Feeding
Toby struggled to feed from birth. I expressed my breast milk for the first 3 months because he was unable to suckle & topped up his feed with formula.
Toby would take one hour to take his bottle.
He would have to be woken for feeds.
Toby began to have his feed thickened & taken from a spoon from around 4 months.
The months following Toby continued onto puree & melt in the mouth foods.
Toby had to take most of his fluids in his food, for example: we would use his formula or put water in his food.
Toby would take some fluids from a tommee tippee cup.
When Toby was poorly or excessively tired, we struggled to feed him & he often had to have a nasal feeding tube administered.
Toby had his PEG put in when he was 2 and a half
Toby continued to eat well & had his diet topped up with PEG feeds
Toby started the Ketogenic diet at 3yrs old to help control his seizures - when he began the diet he ate orally & had his diet supplemented with Ketocal & Maxigel. Unfortunately over time Toby struggled with the heavy tasteless (butter & cream) diet and often struggled to keep food down on an evening therefore, he became more & more reliant on the PEG feeds and ate less & less.
Toby ended the Ketogenic diet Summer 2015 (age 6) because he had achieved good seizure control & unfortunately the diet was beginning to cause the first signs of kidney damage.
Since then we have worked towards getting Toby back to eating orally. Unfortunately Toby has suffered terrible reflux the last few years and his vomiting has become more and more frequent - rising to 27 times in one month alone. His weight recently dropped 3kg.
Toby had a fundoplication on the 27th of March, 2017. the operation was a success ant Toby no longer vomits at all.
Toby currently rarely feeds orally and gets his nutrition through his feeding tube.
Toby would take one hour to take his bottle.
He would have to be woken for feeds.
Toby began to have his feed thickened & taken from a spoon from around 4 months.
The months following Toby continued onto puree & melt in the mouth foods.
Toby had to take most of his fluids in his food, for example: we would use his formula or put water in his food.
Toby would take some fluids from a tommee tippee cup.
When Toby was poorly or excessively tired, we struggled to feed him & he often had to have a nasal feeding tube administered.
Toby had his PEG put in when he was 2 and a half
Toby continued to eat well & had his diet topped up with PEG feeds
Toby started the Ketogenic diet at 3yrs old to help control his seizures - when he began the diet he ate orally & had his diet supplemented with Ketocal & Maxigel. Unfortunately over time Toby struggled with the heavy tasteless (butter & cream) diet and often struggled to keep food down on an evening therefore, he became more & more reliant on the PEG feeds and ate less & less.
Toby ended the Ketogenic diet Summer 2015 (age 6) because he had achieved good seizure control & unfortunately the diet was beginning to cause the first signs of kidney damage.
Since then we have worked towards getting Toby back to eating orally. Unfortunately Toby has suffered terrible reflux the last few years and his vomiting has become more and more frequent - rising to 27 times in one month alone. His weight recently dropped 3kg.
Toby had a fundoplication on the 27th of March, 2017. the operation was a success ant Toby no longer vomits at all.
Toby currently rarely feeds orally and gets his nutrition through his feeding tube.