TL;DR
My 5 year old son started suffering from epileptic fits since June 2015. We live in Bangalore, India and I work for an IT company and my wife is a home maker. As parents having never seen or heard of epilepsy, we struggled for months to get the right diagnosis. When a major tonic-clonic seizure knocked out my son's consciousness in October 2015, he was admitted to the hospital. An MRI showed tumor in the right temporal lobe and underwent a surgery. The surgery did not get rid of the seizures even with the post-op anti-epileptic medicines. After months of assuming that the first surgery was all that was needed, a second MRI was done in August 2016. Doctors said there was a significant residual tumor left behind that needs to be surgically removed again. In September 2016 a second surgery was done that removed the Dysembryoplastic Neuro-Epithelial Tumor (DNET).
As of now, post the surgery on Sept 2016, my son is seizure free. His medications related to this have been stopped from March 2019.
How it all started
Shreyas was born in December 2010 after full term pregnancy and a c-section. He had healthy birth weight and other vitals. Apart from the usual fever and cold, he did not have any major health issues. However, a couple of times, usually during March months, the fever used to be very high - as high as 104° Fahrenheit. Like every pediatrician, our doctor prescribed medications to help with the fever. Otherwise a healthy boy, started to go to playgroup and nursery right by the side of our apartment in Bangalore. He hit the right milestones of speech, walking, learning, etc. He showed a lot of energy which we sort of felt proud about, until we started getting a feeling that it was very difficult to make him sit or handle his energy outflow. We were not able to always differentiate if he was more energetic or more restless and hyperactive. He would easily get provoked while at play and burst out in anger. While some kids may start crying when other kids call them 'a bad boy', my son used to get angry in that situation. While this may look otherwise a personality trait that any other kid might have, we always found it hard to manage.
As a parent it is not easy to accept that our boy is indeed hyperactive or aggressive. Most of the time we thought, 'boys are boys' and just that he is a bit more energetic. But looking at my kid now, we could easily differentiate the restlessness that the repeated seizures caused him. At a high level, some of the things we had noticed were -
1. As soon as he gets up from the bed, if he calls 'mom' while still on the bed, she better be there in the next 5 seconds; or else.
2. Ask him to do something you always ask, like, 'go brush your teeth', that's it. If he is not in the mood to do so, he might hit you with whatever he could find nearby. Not always, but you never know what will cause his mood swings.
3. For no apparent reason than fun, he would keep pinching his mom while sitting by the sofa and watching cartoons. She better cooperate and get pinched. Once when she refused, things escalated pretty quickly and in the rage he bit her too. These were probably one time instances; though intensive and scary for us as parents. And was pretty much always targeted toward his mother and not anybody else.
4. Picking up fights in the nursery and kindergarten every now and then. Though nothing serious happened, we always had fear lurking in our minds..
5. Even when he is not actually angry, he was restless to the extent that he would just keep jumping on the sofa, climbing on top of the dining table, climb the windows and try to hold on to the bulb, try to switch on/off lights using his tongue (yes, tongue).
6. Tell him a good joke, he could laugh for 10 minutes straight and retell the same joke verbatim and laugh all over again for 10 more minutes.
Now when we ask the doctors, they say the behavioral traits were actually due to the pressure inside the brain due to the DNET.
On 1st June 2015, while he was playing, he suddenly stopped and held on to his stomach and stretched out his legs and let out a feeble cry as if it was from a stomach ache. He was not hearing us call him or was in pain not to be able to respond. This lasted for about 30 seconds and he was back to his usual energetic self in a minute. He wouldn't talk about it when we repeatedly tried to ask him what happened. Now we know that was his first complex partial seizure.
Initial attempts of diagnosis
We witnessed the first epileptic episode first-hand and our immediate thought was, it might be kidney stones. Having seen him hold on to his stomach when in pain, it worried us. The next day when the same happened twice, we immediately took him to the family pediatrician, Dr KK, we regularly visited. When examined, my son did not complain of any stomach ache at the moment and was energetic enough for the doctor to easily shoo it off as an upset stomach and cannot be kidney stones as the boy did not complain of any pain when examining the stomach. Usually if it is kidney stones, soreness remains when gently pressing the stomach.
By a week's time, we could witness an average of 2-3 episodes of complex partial seizures that manifested as epigastric pain but none of us including family and friends could even fathom what it was.
Let alone friends and family who have not seen anybody with this problem, even the doctors did not even guess what it was and ask us to get a MRI done. We went to another pediatrician, Dr VR, who also ruled out kidney stones. Also she was way too much distracted by my son to even talk to us freely. Finally she gave up saying it might be psychological in nature given his hyperactivity.
In another couple of days we saw ourselves in a hospital consulting another well known pediatrician, Dr RKH. He asked us to get a blood routine done to rule out urinary track infection (UTI). He also suggested to get a pelvic scan done to rule out any related issue. In a week's time the reports came out and cleared my son of any UTI or pelvic related issue. Back to square one, Dr RKH seeing my son in his usual energetic form thought that it might be more of psychological nature. But by then, we had seen the episodes occur not only during the day time, but middle of the night when he was fast asleep. If it is purely psychological, chances are it usually manifests during day time and not repeatedly during both awake and sleep state.
We had a family friend who closely knew a gastroenterologist and recommended to visit him. Dr SH usually sees only adults but accommodated to give an opinion. Having seen the reports and my son, he was also only able to rule out anything related to stomach, but could not offer any other help.
We were back home with having seen four doctors, with sadly no diagnosis or suggestion to get an MRI done or even a remote hint that it might be something related to the brain. The main issue we faced was that, while we visited the doctors, my son did not get the seizures at all and he was his usual joyous self. We then decided to start recording the episodes on our phones as soon as it started so that we could show it to the doctors.
By now it was more than a month and a half of episodes and many sleepless nights. Googling the symptoms did not help as our search terms were more focused on stomach related issues and never seizure related.
Attempts of Alternate medicines
Having not got any concrete diagnosis from any of the four well known doctors, Googling became a major information source. We started thinking he might be having Gluten intolerance. Immediately we took him off all the gluten containing diet. For the next one month we continued to control gluten in his diet, but continued to see the seizures occurring not less than 4-5 times a day/night. He was still growing more and more restless, angry, running around way too much. This was more apparent when we compared him with the kids of his age group within and outside our apartment.
We also got a hint from another therapist that such behavioral challenges in kids might happen due to deposits of heavy metals like mercury in the body. Easy natural way of getting rid of heavy metals in the body is by consuming Coriander leaves or Cilantro. So, my son went through the pain of eating Cilantro for weeks. It is indeed a good way to flush heavy metals from the body, but my son's problem was not resolved by that.
In parallel we explored Homeopathy with a prominent provider Dr L. Compared to the allopathy doctors, she seemed more patient and composed despite an increased restlessness of my son and more than usual disturbances during the visit. He just wouldn't sit in the clinic, but jump around, climb up the table and keep shouting/talking and distracting. Regardless, Dr L prescribed a couple of medications like Belladona extract.
Another in-house visit by another experienced Homeopathic expert Dr AR also did not seem to help. He also gave the same Belladona extract and a few immune boosters to see if it helps. It did not.
Change in Places
With no diagnosis by multiple doctors, allopathy or homeopathy for more than 3 months now, we had begun to think it might actually be psychological and not physical. Moreover, there was no fever that followed the pain or even indications of anything physically wrong otherwise except for the repeated minute long episodes. Since he also showed hyperactivity, it further strengthened the assumption. We didn't have any reason to take him to the emergency room (yet) since by the time we took him to a doctor, he showed no signs of stomach ache or anything else.
We wanted to see if a change in place will bring about any notable difference. We visited my in-law's place for a few days. Then to a few holy places like Mantralayam, Sigandur, Varadahalli, Ukkadagathri, etc. We noticed that regardless of the place, the frequency kept on steadily increasing but with no pattern to trace.
Also, during the seizure, my son had started holding his head and sometimes banging it with both his hands, but continued to say it was originating in stomach more specifically from the navel region. Except for that, he hesitated to talk about it and more probing only agitated him and made him angry. By now, with slight changes of the symptoms of holding his head etc, I had gotten to a stage in googling that it might be what is called 'epilepsy'.
Admitted due to Emergency
While my exploration continued, we tried to get informed opinion of any doctors we could get hold of, doctors who are either distant relatives or recommended by friends. We also continued homeopathy medicines and visited Dr L regularly. We were ready to do anything that might help reduce his symptoms.
However on 19th October morning 9AM, my son went to a neighbor's place to play. While coming back home, he was not talking. Within minutes we realized he was not responding to anything we did. A sudden panic arose and we started trying to make him talk. His eyes were open but by now had stopped walking and staring top left aimlessly. Knowing his problem, we immediately started to a nearby multi-speciality hospital to seek help. En route, his eyes had rolled upwards and had lost total control of his movements. He was hot with fever and by the time we reached hospital was fully unconscious. He was taken to the emergency room where the doctors have him anti-epileptics IV and lied him on his left side. He began to get jerks on his left side, arms and legs. In about 40 minutes of time, he regained consciousness and started crying. Doctors recommended admitting him and keeping him in observation for a couple of days.
By now, we knew it had got to do with epilepsy and that an anti-epileptic revived him from his unconscious state. Dr RKH who had initially thought this might be psychological was now seeing him and knew that it might not be so. Dr RJ, a neurologist in the same hospital was consulted. Looking at the case and the videos we now had on the mobile phones, he recommended to get a MRI done. However, our 5 year old boy was back to his old restless self and kept on asking to return home. There was no way an MRI could be done while he was awake. Neither it could be done when he is asleep because he might wake up any time due to the sound and create havoc. So it was decided to be done on sedation. Syrups to help him sleep did not help at all and it was decided that it had to be done on general anesthesia. We waited for the recommended 12 hours on fasting to get him ready for MRI on anesthesia. Next day, the report came our and Dr RJ showed us what looked like a tumor in the right temporal lobe. It was of the size of a golf ball and was putting pressure in the internal brain. With only the MRI there was no way to judge if it was benign or malignant. Neurosurgeon Dr AN and his team looked into the MRI and suggested we do the surgery immediately.
Note, we had already admitted him on emergency basis and about 4-5 doctors of the prominent hospital had taken a look at the MRI report and suggested the surgery. We did not seek any further opinions outside of this hospital. Also neither a Video EEG was performed nor any anti-epileptic medicines were tried for a few weeks to see if it would help. We did consult another doctor who happens to be a distant relative over phone and he also agreed that surgery might be the right way to go.
The First Major Surgery
We were skeptical about the immediate surgery, but we knew nothing better about the situation at the time. Now, when we look back, we feel that a Video EEG and trying anti-epileptics for a few weeks should have been tried.
The surgeon's team looked very confident and said they will try to do their best in the surgery. They also told us about the risks involved such as some amount of memory loss, possible difficulties in learning abilities, recurrence of the same seizures etc. What they appraised us about, looked pretty standard procedural thing to do in a situation like this. On 23rd Oct 2015, my son underwent Right Temporal Craniotomy surgery on his right side of the brain from about 9AM to 5:30PM. When he was brought to the ICU, he already had gained consciousness partially and was crying in pain. The doctors said, they have tried to remove as much of the tumor as safely possible and we will have to wait and see of the seizures return. If they do, anti-epileptic medicines should control it.
We sighed. For a day. Following day after the surgery, a brief seizure episode occurred. He was also twitching his lips on his left side. Doctors AN and his team as well as the neurosurgeon RJ said that should go away in a couple of days. Twitching did stop in a day or so, and as expected, his eyes were swollen due to internal draining as in any brain surgery. Eye swelling took about 4-5 days to completely go and was discharged from the hospital after nearly 10 days.
Stitches were removed and dressing was done for a couple of times over a period of 3 weeks. It was very hard to manage to look after my son not scratch the stitches. For more than a month he slept turned one side.
Post Surgery Epilepsy Despite Medications
The part that was removed in the right temporal lobe during surgery was sent for Biopsy to Mumbai as well as NIMHANS, Bangalore. The report came out a couple of days later that the sample contained what was called Focal Cortical Dysplasia (FCD Type II a). This is essentially an incorrect growth of brain cells and wrong wiring as the doctors called it. They also termed it idiopathic in nature, which means there is no known reason why it happens. It is congenital (by birth).
The neurologist Dr RJ started my son on three anti-epileptic medicines (Carbamazepine, Phenytoin, Clobazam) post the surgery and discharge starting November 2015. We started maintaining a dairy of the pattern and occurrence of seizures if any. We soon realized within weeks that there was no significant difference in the frequency, though with the anti-epileptics, he was no longer screaming as much. It was more of just holding his stomach and complaining of stomach ache but was now at least hearing us and trying to respond to us 'during' the episodes. But the frequency of episodes did not come down. But now it was mostly during the day time and rarely, probably once a week, during the night time while he was fast asleep. His hyperactivity and tantrums did not subside. He continued to be mostly agitated and rarely we saw him sit with a toy or friends and enjoy.
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| Events in the Dairy plotted by date |
Attempts of Music Therapy and Post Op MRI
A need for second surgery never crossed our minds and neither our neurologist mentioned the possibility. I was now trying to get information on various online forums to see what other parents have tried. Many were experimenting with different titration of the same drugs or different ones. Some saw improvements while others saw the need for surgery. Many of them saw good seizure control post surgery while very few did not.
One such article mentioned about the Mozart effect. It is essentially making the epileptic kids listen to Mozart's K448 played on two pianos for about 20 minutes a day. I immediately downloaded a few clips from the internet and tried to make my son listen to it. Of course, he wouldn't sit and listen for even 2-3 minutes straight. So, I did the next obvious thing. Make him listen to it while sleeping. Even our neurologist agreed to this attempt having previously heard of experiments mentioning it had helped a few. However, this would not mean discontinuing any medications, but in addition to it. So, we, along with my son listened to Mozart play the K448 endlessly in a loop for like 8 hours a night for weeks. I can now hear the K448 note play inside my mind as I type this paragraph! It did seem to help too. None of the night where we played it saw even one episode of seizure to occur to disrupt our sleep. However, the music itself had started getting on to our nerves. Even the mornings or afternoons when we played it, the seizures were less. But once we tried stopping it, the number of episodes shot up, in fact doubled. Was it naturally increasing or did it happen because we stopped playing K448? We'll never know.
But the increase in episodes did force us to see another well known neurosurgeon Dr V. He looked at the case and immediately said, if the focal cortical dysplasia area had been completely surgically removed, seizures would not reoccur. This was the first hint for us that another surgery might be on its way and that the first one had not actually helped.
Now that we knew this was due to epilepsy and the surgery was also performed, we continued researching for home remedies and alternate medicines that might help ease the episodes. Epsum Salt bath (we were not comfortable in trying to ingest it orally; so only salt baths were tried) was one such thing we tried for a few days. We didn't see much of a difference with it though.
During our next scheduled visit to Dr RJ, he recommended to get another MRI done, since it was not well over 6 months since last surgery and neither the surgery nor the different combinations of drugs had helped. In July 2016, we got an appointment for the MRI which was again supposed to be done on anesthesia. The report came the very next day and showed a 'significant residual tumor' still apparently present.
We took the new report to four different multi specialty hospitals this time and saw a combination of neurologists and neurosurgeons. By the end of August we were sure that the first operation had not gone well to the extent of helping my boy, and another surgery was inevitable. The first neurosurgeon stuck to the opinion that he did what he could do best at the time that did not pose risk to the operation. Also, knowing that we always sign the consent form and they are well covered legally, we feel we were lucky that the first operation did not do any undue harm otherwise. Rather than digging into the past, we explored which surgeon would better suit the kind of issue my son had. We finalized for Dr Ravi Mohan Rao, a well known Neurosurgeon and Dr Sujit Kumar, a well known Neurologist of Apollo Hospitals, Sheshadripuram, Bangalore. I am quoting full names of the doctors for the first time here since I do recommend them for this kind of surgery for anybody in India. There may be many others in well known cities for the same kind of surgery, but I am taking the full names of these two doctors here who were finally able to do the right thing for my son.
The Second Major Surgery
Now this time around, even though there was the first MRI, a Biopsy report from NIMHANS and a second more recent MRI, the doctors recommended doing a Video EEG for a couple of days. My son got admitted in the first week of September 2016 and was monitored with reduced anti-epileptic medicines with a IV anti-epileptic on standby. We noticed an increased frequency of the episodes and the screaming during the episodes came back as it used to before the first surgery. Now it was apparent that the medicines had only helped suppress the intensity but the first operation had not helped at all.
There was a blood test done to check for the vital stats and they found out that his platelet count was in the range of 800,000 per mml. That is pretty high given the normal range of 150,000 to 450,000 per mml. Doctors said, that can be controlled with the IV fluids a couple of days before surgery.
After 3 more days, operation was scheduled and was taken in at 9AM and the doctors came out of the OT by 1:30PM. They had removed five affected parts (Lateral Temporal Neocortex, Medial Anterior Temporal Lobe, Basal Anterior Temporal Lobe, Amygdala and Hippocampus) of the right temporal lobe and told us the Right Anterior-Temporal Lobectomy and Hippocampo-Amygdalectomy operation had gone well. He had been operated on the right side, with the same locus of the opening as before. This time however he had staples instead of just stitches. There was also a drain put from the head to remove as much drain fluids as possible post surgery. But due to the high platelet count, the blood dried faster in the drain itself and was not of much use.
Next two days both his eyes were completely shut due to swelling and even when awake he was not able to see us or anything for that matter. With the pain of the surgery, closed eyes, an IV going near the chest, it was very hard to console him in that situation for two days.
After 10 days, we went to the hospital again to get the staples removed and dressing done again.
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| Staples along the same lines as of earlier surgery |
We got the histo-pathology of the removed parts again at NIMHANS and the report concluded that it was indeed a Dysembryoplastic Neuro-Epithelial Tumor (DNET).
Lessons Learnt
Past one and a half years has been a stressful time not only for my kid but to the entire family as a whole. However, compared to the last one and half years, just the last two weeks post the second surgery is very encouraging and joyful. When I look back, I see a lot of learning that we as parents have gathered. I'd like to list them out here hoping it might help someone someday.
- Not knowing what is happening when someone is suffering is no fun. No matter how educated you are, you will only end up doing guess work. Of course, as parents we try to learn about the issue as much as possible, but it is the doctors who are supposed to help us identify the issue. I have seen in an online article of another parent's experience in US, where their kid of 5 years, experienced a seizure one day. Next day in the ER room, a pediatrician was able to rightly call it out as a seizure and recommend Video EEG to be done in the next two days. Even the surgery was done by eminent doctors within a week's time and the kid recovered well. Lucky for the parents due to the sheer fact that the doctors knew what was going on. But even in a metropolitan city like Bangalore in India, our well known pediatricians were unable to even guess that it was epilepsy and suggest an immediate MRI or vEEG. Isn't it the job of the doctors to not only rely on their past experience but also keep appraising themselves of the new and rare diseases prevalent in the world?
- Epilepsy can be controlled using medications in some cases if the issue in the brain is small and not very significant. If even after taking anti-epileptics for about a month, the seizures persist, surgery is the only viable option that can control the episodes.
- Epilepsy has no known reason why it happens in at least 50% of the cases.
- In kids alone, some amount of epilepsy intensity can be controlled by listening to Mozart K448, but that in itself cannot be a long term or permanent solution.
- If a DNET or lesion turns out to be on the right side of the body, count yourself as lucky. Having the same on the left side increases the risk of speech, body moments and memory significantly.
- Review the doctor's experience and ensure he specializes in the same issue that the child is suffering. Taking multiple opinions may take a week's effort, but it will give the right amount of confidence needed to go ahead.
- If it turns out to be a DNET, as with my son, there is less than 5% chance of it regrowing. So, at least a every 6-8 month MRI scan is recommended by the doctors.
- Request and keep a copy of the CD of the surgery. When they asked us the first time, I did not get a copy of it even though we had paid for it, thinking what are the odds we will ever want to watch our kid undergo the actual surgery. But later during the new doctor visit, they asked us if we had it, we were stumped. It never occurred to us that may be another doctor would want to see it in the future. Always get a copy of the surgery CD.
The Story So Far
After the surgical removal of the DNET, it has been just a couple of weeks now as I try to document it. As of now my son continues to be on the anti-epileptic drugs but with a lesser dose than before. He has not had any seizures, touch wood. We will have to monitor the situation for a few months. As of now, he is off his staples, band-aid and is able to walk. He remembers everything as from before and we see no difference with respect to his physical abilities.
- The better news however is, he seems to be more calm and composed than earlier. He sleeps well and it doesn't take much effort to make him go to bed.
- He is smiling and to our pleasant surprise he now sits and reads books. May be it is too early to tell and he is doing this since he is still in some amount of pain from the surgery.
- He is not getting aggressive and angry for the things he used to.
- He has had no seizures for almost 15 days now since the surgery.
- EEG has to be repeated in a month to do a regular check up and the medications would continue for a few more months, but in about 2-3 months, Shreyas is expected to be back to normal (including the hairstyle!).
Shreyas has recovered well. No seizures seen since second surgery. Monthly visits to the neurologist has continued and his anti seizures medications are continued. His restless and anxiousness has come down a lot!
Has also started going back to school with his hair style back to normal!
Update June 2017:
Shreyas is doing well with zero seizures after the second surgery. He is still on medications and takes them every morning and night. He has been going to school for 1st grade now and well adjusted to it. He is more calmer and only occasionally gets angry for a couple of minutes. Though it may seem a little bit more compared to other kids of his age, compared to his previous self, he is showing a great deal of improvement.
September 2017:
Shreyas has been going to school, albeit some difficulties in remembering what he studies. We need to schedule a EEG this month so that the medications can be titrated and reduced a little bit.
October 2017:
EEG results came out normal. Started reducing the medicines dosage. These neuro-chemicals cannot be stopped cold turkey. There is a very high chance of convulsions and seizures returning if we even miss doses. Of the two medicines, one of the medicines has been reduced 20%.
January 2018:
The first week of medicines dosage reduction saw a little bit of unease in his behavior. Everything seemed usual and he was still seizure free, but even a minor change in routine made him get disturbed. Timings of the food, if or not he wants to do something, etc mattered. As long as we keep things smooth and agree, he seemed fine. If not, he could get really annoyed, to the level that the screaming and tantrum was just not worth the enforcing our decision. Also, when he got scared, he can go silent and you could see fear gripping his facial expressions - it can even scare us wondering if something happened. In a week or two, these things came under control and he was back to how he was before dosage reduction. Now in the first week of Jan, one of the medicine dosage has been further reduced to 40%.
All medications related to this has been stopped since March 2019 and it has been 4 months now. He is completely back to normal and seizure free. Thanks to Dr Sujith, Neurologist.
Dr Sujith and Shreyas on 27th June 2019 conclusive visit.
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| Timeline of Events |
Thanks for all the support we have received from family, friends and co-workers all along.