I fall for this every time.  During Brandon's hospital stay we decided to take another round looking at Brandon's genetic profile to determine any possible diagnosis.  I was thinking that I am close to giving up on a diagnosis.  In a way it really does not matter, except if his condition is worsening.  Right now Brandon is doing great.  But in the hospital I wasn't sure, soooo I fell for it again and set myself up for another possible diagnosis or issue.  Sure enough, Brandon's doctor called today and they have found a genetic deletion.  One they have not found before.  And one so rare they don't know that it means.

For those of you looking for a diagnosis, I have spent the last 3 years of Brandon's life reviewing genetic information, having more tests performed on Brandon each year as the genetic industry has evolved and finding more possible rare conditions maybe associated with Brandon.  I will add this one to the list.  But it never changes that when I get a new diagnosis or discovery of a new possible condition, I start all over with the loss of dreams for Brandon, anger, depression, searching for what it means and then acceptance.  It is very exhausting.  And today I took another path down this bumpy road.  So I have to whine a little for now.  After I have read every website I can and talked to everyone I know, I will accept and move on.  But after 19 years the process never seems to change.

I think margaritas are in order this evening.

More later
Leah

A little update.  The last week in May Brandon and I spent Tuesday through Thursday at Dell Children's Hospital Epilepsy Monitoring Unit.  We went back early Friday for Brandon's clinical trial visit.  So perfect timing.  It was Brandon's last week at school and a short week for me.

Brandon with therapy dog 

Brandon started out the memorial day weekend with a cold.  I knew it could get worse quick and I didn't want to reschedule the whole week, so thanks to all you mom's for all those cold cures.  I don't know which one did it, but it knocked out Brandon's fever and cold by late Monday (memorial day).  Brandon and I got up at 4:45 am and left for the hospital after the medicine routine around 6:00 am.  Brandon checked in for an MRI under general anesthesia. After the MRI the Epilepsy Unit prepared Brandon for the EEG by placing the nodes on his head.  He went in for the MRI at 7:00 am but the hospital staff didn't call me back until 10:30 am.   We then headed to the hospital room, our home for the next three days.  The good news.  Brandon had no clearly defined seizures, but he had activity indicating he is a strong candidate for seizure activity.  The good news about that, is that Brandon's seizures are now fairly well controlled just on Keppra.  The physicians removed Brandon from all medications except Keppra the first day, then off all medicines.  We decided that Brandon's activity was well controlled with just one drug (Keppra) and the decision was made to remove Brandon from the other two seizure drugs.  Really the only way to take this kind of risk with seizures is in the the hospital.  Brandon has now been seizure free since his release and he is a different kid.  Much more awake and engaged.  

I on the other hand, have just now recovered.  I just cant spend 1 weekend prior to a hospital admission with a sick kid (Brandon), then go inpatient with Brandon for three days and have little sleep.  It really took all my energy.  I remember plenty of 3 week hospital stays with Brandon when he was young with little or no sleep and I seemed to recover much quicker in my 30's.  Now I am in my 50's and the recovery time is much longer.  But it was worth it.  Having Brandon on only one medicine for his seizures is great.  Having him seizure free is even better.  


Getting to the place I am today of understanding the results of this hospital visit was a little challenging.  So, I have to regress here a little.  One of my pet peeves with doctors is their attempt to give you results when you are not 100%.  Over the years I have tried all kinds of tricks to help with this.  I have brought friends with us to listen to the same thing I am listening to.  I have brought a tape recorder.  I have brought a video camera.  Some doctors don't like to have the conversation recorded or they are very careful about what they say when you record.  I have had some of doctors say they don't want to be recorded.  So, Dr Clark choose the last day to discuss the results of the MRI and the EEG.  But I was like a patient who had just come out of anesthesia and the physician wants to talk about the procedure he/she just performed.  I was pretty out of it.

On Friday after the hospital stay we came back to the hospital for a clinic trial visit and I asked for copies of all the tests, read over the reports, googled over the weekend and decided its all good news.  The doctor still wants Brandon to come back for a sleep study because he may have some apnea events at night, but all in all his EEG looks better than any of the EEG's of over 19 years.  The other important thing I try to do over the years, is to keep all important medical documents concerning Brandon myself.  I have books of records from 19 years.  But I have three binders of important records.  These new records will go into the three binders for the future.  And maybe sometime in the near future I will have all of these as an electronic medical record.

Transition news - Brandon and I have moved back into the Dripping Springs house.  We are going back and forth to the condo to clear out enough of my stuff to allow someone to stay with Brandon next year as he transitions to a more independently living arrangement.  Part of the success for living more independent is getting Brandon's seizures under control.  So with his seizures more under control, this will only make transition easier for everyone.

Brandon is at VSA Arts Camp for June and loving making movies and music.

More transition news to come.
Later
Leah