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Our Painful Experience With Cerebral Palsy??? - Health - Nairaland

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Our Painful Experience With Cerebral Palsy??? by PROPEACE: 7:44am On Jun 11
This may be a bit of a long read, but I hope you will have the patience to read through it, as you will find my experience useful, if not to you, then certainly to a loved one.

Our little boy was born in February 2019 in a government hospital in Abuja. He was delivered through a Caesarean Section as my wife’s two previous deliveries were through the same process.
When our baby was born, we noticed he had jaundice. We drew the attention of the doctors to it but they said it was mild. We complained several times and got the same response. We were discharged after three days.
Upon getting home, we started taking the baby out in the sun early in the morning believing it was sufficient therapy for jaundice. Baby went on running temperature so we went back to the hospital and complained. This time, the doctor we met recommended a test to check his bilirubin level. The doctor then told us it was nothing to worry about.

Our baby started delaying in meeting up with milestones. He sat at 1year, started standing at 1 year 3 months and he lost the skill completely. (He was teething and was having diarrhoea so he was feeble then. His elder brother attempted to walk at 1 year but was teething and had diarrhoea too, so he lost the skill and didn’t walk until 5 months later so we did not see it as something completely strange).
At 1 year and 3 months, our baby started tugging on his ears and inserting his fingers into the ears. He also shakes his head sideways continuously. We visited the hospital but after some tests, they gave us antibiotics and antimalarial drugs. He stood at 1 year 9 months, but before then, at 1 year 7 months when we noticed the baby was neither walking nor talking, we went to see a doctor at the same hospital. The doctor told us not to worry, as some children speak late and that his inability to speak at 1 year and 7 months was not unheard of. We went back to the hospital and this time around we met a female doctor whose eyes dilated when we told her about the symptoms (I guess the mother in her got the better side of her). She immediately referred us to a paediatric neurologist at the specialist hospital in Gwagwalada and that was how the long journey began.

I remember checking the referral letter where I saw “provisional diagnosis: cerebral palsy”. I googled “cerebral palsy” and I discovered that I am quite familiar with the disorder but it did not really coincide with my baby’s challenge because he didn’t have stiff joints. I will like to add here that we noticed at about 1 year and 6 months that our baby wasn’t responding well to sound too. You’d have to shout his name before he turns.
The neurologist after attending to us sent us to the Otolaryngologist (ENT doctor) and also to the Physiotherapist (since baby was still not walking). After one physiotherapy session, baby started walking. I doubt if physiotherapy contributed though. The ENT doctor saw us and sent us for some tests. The test results came out saying the baby’s ears were okay and that his hearing was sufficient to enable speech development. We were sent back to the neurologist, this time we met a different specialist who told us to come back in 6 months.
At this point, our apprehension was sky high. My wife will break down occasionally after some sessions with the doctors. Depression was setting in. We could not wait 6 months, so we decided to go to the National Ear Care Centre in Kaduna.

At the OPD of the National Ear Care Centre, his ears were examined and they told us of some whitish stuff in his ears. They washed them out and told us it suggested a fungal infection of the ear. They gave us an antifungal ear drop which we applied for a fortnight. He appeared to respond slightly to sound but after sometime, it seemed like there was no progress.

We finally went to the ENT section of the hospital in Kaduna where they heard his history. We gave them the results of the hearing tests we did in Abuja. We were doubtful of the Abuja results because when test was going on, the baby was awake and crying which was not supposed to be. The doctor in Kaduna was of the opinion that the baby’s ears were normal like the Abuja test results stated and that the problem was Cerebral Palsy. But because we expressed doubt in the reliability of the result, she sent us to repeat the test in Kaduna.

The result in Kaduna turned out different from that of Abuja like we suspected. It said baby had severe deafness in one ear and profound deafness in the other. We just wanted to find out if our baby was a candidate for Cochlea implant. Well, the Kaduna ENT doctor stood her ground. She was of the opinion that our baby will not benefit from an implant. She referred us back to Abuja to see a Paediatric Neurologist at the National hospital for a scan that will reveal whether or not Cerebral Palsy was the problem.

At the National hospital, we saw the neurologist last month who saw to it that we were booked for a scan next week. We have also seen an ENT doctor who booked us for a repeat of the ear test which will serve as a tie breaker to the previous ones that are conflicting. We will hopefully see the neurologist a couple of weeks from now. The ENT doctor at the National hospital told us that he wants to find from the test results the cause of the hearing loss so as to see if something can be done. He said if there is any intervention possible, then it ought to be done between now and when he will be 3.

This journey has been a long and arduous one that has drained us on many fronts. We don’t want to give up on our baby. At 2 years 4 months, is yet to say a word, but we are hopeful. He walks, but not with much balance, he takes only liquid foods he moves faster than he did in February and he has a cute smile.

I am not sure if jaundice is the cause of my baby’s challenge or to what extent it has affected him (if it is). But I want to leave my readers with the following advice which I learnt from experience:
• No doctor or nurse (however experienced) should look into your baby’s eyes and tell you the jaundice is mild.
• One very effective therapy for jaundice is phototherapy. Please note, keeping your baby under the sun is NOT phototherapy! Sometimes, the level of bilirubin in the blood will be so high that blood transfusion will be necessary.
• When your baby is found to have jaundice, the baby should be kept back and monitored intermittently till when it is safe to discharge the baby. The bilirubin level will peak at some point and will start to drop. It is when it drops to a safe level that the baby should be discharged.
• If the doctors are bent on not taking your baby (suffering from jaundice) to the Neonatal unit and doing the needful. Don’t waste your time quarrelling with them, find a way of getting your baby out of there fast! It doesn’t take months for jaundice to screw up a baby, it needs just a couple of days to a week!
• Pawpaw leaves is no cure for jaundice! Don’t use your baby’s health to prove the efficacy of herbs, it is not worth it! Jaundice rarely kills, but it sometimes does terrible things to infants.

Far more children are suffering today due to poorly managed jaundice than you know, if you go to the Paediatric Neurology clinics in National hospital and the Teaching hospital in Gwagwalada, you will not like what you will see. The sad fact is, about no child will suffer that kind of fate if jaundice is managed well.
Thank you for reading through. I will update you on my baby’s progress as time goes on.

3 Likes 1 Share

Re: Our Painful Experience With Cerebral Palsy??? by WibusJaga: 8:33am On Jun 11
Take heart Bro.
The government really has a lot to do in certifying & regulating our medical practitioners.
Re: Our Painful Experience With Cerebral Palsy??? by PROPEACE: 10:38am On Jun 11
WibusJaga:
Take heart Bro.
The government really has a lot to do in certifying & regulating our medical practitioners.
Thank you so much.
Re: Our Painful Experience With Cerebral Palsy??? by oxypressPlus: 5:21am On Jun 12
PROPEACE:
This may be a bit of a long read, but I hope you will have the patience to read through it, as you will find my experience useful, if not to you, then certainly to a loved one.

Our little boy was born in February 2019 in a government hospital in Abuja. He was delivered through a Caesarean Section as my wife’s two previous deliveries were through the same process.
When our baby was born, we noticed he had jaundice. We drew the attention of the doctors to it but they said it was mild. We complained several times and got the same response. We were discharged after three days.
Upon getting home, we started taking the baby out in the sun early in the morning believing it was sufficient therapy for jaundice. Baby went on running temperature so we went back to the hospital and complained. This time, the doctor we met recommended a test to check his bilirubin level. The doctor then told us it was nothing to worry about.

Our baby started delaying in meeting up with milestones. He sat at 1year, started standing at 1 year 3 months and he lost the skill completely. (He was teething and was having diarrhoea so he was feeble then. His elder brother attempted to walk at 1 year but was teething and had diarrhoea too, so he lost the skill and didn’t walk until 5 months later so we did not see it as something completely strange).
At 1 year and 3 months, our baby started tugging on his ears and inserting his fingers into the ears. He also shakes his head sideways continuously. We visited the hospital but after some tests, they gave us antibiotics and antimalarial drugs. He stood at 1 year 9 months, but before then, at 1 year 7 months when we noticed the baby was neither walking nor talking, we went to see a doctor at the same hospital. The doctor told us not to worry, as some children speak late and that his inability to speak at 1 year and 7 months was not unheard of. We went back to the hospital and this time around we met a female doctor whose eyes dilated when we told her about the symptoms (I guess the mother in her got the better side of her). She immediately referred us to a paediatric neurologist at the specialist hospital in Gwagwalada and that was how the long journey began.

I remember checking the referral letter where I saw “provisional diagnosis: cerebral palsy”. I googled “cerebral palsy” and I discovered that I am quite familiar with the disorder but it did not really coincide with my baby’s challenge because he didn’t have stiff joints. I will like to add here that we noticed at about 1 year and 6 months that our baby wasn’t responding well to sound too. You’d have to shout his name before he turns.
The neurologist after attending to us sent us to the Otolaryngologist (ENT doctor) and also to the Physiotherapist (since baby was still not walking). After one physiotherapy session, baby started walking. I doubt if physiotherapy contributed though. The ENT doctor saw us and sent us for some tests. The test results came out saying the baby’s ears were okay and that his hearing was sufficient to enable speech development. We were sent back to the neurologist, this time we met a different specialist who told us to come back in 6 months.
At this point, our apprehension was sky high. My wife will break down occasionally after some sessions with the doctors. Depression was setting in. We could not wait 6 months, so we decided to go to the National Ear Care Centre in Kaduna.

At the OPD of the National Ear Care Centre, his ears were examined and they told us of some whitish stuff in his ears. They washed them out and told us it suggested a fungal infection of the ear. They gave us an antifungal ear drop which we applied for a fortnight. He appeared to respond slightly to sound but after sometime, it seemed like there was no progress.

We finally went to the ENT section of the hospital in Kaduna where they heard his history. We gave them the results of the hearing tests we did in Abuja. We were doubtful of the Abuja results because when test was going on, the baby was awake and crying which was not supposed to be. The doctor in Kaduna was of the opinion that the baby’s ears were normal like the Abuja test results stated and that the problem was Cerebral Palsy. But because we expressed doubt in the reliability of the result, she sent us to repeat the test in Kaduna.

The result in Kaduna turned out different from that of Abuja like we suspected. It said baby had severe deafness in one ear and profound deafness in the other. We just wanted to find out if our baby was a candidate for Cochlea implant. Well, the Kaduna ENT doctor stood her ground. She was of the opinion that our baby will not benefit from an implant. She referred us back to Abuja to see a Paediatric Neurologist at the National hospital for a scan that will reveal whether or not Cerebral Palsy was the problem.

At the National hospital, we saw the neurologist last month who saw to it that we were booked for a scan next week. We have also seen an ENT doctor who booked us for a repeat of the ear test which will serve as a tie breaker to the previous ones that are conflicting. We will hopefully see the neurologist a couple of weeks from now. The ENT doctor at the National hospital told us that he wants to find from the test results the cause of the hearing loss so as to see if something can be done. He said if there is any intervention possible, then it ought to be done between now and when he will be 3.

This journey has been a long and arduous one that has drained us on many fronts. We don’t want to give up on our baby. At 2 years 4 months, is yet to say a word, but we are hopeful. He walks, but not with much balance, he takes only liquid foods he moves faster than he did in February and he has a cute smile.

I am not sure if jaundice is the cause of my baby’s challenge or to what extent it has affected him (if it is). But I want to leave my readers with the following advice which I learnt from experience:
• No doctor or nurse (however experienced) should look into your baby’s eyes and tell you the jaundice is mild.
• One very effective therapy for jaundice is phototherapy. Please note, keeping your baby under the sun is NOT phototherapy! Sometimes, the level of bilirubin in the blood will be so high that blood transfusion will be necessary.
• When your baby is found to have jaundice, the baby should be kept back and monitored intermittently till when it is safe to discharge the baby. The bilirubin level will peak at some point and will start to drop. It is when it drops to a safe level that the baby should be discharged.
• If the doctors are bent on not taking your baby (suffering from jaundice) to the Neonatal unit and doing the needful. Don’t waste your time quarrelling with them, find a way of getting your baby out of there fast! It doesn’t take months for jaundice to screw up a baby, it needs just a couple of days to a week!
• Pawpaw leaves is no cure for jaundice! Don’t use your baby’s health to prove the efficacy of herbs, it is not worth it! Jaundice rarely kills, but it sometimes does terrible things to infants.

Far more children are suffering today due to poorly managed jaundice than you know, if you go to the Paediatric Neurology clinics in National hospital and the Teaching hospital in Gwagwalada, you will not like what you will see. The sad fact is, about no child will suffer that kind of fate if jaundice is managed well.
Thank you for reading through. I will update you on my baby’s progress as time goes on.

If your baby has suffered so much complications from jaundice the best thing to do is to search for hyperbaric oxygen therapy -hbot.

Google : hbot for jaundice, or: hbot for cerebral palsy and see for yourself.

We are HBOT PROVIDERS.

1 Like

Re: Our Painful Experience With Cerebral Palsy??? by PROPEACE: 2:00pm On Jun 12
oxypressPlus:


If your baby has suffered so much complications from jaundice the best thing to do is to search for hyperbaric oxygen therapy -hbot.

Google : hbot for jaundice, or: hbot for cerebral palsy and see for yourself.

We are HBOT PROVIDERS.
Ok I will

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