Hello,

My son Arjun at 2.5 yrs age ( on 26th sept 2013) was diagnosed with Ganglio Neuroblastoma (a type tumor cancer ) in the left abdominal cavity. He got operated in January 2013 after 4 cycles of chemotherapy. Post operative, 4 hrs he got a cardiac arrest. He was resuscitated after 20mins. He went in coma and was put on ventilator. This resulted in TRAUMATIC BRAIN INJURY. The MRI shows that he has got hypoxic ischemic brain damages in the white matter.He was put on tracheostomy after 12 days. He came out of coma after 12 days. He was fed by RT (ryles tube-nasal feeding tube) .Due to HIE he got Dystonia. He is on meds - Baclofen 5mg and Pacitane 2mg to control it. After 3 months, since June 2013 he started getting small convulsions. The EEG is grossly abnormal and shows myoclonic seizures which were mainly due to sensitivity to any kind of sound.They ranged from 45 -50 per day. He is not able to have sound sleep as he has jerks during sleep.He is on meds- Sodium valporate 200, Lamotrigene 50 and nitrazepam 5 and multivitamins. For 1.5 years (2013 dec-march 2015) he was on ketogenic diet but he did not respond successfully to this diet. After that we stopped this diet and shifted him on homemade food. (no powder or synthetic food).Today after 3.5 yrs he is still on tracheostomy & Rt feeds. He is 6.5 yrs age now, weigth 18 kg. He is completely out of cancer.He doesn't follow commands but moves his hands and legs. Cannot walk and talk. He responds very well to sound or when we call him, by moving his neck and eyes.He recognizes all the family members by smiling. Listens to music, rhymes, stories and responds by smiling. He cries when he is hungry or in pain. We do physiotherapy regularly.

After searching on the internet we found that CBD oil is good for clonic tonic seizures, so gave him Chorlettes Web CBD oil(Everyday Advance 5000mg) after contacting and following Realm of Caring Foundation, Colorado Springs guidelines for dosages. We started the oil on 2nd Aug 2016 and within 3 weeks the seizures increased and were completely of new type. He started getting convulsions in which he laughs loudly and raises his hands high up in the air. This continues for 2mins and 10-15 nos in a day. Through out the day he had other seizures30-40 nos. Immediately after contacting experts at Realm of Caring and our Pediatric Epitologist, we decided to stop the oil. Now they have reduced to 5-6 big ones in a day. He has 25-40 small episodes continuously after he gets up from sleep in which he will have jerks to his neck and turn it upwards back and roll his eyes up wide open.

We tried to wean him off the Rt and start oral feeding, but due to the anti convulsant drugs he has developed oral sensitivity and bleeding red gums. He is not able to deal with the food in the mouth and tracheostomy secretions, which usually results in coughing and aspiration.We feel that the seizures are mainly responsible for his partial vegetative state. Seizure control will lead to brain development. The medications are not much of a help. Please help and suggest remedies to control his seizures. Thank you very much in advance.