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....
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