would give out and he would fall to the floor and grab his legs screaming. This happened a few times while we ran around getting things for the trip to the hospital. To see it was really frightening as you could not miss the legs shaking so fast and when I would hold his legs you could feel the muscles inside pull and release like cables under his skin. Imagine being a 2 year old trying to understand this.
Blood drawn and tests came back and showed that Cully's levels are all normal or better. So now the issue is to determine what is causing his muscles to do this and how can we get him immediate relief? Is this due to the ACTH treatment or something else?
Cully has gained 11 pounds from the ACTH in less than two weeks. I think half of it is in his cheeks...
In a strange turn of events, which seems to be rather common lately regarding Cully.....
CULLY IS HOME !!! CULLY IS HOME!!!
Figuring that he would be more comfortable at home and be closely monitored, Cully was sent home this evening. His potassium level was good this afternoon, calcium too. So home he went. Thursday back to Children's Hospital for tests and nothing but family time at home til then. Lots and lots of family time.. :>)
Cully went in to the hospital at 36 lbs. He returned home a whopping 42 lbs this evening. The ACTH is REALLY DOING ITS JOB !
NO SEIZURES AT ALL ....................................
Just when you think you have things figured out... Uhgh. ..
This morning Cully's potassium crashed very low again, he has a cough and the sniffles, and his blood pressure is crazy too.
Just going to have to take it day by day but he will not be on his way home any time soon. Cully's Mum has not left his side all week. I think they are enjoying all the time they get to be together.
Just another little bump in the road..
Cully had a visitor by a therapy dog. He loves puppies. Even if they are as big as a horse.
Lots of smiles all around. Cully has perked right back up and is interacting almost like usual.
AND NO SEIZURES AT ALL!!
Today his big sister got to surprise him with a visit. They walked together, played and Elora even fed Cully a nice supper. The left arm has completely stopped shaking, he digestive system has improved a lot, and the potassium level reached almost normal before declining a bit again.
So here is what seems to be happening. The ACTH drug is causing the kidneys to not allow the potassium, electrolyte or calcium levels to remain normal. But... the kidneys have not failed. They simply are tricked into not building these levels in Cully while the ACTH is present. No damage to the kidneys has been done and once the treatment of ACTH is complete the kidneys will function the way they should. Until then we will be giving Cully supplements of all three and he will be monitored very closely. The ACTH was also increased in the middle of all of this...... And he has not had a seizure.
Low potassium will cause the digestive system to not do its job. Replenish the potassium and things should function again. Low electrolytes will cause muscle spasms. Replenish those and the muscle spasms/ shaky arm should stop. It has...
Further tests tomorrow should tell us if this is all correct or if we have something else going on. If things do stabilize in his levels and Cully's digestive system comes back to par then he may even come home very soon. His tummy still continues to get very hard he is having a good bit of pain with cramps and such. Things just have not come back enough yet in that department so fingers are crossed that we get this worked out. Another thing we need to monitor is his heart. He has had some episodes of low heart rate and palpitations.
We were in such bad shape over these past few days and now we see things looking so cheery. We have gone from desperation to excitement. My boys have really shined with all of this. Sawyer has been so understanding and patient. Doug has been so grown up and helpful, kept to his school work and been kind with his words and frustrations. He has been a true adult through this and I think these experiences are shaping his future.
I need to put together a better post. Something made up of more than sad depressing news. I'm going to toss one out tonight with a touch of fact be it good or bad, a twist of smiles, and a dash of giggles.
I have a problem with keeping my chin up and seeing the positive at each turn... Just call me Eeyore.. I never forget to find the good but it takes me a bit longer than most when I get overwhelmed. And I get overwhelmed often.. But here you go... Cully >>>>
Cully just can not seem to get his potassium level up regardless of what the team at Children's Hospital does. And the team has told us they think they may have an answer.. It looks like it is Cully's kidneys. And the ACTH may be a contributor. The ACTH treatment is continuing at this point but we do not know what will come tomorrow. His calcium levels are low as well and the "Kidney team?" visited and explained that it is a sign of kidney problems. So we wait to learn what to do about that....
Digestive system has not been moving but we have signs that it is getting back to work now. We hope to see even better signs tomorrow..
Cully is beginning to snap out of his TEENAGER stage where all he does is lay in bed all day and whine. After sleeping the whole week away we found Cully playing with his brothers for a few minutes last night. This evening he and I took a stroll around the 6th floor in his stroller with Cully wearing a mask. We even made a pit stop at the play room and he had a few minutes of fun. He even stood up on his own two feet and walked a bit. So while he is still spending most of his time unconscious in his bed he is also showing better signs of alertness and playfulness.
Cully grew. He is HUGE and this is just in comparison to yesterday. It doesn't even seem real but he is too much to lift, to big to wear any of his close and he is strong as an ox be it sick or healthy. Eyes are somewhat swollen closed but nothing uncomfortable for him. This is most likely his medication.
This morning we gained one more hurdle. Cully's left arm is shaking from time to time. The neuro team checked him out and it is not a seizure. It does come and go but boy does this get Cully MAD! I handed him the Ipad and he could not get his arm to function so he began yelling at it "NO NO STOP IT" The crew is working on that one as well and this could be something as simple as a muscle spasm due to his low levels or his medications.
I had a nice evening with him while he sat on my lap for a moment and the little strolls we took, the singing to a Barney video and he even gladly accepted a backrub from me. When I went to leave tonight he was laying on his belly and he kept shuffling his huge self to the side. We had no idea what he was doing but in the end he got his face up against the bars of the crib and pushed his mammoth chubby cheek through so I could give him a kiss goodbye. That took a lot of work (and a lot of time) to move that large of a load across the bed just for a kiss and it made it all the more enjoyable.
Now..... We have had several people treat us so well these past days. Emails, calls and texts. Even a couple emotional posts on Facebook in our favor. Julie and I can not clearly explain what it means to us to have people, friends be there for us like this. We have needed it too. Especially me as I get in my crazy state. Thank you for being there with the offers of help, the checking in on us, and keeping Cully in your thoughts. We are learning what true friends are all about.
Things are improving in ways and the more we learn the closer we will be to making things right. I would place my bet on Cully returning home soon in much better health and making us all laugh with his goofy acts.
On another note... Tonight I made a stop on the way home and picked up Cully's big sister Elora. Now when I say big sister I mean BIG SISTER.. Elora is due to make me a Grandpa any minute. YES ! GRANDPA !.. Now I don't know much about this grandpa thing but I think it means that I get a discount on my coffee, am supposed to leave my turn signal on at all times to announce that I belong to the *Grandpa Club* and that I now have a responsibility to double check each and every one of my receipts and contest them when incorrect by even as much as 1 penny. Why are you doing this to me Elora??? I'm glad you are here..
The doctors made another visit this evening. Cully has received four IV bags of potassium and his levels have not increased and remain dangerously low. He also has thrush and is now receiving an antibiotic.
When I left the hospital last night to come home to Doug and Sawyer we were uncertain what we would be expecting with Cully. He had a rough evening with tears and screams. He was given a large amount of potassium over night and his tummy improved and his potassium level raised. In the morning even after the flood of potassium his levels dropped dangerously low again. The ACTH had been increased. Cully had settled down and did go back to a solid sleep that continued through much of today. He continued to not want to be touched. His potassium intake is now increased to a tremendously large volume and we will wait to see if the levels rise and hold..
Dougie and Sawyer visited today and after a little while I found Cully sitting up and laughing hysterically while they all played together. THIS WAS HUGE ! and only Dougie and Sawyer could pull this off...
The doctors seem to think that there is a chance the ACTH may be causing the potassium levels to drop. They feel taking Cully off the ACTH is unacceptable as we need to try to stop the seizures. If they determine the potassium levels to be due to the ACTH then they will give Cully a supplement for his potassium and continue the treatment. Levels are not increasing yet so they are going to continue to monitor him closely and figure this all out.
The ACTH drug will keep Cully's body from having a temperature until infections are deathly over running his body. We just can not tell if he is sick or if he is responding to reactions from his medications. Cully's medication list at this time.
Cully's EEG was cut short today. He was taken down to emergency not doing well at all. His potassium level has been declining and hit a very low level. His tummy is tight as a drum and he was acting lethargic. I put my finger in his hand and he cried and pulled away. Seems to be achy and have a headache too. Cully has been sleeping all day too which is very unlike him.
Radiology took two sets of Xrays and questioned if he had any sort of a radioactive fluid test done recently?? No never!! they say that Cully may have had eaten something then as there is something showing up like that in the Xrays. They then said it could be some sort of lead that he ingested?? See earlier posts where I mention that Cully eats EVERYTHING.. Pika. It is possible but what he ate we have no idea.
Once admitted to the hospital he was transferred upstairs and is being taken care of by his mummy. Julie just called and Cully is screaming non stop. He is just miserable tonight. He has an IV drip of potassium and ?? and is being watched.
The wonderful Dr Chugani held his meeting with us in the emergency room. Cully's short EEG showed plenty of seizures and hypsarrhythmia. Definition? Hypsarrhythmia is a high voltage disorganized pattern of EEG abnormality in the brain. Basically the IS.
The doctor has recomended we increase the ACTH and keep trying as the alternative is surgery and he does not even want to discuss that yet. He also explained that Cully is having secondary seizures called "Tonic seizures". I still was uncertain of the type of diagnoses of IS that was given. It takes me a while to understand all of this so I had to come right out and ask him. I see the other families mentioning the complete diagnosis of their child and I could not explain our situation. All of this still seems foreign to me and I can not put the pieces together. Dr Chugani explained that we have a Symptomatic diagnoses of IS which means we have found a cause. Cully has a focus in his front temporal lobe and it appears to be a single focus. This focus is located in a good area in regards to the surgery/removal if we should go that route. He feels that some of the things we are seeing with him such as the sensory disorder and aggressive non stop behavior could be linked to this focus as well. My son has several positive things going for him while in a rather unfortunate situation. Now we just need to get him better so we can keep moving on with the treatment.
Cully has the flu. Flu and ACTH does not make a good combination. Took him in, doing good and will still have the EEG and such in the morning.
One step closer to overload. It's the non stop snuggles I keep getting from Cully out of the blue that keeps me grounded. Does anyone else find it odd that the little boy with autism seems to show more social care and close interaction than most children do?
... So help me Cully ! If you're faking it ! well.. I'll be pretty happy...
Sawyer is better and turned out he only had a sour tummy and no flu.
Cully is still having seizures while on the ACTH for almost two weeks. This morning he had the worst seizure yet and it caused him to fall down. This is about the worst thing we could see right now.
Outside of the seizures he seems ok. The tempers and the whiny attitudes are as expected so not worried about that. He loves to dance and interact with everyone. He is smart and still is learning a lot of things.
Something I am noticing a lot of however is he is mumbling almost everything. Not quietly but rather just all mushed together where we can not make out a lot of what he is saying. Maybe this is part of the drug or could this be his regression? He is not hesitating to talk though. Every time we hand him something or he asks for something it comes with a "Please" or "Thank you" and he is ALWAYS wanting something. But our first regression at the start of all this was his speech so there is a sign that this is not the drug unfortunately. Fingers are crossed...
Our days are still filled with snuggles where Cully will get next to us and hug us or just lay on us. He has his sense of humor which is very prominent every day with tickling us, laughing and hiding around corners to scare us with a "BOO".
The patients project is all but out the window. Cully gets very frustrated with the Ipad now and has no tolerance for much of anything that does not work just right. This he gets from his Daddy though *sigh*.. Guilty as charged....
Tuesday we return to the hospital for the EEG and we also meet with the doctor to see what to do next..
Got the call from my son this morning that Cully had some hard seizures this morning. Julie told me later that there was only a couple in each cluster. A call to the neurologist was made and we were instructed to let them know if we see an increase.
We have our hands full here. We now have a Cully that is just completely unhappy in every way. It's non stop whining or crying all the time. He does not know what he wants and one moment he wants to be held and then he does not want to be touched. This is what we were told to expect.
I am not sure how to work with his social or autistic issues with him like this. Do we let this go for the duration of the ACTH or not? Is it even possible? Just five minutes of Cully like this will wear anyone down and I do not know that either Julie or I could manage working on many tasks with him.
Nothing has really been mentioned on this blog about Cully's autism and most of the time nobody has seen anything more of his actions other than his non stop running and activity. Stick around and spend time with him and this is what you will see. ......When frustrated with being told no or trying to play a video on the Ipad Cully will start hitting himself in the head with both hands and yell no! Another action he has been doing more of is pulling his hair with both hands. And it's becoming much more frequent too. When he has any sign of a hang nail or a piece of loose skin on his fingers he has to have it taken care of immediately. He will continue to tell us "owie" and hang on us to fix it right away. If he has a runny nose or should get a little buger on his finger he will completely FREAK OUT and keep saying "EWE EWE". It's the degree of how he acts about this that makes this an issue and the only way to resolve it is not for him to wipe it off his finger but rather he has to give it to mum or I. There has to be a transfer to someone to make it go away.
There is no doubt that Cully is going to have several issues to live with but I want to grab some control of as many as I can as early as I can and nix them before they are set in his ways. Like the hair pulling and hitting. If I can get that to stop then I would have to imagine that as a young man or adult he may be able to live a much more mainstream? life. I hate using the term "normal".
I am seeing that it may not be possible to continue working for the moment when we are having so many issues in the home. I can not afford not to work but at the same time I can not see how Julie can deal with this on her own and there is really no other options. For the time I am hanging on to see if we see improvements on the home front but if I see missed chances to improve Cully's future then I will certainly be stepping away from my employment for a while.
Most of the help and support that I have been getting with Cully has come from our new friends to the East. We just wanted to shout out and let you all know we are thinking about you and hope this all blows over quickly and you keep your lights on and stay warm. Should anyone need anything you can give a shout to us..
Well we started Cully on ACTH on Tuesday. We were to understand that we would see non stop crying and mood swings. We were also told we should see a change in his seizures by day four..
THEY WERE RIGHT !!!!!!
I reached my limit and the stress won. I had tears in my eyes and had mood swings that would have run the average woman out of the home.. But my wife stuck around... And As for Cully? Well the meltdowns do not seem much different than usual. I do not see the mood swings in him... Oh, and as for the seizures? We have had seizures every day..
UNTIL TODAY ! NOT A SINGLE SEIZURE TODAY..... DAY FOUR !
Maybe we really did find the trick.. I know from all the other things that this does not mean anything yet but it sure is a nice feeling to see a day come by without a single seizure.
Cully is beginning to get "Pumped Up" Like a bodybuilder and not like a fruit or a pudgy ball like we thought. My boy is already huge for his age and with this drug he is starting to resemble the sort of kid you would not want to meet in a dark ally behind a Chucky Cheese. His hugs are all the better each morning as he now runs into my room and throws himself on me and squeezes me with brute force... and it feels soooo good too.
Douglas continues to be our biggest helper. This boy comes home from school and is there at every second just waiting to help with Cully. Change a diaper, play football, just sit aside Cully and listen/talk with him. He really enjoys it too, not just something he feels he needs to do to get our approval. His connection to his little brother is like nothing I have ever seen. Doug is awesome in so many ways. SO a huge public "THANK YOU" Doug...
Cully returned home today. He has started the ACTH treatment and is doing well. He is in a very unusual happy mood to the point he is just down right giggly and lovey. He is giving his brothers hugs over and over again out of nowhere. He sat down on the floor, grabbed his brothers Detroit Tigers cap (GO TIGERS) and put it on his head sideways and grabbed the Ipad. He opened up YouTube and said "HIKE HIKE" while looking for football videos. (His Dougie has him obsessed with football). He then put on "Pop goes the weasle" stood up, got his two big bro's to hang by his side and said " HERE IT COMES" "HERE IT COMES".. and then???? yep.... POP GOES THE WEASLE !. Then Cully put his favorite song/video on... "Some Nights".. He stood up and performed an ENTIRE choreographed dance routine to this song. This was complete with all the facial expressions of a constipated politician and the hand gestures to go with it. Cully has even done something none of my children have done yet. He held a perfect rhythm with the beat and his foot stomp and hand clap.
While at the hospital Cully found a nurse that he was quite fond of by the name of Becka. She was a wonderful young lady that reminded me so much of my daughter Brittany. Cully made good friends with Becka and each time she came in and took vitals, or did much of anything Cully would hold up two thumbs and tell her "Good Job".... Becka had to take a blood sugar test and poked Cully's finger. This was something Cully did not appreciate much and he wimpered and wined. Once the poke was done Cully held up his thumb and said in a shaky cry-winey voice....."Good *sniffle-sniffle* Good Job"
Mum and Cully are at Detroit Children's Hospital right now. ACTH begins this evening. We arrived this afternoon with a VERY CRANKY Cully. He has more or less had one continues meltdown all day.
We learned how the give Cully the injections today and I practiced on an orange. One of Cully's team members gave us instructions on what to do, what to look for and what sort of side effects we may see.
Come on already and knock it off. Geez "Life"... You can't be serious? You are going to be this much of a pain?
Why don't kids come with removable battery packs?
I wonder what the other families were thinking at the play place when I pointed and shook my finger at Cully and used my stern voice to say "YOU CAN NOT USE AUTISM AS AN EXCUSE TO ACT THIS WAY" !
I have no idea what to do.. or even how? The only idea I have in my head thus far is... If Cully does not learn to stop doing "this or that" right now he probably will keep doing it forever. ?? Maybe I'm wrong? Maybe right?
Status : seizures as usual. Oblivious to the word s "No" or "Stop".
The meltdowns become more crafty as he will now refuse to make eye contact with me and has the reasoning ability of one of my daughters at age 15.
The ACTH arrived this morning. I feel like a scum having my elderly parents take possession of the shipment of drugs but I had a full day of meetings and work and Julie had to take Cully to a group session today. Mom and Dad took the shipment at 10 am this morning and placed the ACTH in the refrigerator as if it were nitroglycerin. And at $35,000 it may as well been.
Cully will visit Detroit Childrens Hospital with Mum on Tuesday to begin the drug. All we can do is cross our fingers.
Cully continues with his usual seizures but seems to be happy short of yesterdays melt down. This kiddo is smart and sometimes I wonder if he is faking it all.
This short clip is of the first time I saw Cully have a seizure as well as the next day after...Simple small little thing. Who knew...?
In the clip Cully is sitting on my lap and I am whispering to him an "I love you" when it starts. You can see Cully reach for my hand and pull it over him. Just then I decide to put him down and get a better look at what was going on. I did not know it then but this was Cully wanting me to hold him while he was having a seizure. From that point on Cully pulls my hands around him when he seizes.
Yup, just had a bout of seizures again and these scared me a bit. The head nods down and is held down rather than a down and up like usual. There is also a bit of lip smacking?? or maybe like he is swallowing, unusual and new to us. After a moment with his head down he will look back up and give a little bit of a laugh or giggle *like an uncertain "hehe" as he looks at me. He definitely is aware of these seizures during and after. And this lasted longer than usual too.
NOT FAIR !!!!!!!!
Going into my angry status right now and have no one to go after.
Mum is laying with Cully right now while he goes to sleep. Tomorrow is another day.. But that saying is getting old.
TWO DAYS !!! TWO DAYS!!! No explanation why, no changes, no nothing but TWO DAYS SEIZURE FREE !!!!!!
SAWYER TURNS SIX YEARS OLD SUNDAY !! And Douglas, Cully, and Mum and Dad are all going to have a fun weekend doing?? With Cully only days from his new treatment we can not afford to have him out in the cold or near germs. We are still trying to figure out just what we can do for Sawyers birthday and when we ask him he tells us he only wants "McDonalds". Ewe !
I have had a few great conversations with people about the ACTH treatment and we are feeling a little less worried. Thank you to all of you for the information.
Call from neurology department came in at 11:30 this morning. By 5:00 this afternoon we had all tests and blood work done for the ACTH drug. CBC, TB, and even a chest x-ray. As we explained to Cully's medical team.... At any moment that they ask us of ANYTHING we will drop everything and get to it.
Now we just wait for the time to admit to the hospital.
How desperate must we be to be excited about using this drug?
162 children with infantile
spasms were treated with ACTH at the Children's Hospital, Helsinki, and at the
Aurora Hospital, Helsinki, during 1960--76. In a large proportion (37%) of the
children the treatment caused pronounced side effects, and the mortality was
4.9%. The most common complications were infections: septic infections,
pneumonias, and urinary and gastrointestinal infections. Other side effects
were arterial hypertension (11), osteoporosis (2), hypokalaemic alkalosis (2),
and other marked electrolyte disturbances (10). In children necropsy showed
fresh intracerebral haemorrhages. Four children developed oliguria and
hyperkalaemia during and after withdrawal of ACTH. One of them had tubular
necrosis confirmed by renal biopsy. Infections were significantly more common
with large doses (120 units) of ACTH than with small ones (40 units). It is
concluded that side effects, even severe ones, are more common during treatment
than had been assumed. Careful watch is important before and after treatment. The
benefit of very high dosages should also be reconsidered.
Received the phone call from the doctor today. He explained that Cully's bloodwork showed an abnormality that triggers low blood sugar. The basis of the Ketogenic diet is to starve the body of sugar and for this reason the diet would not be safe for him.
NEXT ?
Cully will be starting the ACTH drug and will continue the VIGABATRIN while being weaned off the ONFI slowly.
The ACTH is an injection that we will give Cully at home after a thorough workup at the hospital. Julie and Cully will spend an overnight in the hospital while he begins the treatment. This is the enormously expensive drug that we were nervous about weeks ago.
Now we have another option to stop the seizures, not a moment too soon either..
Cully had a very bad day, or at least the first half was rocked with bad seizures from the moment he woke up. While I didn't see it Julie says Cully was downstairs for his morning meds and he began a hard cluster of seizures. He started calling for me and trying to climb the stairs to come to me. Julie tried to help but he would not let her and he worked his way right up to me on his own, seizures and all. Luckily they stopped when he got upstairs.
I took off early and Cully and Daddy got to hang out together...
On our trip to the mall we discovered what gets Cully excited. ROLLER COASTERS ! This was a side of him that we had not seen before. While at the arcade in the mall Sawyer and his lil bro took a ride and Cully could not contain his laughter. Each time the coaster topped a hill he would let out in giggles. And at his growth rate he should be able to ride all rides at the park by next year !!!!! OK, maybe this will not really happen but in his heart Cully is a coaster dude like his Daddy....
Seizures come and go. Nothing new to report just yet but we should have the big news tomorrow or the next day that will tell us what treatment or ? will be next. Stay tuned......
. Only a few tiny seizures today. Nice nap, fun with the brothers, a trip to Fenton for an early meal with Gramma and Grandpa, and a game of pinball too. Cully did very well while eating out.
Dr gave a thumbs up to something that will help with sleep.
Cully getting VERY angry that the goat will not "MOO".... son, we need to talk.
Call from Cully's team explained that his bloodwork came back with a genetic abnormality and that at this time Cully can not do the ketogenic diet. So once again we need to wait and see what that means, what can be done, and what is next. The wait has nothing to do with anyone dragging their feet or ignoring us it is just part of the whole process and at least we have a fantastic team working to help Cully. The geneticist and Dr Chugani need to meet and discuss what is going on and then we will be notified. There may still be a chance for the Keto and if not that perhaps we may have another drug to try. The Dr has increased Cully's Onfi dose in hopes we might see some change.
Seizures were back to normal counts today.... Sooooo glad of that.
Todays "Cully fact of the day" Blue crayons remain blue throughout the intestinal track to the diaper...
Here we go. Today has been about the worst yet. A day filled with seizures. About the hardest seizures I have seen yet too. There has been no change in Cully's diet,sleep, or medications to trigger these. Today's events have been no more than smiles, hugs and loves, a nice relaxing nap and snuggles.
We still are waiting for test results and can not start the Ketogenic diet without them. We did have a visit with the neuro phych in regards to the autism. The doctor determined that there is a need to have a respite care worker visit with Cully once a week for a few hours. I think the need seen was really to give a few hours to mum to breath and get things done. Cully requires attention 100% of the time. If he is out of site he is on the counter, in the stove, climbing out a window or something even more dangerous. Mum takes care of getting the boys off to school, the house, the doctors visits and insurance companies. She keeps the food in the house and cooks, cleans, and still finds time to spend time with all of us. All this with Cully under guard the whole time. The boys help out alot but its really all on mum. I leave for work each day and my efforts are hardly a drop in the bucket.
The evaluation visits with the neuro phych were perfect as while there Cully escaped everyone and in a split second he was on an elevator with buttons pushed and the doors closing. He also knocked over a table, grabbed a can of Patato chips off the desk, drew all over with a marker, ate a few marbles, and broke the doctors glass decorations. They had a front row seat to Cully and a day in the life of our home.
A couple other things I failed to post over the past couple weeks..... Cully got his long hair cut off and he looks great.. we also took a family trip to the cider mill.
Well Cully had a rough night. After he woke in the middle of the night as he usually does his mum went in and slept with him. A while later I heard Cully yelling and kicking the door and the wall and throwing toys. When I went in I found him very upset and he even hit his mommy. A real hit too. I spoke to him, told him to relax. Took his stuffed animals and laid them in his bed and covered them up with blankets. Looking at Cully and explaining that it was night night time and we need to get his babies to bed and him too. I got a thumbs up and he crawled into bed and got tucked in. Mum and he slept the night away.
Mum and I think he was not awake until shortly after I went in the room as his behavior was unlike Cully even when he is truly upset. Cully has began to have terror attacks occasionally and I think these are due to his medication and last night is just another part of the journey.
After Cullys little event I was unable to sleep the rest of the night so I went to the office and wrote his doctor an email asking if there was any chance we could take Cully off the Vigabatrin which is the high risk drug he has been on for some time now. That letter went out at 4:30 am and it was not long before the wonderful doctor replied to me with the explanation of why we can not stop the medication at this time. I have a lot of faith in Dr Chugani and will follow his recommendations.
Cully has been having hard seizures today. Multiple clusters with no pattern. All you can do is watch and wait for them to stop. My intentions today were to take off to the cabin for the night with just Sawyer so he and I could have a chance to do father and son stuff with no distractions for 24 hours. Just not a good time to leave with mum under so much pressure and Cully not having a good day.
On another note Cully is still using words and even came to me this evening to let me know he had to go potty. This is a very good thing. I have had every conversation today with him begin with a please, answer with an OK, or end with a thank you. Again, this is not what we are suposed to be seeing with the IS.
Cully, mum needs a break and I don't know how to give it to her so for the next couple days everything will go great OK?
Cully made another visit to Detroit Children's Hospital this week for tests in prep for starting the Keto diet. Julie will be spending about 4 days in the hospital with Cully once the go ahead is given for the diet. Seizures have continued but Cully just continues to developmentally improve. We are structuring sentences now and working on new exciting dance moves. He is very music oriented.
Sawyer, Cully's five year old brother, has put his thoughts into a video for Cully. This was a father son project and Sawyer came out on top as the star right there with his lil brother Cully.. Check this video out. !! Its a must see..
Cully will not be starting the ACTH drug. The doctor has prescribed the Ketogenic diet. While we do not know a lot about this yet we know it has been used very often with IS and we also know that it is a big undertaking. Nervous we will not do this right and I do know that just a single cracker, bite of a cookie or anything at all not exactly perscribed will mess the program up.
Now, how do we pull this off with a child that eats more than the rest of us and also eats anything he can find. Like crayons, bugs, paper, etc....?? Having the other kids around is not going to help either....
On the other hand it is not a $40,000 drug either....
ACTH is the next treatment and we will begin the treatment most likely within the next handful of days. This is an injection that Cully will get at home after his first round and evaluation at the hospital. At a whopping $40,000 per vile I am having nightmares of dropping one. We know little about this treatment but we have learned that Cully will have to follow a special diet while on the meds and we will have to keep Cully far away from germs. This will not be easy as Cully puts EVERYTHING in his mouth. It will mean we will need to regulate where we take him which is very hard right now. We just want to do everything we can with Cully right now and have him absorb everything... Many other children have been on this treatment before us and there are so many out there that can help us learn what to do and not to do, and the team working with Cully will no doubt be certain to give us much more information as things get going.
Cully continues to increase in his seizures but also increase in his development. That's NOT how this thing is supposed to work according to the journals, doctors and the understanding we have gained of IS. I'm not above understanding that everything can change at any given moment but Cully is doing very well to learn so many new things each day and mum and I make a good team. We are going to do all we can to take advantage of the time we have in teaching him not just words and such but even more importantly to act and react appropriately.
The patients project is going very well. Deep breaths and relaxing when upset. Dad can not even do this well. Cully's words are being used very well too. Please, thank you, OK, no thank you, hot tub, outside, airplane, puppy ... A few new words too like IPad, cool, belly, hey, and many names. Another thing he is starting to master is the understanding of NO. Only two days into this but speaking to him with a softer voice and talking to him with a "Cully I said no, do not..." seems to be working where as before a no would not even be heard by Cully. Not 100 % but darn good.
I am going to put a video clip together soon and post it here showing just what the IS seizures are. They are surprisingly mild to what is in most peoples mind and it is hard to imagine how terrible these little things are. Not much more than a little nod or twitch yet these things take away our babies.
I figure I can be selfish and post about me once in a while.... This is my day so far...
It is only 8 in the morning and I am still in bed.
Sawyer crawls into bed around 6am to tell me about his zombi dream and to snuggle. After his eyes closed I walked to the other side of the bed to snuggle with Jewels for a moment but as always, the slightest touch between us always wakes the beast and a call for Mommy sounds from Cully's room. The time..6:20 am.
Cully slept for an amazing 9 plus hours. This is very rare. I went and got Cully and led him to our bed and there he found his "YourYer" and mommy. The four of us snuggled under the covers for a minute before the two boys started wrestling and playing. Cully then used his words very well and asked mum for help opening the door and he wanted to eat eat. And off they went.
Cully returned to my bed and climbed up to snuggle tight with me. He knew his seizures were on their way and he just wanted to be here in my arms. He laid right on my right arm and my chest for just a moment before they began and besides the twist and pulls of his seizures he did not move at all. Five minutes later the seizures are over and Cully is on his way back down the stairs for more waffles.
I grab my iPad and quickly check for updates on little Will, a boy with IS that just had his brain surgery yesterday.
My wife brought me a glass of freshly squeezed orange juice and a bowl of oatmeal and fruit and here I sit in my bed listening to Thomas Newman on my IPad and sharing the first two hours of my day on this blog.
It is 8 am. What a boring post huh? But I love it. Even with all that is certain to happen today I am happy here. Before all the children yelling, the bickering and chasing Cully... I'm happy.
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