Written by Herman’s Mother March 2019 – 3 years post diagnosis:

Psalms 118:22 : The stone which the builders rejected has become the chief cornerstone.


His medical history: he was born at 35 weeks on 8 June 2015 via Caesarean and in NICU for 2 weeks due to Oligohydramnios (from 30 weeks). I received Celestone Soluspan injections prior to his delivery. He had jaundice but no other complications. I breastfed him for 7 months until end of January. During this time he refluxed severely. Since he was 3 weeks old I cut out all lactose and gluten (out of my diet) which seemed to have helped a little.

Herman had a cough from beginning of January 2016. He was then put on Amoxillin, Prednisolone Syrup and Adco Linctopeat (cough syrup). I also nebulized him with saline, Pulmicort and Berotec a few times. On 15 January I went back to the doctor as Herman still had this croup cough. He said I should just keep him on with the Prednisolone and Adco Linctopent.

On 25 January he developed a runny nose as well and then I decided to bring him to his Pediatrition at Durbanville Medi Clinic, because he was struggling to breath because of all the phlegm. He was admitted on the 25th of January 2016 in Durbanville Mediclinic. Blood tests showed he had the Rhino virus. He was then nebulised and on antibiotics in hospital. On the 29th January he was discharged, but while they were busy with the paper work Herman developed diarrhoea and he stayed in the hospital for another night. On 30 January we returned home. He was discharged with a small “rash” on his left ankle, but I never showed it to the doctor as I thought it was just a little allergic reaction to the name tag. A few days later he had the same rash on his thigh. But during the week he was healthy. He sat and played on his own with his toys and drank his own bottle until he fell asleep. The Friday night we realised that he have a big rash (the same as he had when discharge, just much bigger) on his lower back, but I thought it was an allergic reaction again. I gave him prednisolone syrup again and the next morning the rash was better. I took a photo which I showed to numerous doctors afterwards. The Saturday morning at 11am he started having a fever. 39.4 degrees Celsius. I gave him Ponstan suppository and Panado syrup for the fever…After 5 hours the fever was back again. Saturday afternoon after he ate he vomited (only one time but a big amount). I took him to the doctor in town who said he had an ear infection and that the rash is from the Rhino virus that he had a week ago. She gave him Zinnat antibiotics. His fever was 39.7 when we were at the doctor. She said I must just give him Panado at home and the antibiotics. At home when I gave him the antibiotics he immediately vomited again after having the first few drops of the antibiotics. I gave him the rest and he didn’t vomit again. That night after having his ponstan and panado syrup he and his sister was playing and he was chasing her in his walking ring. They were yelling and playing.

The Monday morning I went with my mother to Cape Town just to have a second opinion at the Paediatrician. On our way to Cape Town (2 hour drive) Herman ate maize porridge and a few spoons of Squish. He was “singing” when we passed the hospital. I just had to drop off my mother and then had to return for his appointment. Less than 30 minutes later he became lethargic. I immediately took him to Durbanville Mediclinic and took him straight to the paediatrician (10h30) and he only looked at him a few seconds and said I must come with him to the paediatric ward. There they immediately put him on Oxygen and while they were taking his vitals he started vomiting. Huge amounts 3 times (within 20 minutes). After that the medical nurse told me that they struggled to insert the IV-Line and that I should get his bottle from the car so that they can give him a kind of Rehydrate. He drank the whole bottle (210 ml). By then he was severely sick. He was just starring at the roof and was breathing very fast but shallow. During this time he also developed heavy diarrhoea.

  We were waiting for the Paediatrician to come back from another patient to try and insert the IV, when he came back he also couldn’t get the drip in. Then we waited for a Paediatric Anaesthesiologist She came at around 14h15 and they took him to the Pediatric emergency room and they were busy with him for more than 90 minutes. During that time they did a Lumber Puncture and the results were clear. He was so lethargic that he didn’t even cry with multiple attempts trying to insert the IV line and LP. When they came back with him to the room they said that they are rather going to sent him to the ICU. When we arrived at the ICU he started to show symptoms of seizures. It just went on for a few seconds and then it stopped. When I asked the nurse why his arms made these strange movements, she said that the infusion was just on a very fast setting and that was the reason. When the convulsions did not stop and was in full force I asked her to give him something to stop it, but she couldn’t get hold of the doctor on the phone and it took 15 minutes before she got hold of him and gave him a Valium IVI.

After that he was relaxed. Not long thereafter the paediatrician and another specialist came to the ICU and they sent us out of the ICU to treat Herman. His First blood gas showed Metabolic Acidosis. We were to wait outside for about 90 minutes and then they call us in and said that things were looking very very bad for Herman. They need us to say good bye and they wanted to ventilate him. Then for the first time that day I realized how sick he really was and that they actually did not have hope for him.
We didn’t waste time and said they should immediately put him on the ventilator. There after everything was looking good. He was fine in his induced coma and the machines breathed for him. Colour of his skin was beautiful (he had a little rash on his arms on Wednesday night) and on Wednesday they stopped the Anaesthetics to take him of the ventilator on Thursday morning. On Thursday Morning when we came into the ICU Herman showed signs of upper motor neuron damage – CT scan and EEG were done. According to neurosurgeon Corrie Botha my sons brain was “a disaster” and they couldn’t do anything for him. He would probably just lay there for the rest of his life until he stopped breathing. That Thursday night (11 February) the doctors came to us and told us that Hermans scans looked so bad that if he stops breathing through the night they do not want to put him back on oxygen. I asked them to just give us a few days to say our goodbyes. We never stopped praying and the miracles started happening, although they might look small..they are big!!! According to most doctors Herman was not supposed to be able to drink bottle, eat, and move his arms and legs with purpose.

But he was able to drink a bottle about a week after his CT scan. He had projectile vommitting for the first few weeks after brain damage. He was in ICU for 3 weeks and then sent to the Paediatric ward for another 3 weeks. It was only after about 5 weeks in hospital that doctors were able to figure out his diagnosis. We were then sent home for one week and then his rehabilitation started. He was diagnosed with Acute Necrotizing Encephalitis (ANE) which is usually caused by the RANBP2 gene. But Herman was tested for this gene and does not have it. This means that any kind of virus/infection/bacteria can cause this acute brain damage again.…we just never know when or if it will happen again. Even though a lot of blood test were done, nobody knows what exactly caused this acute brain damage. We just know that doctors said the rash that he had (and that came back more than 10 times this past 2 years) looks like Herpes. So we think the ANE was caused by Herpes Simplex Encephalitis.

We took him to St Josephs home for chronically ill children for 6 months after the Encephalitis from Mondays to Fridays. After that we took him to the Physio and Occupational therapy and Cranio and Chiropractor a few times a month.
He’s still on LOTS of medication. (Epilim, Kepray, Valium, Gabapentin, Baclofen, Nexiam, Clarihexal, Serdep) We also recently started with CBD oil. And he is on extra vitamins and minerals as well as a strict healthy diet.

Herman is also on the Family Hope Center’s program for a year now (although we are not as strict with his program) – doing reflex bags, crawling, reading, ketogenic/low carb diet, fascia release and reflex massaging, hydrotherapy, etc.

Herman still cannot sit or crawl or walk. He also cannot speak, hold his bottle or feed himself and is still wearing diapers. He is also not able to handle emotions and would burst into tears crying every time he hear somebody laugh, or when people try to speak to him.
He currently can eat pureed food – as long as we feed him, drink out of his bottle that we have to hold for him, he can move his arms and legs but it takes lots of concentration and his coordination is not what it should be. He also have much better control over is neck. So we are standing in the standing frame often, we also do Hyperbaric therapy with him, doing neck and back exercises, eye gaze exercises.
I myself (Hermans mother) was sick with high fever and a rash when I was only one year old. I was in a coma for 5 days and doctors did not have any hope for me, but I woke up (through lots of prayer) and I was fine. I just stop saying new words for a year after. Doctors did not know what caused my episode. When I was in Grade 3 I was also diagnosed with Encephalitis but also did not have any known brain damage thereafter. I only had a high fever, headache, (think my legs hurt but cannot remember clearly), could not put my neck on my chest, vomited, fatigue. In Grade 12 I had what was believed to be Glandular fever, although blood tests were never taken. This made me extremely sick for a few weeks. After I got better, I knew that whatever I had, influenced my brain as my memory was not as it was before the “glandular fever”.
I believe that we serve a wonderful God that can heal anybody and we will never stop praying for Herman’s recovery. He is already doing much better. Psalms 118:22 : The stone which the builders rejected has become the chief cornerstone.
Disclaimer: The information in this website is intended as a general information/ discussion guideline only.It should never be construed as medical advice.For further information contact your local health care provider.If you have any questions regarding health concerns, seek medical assistance from a qualified health professional. ANE International Incorporated – No. 2673652 (New Zealand).