Very confused and overwhelmed my 15 y/o son has just been diagnosed and we have to choose a dmd I've been reading on copaxone, it's a older drug are there better i like the idea of a pill looking at tecfidea also any thoughts
I'm sure some others will chime in here with opinion and experience, but we do have a booklet detailing and comparing all of the DMDs currently approved to treat MS that may be helpful to you. There definitely may be some consideration regarding his age, and which medications would be appropriate:
Disease Modifying Therapies for MS
It's what works for your son. I was on Avenox it didn't work for me. Now I take Tysabri and it works great. You need to talk with your doctor and see what they suggest. Then you have to try out medications don't be a fraid to stand up for your son though and say this one isn't working for him. There are so many options you will find one that will make his disease stable.
I feel we are on a time clock, I do not want to make a error thank you for your reply, I am so worried and want answers I feel helpless in met efforts I would switch places in a min. And hate the thoughts of his future I. Am Sorry for being negative but this is so hard to believe.
The MS Navigator mentioned a booklet the MS Society has - that was very helpful for me. Also, talk to your doctor once you have done some research and see what he/she recommends, especially being that your son is 15. I am assuming he is still in school, so make sure to ask the doctor about what is best with his school schedule and the impact side effects could have on that as well.
I have been on Tecfidera since 2015 and the first few weeks were rough. I had to stop and restart at a modified titration up to the full dose. Now it is all good - no side effects and no new lesions since I started on Tecfidera, so it works well for me. Everyone is different. I see another post said don't be afraid to switch drugs if needed - I agree. You have to have good communication with the doctor and don't be afraid to speak up.
Aside from meds and this site, I found the book MS for Dummies to be extremely helpful in my first few months after being diagnosed.
Best of luck to you and your son!
Thank you for your reply, his dr. Basically said read up and let me know what you want, the dr is a pediatric ms specialist didn't want to make an opinion he said they would all be ok, right now his only issue is double vision which has resolved after steroids we are afraid to make a wrong decision, I am assuming he (the dr) will have input at our next meeting. My son is so young and now his whole life is in a blender. I understand the Meds only help prevent damage and flares not repair. The not knowing is insane. The wait and see makes no sense to me I am not handling this well I want answers
I've been on Tecfidera now since last Feb, I was diagnosed...finally...last Dec 7th. Since that time and two MRI's later my MS has not changed and appears stable. My neurologist (2nd one...first one and i didn't partner well) figures i've had it for 1-2 decades given the damage.
I totally understand the anxiety you feel...you feel it because in lots of regards you're thinking he is too young to address, cope and deal with this slow process of choosing a DMT...you feel those grown up hurry up and wait frustrations on his behalf.
For me when such a challenge like choosing a DMT is on my plate naturally i want and need immediate relief and answers...wanna move past and beyond this bump in the road! I have found that with MS my world is in slow motion and it drives me crazy fighting it.
Instead i work on accepting my new MS diagnosis...i hear it can take a couple years to stabilize and develop the life skills to cope more gracefully to this new kinda normal. Where are your (my) feet at this very moment!? I use the one day at a time philosophy but with MS find it to be more like one unpredictable moment at a time. I've developed peer support with others who have been here and done this early stage of MS diagnosis. Knowledge is power and given your son is 15 i hope you travel this road with him as a player, not for him without HIS input or opinions. Has he read those pretty DMT sales pitch flyers or side effect info pamphlets with you. It is he who has to take them so he at 15 ought to actively participate...just my opinion having teenage kids myself. They thank God they don't have MS but the in's & out's of my MS are no secret in my house.
Together you and your son really need to develop an attitude of gratitude...it helps curb the anxiety and fear that MS brings to the table. I do A-Z Gratitude Lists when moments get extremely overwhelming and seemingly hopeless....pretty hard to stay negative when you list 26 things you can still do or have in that moment, that day.
I feel your pain and frustration. the Serenity Prayer puts it all in perspective.
God grant my the serenity to ACCEPT the things i cannot change...the courage to change the things i can and the wisdom to know the difference.
Some, no most days, my MS has me facing things i cannot possibly change that day. I take the baby steps i can and move forward to do my best and notice life's little beautiful wonders. It is difficult and challenging having to start my day over throughout the day...in time it gets "easier". Humor is good medicine....funny movies and/or stand up comedians...lol.
Positive vibe wishes for your son and your family....thanks for your post because telling you about tools in my coping with life tool box helps me remember these tools exist...we all here help each other in this MS journey. Certainly helps me in my daily dealings with the "pretty and healthy people"....seriously. Maybe have your son actively participate on this site!?
Reading about the side effects for each drug is important. Let that be your guide. If a drug has gastric effects and your son already has gastric difficulties it will make this more of a discomfort for him. You have many choices for a dmd. Diet is relevant too. You are just learning something new, a new discipline, you do not need to learn it all in one day. What is important is attitude, and your son will take the lead from you. Here there is much info and at nmss.org also and you can call the society anytime. there is also, multiplesclerosisnewstoday.com as an info resource. There are plenty of answers out there for you. For me, what are my most important tools are a quiet mind and soft muscles. Muscle relaxation techniques prevent the nerves from misfiring and a quiet mind relaxes the whole body. You can give him the tools he needs by showing him this is just a challenge to be met, nothing to panic over.
I know this is scary - it took me a good 8 months to calm down and feel like a person and move forward with my life (make future plans, go on vacation, etc.). When the doctor first told me to just go live my life, I didn't know how - I kept wondering when the next relapse might happen, what if I was at work, what if others knew, etc - it was terrifying. I read books and articles and about 3 months after my diagnosis, I came here and started "talking". That helped me more than anything.
I am not a parent and I can't imagine what you are going through right now, but I am sure you will find someone here that can relate.
Pediatric MS has been an area that has been generally underserved until this past year. A number of trials and results have come in making it a particularily hopeful time to have MS at a young age. There is much that can be done. My wife is on Tecfidera, but it is not the medicine that makes the most sense in my opinion for your son. Neither is Copaxane. The trials of Gilyena showed how effective the medicine is in youth and it seems far better then it is in adults. Its an oral medication. There are some concerns like rebound when you stop and some heart monitoring when you start. However, the data really looks good and gives you son the best chance of just stopping progression for many years. Also dont under value the importance of lifestyle modification. A healthy diet full of greens etc now has demonstrated benefit for youth with MS. It is very likely the benefits of these changes will ocmpound over his lifetime. We follow OMS (https://overcomingms.org/news-research/news/)
Here is an accessible article for the Gilenya trial. If your son isnt getting good advice from the doctor it is vitial for you to consider this decision carefully because it is important. Please let me know if you want more links that will help you understand the diease better, there are some good videos to watch. In the end its decision you need to be comfortable with as a family, but there are a number of approaches that each hopefully improve the odds of a great outcome. MS in youth is much more aggressive earlier, but kids have a remarkable ability to recover. The part to be concerned about is if this recovery uses up some long term brain reserves, which is why treating aggressively early is so important.
Cali. thank you thank you thank you. I will be reading all nite