Heatherwynn, Jeff, Dylan & Caleb

We are Heatherwynn and Jeff, parents to two beautiful boys Dylan (10) and Caleb (5), we live in the Republic of Ireland and one of Caleb’s neurologists is in London at Great Ormond Street Hospital.

We suspected Caleb had autism before his second birthday and our local children’s services agreed with us.  Like many other parents who receive similar news, we then began the journey of finding causes and treatments for our son.  One of our appointments was with a neurologist who suggested that we take an EEG to determine if Caleb had epilepsy.

In July 2015, just days before we were heading away on holidays, the neurologist at Limerick Regional hospital rang and asked us to come in immediately.  She wanted to let us know that there was seizure activity on Caleb’s EEG. This was being added on to his previous diagnoses of Autism, Candida/leaky gut, Hydronephrosis of his left kidney, chromosome duplication and underdevelopment of vision in his left eye.

Since then, we have given Caleb six different medications to treat his seizure activity, all of which have failed to varying levels.  Some of the side effects that have come to light included increased frequency of seizures, increased levels of candida, loss of bladder control, and swelling and pain in his joints and limbs which made him unwilling to walk any distance.  One medicine briefly paralyzed him from the waist down.

After a year and a half of fighting with Caleb’s neurologist here in ROI to do genetics test and five failed medications we learned in June 2017 that Caleb has CHD2 mutation epilepsy. CHD2 Is characterized as early onset epileptic encephalopathy and is drug resistant.

According to the doctors it is believed that Caleb was the 1st known case in Ireland, to date we know of 2 new CHD2 cases this year.

We are now on our sixth medication with Caleb, knowing the medicine continues to fail him.  We have recently videotaped him having over 40 seizures in a five minute period, and this is typical activity for him.  

In May 2018, we travelled to the UK for a second opinion from Great Ormond Street Hospital.  Further tests were recommended and we will be having those conducted at the end of June in Ireland.  Other medications and treatments were proposed but medical cannabis was not considered. We have researched the side effects of those treatments and are hesitant to travel down another dead end road that may further hurt our child.  

Without any official medical help or advice, we have used CBD oils with Caleb and they seem to have brought on the best levels of success we have experienced with him.   They do seem to calm him and even reduce his seizure activity. Members of his school team, children services and private therapist all agree and see the improvement in Caleb when he is on the CBD oil.  

This has convinced us that medical cannabis is the only next option to try for Caleb.  He has currently been accepted into a six-month trial in Montreal Canada but we are also exploring our options in Germany to find doctors that will take on his epilepsy case.




 

BASIA ZIENIEWICZ