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A CT Brain Scan at Mulago National Referral Hospital came back clear showing no physical brain abnormality. Immediately we were instructed to carry out an EEG which came out positive. Our son was diagnosed with a rare disease called Myoclonic Astatic Epilepsy (MAE) or Doose Syndrome. We immediately searched for help and information about this syndrome but we couldn’t obtain any information locally but rather through online research. My wife and I were sick with worry, but we consulted our Doctor to discuss the best treatment for Ado. She advised the ‘ketogenic diet’ as number one best treatment for MAE.
We looked for a dietist here in Uganda and failed to acquire any solely because they are too few and many of them are not in practice. I joined a facebook group page called Myoclonic Astatic Epilepsy -MAE- Doose Syndrome where a friend of mine directed me to an organisation called Charlie's Foundation. Upon visiting the page, i started communicating with Doctor Eric Kossoff from John Hopkins University who did a very good job of referring me to the Keilah foundation solely because they do out reaches throughout Africa. At Keilah Foundation i linked up with a very wonderful Dietician called Katherine Megaw who allowed to take up my son pro-bono. we have ever since been in touch and she prepared me my son's Keto which she e-mailed me a few weeks ago. We can assure you, the foods prescribed therein are expensive for us to procure in this economic period.
To take you a little back, Ado started with noticeable drop attacks where he would have a sudden loss of muscle power and sometimes his arms fly out and could be accompanied by a squeaking sound, a grunt or an exhalation of air leading him to drop to the ground lasting for about 2 (two) seconds. These are the most serious and damaging form of attacks and could happen at any time without warning; We bought a helmet to prevent him from hurting himself. He could register over forty in a day. He was initially treated with Sodium Valproate Syrup (Epilim) and we began to see some light in our son’s life, little did we know that this was to last for a week. He registered absent seizures where he could gaze into space. These were accompanied with little jerks of arms, fluttering of eyelids/eyelashes, which numbered too many to count. By end March, with increased dosage of Sodium Valproate, the jerks and absent seizures stopped.
Then myoclonic jerks set in alongside, tonic-clonics which happened every morning as he woke between 7:00Am and 08:00Am, and then he could play normally with his siblings throughout the day until the next morning. By Mid-April the tonic clonics started increasing extending through the day and they could last 60-90 seconds.
We decided to visit our General Practitioner who advised on introducing a new drug i.e. Clobazam 10mg to make a combination with of Sodium Valproate. We praised the Lord for the good days, and thanked him that not every day was a bad day. His morning was very indicative of the type of day he would have - if he only had one seizure in the morning it would be a good day - if he had more than one, it would be a long day because he would be drowsy throughout the day.
On visiting the Doctor 2 months ago, our son had reached a weight of 14.8 Kgs as usual; he adjusted the dosage on Sodium Valproate from 200mg to 300mg and maintained Clobazam at 10mg. The doctor however prescribed Epillim tabs as opposed to the usual Epillim Syrup. Our son has never had a good day ever since we started administering these tabs to him. Our son has again started suffering several types of seizure in the same patterns as before.
Firstly, tonic clonics (the standard seizures where he could become stiff) which currently occur during the night or during the day but mostly after sleep. They usually last 60-90 seconds as before and can be repeated. He has had hundreds of these.
Secondly, drop attacks. As before, there is a sudden loss of muscle tone where Ado will drop to the ground/table.
Thirdly, myoclonic jerks Symmetrical jerking of the arms, indicative of deterioration. These really tire him. Can be accompanied with fluttering of eyelids/eyelashes.
Fourthly, Absence seizures gazing into space these are also regular occurring about 10-15 times a day.
It is our belief that the ketogenic diet will give us the ability to reduce Ado’s medications and effectively bring back our son to us and remain (more or less) sane as a family. This amazing treatment, which has few side effects, needs to be offered to our SON in these early stages of the disease. Dr. Katherine Megaw has done us a wonderful job but as i said earlier, the diet sent to me is expensive to acquire coupled with the medication which is also too expensive to procure in this period of time; Transportation to Health Centers, Consultation fees to Nuero-paeds is also too high as it may require us to visit various Neurologists in different levels of the syndrome and finally Dietary fees.
I would like to use this platform therefore to humbly request for financial help from whoever is out there with the ability to help. This will help me overcome such financial constraints such that we also fully have our little boy back before he faces some developmental delays. I might be out of time but please try and understand that this COVID -19 Situation has stalled a lot of activities here as I had to stay home and take care of our son amidst the current lock down.
Micheal Musumba (Dad and Father) & Damalie Musumba (Wife and Mother)
Children
Gabriel Israel Musumba ( 6 years)
Gabriella Bethesda Musumba (3 years)
Gadiel Adonijah Musumba – DOOSIE - (1 year &10 months)
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