I can't imagine what you are going through. Bless you for being so proactive. Your daughter really needs you now. Maybe your local MS chapter has a support meeting, or can advise you on books that would help your daughter understand.
I really feel for her. I have two girls that are 12 and 16, with all they go through at that age, I can understand why she wants to keep it quiet.
As for the pain of the injections. I find that the autoject works better for me. My girls even do it for me. The burning of the "fire water" as I call it, lessons over time. Maybe try icing the area before the injection. Also, you can call Shared Solutions for other options that may help lessen the pain. They can also tell you how to adjust the autoject per her body weight. Once I got my autoject set at the right number, it changed things dramatically.
I will keep you both in my prayers that things get easier. Keep coming back here, even to just vent. I have found great support from all on this board.
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.
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.
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.