Niki1977
04-06-2008, 02:49 AM
Hi there. I'm very excited about finding this forum!
I live in South Africa with my family (Christian 5, Aaron 3 and Zara 2) and my husband. My kids were all born in the UK, but we moved to SA about a year and a half ago. I would like to tell you about my son Christian and would love to hear from anybody who has a similar story or can shed some light. Sorry if it's a bit long, but I'm going to round up 5 and a half years quickly.
Pregnancy
We fell pregnant with Christian naturally and I experienced a normal pregnancy with no complications. I gave natural vaginal birth 4 weeks early at 35 +5 weeks. The birth was uncomplicated.
Development
Christian was jaundice at birth and at 10 days received light therapy over night. I was feeding every two hours and the jaundice eventually went away.
I started him on solids at 4 months, as recommended at the time, and continued to breast feed until 6 months. He went to all his developmental checks and was on track in every area including: rolling over, sitting, crawling, following with his eyes, grip, hearing, standing and walking. We walked well at a year and started speaking.
He was off nappies by the time he started playschool at 2.5 (day and night).
Christian had very good muscle tone at birth and was never a floppy baby.
When he was about 2 or 3 months old he seemed to have 'seisures' - They would last a couple of seconds and then pass. He probably had about 5-10 of these. I tried to explain them to the doctor at his development test, but she was very unconcerned and they were very difficult to discribe. He has never has seisures since and I still don't know if they were actual seisures.
As a baby Christian often lay in a car chair rather than flat on his back – could this have contributed to lack of spinal core stability?
Christian has had all his immunisations including MMR.
Sweating while sleeping
During afternoon sleeps Christian would sweat more than normal. This has subsided a bit.
Waking up & Night terrors
Waking up, especially after an afternoon sleep was bad. It would normally take about 30 minutes to calm him down. This has subsided, but he still very troubled and clingy after waking up on afternoon naps.
In his first 2 years, Christian had night terrors and we would struggle to wake him up at times. He would carry on screaming with lifeless eyes for up to 5 minutes before we can get him out of it.
Excessive Drinking.
In his first 2 years, Christian drank a lot of fluids. We would give him concentrated cold drink mixed with water but in a very weak mix. We have now taken him totally off any juices unless 100% natural.
Drooling
Christian always drooled, basically from birth. As a baby it was not strange for us because all babies seemed to drool. During his teething age it was so not terribly noticeable because other kids were also drooling, although he did seem to drool more than his peers. It was at about 2 – 2.5 when we really started noticing that he was still drooling although most of his peers had stopped. Drooling gets worse when Christian has to concentrate on a fine motor task or when he is enjoying playing with other kids.
It seems that as soon as he concentrates he forgets to swallow saliva. Although we have tried to teach him to form a habit of swallowing, he has not taken to any habit of swallowing more.
Wobbling
Up until about 2-2.5 we always thought that Christian just had a ‘cool’ gait, he had a kind of ‘swagger’. He was about to start at a playschool when my sister, who works with children, pointed it out to us that the teachers might notice that he was different. It was at this point that we started taking more notice of these habits and become concerned. I took him to our GP who didn’t show much concern, but referred us to a colleague. This Doctor referred us to an Orthopaedic surgeon who found nothing wrong.
Tiredness
Before the age of 3.5 Christian complained frequently of being tired, especially after walking. He would also complain that his legs are sore when walking more than 100m. This tiredness seems to have faded as he does not complain of this anymore. However, we seldom walk longer distances with him these days. He does not show sign of the same tiredness when playing with other kids.
Heartbeat
Christians Granny has mentioned that he has a faster than normal heartbeat. We have not measured his heartbeat to date and do not know what rate is normal for a kid his age.
In London we:
Visited GP – did not show concern
Second visit to GP – did not really see the problem, but referred to orthopaedic surgeon
Appointment with Orthopaedic surgeon – X-ray on legs – did not see any problems.
At 2.5 Christian began going to a playschool 3 mornings a week in London. They immediately noticed the problem and a health visitor was asked to evaluate him. It was really at this point that I began being concerned that it was a neurological problem.
We visited South Africa and decided begin looking for answers:
Occupational Therapist – South Africa – saw the problem, but could not diagnose
Paediatrician – Dr Beukes – South Africa - saw the problem, but could not diagnose
MRI – came back showing nothing abnormal
Audiologist in South Africa – no problems
Neurological Physiotherapist – she diagnosed ‘low muscle tone’
Paediatrician – London – saw the problem and referred for blood tests
Blood Tests – all came back clear
Referred by Dr Beukes to Red Cross
Saw Dr Ndondo at Red Cross – suspected Dystonia - trail Levadopa (did not finish the course, but did not see any results). Did more blood test.
Saw Dr van Toorn at Tygerberg Hospital. Gave diagnosis of Dystonia.
Saw Prof Schoeman. Gave diagnosis of Dystonia.
At 2.5 Christian began going to a playschool 3 mornings a week in London. They immediately noticed the problem and a health visitor was asked to evaluate him. It was really at this point that I began being concerned that it was a neurological problem.
In 2007 Christian went to a playschool one morning a week and attended Playball for half an hour a week.
In 2008 he began Grade R. He was there for 3 months and I took him out to homeschool. He was not keeping up physically. He would get tired and not complete tasks.
We have recently taken him to an Educational Psychologist and he is very much in support of us home schooling. He tested very nicely in all areas of his intelligence (emotional and academic).
Christians’ Symptoms
Drooling – Christian drools constantly and more so if he is concentrating.
Stability – Christian is unstable when standing, walking and sitting.
Standing – Christian struggles to stand still. He cannot stand still in one place.
Walking – Christian drags his feet when he walks.
Running – Christian can run fast and straight, but does drag his feet unless told to run ‘heal-toe’.
Sitting – Christian struggles to sit up straight on the floor. He will constantly fall over backwards.
Christian will complain of a sore neck when sitting to draw or do a puzzle for an extended period of time.
Christian will complain of his legs getting sore if he was to walk very far, especially if he is tired.
Christians’ Personality
Christian is a very sensitive, gentle and loving child. He has never been an aggressive to other children, although has healthy fights with his younger brother. Christian is a bright child both emotionally and intelligently. He is very aware of his own feelings as well as the feelings of others. He is eager to learn new things and enjoys learning new things including – counting, alphabet, stories, telling his own stories and making up new songs, painting etc.
Possible related family medical history
Mother – Tendonitis (walked on toes as a child)
Mothers’ aunt on mothers side – Disabled with possible Limb Girdle
Mothers’ cousins’ son was thought to have a problem with core stability and visited an OT. No official diagnosis was made.
Restless Leg Syndrome in Niki and Barbara
Mothers’ mothers’ cousins, child – Diagnosed with low muscle tone and treated at Red Cross. Also had operation on one tendon, which improved stability. (Cara Louise Hindes 79082889 79082 889) Born 5 weeks early at 1/6kgs. Had slurred speech.
Parents’ thoughts on Low Muscle Tone
Low muscle tone usually presents itself with a floppy baby. Christian was never a floppy baby. Christian does not have a muscle strength problem and can run, jump, climb and hang just like any normal child. Christian does not have any final motor skill problems and can draw within the lines, build Lego, cut with scissors and do puzzles with out a problem.
Low muscle children don’t often drool and his drooling is not caused by not being able to swallow or by drooping facial muscles.
Parents’ thoughts on Dystonia
Although Dystonia might answer more questions than Low Muscle Tone with regards to the drooling it fits in with our original feelings and concerns that it could be a neurological problem (supposedly ruled out my the MRI).
Our concern with this diagnosis is that Christian never has spasms or contacts his muscles in awkward positions. If he is falling over he will tense his muscles to prevent him falling, but this is the same as how we do when we are unbalanced e.g. clenching his hand or holding his arms out. He can readily relax these muscles.
If you have read through all that then I really really appreciate it!! I'd love to hear from any parent that can make any comment on the above.
Thank you!!
Niki
I live in South Africa with my family (Christian 5, Aaron 3 and Zara 2) and my husband. My kids were all born in the UK, but we moved to SA about a year and a half ago. I would like to tell you about my son Christian and would love to hear from anybody who has a similar story or can shed some light. Sorry if it's a bit long, but I'm going to round up 5 and a half years quickly.
Pregnancy
We fell pregnant with Christian naturally and I experienced a normal pregnancy with no complications. I gave natural vaginal birth 4 weeks early at 35 +5 weeks. The birth was uncomplicated.
Development
Christian was jaundice at birth and at 10 days received light therapy over night. I was feeding every two hours and the jaundice eventually went away.
I started him on solids at 4 months, as recommended at the time, and continued to breast feed until 6 months. He went to all his developmental checks and was on track in every area including: rolling over, sitting, crawling, following with his eyes, grip, hearing, standing and walking. We walked well at a year and started speaking.
He was off nappies by the time he started playschool at 2.5 (day and night).
Christian had very good muscle tone at birth and was never a floppy baby.
When he was about 2 or 3 months old he seemed to have 'seisures' - They would last a couple of seconds and then pass. He probably had about 5-10 of these. I tried to explain them to the doctor at his development test, but she was very unconcerned and they were very difficult to discribe. He has never has seisures since and I still don't know if they were actual seisures.
As a baby Christian often lay in a car chair rather than flat on his back – could this have contributed to lack of spinal core stability?
Christian has had all his immunisations including MMR.
Sweating while sleeping
During afternoon sleeps Christian would sweat more than normal. This has subsided a bit.
Waking up & Night terrors
Waking up, especially after an afternoon sleep was bad. It would normally take about 30 minutes to calm him down. This has subsided, but he still very troubled and clingy after waking up on afternoon naps.
In his first 2 years, Christian had night terrors and we would struggle to wake him up at times. He would carry on screaming with lifeless eyes for up to 5 minutes before we can get him out of it.
Excessive Drinking.
In his first 2 years, Christian drank a lot of fluids. We would give him concentrated cold drink mixed with water but in a very weak mix. We have now taken him totally off any juices unless 100% natural.
Drooling
Christian always drooled, basically from birth. As a baby it was not strange for us because all babies seemed to drool. During his teething age it was so not terribly noticeable because other kids were also drooling, although he did seem to drool more than his peers. It was at about 2 – 2.5 when we really started noticing that he was still drooling although most of his peers had stopped. Drooling gets worse when Christian has to concentrate on a fine motor task or when he is enjoying playing with other kids.
It seems that as soon as he concentrates he forgets to swallow saliva. Although we have tried to teach him to form a habit of swallowing, he has not taken to any habit of swallowing more.
Wobbling
Up until about 2-2.5 we always thought that Christian just had a ‘cool’ gait, he had a kind of ‘swagger’. He was about to start at a playschool when my sister, who works with children, pointed it out to us that the teachers might notice that he was different. It was at this point that we started taking more notice of these habits and become concerned. I took him to our GP who didn’t show much concern, but referred us to a colleague. This Doctor referred us to an Orthopaedic surgeon who found nothing wrong.
Tiredness
Before the age of 3.5 Christian complained frequently of being tired, especially after walking. He would also complain that his legs are sore when walking more than 100m. This tiredness seems to have faded as he does not complain of this anymore. However, we seldom walk longer distances with him these days. He does not show sign of the same tiredness when playing with other kids.
Heartbeat
Christians Granny has mentioned that he has a faster than normal heartbeat. We have not measured his heartbeat to date and do not know what rate is normal for a kid his age.
In London we:
Visited GP – did not show concern
Second visit to GP – did not really see the problem, but referred to orthopaedic surgeon
Appointment with Orthopaedic surgeon – X-ray on legs – did not see any problems.
At 2.5 Christian began going to a playschool 3 mornings a week in London. They immediately noticed the problem and a health visitor was asked to evaluate him. It was really at this point that I began being concerned that it was a neurological problem.
We visited South Africa and decided begin looking for answers:
Occupational Therapist – South Africa – saw the problem, but could not diagnose
Paediatrician – Dr Beukes – South Africa - saw the problem, but could not diagnose
MRI – came back showing nothing abnormal
Audiologist in South Africa – no problems
Neurological Physiotherapist – she diagnosed ‘low muscle tone’
Paediatrician – London – saw the problem and referred for blood tests
Blood Tests – all came back clear
Referred by Dr Beukes to Red Cross
Saw Dr Ndondo at Red Cross – suspected Dystonia - trail Levadopa (did not finish the course, but did not see any results). Did more blood test.
Saw Dr van Toorn at Tygerberg Hospital. Gave diagnosis of Dystonia.
Saw Prof Schoeman. Gave diagnosis of Dystonia.
At 2.5 Christian began going to a playschool 3 mornings a week in London. They immediately noticed the problem and a health visitor was asked to evaluate him. It was really at this point that I began being concerned that it was a neurological problem.
In 2007 Christian went to a playschool one morning a week and attended Playball for half an hour a week.
In 2008 he began Grade R. He was there for 3 months and I took him out to homeschool. He was not keeping up physically. He would get tired and not complete tasks.
We have recently taken him to an Educational Psychologist and he is very much in support of us home schooling. He tested very nicely in all areas of his intelligence (emotional and academic).
Christians’ Symptoms
Drooling – Christian drools constantly and more so if he is concentrating.
Stability – Christian is unstable when standing, walking and sitting.
Standing – Christian struggles to stand still. He cannot stand still in one place.
Walking – Christian drags his feet when he walks.
Running – Christian can run fast and straight, but does drag his feet unless told to run ‘heal-toe’.
Sitting – Christian struggles to sit up straight on the floor. He will constantly fall over backwards.
Christian will complain of a sore neck when sitting to draw or do a puzzle for an extended period of time.
Christian will complain of his legs getting sore if he was to walk very far, especially if he is tired.
Christians’ Personality
Christian is a very sensitive, gentle and loving child. He has never been an aggressive to other children, although has healthy fights with his younger brother. Christian is a bright child both emotionally and intelligently. He is very aware of his own feelings as well as the feelings of others. He is eager to learn new things and enjoys learning new things including – counting, alphabet, stories, telling his own stories and making up new songs, painting etc.
Possible related family medical history
Mother – Tendonitis (walked on toes as a child)
Mothers’ aunt on mothers side – Disabled with possible Limb Girdle
Mothers’ cousins’ son was thought to have a problem with core stability and visited an OT. No official diagnosis was made.
Restless Leg Syndrome in Niki and Barbara
Mothers’ mothers’ cousins, child – Diagnosed with low muscle tone and treated at Red Cross. Also had operation on one tendon, which improved stability. (Cara Louise Hindes 79082889 79082 889) Born 5 weeks early at 1/6kgs. Had slurred speech.
Parents’ thoughts on Low Muscle Tone
Low muscle tone usually presents itself with a floppy baby. Christian was never a floppy baby. Christian does not have a muscle strength problem and can run, jump, climb and hang just like any normal child. Christian does not have any final motor skill problems and can draw within the lines, build Lego, cut with scissors and do puzzles with out a problem.
Low muscle children don’t often drool and his drooling is not caused by not being able to swallow or by drooping facial muscles.
Parents’ thoughts on Dystonia
Although Dystonia might answer more questions than Low Muscle Tone with regards to the drooling it fits in with our original feelings and concerns that it could be a neurological problem (supposedly ruled out my the MRI).
Our concern with this diagnosis is that Christian never has spasms or contacts his muscles in awkward positions. If he is falling over he will tense his muscles to prevent him falling, but this is the same as how we do when we are unbalanced e.g. clenching his hand or holding his arms out. He can readily relax these muscles.
If you have read through all that then I really really appreciate it!! I'd love to hear from any parent that can make any comment on the above.
Thank you!!
Niki