my 15 yr old daughter newly diagnosed with ms, need advise

My daughter is 15 and recently diagnosed with ms. I guess you could say we were fortunate (how ironic that sounds). She only started having symptoms in Feb of this year and was immediately sent to a neurologist who did an mri the next day to look for a tumor or ms. They were worried about a tumor on the cervical spine and thought it would be terminal due to location and large size. Turns out they diagnosed it as a lesion and found a few more smaller lessions on brain. Have seen a few specialists for some other opinions and it was concluded it was ms and we decided to start her on copaxone. Her father and I were so thankful that it wasn't terminal we figured we could cope with anything! Also thankful that it did not take years of dr visits and loads of $ to diagnose!

This is were my problems start... We decided on the copaxone because of the low side effects and, hopefully, great longterm effect since she was diagnosed so young. She is an average active high school girl who wants to be just like all the other kids. Doesn't want anyone to know she has any disease that makes her different from all the other kids. Luckily initial symptoms have finally cleared up (tingling and numbness in feet, legs, hands arms and chest) so to her she thinks she is cured. HATES the shots. Hates needles, I give her the shots, and she says the burning is awful. Every night at for at least 1/2 hour it is screaming and tears. Only been on it for 2 weeks so I know it is new and hopefully will get better.

She wants to stop the shots. Says she would rather deal with the disease later and live her life now. I know that a 15 year old can only look into the immediate futer, and that it is my job as her mom to think long term. I really believe the shots are the right thing for her. I told her that when she is 18 she can make her own decisions but for now she has to do the shots. I guess I just need some feed back from others who are experiencing what she is going through. As she says, I don't have to feel the pain (of course, no way for her to understand the pain I go through watching her).

I know that she has no idea how severe this disease can be and I am trying to help her stay that way so she isn't afraid of the future. Yet, I am trying to convince her how necessary the shots are. Any advise would be appreciated. It makes it so hard that it is my daughter going through this and I can't take it away.

Hi Mom,

Welcome. I am so sorry to hear about your daughter’s dx, and like Debbie I cannot even imagine what you are going through right now. I was on Copaxone for around 9 months, and in the beginning it really did burn badly after each shot. I am an adult, and I can still definitely understand why your daughter cries after each injection. However, as the months progressed, the really intense burning finally did ease up for me. It still burned after each shot, but not like in the beginning. At around the 6 month mark the injections were no longer a big deal, but it definitely did take me months to get to that point. I hope both of you can hang in there…it can definitely get better over time.

Both Shared Solutions and the nurse that did my injection training suggested using heat on the site prior to injecting (something about dispersing the med if I recall), and following that with ice after the injection. However, they also said that there are a variety of ways that people do the heat/ice thing, and some don’t use either one. I experimented with heat, ice, and the autoject settings. I found that while heat did little for me, the ice definitely helped with the burning afterwards. As Debbie mentioned above, I also found that adjusting the autoject settings helped the injections go better. I was pretty underweight at the time, and used different settings on the various injection sites depending on how much flesh I could “pinch.” I just wanted to add again, the shots got way easier for me over time…not only did I experience less pain, they became a normal part of my nightly routine and stopped being the big traumatic event they were in the beginning. I don’t know if the above info helps, but I wish you both well, and hope you’ll find this forum to be a source of information and support for both of you.

Sunny

Hello Mom,

Welcome to the board. I am so sorry to hear of your daughter's recent diagnosis. I, like your daughter, was diagnosed very quickly and that is a blessing. Your daughter is in that denial stage of this disease. There are stages of grief that you go through when you find out you have a chronic disease. You may want to look into counseling for your daughter. That may help her to understand what she is going through a bit better. Like most of the others have said, with copaxone the pain does get better over time. Do try to heat the injection site before and I warm the injecion itself by just tucking it under my arm for about five minutes. That allows it to be closer to body tempature and that may hurt less. I suspect the tears and the screaming is more a rebelling against having this disease than the shots itself. The shots just serve as a reminder that she has MS. If you have not already done so, please contact your local MS Society and see what they can help you with. They usually offer short term counseling for the newly diagnosed. Mine offers one-on-one counseling.

Your story is heartbreaking. Those of us who have children pray for them to grow up healthy and happy. Having something wrong with your child is the most painful thing that can happen to a parent. So please take good care of you too. The MS Society will have opportunities for you as a caregiver as well. I wish you the very best of luck. You are in my prayers.

Hi Mom,
I am so sad reading your post. I also have a daughter, she is 11 years old, and that is my worst fear.Please know that you both are in my thoughts and prayers. This has to be the toughest thing for a mother to deal with. Hopefully she will start to realize that to hopefully keep this disease quiet she needs to do this. Thank goodness that you all found this quick. She is very lucky. Some folks, including myself, suffer for years before you find out what is the matter. She will do fine, like Gretchen said, you go thru stages, and some are tougher than others. She has a great mom and like Sunny said, it gets to be routine, just like brushing your teeth. I wish you all much luck, and please let us know how things are going with her. God Bless.
Take care,
Lynn

I am so sorry to hear about your daughter, and I can empathize with your pain as a mom. I was looking for a chat room to gain support/advice for my feelings about my son, who was diagnosed two weeks before his 18th birthday. My mom passed away two weeks later from complications of MS. I shared that point only to describe to you the fog we were in at that time of our lives. My son is now 22, and I wish that I had handled things differently. I wish that I would have put him immediately into counseling (I left the decision up to him). I couldn't "force" him to take his medications, but in many ways, I wish that I had! He would stop and start -- and, of course, once he moved out, I really had no say in the matter then. His disease is progressing, and he suffers with cognitive issues. I think that your daughter would definitely benefit from counseling. The key is to find someone that they can relate to, because you can't force her to talk, but in time, she may come to open up to the counselor in ways she won't be able to with you. I'm convinced now that this might have been "key" to my son accepting things a little sooner. ???

I am having difficulty watching my son drift emotionally. Physically, he is experiencing a tingling/numb sensation in his hand and arm. He doesn't have trouble walking, talking, or with his vision. He has ulcerative colitis that seems to be under control. Upon site, he looks fit as a fiddle! But he has not completed any classes in three years, he starts/quits/or gets fired from part-time jobs. He seems to have trouble problem solving, concentrating, and is impulsive. The neurologist has put him on additional medication to help him with concentration. And my son started his Betaseron shots a week ago. He is living at home. He knows what he wants to do, but it's the steps to meet the goal that he seems to have so much trouble with. He doesn't always "connect the dots" so to speak. I honestly don't know what to do to help him. I did convince him (with some leverage about the conditions of living a home) to see a counselor. He talks about returning to school, finding a job -- I don't know what resources might be out there for him. We're looking into programs he might be interested in, and I've had discussions with him about the extra help he might need so that he can be successful in completing his schoolwork (ie. tutoring). But schooling may not be the answer for him -- I'm wondering about employment options. Both he and I KNOW that he has to do a lot of this on his own, but I want him to realize (I think he does) that he's not ALONE. I talk to him about taking advantage of the resources/assistance offered to set himself up for success. By the way, he doesn't act "depressed". He just acts like he can't seem to go from A to B to C -- he'd rather just go A to C and doesn't think about the fact that consequences are going to occur. It's tough to watch all this!! On my end, I have to figure out how to separate myself from him enough so that he can stand on his own two feet, but also be there as a support. I do better some days than others.