Hope for Harlan
Donation protected
Our beautiful Harlan was diagnosed with Epilepsy at the age of 4 months January 2015
He now has several differentt types of seizures even with medication. Just about all of Harlan's seizures have been from sleep increasing risk of SUDEP ( sudden unexpected death due to epilepsy ) Harlan often suffers respiratory complications with his seizures and we often end up in hospital with him not breathing properly afterwards or because he's aspirated during the seizure and is at risk of aspirated pneumonia. Both Steve and I have had to breath for Harlan on several occasions. We carry emergency oxygen with us and an ambu-bag where ever we go. Harlan has had abnormal EEG's , a recording of the brains electrical activity. Soon after his seizures began we noticed neurological complications
* developmental delay
Delays in rolling , sitting, crawling, fine motor development, feeding
* Temperature regulation concerns
Keeping a low temperature for hours at a time causing hypothermic symptoms with attempts to raise it physically unsuccessful
* central apnea
Causing him to stop breathing for 15-20 seconds at a time during sleep with no attempts to breath and causing oxygen desaturations . This is often followed by hypoxia, irregular sharp breaths with long pauses in between due to low oxygen saturation. This is both harmful and can lead to death in sleep and increases SIDS risk . Harlan cab have up to 10 of these events in every hour of sleep Harlan wears oxygen when he sleeps to reduce these risks and to help with hypoxic events.
* severe delayed swallow
Slow swallow trigger during feeds causing the fluid to enter the airways and be aspirated into the lungs. A build up of this matter causes damage to the lungs resulting in lung disease and decreased lung function.
And then April 2015
We found ourselves in Intesive care with Insulin dependant diabetes . This is an autoimmune disease and is not caused by lifestyle choices. There is no cure for this type of diabetes.
This requires Harlan to rely on an insulin pump to do what his pancreas no longer does, produce insulin. He has several blood glucose tests a day, sometimes every 2 hours ( even through the night ) to manage and stabalise his sugar levels. He is at risk from hypoglycemia induced comas and a serious condition called diabetic ketoacidosis from extremely high sugars . Every time Harlan eats he has a small bolus of insulin with every bit of food he eats. Every other day a small cannula that sits in his leg is changed that is connected to the pump.
Shortly after we discovered further feeding issues that have revealed aspirations of fluid into his lungs and signs of lung disease.
We have spent 6 out of 8 months in hospital since January and have already experienced more than any little person should with Harlan . We are still not sure why Harlan has what he does or what has caused it. He has genetic testing underway with both general genetics and with diabetes research in the UK .
We still have so many major concerns with Harlans health and a long road ahead of us.
With Steve unable to work because of commitments to Harlan and our three other children, ongoing medical care and costs, and the uncertain road ahead .....
We are reaching out for help from the bottom of our hearts.
He now has several differentt types of seizures even with medication. Just about all of Harlan's seizures have been from sleep increasing risk of SUDEP ( sudden unexpected death due to epilepsy ) Harlan often suffers respiratory complications with his seizures and we often end up in hospital with him not breathing properly afterwards or because he's aspirated during the seizure and is at risk of aspirated pneumonia. Both Steve and I have had to breath for Harlan on several occasions. We carry emergency oxygen with us and an ambu-bag where ever we go. Harlan has had abnormal EEG's , a recording of the brains electrical activity. Soon after his seizures began we noticed neurological complications
* developmental delay
Delays in rolling , sitting, crawling, fine motor development, feeding
* Temperature regulation concerns
Keeping a low temperature for hours at a time causing hypothermic symptoms with attempts to raise it physically unsuccessful
* central apnea
Causing him to stop breathing for 15-20 seconds at a time during sleep with no attempts to breath and causing oxygen desaturations . This is often followed by hypoxia, irregular sharp breaths with long pauses in between due to low oxygen saturation. This is both harmful and can lead to death in sleep and increases SIDS risk . Harlan cab have up to 10 of these events in every hour of sleep Harlan wears oxygen when he sleeps to reduce these risks and to help with hypoxic events.
* severe delayed swallow
Slow swallow trigger during feeds causing the fluid to enter the airways and be aspirated into the lungs. A build up of this matter causes damage to the lungs resulting in lung disease and decreased lung function.
And then April 2015
We found ourselves in Intesive care with Insulin dependant diabetes . This is an autoimmune disease and is not caused by lifestyle choices. There is no cure for this type of diabetes.
This requires Harlan to rely on an insulin pump to do what his pancreas no longer does, produce insulin. He has several blood glucose tests a day, sometimes every 2 hours ( even through the night ) to manage and stabalise his sugar levels. He is at risk from hypoglycemia induced comas and a serious condition called diabetic ketoacidosis from extremely high sugars . Every time Harlan eats he has a small bolus of insulin with every bit of food he eats. Every other day a small cannula that sits in his leg is changed that is connected to the pump.
Shortly after we discovered further feeding issues that have revealed aspirations of fluid into his lungs and signs of lung disease.
We have spent 6 out of 8 months in hospital since January and have already experienced more than any little person should with Harlan . We are still not sure why Harlan has what he does or what has caused it. He has genetic testing underway with both general genetics and with diabetes research in the UK .
We still have so many major concerns with Harlans health and a long road ahead of us.
With Steve unable to work because of commitments to Harlan and our three other children, ongoing medical care and costs, and the uncertain road ahead .....
We are reaching out for help from the bottom of our hearts.
Organizer
Harlan Atkinson
Organizer
Bedfordale WA
