Helping Mason

06/11/2019

Pulmonology Today we had several appointments downtown. First, mason had his G-tube resized. He’s had redness around his G-tube for several months and I suspected that the size may need to be increased and in fact it did need to be increased by 2 sizes. Next, we had a pulmonology appointment and luckily that went well and Mason's respiratory status has been great lately. [ 76 more words ]

Pulmonology Today we had several appointments downtown. First, mason had his G-tube resized. He’s had redness around his G-tube for several months and I suspected that the size may need to be increased and in fact it did need to be increased by 2 sizes. Next, we had a pulmonology appointment and l...

06/09/2019

Beachview Dreams We are very excited to have been awarded a much needed vacation by a foundation called Beachview Dreams!! This foundation awards a few families per year a one week vacation in Ocean City, NJ free of charge. As a family, we have only vacationed short weekend stays. Our last week long vacation was 9 years ago when we went to… [ 32 more words ]

Beachview Dreams We are very excited to have been awarded a much needed vacation by a foundation called Beachview Dreams!! This foundation awards a few families per year a one week vacation in Ocean City, NJ free of charge. As a family, we have only vacationed short weekend stays. Our last week long...

06/06/2019

https://helpingmason.com/onfi-blood-level-result-and-seizure-activity/

Today Mason went to the Neurologist. Unfortunately, his Onfi level is way too high and his liver enzymes are still elevated slightly.

05/31/2019

Epidiolex and Onfi Mason had bloodwork done yesterday to check his liver enzymes and his Onfi level. Onfi is a medication used to control seizures. Unfortunately, the Epidiolex he is taking has increased the drug level of Onfi to a dangerous level in the past so we have to monitor it closely. The Epidiolex can also increase his liver enzymes. Three weeks ago he had bloodwork and his liver enzymes were elevated and we had to make medication changes. [ 26 more words ]

Mason had bloodwork done yesterday to check his liver enzymes and his Onfi level. Onfi is a medication used to control seizures.

05/29/2019

Mason is trying out a new formula. He started it on Sunday. It is called COMPLEAT®, by Nestlé Health Science, and is full of vitamins and nutrients that his other formula did not have. It has puréed chicken, mangos and peas in it and it can be administered through his g-tube. Prior to this he was only able to have… [ 80 more words ]

COMPLEAT® was created by Nestlé Health Science, and is full of vitamins and nutrients that his other soy formula did not have.

05/24/2019

Midazolum and Seizure Activity Mason had an 8 minute seizure today. He receives a medication called Midazolum to help stop the seizures when he is in them. He has been taking this medication for years and was previously on Diastat. Both Midazolum and Diastat are used to stop seizures once someone is already in a seizure. Unfortunately we stopped using Diastat because it made him extremely sleepy and he would sleep the whole day after receiving it. [ 100 more words ]

Both Midazolum and Diastat are used to stop seizures once someone is already in a seizure. Unfortunately we stopped using Diastat because it made him...

05/22/2019

Mason had an appointment back in January to be evaluated for assistive technology. Today I received a call that his trial device was approved and will be arrival late June/early July. He will be trialing this device for about 4 weeks to see if it’s a good fit for him. If it is a good fit it will be a way of him communicating with us, which we are very excited about! [ 35 more words ]

Mason had an appointment back in January to be evaluated for assistive technology. Today I received a call that his trial device was approved!

05/22/2019

Mason has been having issues with the skin around his g-tube on and off for the last several months. It became infected and was treated with antibiotics. The antibiotics then caused a yeast infection around his g-tube. That cleared a few days ago and the skin is red again. The P*P has been helping with this for the past several months but is stumbled as to why it keeps happening. [ 33 more words ]

Mason has been having issues with the skin around his g-tube on and off for the last several months. It became infected and was treated with antibiotics. The antibiotics then caused a yeast infection around his g-tube. That cleared a few days ago and the skin is red again. The P*P has been helping w...

05/18/2019

Mason had a 10 minute seizure today. Unfortunately he seems to be having an increase in seizures this month and we are not sure why. He is currently taking Epidiolex to control his seizures. Epidiolex is a form of CBD oil that is FDA approved. He started it in March and we did see a slight decrease in seizures at first. [ 69 more words ]

Mason had a 10 minute seizure today. Unfortunately he seems to be having an increase in seizures this month and we are not sure why. He is currently taking Epidiolex to control his seizures. Epidiolex is a form of CBD oil that is FDA approved. He started it in March and we did see a …

05/15/2019

Mason had a sleep study on 4/28. This was a follow up from being placed on bipap in June 2018 for respiratory issue. He has not needed bipap at night since August, but, the pulmonologist felt that a sleep study would be best to rule out obstructive sleep apnea. Well, the results came back today and he does not have obstructive sleep apnea as it was previously thought! [ 53 more words ]

Mason had a sleep study on 4/28. This was a follow up from being placed on bipap in June 2018 for respiratory issue. He has not needed bipap at night since August, but, the pulmonologist felt that a sleep study would be best to rule out obstructive sleep apnea. Well, the results came back today …

05/10/2019

On May 5th, Mason had a seizure that lasted 8 minutes. We like to record video of him during seizures for a number of reasons if you are wondering. One reason is for his Neurologist to see, first hand, what his seizures look like to see if they can learn anything from it. Another reason is for educational purposes. We hope that capturing the footage can help others in determining what type of seizure that they may be dealing with. [ 151 more words ]

On May 5th, Mason had a seizure that lasted 8 minutes. We like to record video of him during seizures for a number of reasons if you are wondering. One reason is for his Neurologist to see, first hand, what his seizures look like to see if they can learn anything from it. Another reason …

11/29/2013

The Helping Mason Web Site is back up and running. Check it out at http://www.helpingmason.com