Tuesday, 9 April 2013

The hemiparesis miracle is solved

Since our last hospital stay due to Sunny's hemiparesis I dreaded the follow-up EEG we were told he needed to have after four weeks because all test results came back negative. While the first EEG did not really show any reason for the hemiparesis I was afraid what the second one would reveal.

You cannot imagine how nervous I was when I headed to the hospital with Sunny last Friday. The time of the appointment could not have been worse; it was directly after lunch time and, since Sunny still naps after lunch, he was already very tired and cranky. But I could not get a better time spot for our appointment so we just had to rock it out somehow.

He freaked out when he saw the technician/nurse and that we were at the hospital. Hospitals scare the hell out of him because he knows that hospitals mean examinations, shots, blood withdrawals and other unpleasant things. I tried to soothe him but the combination of tiredness and fear could not be soothed. We needed another nurse to help the first one hook him up to the EEG because he was so upset. I spoke calmly to him all the time and when they were done the nurse put on some peaceful music and I took out his favourite book and began to read to him while the EEG started. All the pressure, my worries and fears really got to me and I could not stop the tears from falling. I sobbed and sobbed while trying to read and at some point was finally able to pull myself together again. Then we sat there, Sunny on my lap, reading for 20 minutes straight. He was such a good boy, calm and tired, trusting and content on my lap. I was so glad that he did so well and I was so proud of him.

Afterwards we had to wait another 30 minutes for the neurologist to check the EEG data. When he finally called us in my heart was racing. As soon as I entered the room he told me that he now knew for sure what caused the hemiparesis.

Sunny has a so-called Rolandic focus in the left half of his brain. In the first EEG the Rolandic focus was already visible in the right part of his brain but since the hemiparesis was on the right side of his body the neurologist said back then that this could not be the reason for the hemiparesis because it should have been in the left half of his brain then. Now the focus is clearly on the left side and it is quite common that that focus changes the brain sides from time to time. This means that it definitely was a seizure and now he is officially diagnosed with Rolandic epilepsy. The good thing about it is that it has a good prognosis because "most children will outgrow the syndrome (it starts around the age of 3-13 with a peak around 8–9 years and stops around age 14-18)". The bad thing is that adolescence is still many years ahead of us, so there is still a lot of time for him to have seizures again. But I try to see the good in it and I am really glad that it is "only" Rolandic epilepsy and no other, worse form of epilepsy and for that I am really grateful. But when you have a child who is already limited in so many ways you just wish he was given a rest and not more health issues he has to deal with. But this is how it is and now we have to deal with it.

We will now need to do an EEG every six months and, in case of another seizure, administer Diazepam immediately and, if the seizure does not stop within the next three minutes, call an emergency doctor. 


3 comments:

  1. Oh Joy. As difficult as the teen age years might be at least now you have some resources. Did you ask the hospital if they have a program for children who are hospitalized frequently? Boo's hospital has this great program where they go on non-appointment days and have a fun day with the doctors/nurses/etc...and do therapy play so that they are not scared. Boo hasn't needed it yet. But I like knowing it is there.

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  2. Oh Joy. While on one hand, I am so relieved that it isn't more serious and that Sunny can outgrow this, on the other hand I'm so sorry to hear that there is now one more worry and issue that you and your beautiful boy have to deal with. Kerri's idea about having a fun day at the hospital is great - that would probably help a LOT.
    Huge hugs, friend!
    XO

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  3. Sounds like a truly horrible experience. I hope that since you'll be needing to go back every six months that things get better, and that Sunny stays seizure-free!

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