We were sleeping in the night when I heard her make some unusual sounds, I got up, lifted her from her cot and she was stiff.

I screamed! My husband woke up and he looked equally frightened. We did not know what it was. We have never had such an experience before. Instinctively I took her to the shower and showered her for about a minute but she did not move.

My husband immediately took her to the nearest hospital. After reviving her, they did some Malaria test and they told us she had Malaria, I got surprised because she always sleeps in a treated net.

The hospital started her on Malaria treatment but we even had to buy tape used to connect the IV fluid (drip) so I insisted we move her to another hospital, a bigger one.

She completed the Malaria treatment on IV and was discharged.

The medical personnel came home with some prescriptions, among them was a drug called phyention.

My husband told me the doctor said she should take that drug for 30 days and would stop the convulsions.

We started her on the drug. I had just had a new baby then so I did not bother too much reading about the drug, something I always do.

After giving the drug for 30 days, I noticed that her eyes have darkened and gone deeper, I did not immediately relate it to the drug so I went back to the hospital. The doctor did not really see it as an issue; she rather said she needed to continue taking the drug.

I asked her till when, and she said for about two years. I shook my head vigorously and said no! She would not be on the drug for that long, then she said we should go and have a head scan call EEG, and based on the result of that, she could continue on the drug or otherwise.

When I got back home, I read the information leaflet on the drug and it angered me immediately. The side effects were just too many; I called the doctor and questioned why she gave that drug to my daughter without explaining to me the side effects and why she did not do the EEG first before giving the drug.

She had no tangible explanation to give. I just stopped seeing her. Now this is my beef – There is something called the Patients Charter adopted by the Ghana Health Service, that charter, enjoins medical professionals to discuss diagnoses and treatment with their patients but we have very little of that.

In fact, once a patient starts asking too many questions, you may be thrown out of a doctor’s office “that is an offense” And how I wish the Ghana’s Medical and Dental Council could address this issue

In another instance, I have sought the advice of a neurologists who after hearing that my daughter has convulsed two times. (I mean she has had two visible convulsions in her three- year life) just prescribed Keppra.

She even showed me where to get the drug. As I always do I checked the drug online and immediately decided, “Not for my daughter!”

The first thing I saw when I check on the internet was a warning!!! Yes before any drug information, there was a warning that one cannot stop administering Keppra abruptly. Once you stop, you will experience more frequent and vigorous convulsions.

I thought, but why would a doctor prescribe this drug when the person has had only two visible convulsions and besides Keppra is higher than drugs like Carbamazepine, epilem etc and the truth is, I do not really know if the child needed that.

I knew a woman whose child use to convulse two times a day, and this child does not have cerebral palsy (CP) or anything like that.

She said after countless and endless visits to the hospital she went to Mampong Centre for Scientific Research into Plant Medicines, where she was given some gallons of drug to administer to her child.

After that her son did not experience convulsions again. His son is now six year old and it’s been three good years since he ever convulsed.

In addition Keppra costs GH₵ 625 for the 125ml and she is suppose to take this for about three years. I could not help but to think that the doctor was probably “an agent”, I thought frankly.

Communicating with parents of CP on diagnoses and treatment is an issue that really needs to be tackled.

It is sad how many parents get so confused and frustrated by the medical system and resort to other things.

However, the Special Mothers project – a project advocating and creating awareness about CP issues (http://specialmothersproject.blogspot.com) have a parents’ support group and I am happy there is a parents’ support group, So much information is shared when we meet.

I remember when we discussed convulsion at one of our meetings and one lady said her child convulsed almost every night, “Eish”, I shouted within, every night? But at least I learnt that the convulsion usually goes. I learnt not to panic when it happens.

This is the account of one of the mothers: “The sleepless nights usually start with seizures. The pain I feel for my child when he has a seizure and there is nothing I can do.

“He looks into my eyes and you can see he is in pain and he is almost asking ‘why is this happening to me and you can’t explain. All you can do is hold him close and shower him with kisses until it ends.

“Even two minutes is super long when it happens because I know he is going through pain and doesn’t understand why. The moment he is done, it’s like nothing happen at all, and he gets back to being a happy baby. That’s when you know that this little man is a fighter. ”

Convulsion is an abnormal, involuntary contraction of the muscles most typically seen with certain seizure disorders. The term convulsion is sometimes used as a synonym for seizure, but not all seizures are characterized by convulsions. A person having convulsions appears to be shaking rapidly and without control. Other possible causes of convulsions include fever, meningitis, drug or alcohol abuse, poisoning, hypoglycemia, and head injury.

A warm massage, shea butter massage, lemon grass tea with a little honey (http://www.top10homeremedies.com/kitchen-ingredients/top-10-health-benefits-lemongrass.html) and (http://www.livestrong.com/article/271243-what-are-the-health-benefits-of-lemongrass-tea/) all helps to boost the health of children with CP.

At least I also know that there are some things that doctors cannot really do anything about. I advice parents afflicted by CP and other illnesses to send everything to the Lord in prayer.

GNA

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