Aa
son has ms
My 14 year old son was diagnosed with MS last week. If anyone has any advice for us I would appreciate it.
The doctor recommends avonex injections for him. Does everyone get the flu like side effects? How long does it last?What can I do to help him?
Also, what is the average amount of time between exacerbations?
We are feeling a little overwhelmed right now and I have lots of questions, so any advice would be great.
Thanks.
The doctor recommends avonex injections for him. Does everyone get the flu like side effects? How long does it last?What can I do to help him?
Also, what is the average amount of time between exacerbations?
We are feeling a little overwhelmed right now and I have lots of questions, so any advice would be great.
Thanks.
Wondering why your post answering mine was changed? You had talked about how you felt perhaps you needed to allow your son to become his own advocate....Those words are now missing. Did you change your mind?
My son "Jordan" is 12 and we are still sitting with "highly suspected MS". Jordan and I are sending your family and your son many warm thoughts from Kansas. Please keep in touch. I would love to know the story of how this all came about and how you were diagnosed. I imagine you are overwhelmed right now but if you ever need to talk, I am here for you. Just write me.
Just wondering how you and your son are doing with this change to your lives. Stay in touch, ok?
Lulu
Lulu
I want to thank all of you for your support and words of encouragement. It's been a rough 3 weeks for us, but we're coming to terms with the diagnosis and we will learn everything we can. We will make the best of this. My son is naturally a happy kid and always makes everyone laugh. His philosophy is that everything happens for a reason and is determined not to let this get him down. He is handling this better than me, for sure.
We are lucky to have an amazing doctor that my son feels confortable with and includes him in every discussion, which helps him feel better about things too.
Thanks again!
We are lucky to have an amazing doctor that my son feels confortable with and includes him in every discussion, which helps him feel better about things too.
Thanks again!
Hi and welcome to the forum. What a shock it must be to you as a mother to find out that your son has MS and so just remember that whatever you are feeling, he will also have feelings and they are likely to be different to yours. So I would suggest that you do not make any assumptions about what he is feeling and allow him time just to come to terms with his dx and to be ready to help answer his questions as they come along.
You have been given some wonderful advice here and I was moved by Alex's honest and heartfelt words and hope that they give you some comfort and hope. Try and keep the lines of communication open with your son, but do not be hurt if he does not want to talk about it yet, or for a while. Try and be understanding and maybe suggest that he talks to a school counsellor if he wants to (not sure if they exist in USA as I am from across the large pond..in England).
I think it is really important that every step of the way he is involved in all decisions about treatment. Although he is a child, he is an adolescent and quite capable if fully informed of being able to make his own mind up about treatment and getting him onto an interferon treatment asap will be a positive step.
There are many here on the forum who will be only too happy to offer you ongoing support and to answer your questions as they arise so keep us posted and good luck with all that is ahead and try and keep strong.
with best wishes
Sarah
You have been given some wonderful advice here and I was moved by Alex's honest and heartfelt words and hope that they give you some comfort and hope. Try and keep the lines of communication open with your son, but do not be hurt if he does not want to talk about it yet, or for a while. Try and be understanding and maybe suggest that he talks to a school counsellor if he wants to (not sure if they exist in USA as I am from across the large pond..in England).
I think it is really important that every step of the way he is involved in all decisions about treatment. Although he is a child, he is an adolescent and quite capable if fully informed of being able to make his own mind up about treatment and getting him onto an interferon treatment asap will be a positive step.
There are many here on the forum who will be only too happy to offer you ongoing support and to answer your questions as they arise so keep us posted and good luck with all that is ahead and try and keep strong.
with best wishes
Sarah
I would do all of the above but add....
Education. Call the school and find out what kind of programs they have available for your son when he is too ill to attend classes. I know our district has an in home program that today uses computers with a teacher visit once per week for testing, etc.
I would stress to him that MS is not fatal. I would warn him that if he joins a message board that he may find some that have a different form of MS than he has and to use caution when reading. I would also stress and stress again and again that although MS is not kind that with the strides made over the last years there is a good possibility of a cure or even to stop progression in his lifetime. Remember even if you won't allow him to join boards and keep a close eye on his internet activity, he can log in at a friends home....so...it is best to prepare him.
I would be a tough task master on school. Sorry for those that may be appalled that I even think of it. It would be too easy...especially for a teen...to use it as an excuse. It was also be too easy for a mother to "give" in thus not preparing him for the real world. (I speak with experience on this but won't go into detail here).
He really needs to concentrate not on the disease but on his future. What does he want to be? Is it practical considering his MS?
Also he should be present any time a doctor is speaking about him. He should also be present when school administrators are speaking about him. He needs to own what is happening to him and find ways to compensate.
The above is my opinion. I am not a medical professional. I am just me.
Education. Call the school and find out what kind of programs they have available for your son when he is too ill to attend classes. I know our district has an in home program that today uses computers with a teacher visit once per week for testing, etc.
I would stress to him that MS is not fatal. I would warn him that if he joins a message board that he may find some that have a different form of MS than he has and to use caution when reading. I would also stress and stress again and again that although MS is not kind that with the strides made over the last years there is a good possibility of a cure or even to stop progression in his lifetime. Remember even if you won't allow him to join boards and keep a close eye on his internet activity, he can log in at a friends home....so...it is best to prepare him.
I would be a tough task master on school. Sorry for those that may be appalled that I even think of it. It would be too easy...especially for a teen...to use it as an excuse. It was also be too easy for a mother to "give" in thus not preparing him for the real world. (I speak with experience on this but won't go into detail here).
He really needs to concentrate not on the disease but on his future. What does he want to be? Is it practical considering his MS?
Also he should be present any time a doctor is speaking about him. He should also be present when school administrators are speaking about him. He needs to own what is happening to him and find ways to compensate.
The above is my opinion. I am not a medical professional. I am just me.
Gablegirl,
Hi there! Welcome!
So sorry for your son's dx. I'm sure you are worried have so much uncertainty about his course.
I highly recommend attending some newly diagnosed seminars, or lectures. Like MS, they are not all created equal. Many times there are doctors who offer the simple basics, but some get into more technical information. They oftentimes pair up a neurologist along with a nurse. I recently attended one where a dermatologist spoke as well. I was thrilled to hear from this doctor because technique is so important where injection is concerned. You'll be glad to know that I learned there is much less injection site problems IM injections. It has to to with the depth of the injection, and IM users seem to have far less problems. And, it's once a week, so less burden where injecting is concerned.
You can go to the avonex website and look for lecturs in your area, but you can also attend ANY MS disease modifying drug seminar simply because the others are available to him. I hightly recommend doing this. My recent attendance was at a shared solutions seminar (copaxone) but I'm on rebif. I went because I knew the neurologist as an MS specialist and gives the latest and greatest on new MS meds.
Thank you so much for trusting us to offer advice. Please ask anything. I hope he has a stable course with MS and you can watch him live his life to the very fullest :)
-Shell
Hi there! Welcome!
So sorry for your son's dx. I'm sure you are worried have so much uncertainty about his course.
I highly recommend attending some newly diagnosed seminars, or lectures. Like MS, they are not all created equal. Many times there are doctors who offer the simple basics, but some get into more technical information. They oftentimes pair up a neurologist along with a nurse. I recently attended one where a dermatologist spoke as well. I was thrilled to hear from this doctor because technique is so important where injection is concerned. You'll be glad to know that I learned there is much less injection site problems IM injections. It has to to with the depth of the injection, and IM users seem to have far less problems. And, it's once a week, so less burden where injecting is concerned.
You can go to the avonex website and look for lecturs in your area, but you can also attend ANY MS disease modifying drug seminar simply because the others are available to him. I hightly recommend doing this. My recent attendance was at a shared solutions seminar (copaxone) but I'm on rebif. I went because I knew the neurologist as an MS specialist and gives the latest and greatest on new MS meds.
Thank you so much for trusting us to offer advice. Please ask anything. I hope he has a stable course with MS and you can watch him live his life to the very fullest :)
-Shell
Hi gablegirl, Alex has shared a lot of her own experiences with you and hopefully there are points that you can take away and learn from.
The best advice I can give you is educate yourself about MS. I often call is MySterious because it doesn't fit patterns and defies explanations and predictions. The therapies that are available to treat MS are so advanced compared to what they were 20 years ago. And it appears there are many exciting new therapy options on the near horizon.
As for the avonex injections - I don't take them but from the discussions around here I know the best thing is to premedicate (alleve, etc) about an hour before the injection. There has always been the idea that you should take it and go to bed to sleep off the side effects. I think a recent study has shown that taking the dose earlier in the day is actually better - it takes about 12 hours or so for the side effects to occur. If he has the shot before bed that means he will be waking up just in time for the side effects to kick in.
You might want to experiment with the timing and see what works best for him. There are some chat rooms for teenagers with MS and he might like to connect with others - I'm sure they will help ease his concerns and answer questions. Your local NMSS chapter should be able to tell you where they are, or drop me a private message and I'll see what I can offer.
I see you are in Montana and I'm guessing you are probably pretty removed from any large MS centers. If possible be sure to connect with one of the specialized MS centers, if you haven't already done so. Your son has a chronic disease and he needs to be in the care of specialists who stay on top of the reasearch and advances in treatent.
I'm sorry your son has this diagnosis - it truly is something your entire family is affected by. Encourage him to stick with a therapy because they do work for most people.
Hopefully you will come back around and ask quesitons and learn what you can from us. This is a pretty smart group and always willing to discuss anything and everything MS related.
best,
Lulu
The best advice I can give you is educate yourself about MS. I often call is MySterious because it doesn't fit patterns and defies explanations and predictions. The therapies that are available to treat MS are so advanced compared to what they were 20 years ago. And it appears there are many exciting new therapy options on the near horizon.
As for the avonex injections - I don't take them but from the discussions around here I know the best thing is to premedicate (alleve, etc) about an hour before the injection. There has always been the idea that you should take it and go to bed to sleep off the side effects. I think a recent study has shown that taking the dose earlier in the day is actually better - it takes about 12 hours or so for the side effects to occur. If he has the shot before bed that means he will be waking up just in time for the side effects to kick in.
You might want to experiment with the timing and see what works best for him. There are some chat rooms for teenagers with MS and he might like to connect with others - I'm sure they will help ease his concerns and answer questions. Your local NMSS chapter should be able to tell you where they are, or drop me a private message and I'll see what I can offer.
I see you are in Montana and I'm guessing you are probably pretty removed from any large MS centers. If possible be sure to connect with one of the specialized MS centers, if you haven't already done so. Your son has a chronic disease and he needs to be in the care of specialists who stay on top of the reasearch and advances in treatent.
I'm sorry your son has this diagnosis - it truly is something your entire family is affected by. Encourage him to stick with a therapy because they do work for most people.
Hopefully you will come back around and ask quesitons and learn what you can from us. This is a pretty smart group and always willing to discuss anything and everything MS related.
best,
Lulu
It is never easy to face this diagnosis. It is hard for a parent since you want to take it away.
First learn all you can about this disease and specifically the kind of MS he has. I am assuming it is relapsing remitting. The NMSS has information. That said You might not want to overwhelm him. Be honest but take it one step at a time.
You may need support as a family. May be counseling with a professional who understands chronic diseases? Mainly taking it one step at a time.
The good news is he may live a pretty normal life. I had MS from early childhood and am still doing pretty well at 48. The only difference is I did not know what I had was MS and I was not on treatment because there was no such thing.
There are avonex users who can give pointers on helping with side effects.
Everyone with MS is different. Some people have short exacerbations, others longer. Some folks go years between them and others have them more often.
It will be a roller coaster of emotions the first year.
What would have helped me growing up would have been support and understanding with out pity or making excuses. I wish I could have understood why things were the way they were. I did not understand some of my permanent issues because they were not explained to me. I hated when people looked at me as if I had two heads. Oh and the parental guilt was a killer.
For better or worse this is his disease. He will have to find his own way. You can love him and let him know you care. Always be honest with him otherwise things are just confusing.
He will go through sadness and anger and frustration at times. Teach him life is made of the many good moments. Very few days do not have good moments. Let him follow his dreams this is not an ending. All of you acknowledge fear and "say well we can move through fear".
I train dogs and do art and ride horses. I married a great man. I got to work in the mechanical field climbing ladders. i have had MS probably since I was 2.
There are MS Pediatric Centers of Excellence in the Country I am not sure if you can travel to any.
This is hard but not an impossible challenge. I wish he did not have this disease.
Alex
First learn all you can about this disease and specifically the kind of MS he has. I am assuming it is relapsing remitting. The NMSS has information. That said You might not want to overwhelm him. Be honest but take it one step at a time.
You may need support as a family. May be counseling with a professional who understands chronic diseases? Mainly taking it one step at a time.
The good news is he may live a pretty normal life. I had MS from early childhood and am still doing pretty well at 48. The only difference is I did not know what I had was MS and I was not on treatment because there was no such thing.
There are avonex users who can give pointers on helping with side effects.
Everyone with MS is different. Some people have short exacerbations, others longer. Some folks go years between them and others have them more often.
It will be a roller coaster of emotions the first year.
What would have helped me growing up would have been support and understanding with out pity or making excuses. I wish I could have understood why things were the way they were. I did not understand some of my permanent issues because they were not explained to me. I hated when people looked at me as if I had two heads. Oh and the parental guilt was a killer.
For better or worse this is his disease. He will have to find his own way. You can love him and let him know you care. Always be honest with him otherwise things are just confusing.
He will go through sadness and anger and frustration at times. Teach him life is made of the many good moments. Very few days do not have good moments. Let him follow his dreams this is not an ending. All of you acknowledge fear and "say well we can move through fear".
I train dogs and do art and ride horses. I married a great man. I got to work in the mechanical field climbing ladders. i have had MS probably since I was 2.
There are MS Pediatric Centers of Excellence in the Country I am not sure if you can travel to any.
This is hard but not an impossible challenge. I wish he did not have this disease.
Alex
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