Andrew's Hope: The frustrations of the Keto diet

Wednesday, June 23, 2010

The frustrations of the Keto diet

Well, my oh so wonderful son was awake most of the night. Seizures, tube feedings, blood work etc. Poor little man. He never knew what hit him! this morning he was being checked by the attending when he suddenly wretched and threw up large amounts nof water and stomach bile. Apparently his Co2 level was low before he even started the diet. So the attending ARNP order Citri k and Andrew took it throughhis g-tube. With in 3 min it ALL came back up! So then the fun and games started. An IV was ordered and we waited patiently for the IV nurse to come. When she did it took three tries to get a successful IV started. (Not to mention the bloody mess when we finally got it) Now Andrew has had IV fluids and another feeding of 1/2 strength formula via g-tube. Wow that boy can pee! His urine dip ketones are above 3 which means we are getting to the ketosis state. Currnetly he is sleeping and I have been to a training to review weighing, measuring and food plans. I will have another class tomorrow. Poor little man has blood drawn 1-2 times a day and finger sticks every 6 hrs. The pull out couch/bed is not very comfortbale, but it lets Andrew lay with me when he is really upset. Let's all keep our fingers crossed for success.

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About Andrew

Andrew is a very handsome wonderful 6 year old boy. He gives us so much joy to have him in our life and, just like any parents, we want to do everything we can to make his life better.

Andrew has bilateral hearing loss and a difficult to control seizure disorder. Andrew also has a visual processing disorder which essentially makes him "blind". While he can visualize objects, he can not process and identify what he is seeing. On top of this, Andrew also has a swallowing disorder which makes it necessary for specialized feeding.

The seizures Andrew has been diagnosed with have also included Infantile Spasms, which is a very serious diagnosis in a child. Due to the severity and frequency of Andrew's seizures, he is termed as "Global Delay" because of the interruption they cause in his daily learning and processing of information. This is despite of being on multiple medications and therapies.

At 3 years of age, Andrew took his first steps. We are still waiting for the day he says his first word. Andrew has come a long ways in the last 3 years. Having Carina enhance her training to include tethering will be wonderful for Andrew. We have fought long and hard to get him walking, including fighting the school when they wanted to put him in a wheelchair. Andrew should be indepdendent as safely possible and noone should ever hold him back.

Carina has improved Andrew's long term quality of life by alerting and providing comfort before, during and after seizures. She can also help to be Andrew's eyes and ears and provide a much needed source of support and comfort to him as he meets the upcoming challenges in his life. We heard about a great organization that places highly trained dogs.

4 Paws for Ability is a non-profit organization dedicated to helping children and adults with disabilities. The dogs are specially chosen and trained specific to each individual's needs. Our previous fundraising was on behalf of 4 Paws For Ability in order to minimize the wait time and allow us to participate in the process of placing a dog with Andrew.

Why 4 Paws For Ability?

4 Paws For Ability specializes in training service dogs for children with special needs and has a very high success rate. We encourage you to visit their site at http://www.4pawsforability.org/ to learn more about this wonderful organization. 4 Paws For Ability is a 501(C) Non-Profit Agency and all donations are tax deductible. 4 Paws for Ability's mission is to "Enrich the lives of people with disabilities by the training and placement of service dogs to provide individuals with companionship and promote independent living." and "Assist with animal rescue whenever possible by obtaining many of our animals from shelters and rescue groups." Through a family friend, we heard of another family currently undergoing the training and placement process of a seizure response dog for their 4 year old daughter Caitlin. 4 Paws For Ability is very highly recommended and has placed over 500 service dogs!