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

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mydaughtersmom
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/6/2008 10:26 PM (GMT -6)   
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.

momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 6/6/2008 10:51 PM (GMT -6)   

Dear Mom,

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.

Hugs,

Debbie


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 6/6/2008 11:39 PM (GMT -6)   

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


chachka
Regular Member


Date Joined Apr 2006
Total Posts : 21
   Posted 6/7/2008 12:31 AM (GMT -6)   
Hello, Mom

I'm very sorry to learn that a child this young can be Dx with MS. I wish your presuse daughter will have a mild form of disease over her life. I have a relative that was 23 years old when suddenly she got sick and then was sentenced for life with MS. She is 35 now. Please do whatever possible to educate your child about the disease. She is a big girl and she has to now what might happen (doesn't necessary mean though) if she won't take good care of herself.

I have a question for you. Were your daughter's symptoms constant since February or she wasn't feeling well for some time then symptoms faded? I have a 10 years old daughter that had some scary symptoms for almost two month and now she is feeling fine (just still “cracking” her spine). She is usually very energetic, very healthy, loves to attend school but around February or March (don't remember right now but I was taking daily notes back then) she started to complain on dizziness, headache, then tingling in her spine and neck, then tingling and numbness of the left arm, then the left foot. She was crying at some point, missed few days of school, I had to pick her up from dancing classes twice due to her fatigue and dizziness. I kept taking notes for over a month and then took her to a pediatrician who reassured me that my daughter is fine and probably her symptoms are dew to her rapid grows (but she is not growing rapidly at all, in fact, her grows is insignificant this year comparing to other years). The pediatrician (and my son's ped. GI also) told that kids this age don't have MS and it's very very rear in people younger then 25. But still we had a referral to the neurologist. The bummer is – we will see him in late August. Meanwhile my daughter's symptoms vanished, she is not complaining anymore just, as I already mentioned, cracks her spine from time to time. I'm trying not to worry right now since she's been back to normal but on the other hand it's on the back of my mind (especially having a relative with this disease – my mother's young cousin, and having one child on my own who was diagnosed with chronic not treatable painful disease with absolutely no genetic link to it and of which I've never ever heard in my life before his diagnosis – how lucky are we?!).


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/7/2008 8:41 AM (GMT -6)   

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.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 6/7/2008 11:07 AM (GMT -6)   
Hi Mom,
I am crying reading your post...your baby girl! I know how hard this is on you all,omg...My daughter will be 7 in September. This illness is hard for me,at 28 to deal with...if I could take on this MS a million times over for my babies...my God,I would. Your daughter has a GREAT Mom,and I hope she realizes that! The shots are a HUGE pain...they do hurt. They sting. I take the Copaxone as well...same reason,the lowest side effects. For me it got easier for a minute,because the MS symptoms went away...then it hit me again very hard. And I realized yet again,I do have a life long illness. Your daughter can be as normal as she wants to be...do what she can,when she can...thats how I live my days. But she will need people to talk to,that understand what MS is all about and what it is like to live with this type of illness.

I wish I had tons of advice...But I am here to listen:) Best wishes to you all!
 
~Nichole~
 
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
 
 
 


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 6/7/2008 11:46 AM (GMT -6)   
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
Dx MS December, 2006
Started Tysabri March, 2008
Baclofen/Zanaflex Combo,
Cymbalta and Provigil


tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 6/7/2008 1:37 PM (GMT -6)   
Mom,
I am so sorry you are going through this. I was diagnosed at 28 but my neuro reckons I began to have MS when I was 17 when I had my first symptom. He did tell me that the younger you are at the age of the disease beginning the less severe it is. Which does not make logical sense but made me feel better. I would seriously discuss these meds with yout neuro and see what they think. I truly believe it is better to be proactive with this disease but I know how she might feel wanting to wait a while to do the meds. I did not have any meds from 17 till 28. I don't know if I would be better now if I had but I do know that my life would have taken a different path. So I guess I am in the minority saying that maybe she could take a less aggressive approach in the beginning and hit the disease harder later on? Talk to the neuro and see what they have to say about her future and what they think. Young people with MS are in a truly uniques position b/c they will be taking very powerful drugs for a very long time so it is best to do your research now. It will get easier no matter what you do the beginning is the hardest part...... God Bless...

rosieangel
New Member


Date Joined Jun 2008
Total Posts : 2
   Posted 6/23/2008 10:13 AM (GMT -6)   

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. 

 


sjk6215
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/28/2008 10:08 PM (GMT -6)   
mydaughtersmom - I can relate to what you are going through. My daughter was 18 when she was diagnosed with MS about 14 months ago. She had only had symptoms of numbness/tingling in her hands, feet and abdomen/chest a little over 1 month before starting on Rebif. It was really hard at first but it definitely has gotten easier for her. It does sting sometimes. She was an active high school senior and is still very active. She is even on her school's dance team. She was pretty angry at first and it does take some time and maturity to start handling things. She is trying hard to be proactive and doesn't mind telling people that she has MS. I think that's been good therapy for her. She also is the top recruiter on Facebook for having her friends/family sign up to be members of the facebook MS group of supporters. I am really proud of her. If your daughter has a facebook account, I know my daughter would be happy to talk to her. My daughter talks to people from all over the world on this group. It makes her realize how fortunate we are to live in the US. People living in other countries do not always have access to doctors and medicines like we do. The really great news I want to share with you and others is that after 1 year of Rebif and no major symptoms, my daughter's MRI did not show any changes to her lesions. We are very thankful. Okay so now for some not great news that I would like to personally share is that for the last 7 weeks I have been having numbness/tingling in my hands. It started in just one hand so my doctor thought it was just a pinched nerve but about a month ago I started having symptoms in my other hand. My MRI shows 2 small lesions in my brain. I have an appointment with my daughter's neurologist in 8 days. My husband and I find it very suspicious that we both may have MS and with symptoms just a year or so apart. I wish there was more information on environmental causes. I am just now looking more into that. I'd love to hear how your daughter does. Please just hang in there. The shots will get better. My daughter likes to use heat before the shot better than the ice.
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