Perry Romberg & Trigeminal Neuralgia Update
It is has been quite a while since I have updated on my son's journey with Perry Romberg (PRS) and Trigeminal Neuralgia (TN).
Honestly, it is easier not to talk about it. Pain is the shadow over his childhood. I am a positive person and I tend to only talk about the things that uplift. No one likes being around the person who always talks about their problems. As a rule, I try to talk about it only when asked.
If someone asks my son how he's doing, he always says "Good." No matter how he feels. The answer is good. It's easier.
So here is where we are today. He is almost 14, tall, thinning out, smart, sassy at times, quiet mostly, with a tendency towards kindness, gentleness, and dark humor. He's creative, smart sensitive, handsome. All the stuff moms always say.
Until a two weeks ago he hurt every day. Usually all day. The best medicine we have found is in his friendships. He smiles more, laughs constantly, and seems to be able to put the pain aside for the time he is with his special inner group. He has 3 very close special friends. They are a blessing to our whole family. A great church youth group, and good friends at his Co-op are also great support for him. Oh, and his dog, Princess Peach. We call her Peaches. She is 70 pounds of love and patience with plenty of playful thrown in.
On bad days Peaches will sit with Luke and comfort him. It's pretty amazing. Pets are a gift.
Other things that have helped him is finding activities or hobbies that he can retreat to. He draws, makes music, and works on video game design.
Things that trigger pain. MATH. Seriously. Stress is a major trigger according to his neurologist. Math is a stressor for him. Not the work but the deadlines for turning it in.
What about meds? I know that is what those who are in the same struggle want to know. For the most part, the PRS is not too active. He has pain on the midline of his skull during growth spurts. His face usually hurts from the TN, but the PRS can cause jaw and nose pain as well.
He takes gabapentin (Neurontin), methotrexate, amitryptiline (Elavil), and recently they added citalopram (Celexa). He takes Naproxen for pain once in a while. Because of the medicine, he takes he can't take most over the counter meds. No antacids, antihistamines, NSAIDs... The list is long. This is why I love our essential oils (EO). The naproxen is prescribed but we have to limit it and watch closely, because of drug interactions.
We are upfront with his doctors about our use of EO's and though they can't prescribe it they are in agreement that there are no known drug interactions, and he finds relief with them.
We are a Young Living EO family. I did lots of research before diving in and choosing to use only one company. There are loads of reasons like the seed to seal, the humanitarian projects they do, the completely open way they do business. In the end, we had better results with YL than all of the others we tried. (I tried a lot!) A few other companies we tried had some pretty strong negative results. I found we used a lot less with YL too.
Supplements currently in use (not all at once). Mindwise, omega 3's, Vitamin D, Ningxia Juice, Stress Away on the specific nerve pain. Valor, Cedarwood, Highest Potential, M-graine, Peppermint, Copaiba, Frankincense, and magnesium. We do lots of others but these are our first line of defense. Stress Away goes everywhere with us.
Things we are trying to work out. School. We homeschool and go to a CO-OP once a week. It is a great way to get the lab sciences and upper maths for our family. This year we are finding the strict time frame is causing some trouble. The pain has been constant and high. It is really hard to think through that kind pain and stay on schedule.
Since starting the Celexa I have noticed he seems a bit more chipper. His pain levels are lower. It is early days so we aren't counting those chickens yet, but he has had a few low pain days in a row, and it's pretty obvious. On low pain days, he smiles all the time, is very interactive and active. Plus homework is no issue at all when his pain is low. He knocks it out with few mistakes and little fuss.
The PRS scarring on his face is not too bad, noticeable, but no one ever asks him about it. It does not seem to be progressing right now. The concern is the scarring going on internally. Especially in his brain. He is wearing braces on his teeth which is delaying an MRI as long as he is doing relatively well.
Day to day he functions fairly well. School work is a struggle right now. It takes him longer to do most things. That's partly pain and partly teenager.
We are feeling hopeful with the upturn over the last few weeks, but we live in tornado alley and the weather fronts always create pain. So we will get through this spring and the last few weeks of school and re-access this summer.
It is such a blessing to hear him singing from the other room and the smiles. It is realizing how rarely he smiles because he is battling pain constantly. Really thankful for a string of good days in a row.
Tough is the first word most use to describe him. We are very aware this is his only childhood and we want it to be good. His condition is not the main topic of our lives. It's just there. He certainly doesn't like to talk about it much. and doesn't want to focus on it or even tell people about it. PRS and TN do not define him. Seldom do we even use the names of his conditions. To him, it is a nonissue. He has pain, his friend wears glasses, everyone has something. If you asked him, he would tell you, "It's all good," and smile a little and he would mean it. :)
The last thing I will say about this journey is FAITH. Without our families, church family, and amazing community of believers who surround us with prayer, love, and support, things would be very different. Our God knows, El Roi, my God sees me. God is in this too, strengthening, growing and shaping. He cares, He keeps track.
Honestly, it is easier not to talk about it. Pain is the shadow over his childhood. I am a positive person and I tend to only talk about the things that uplift. No one likes being around the person who always talks about their problems. As a rule, I try to talk about it only when asked.
If someone asks my son how he's doing, he always says "Good." No matter how he feels. The answer is good. It's easier.
So here is where we are today. He is almost 14, tall, thinning out, smart, sassy at times, quiet mostly, with a tendency towards kindness, gentleness, and dark humor. He's creative, smart sensitive, handsome. All the stuff moms always say.
Until a two weeks ago he hurt every day. Usually all day. The best medicine we have found is in his friendships. He smiles more, laughs constantly, and seems to be able to put the pain aside for the time he is with his special inner group. He has 3 very close special friends. They are a blessing to our whole family. A great church youth group, and good friends at his Co-op are also great support for him. Oh, and his dog, Princess Peach. We call her Peaches. She is 70 pounds of love and patience with plenty of playful thrown in.
On bad days Peaches will sit with Luke and comfort him. It's pretty amazing. Pets are a gift.
Other things that have helped him is finding activities or hobbies that he can retreat to. He draws, makes music, and works on video game design.
Things that trigger pain. MATH. Seriously. Stress is a major trigger according to his neurologist. Math is a stressor for him. Not the work but the deadlines for turning it in.
What about meds? I know that is what those who are in the same struggle want to know. For the most part, the PRS is not too active. He has pain on the midline of his skull during growth spurts. His face usually hurts from the TN, but the PRS can cause jaw and nose pain as well.
He takes gabapentin (Neurontin), methotrexate, amitryptiline (Elavil), and recently they added citalopram (Celexa). He takes Naproxen for pain once in a while. Because of the medicine, he takes he can't take most over the counter meds. No antacids, antihistamines, NSAIDs... The list is long. This is why I love our essential oils (EO). The naproxen is prescribed but we have to limit it and watch closely, because of drug interactions.
We are upfront with his doctors about our use of EO's and though they can't prescribe it they are in agreement that there are no known drug interactions, and he finds relief with them.
We are a Young Living EO family. I did lots of research before diving in and choosing to use only one company. There are loads of reasons like the seed to seal, the humanitarian projects they do, the completely open way they do business. In the end, we had better results with YL than all of the others we tried. (I tried a lot!) A few other companies we tried had some pretty strong negative results. I found we used a lot less with YL too.
Supplements currently in use (not all at once). Mindwise, omega 3's, Vitamin D, Ningxia Juice, Stress Away on the specific nerve pain. Valor, Cedarwood, Highest Potential, M-graine, Peppermint, Copaiba, Frankincense, and magnesium. We do lots of others but these are our first line of defense. Stress Away goes everywhere with us.
Things we are trying to work out. School. We homeschool and go to a CO-OP once a week. It is a great way to get the lab sciences and upper maths for our family. This year we are finding the strict time frame is causing some trouble. The pain has been constant and high. It is really hard to think through that kind pain and stay on schedule.
Since starting the Celexa I have noticed he seems a bit more chipper. His pain levels are lower. It is early days so we aren't counting those chickens yet, but he has had a few low pain days in a row, and it's pretty obvious. On low pain days, he smiles all the time, is very interactive and active. Plus homework is no issue at all when his pain is low. He knocks it out with few mistakes and little fuss.
The PRS scarring on his face is not too bad, noticeable, but no one ever asks him about it. It does not seem to be progressing right now. The concern is the scarring going on internally. Especially in his brain. He is wearing braces on his teeth which is delaying an MRI as long as he is doing relatively well.
Day to day he functions fairly well. School work is a struggle right now. It takes him longer to do most things. That's partly pain and partly teenager.
We are feeling hopeful with the upturn over the last few weeks, but we live in tornado alley and the weather fronts always create pain. So we will get through this spring and the last few weeks of school and re-access this summer.
 |
| Country days are healing, fresh air, change of pace, grandparents, cousins, aunts and uncles to goof off with... Blessings! This was how we spent spring break. |
It is such a blessing to hear him singing from the other room and the smiles. It is realizing how rarely he smiles because he is battling pain constantly. Really thankful for a string of good days in a row.
Tough is the first word most use to describe him. We are very aware this is his only childhood and we want it to be good. His condition is not the main topic of our lives. It's just there. He certainly doesn't like to talk about it much. and doesn't want to focus on it or even tell people about it. PRS and TN do not define him. Seldom do we even use the names of his conditions. To him, it is a nonissue. He has pain, his friend wears glasses, everyone has something. If you asked him, he would tell you, "It's all good," and smile a little and he would mean it. :)
The last thing I will say about this journey is FAITH. Without our families, church family, and amazing community of believers who surround us with prayer, love, and support, things would be very different. Our God knows, El Roi, my God sees me. God is in this too, strengthening, growing and shaping. He cares, He keeps track.
Psalm 56:8New Living Translation (NLT)
You keep track of all my sorrows.
You have collected all my tears in your bottle.
You have recorded each one in your book.
You have collected all my tears in your bottle.
You have recorded each one in your book.
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