Saturday morning proves that whomever is at the hotel can stay and whomever has not made it will not get there. Ft. Worth has been hit by a weather system the likes of which they have not seen since 1998. I was pleasantly surprised that the hotel had put up all the staff in rooms both Thursday and Friday evenings. In these situations the hotel feeds their employees as well.
Our speakers for the day are from Texas Children's Hospital in Houston. I was not sure how this was going to be informative to me. We had a pediatric dermatologist and a Child life specialist. I was pleasantly surprised at their presentation. With the small number of us that made it in they turned a lecture into a general discussion about services available to children with BCCNS. They included personal stories from children who had been to camps for children with skin disorders. Another part of their presentation was regarding helping children get through the daily trials of BCCNS.
In both of these presentations I realized most if not all of this related to the adult patient as well as the child patient. First, by replacing the word child in the lecture notes it takes on a more personal meaning for me.
1) Although I have the disorder, I am NOT DEFINED by this disorder. BCCNS members say I have BCCNS but BCCNS does not have me.
2)Doctors do not always know best. I have to be my own advocate. I have to be a teacher.
3)Patience and a positive attitude will get me far. Do what I can to support others and get the external support I need.
4)Be a good listener and a good friend. You are not just a caregiver or example to just yourself.
5)Don't underestimate the power of touch. We all need reassurance and touch is the most profound way to express caring.
The other part of the morning lecture regarded the child's point of view during the various procedures and treatments for the syndrome. Children are little people. They are sensitive to what's going on and when they have the syndrome become wise and sensitive to procedures very quickly. So many times doctors will address all or most of the conversation to the adults, only addressing the child when they want them to lie down for examination, treatment, etc. They don't consider whether the child feels out of control lying down and would rather sit up or stand. It made complete sense to me to find the position for the child during the procedure where they felt in control, supported by family and safe. No one wants to be ignored and talked about or above their level of understanding. Who wants to be forced to sit or lay in a position that makes them uncomfortable and vulnerable? And do we want someone to ask our opinion when they ignore it? These are things to consider when treating a child. Wording and body language are everything.
Our afternoon and evening sessions were altered by the weather. Activities were canceled. This gave us the opportunity to go over the latest information on Hedgehog Inhibitor Drugs.
The drugs available so far have been in double blind studies. This is where neither the doctor nor the patient know if they are receiving the drug or a placebo.
The goal to date for these drugs is to prevent new surgically eligible basals (SEBs).
Side effects vary. The cons to the drug do not out weigh the benefits for most people. There were 3 people in our group who are actively taking one of these drugs. Another person there was on the drugs but had to stop as their basal had mutated and become resistant to the drug. All 4 had experienced varying levels of discomfort with the drug. So out of the 4 there one could not take it due to their basal resistant to it. One has been taking it for the 7 month starter dose and in Jan. begins the year at 3 months on and 3 months off. And 2 others have been taking the drug in cycles for a few years with very pleasing results. The side effects are not pleasant. All have some level of muscle cramps. Gatorade seems to be the going thing to help those. Taste disturbances vary with each person. Weight loss varies with each person. Hair loss or thinning varies with each person. And symptoms of depression are noted yet these same symptoms are noted in persons having repeated surgeries and other treatments to remove the basals.
I found the before and after pictures very interesting and intend to speak to my team as soon as I return to check into studies in my area.
Saturday also brought news of flight cancellations so we joined forces to try to get home. Part of our crew made it to the airport Sunday morning and only half of those people made it home that day. Two of our group spent Sunday evening at a hotel closer to the airport.
This is our group plotting escapes for Monday.
I stayed at the hotel until Monday with my mom and after 2 shuttles and 2 taxis canceled on me I got the car service from the hotel and made it to the airport. My flight was to be in St. Louis at 7:15 pm. Due to delays waiting on flight teams, luggage carriers and the like I got into my vehicle in St. Louis at about 10:35 PM. By the time I got to bed it was technically Tuesday. I would not change anything.
The time spent with the BCCNS Life Support Network was priceless.
Take Away Nugget: What you see depends greatly on what you look for.
Our speakers for the day are from Texas Children's Hospital in Houston. I was not sure how this was going to be informative to me. We had a pediatric dermatologist and a Child life specialist. I was pleasantly surprised at their presentation. With the small number of us that made it in they turned a lecture into a general discussion about services available to children with BCCNS. They included personal stories from children who had been to camps for children with skin disorders. Another part of their presentation was regarding helping children get through the daily trials of BCCNS.
In both of these presentations I realized most if not all of this related to the adult patient as well as the child patient. First, by replacing the word child in the lecture notes it takes on a more personal meaning for me.
1) Although I have the disorder, I am NOT DEFINED by this disorder. BCCNS members say I have BCCNS but BCCNS does not have me.
2)Doctors do not always know best. I have to be my own advocate. I have to be a teacher.
3)Patience and a positive attitude will get me far. Do what I can to support others and get the external support I need.
4)Be a good listener and a good friend. You are not just a caregiver or example to just yourself.
5)Don't underestimate the power of touch. We all need reassurance and touch is the most profound way to express caring.
The other part of the morning lecture regarded the child's point of view during the various procedures and treatments for the syndrome. Children are little people. They are sensitive to what's going on and when they have the syndrome become wise and sensitive to procedures very quickly. So many times doctors will address all or most of the conversation to the adults, only addressing the child when they want them to lie down for examination, treatment, etc. They don't consider whether the child feels out of control lying down and would rather sit up or stand. It made complete sense to me to find the position for the child during the procedure where they felt in control, supported by family and safe. No one wants to be ignored and talked about or above their level of understanding. Who wants to be forced to sit or lay in a position that makes them uncomfortable and vulnerable? And do we want someone to ask our opinion when they ignore it? These are things to consider when treating a child. Wording and body language are everything.
 |
| hedge hog family |
Our afternoon and evening sessions were altered by the weather. Activities were canceled. This gave us the opportunity to go over the latest information on Hedgehog Inhibitor Drugs.
The drugs available so far have been in double blind studies. This is where neither the doctor nor the patient know if they are receiving the drug or a placebo.
The goal to date for these drugs is to prevent new surgically eligible basals (SEBs).
Side effects vary. The cons to the drug do not out weigh the benefits for most people. There were 3 people in our group who are actively taking one of these drugs. Another person there was on the drugs but had to stop as their basal had mutated and become resistant to the drug. All 4 had experienced varying levels of discomfort with the drug. So out of the 4 there one could not take it due to their basal resistant to it. One has been taking it for the 7 month starter dose and in Jan. begins the year at 3 months on and 3 months off. And 2 others have been taking the drug in cycles for a few years with very pleasing results. The side effects are not pleasant. All have some level of muscle cramps. Gatorade seems to be the going thing to help those. Taste disturbances vary with each person. Weight loss varies with each person. Hair loss or thinning varies with each person. And symptoms of depression are noted yet these same symptoms are noted in persons having repeated surgeries and other treatments to remove the basals.
I found the before and after pictures very interesting and intend to speak to my team as soon as I return to check into studies in my area.Saturday also brought news of flight cancellations so we joined forces to try to get home. Part of our crew made it to the airport Sunday morning and only half of those people made it home that day. Two of our group spent Sunday evening at a hotel closer to the airport.
This is our group plotting escapes for Monday.
.JPG) |
| l-r Subrena, Pam, Blake, Elvira her husband Adolfo and Nichole |
I stayed at the hotel until Monday with my mom and after 2 shuttles and 2 taxis canceled on me I got the car service from the hotel and made it to the airport. My flight was to be in St. Louis at 7:15 pm. Due to delays waiting on flight teams, luggage carriers and the like I got into my vehicle in St. Louis at about 10:35 PM. By the time I got to bed it was technically Tuesday. I would not change anything.
The time spent with the BCCNS Life Support Network was priceless.
Take Away Nugget: What you see depends greatly on what you look for.
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