Goodbye 2016, Hello 2017
We were all down with a cold so the Christmas and new year festivities were really kept to a minimum. Also because the fact that Jürgen's grandma passed away earlier in November, everything was pretty subdued with the Kloof family in Holland and Suriname. We basically just stayed home and had my mother-in-law stay with us and have a small celebration with 4 of us.
On 30th December we received news about the EEG test which were HEARTBREAKING. The news was told me to over the phone by the doctor. Basically the doctor told us that it showed that Lennox did have epilepsy.
Our whole world basically came crashing down. I ugly-cried and hugged Jürgen then immediately started researching on epilepsy. We still could not get an earlier appointment than 7 february with the child neurologist which drove me nuts (what the hell right?!).
Things seemed to get better with Lennox and we got rid of the annoying cold. However, early morning on 11th january 2017 Lennox had another seizure :( The night before (around 11pm) we already felt that he was running a fever and we gave him a paracetamol suppository. When he woke up around 5am to breastfeed, all was normal until he stared seizing again.
This time we were more prepared for it. I called out to Jürgen (who was sleeping in the other room) to get the Diazepam for the seizure and got my phone ready to film the seizure. When J entered the room we administered the diazepam and within seconds the seizure stopped. I still have that video in my phone and i hate to look at Lennox having that seizure! Hopefully it never happens ever ever again!
After Lennox calmed down and became his old self again, we headed to the hospital. We were led to see the same paediatrician (which was lucky since the hospital works in shifts, and this was the emergency departement) so that was comforting that he (kind of) knew the history. We informed him that after the 2 seizures, we did an EEG test which showed that Lennox has epilepsy.
No epilepsy??
But one thing shook us again. The doctor mentioned that he did take a look at the EEG test but the results showed that Lennox did NOT have epileptic seizures.
WTF?!?!?!?
We were very confused and angry and did not know what was going on. WHAT DO YOU MEAN NO EPILEPSY?! THE DOCTOR CALLED ME AND TOLD ME HE DOES HAVE IT!!!
To make a long story short, we found out later in the day that the doctor who called me on 30 december told me only the PRELIMINARY results. Preliminary results are results by the technicians who did the EEG test and they only looked at the results on paper. The results were later sent to the Neurologist who has the final say and she has the full picture - our story about what happened, the body temperatures, etc, etc. The Neurologist then makes a FINAL diagnosis based on the whole story and she decided that the results did NOT show epilepsy. This was put on paper and confirmed.
The Problem was that NOBODY called us to tell us this final result!! For over 2 weeks we were fretting over the whole epilepsy thing for NOTHING. You cannot imagine the anger we felt about this slip in their administration. We lost all faith in the hospital in Almere :(
When we finally did see the neurologist, she did a few tests and looked over Lennox. She asked about his developmental milestones, checked whether he used both hands evenly, played with a ball with him to see if he could run evenly and kick with both legs etc. She confirmed the results that it was not epilepsy but 'just' febrile seizure.
There would thus be a chance that Lennox would get a seizure when he gets a fever. But as long as the seizure is accompanied by a fever, then we just have to be prepared like the last time and would just have to live with it. Most of the time these seizures would go away as Lennox grows.
However, if Lennox gets a seizure WITHOUT a fever, then they need to be informed immediately and she would want to do further tests like an MRI.
Final thoughts
Recalling those couple of weeks is exhausting. Living through those weeks while 7-8 months pregnant were debilitating. I hope to never ever go through that again and i wish it upon no one.
If those weeks taught me anything, it was that health and family are everything. Nothing else mattered those few weeks.
To friends and family to gave their support during the difficult time, THANK YOU so much! Kind words and gestures really helped me through the tough period. We are glad to report that this house has since been seizure-free and we hope that it stays that way.
Our whole world basically came crashing down. I ugly-cried and hugged Jürgen then immediately started researching on epilepsy. We still could not get an earlier appointment than 7 february with the child neurologist which drove me nuts (what the hell right?!).
Things seemed to get better with Lennox and we got rid of the annoying cold. However, early morning on 11th january 2017 Lennox had another seizure :( The night before (around 11pm) we already felt that he was running a fever and we gave him a paracetamol suppository. When he woke up around 5am to breastfeed, all was normal until he stared seizing again.
This time we were more prepared for it. I called out to Jürgen (who was sleeping in the other room) to get the Diazepam for the seizure and got my phone ready to film the seizure. When J entered the room we administered the diazepam and within seconds the seizure stopped. I still have that video in my phone and i hate to look at Lennox having that seizure! Hopefully it never happens ever ever again!
After Lennox calmed down and became his old self again, we headed to the hospital. We were led to see the same paediatrician (which was lucky since the hospital works in shifts, and this was the emergency departement) so that was comforting that he (kind of) knew the history. We informed him that after the 2 seizures, we did an EEG test which showed that Lennox has epilepsy.
No epilepsy??
But one thing shook us again. The doctor mentioned that he did take a look at the EEG test but the results showed that Lennox did NOT have epileptic seizures.
WTF?!?!?!?
We were very confused and angry and did not know what was going on. WHAT DO YOU MEAN NO EPILEPSY?! THE DOCTOR CALLED ME AND TOLD ME HE DOES HAVE IT!!!
To make a long story short, we found out later in the day that the doctor who called me on 30 december told me only the PRELIMINARY results. Preliminary results are results by the technicians who did the EEG test and they only looked at the results on paper. The results were later sent to the Neurologist who has the final say and she has the full picture - our story about what happened, the body temperatures, etc, etc. The Neurologist then makes a FINAL diagnosis based on the whole story and she decided that the results did NOT show epilepsy. This was put on paper and confirmed.
The Problem was that NOBODY called us to tell us this final result!! For over 2 weeks we were fretting over the whole epilepsy thing for NOTHING. You cannot imagine the anger we felt about this slip in their administration. We lost all faith in the hospital in Almere :(
When we finally did see the neurologist, she did a few tests and looked over Lennox. She asked about his developmental milestones, checked whether he used both hands evenly, played with a ball with him to see if he could run evenly and kick with both legs etc. She confirmed the results that it was not epilepsy but 'just' febrile seizure.
There would thus be a chance that Lennox would get a seizure when he gets a fever. But as long as the seizure is accompanied by a fever, then we just have to be prepared like the last time and would just have to live with it. Most of the time these seizures would go away as Lennox grows.
However, if Lennox gets a seizure WITHOUT a fever, then they need to be informed immediately and she would want to do further tests like an MRI.
Final thoughts
Recalling those couple of weeks is exhausting. Living through those weeks while 7-8 months pregnant were debilitating. I hope to never ever go through that again and i wish it upon no one.
If those weeks taught me anything, it was that health and family are everything. Nothing else mattered those few weeks.
To friends and family to gave their support during the difficult time, THANK YOU so much! Kind words and gestures really helped me through the tough period. We are glad to report that this house has since been seizure-free and we hope that it stays that way.
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| Our family at Christmas. Lennox at 18 months and I was 29 weeks pregnant :) |
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