They're back

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.

Our friends to the East..

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..
 

Day Four

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...  

 

Just a quick update

 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"

 

 

And so it begins

  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.

  Lets hope this does the trick....

WOO... Enough already...

  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.

Did I mention he's cute though?

The drugs are here....sounds like a Miami Vice show

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.

Video of Cully's first seizure, the start of all this

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.

Dirty Rotten Stink'n Seizures !

 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 SEIZURE FREE ***

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.

TWO DAYS ****** YIPPIE !

Tests completed

 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?

Here is what we are up against....

ACTH therapy in infantile spasms: side effects.

1. R Riikonen,

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.

We Got the Call Today

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...

Cully rides a roller coaster !

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......

Having a "GREAT DAY" ******

. 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.

To Keto or not to Keto....

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...

Seizure Fest 2012

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.