My 11 year old daughter has been diagnosed - high risk of getting MS

[Shebjo]

Hi. I am the mother of twin girls and one of the girls was recently diagnosed as being high risk for getting MS and just started Avonex. They say that MS primarily effects white females ages 20 - 40 but My daughter is just 11 years old and African American .... So go figure. Like many of you- I am getting informed about MS but it's still overwhelming. Since she can't register for this site due to her age ... I am doing so. Here's her story:
Back in April 2013 - daughter was complaining of double vision. She was hospitalized for a week. They did Brain MRI and found 1 lesion on cerebellum. The first diagnosis was she had a brain tumor but a neurologist and a radiologist didn't think it was a tumor and so a spinal tap was done and it showed no problems.
Then in May another MRI showed that there was still just that one lesion and it was getting smaller .. So it was confirmed it wasn't a brain tumor ( because it it had been - the lesion would have gotten bigger). Thank God it wasn't a brain tumor.
Anyway, since Aprils she has been under care of a pediatric neurologist who specializes in MS in children and my daughter and I really like her. Now from April - August, my daughter had about 4 MRIs and it only showed just that one lesion and it was getting smaller. Her double vision had just about disappeared and physically she was back to herself. Note to treat the double vision - she was given steroids and that and time helped. Note that after the hospitalization, she was out of school for 2 months ( was tutored at home for 1 month).

Anyway, the neurologist initially didn't think she had MS because on each MRI it showed just that one lesion (which was getting smaller on all the MRIs) and she wasn't showing any physical or cognitive signs of MS . Then this past Nov. She had another MRI and it showed that the first lesion was same size but that she had developed a 2nd lesion in another area. She still is not showing any physical or cognitive signs of MS and her double vision is minimum .. Almost gone completely. Neurologist says that MAI shows she has mild form of MS or rather more technically, she has CIS .... at high risk of MS and so she says they treat CIS at high risk of MS and a MS diagnosis the same.
So My 11 year old daughter started Avonex on Friday Dec. 20th - she started with the pre filled syringes and will start the pens in about 3 weeks. So far, she has primarily complained of headaches for a couple of hours ... So not too bad. Hoping the side effects don't get any worse. Thanks for listening and I will post more on her progress as things go along

[football-mom]

I am so sorry to hear that a young child is dealing with this.

I am also black and that demographic of white females age 20-40 isn't necessarily true, I've read of some recent studies that show in the U.S. at least that African-American women are catching up to that stat and may have been a higher demo before but they can't tell because of the lack of healthcare blacks had previously.

I'm very glad your daughter's doctor is treating her aggressively and getting her started on treatment so fast. That's the best thing that can be done for her.

[tspaulding]

[QUOTE=Shebjo;1437908]Hi. I am the mother of twin girls and one of the girls was recently diagnosed as being high risk for getting MS and just started Avonex. They say that MS primarily effects white females ages 20 - 40 but My daughter is just 11 years old and African American .... So go figure. Like many of you- I am getting informed about MS but it's still overwhelming. Since she can't register for this site due to her age ... I am doing so. Here's her story:

Back in April 2013 - daughter was complaining of double vision. She was hospitalized for a week. They did Brain MRI and found 1 lesion on cerebellum. The first diagnosis was she had a brain tumor but a neurologist and a radiologist didn't think it was a tumor and so a spinal tap was done and it showed no problems.

Then in May another MRI showed that there was still just that one lesion and it was getting smaller .. So it was confirmed it wasn't a brain tumor ( because it it had been - the lesion would have gotten bigger). Thank God it wasn't a brain tumor.

When I was in HS I had CT scan to rule out a brain tumor due to left eye problems. Then at 21 I was dx w/ ON and RRMS. I had frequent urination at 16, neuro thought I has ms then.

I would encourage ur dau to come to this site, I have seen many teens here, and it is a G rated site.

Sounds like u r being a great mom and supporting your dau however u can.

RRMS dx 95, on Gilenya x2 yrs

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Shebjo]

Hi. I am the mother of twin girls and one of the girls was recently diagnosed as being high risk for getting MS and just started Avonex. They say that MS primarily effects white females ages 20 - 40 but My daughter is just 11 years old and African American .... So go figure. Like many of you- I am getting informed about MS but it's still overwhelming. Since she can't register for this site due to her age ... I am doing so. Here's her story:
Back in April 2013 - daughter was complaining of double vision. She was hospitalized for a week. They did Brain MRI and found 1 lesion on cerebellum. The first diagnosis was she had a brain tumor but a neurologist and a radiologist didn't think it was a tumor and so a spinal tap was done and it showed no problems.
Then in May another MRI showed that there was still just that one lesion and it was getting smaller .. So it was confirmed it wasn't a brain tumor ( because it it had been - the lesion would have gotten bigger). Thank God it wasn't a brain tumor.
Anyway, since Aprils she has been under care of a pediatric neurologist who specializes in MS in children and my daughter and I really like her. Now from April - August, my daughter had about 4 MRIs and it only showed just that one lesion and it was getting smaller. Her double vision had just about disappeared and physically she was back to herself. Note to treat the double vision - she was given steroids and that and time helped. Note that after the hospitalization, she was out of school for 2 months ( was tutored at home for 1 month).

Anyway, the neurologist initially didn't think she had MS because on each MRI it showed just that one lesion (which was getting smaller on all the MRIs) and she wasn't showing any physical or cognitive signs of MS . Then this past Nov. She had another MRI and it showed that the first lesion was same size but that she had developed a 2nd lesion in another area. She still is not showing any physical or cognitive signs of MS and her double vision is minimum .. Almost gone completely. Neurologist says that MAI shows she has mild form of MS or rather more technically, she has CIS .... at high risk of MS and so she says they treat CIS at high risk of MS and a MS diagnosis the same.
So My 11 year old daughter started Avonex on Friday Dec. 20th - she started with the pre filled syringes and will start the pens in about 3 weeks. So far, she has primarily complained of headaches for a couple of hours ... So not too bad. Hoping the side effects don't get any worse. Thanks for listening and I will post more on her progress as things go along

I also wanted to add that my daughter started her period a few months ago ( at 10) so this has been an interesting period- starting of period and this MS diagnosis. when she took her 1st injection of Avonex a couple of weeks ago, her period was also on and so when she complained of a headache and layed down more than usual - I wasn't sure if it was due to the period, Avonex or both. Daughter said it was from Avonex because the headache was worse than usual

[susanmastrocola]

Hi Shebjo,
What a nightmare as a Mom to go through this. I have had MS for 18 years & my fear is that my girls are at a higher risk.
Since we live in FL hopefully all the sunshine will ward it off.

wanted to comment on Avonex. it was the first drug I tried and gave me terrible flu symptoms for 2 days a week after injection. I may not have given it enough of a chance, but I did stay on Copaxone for 10 plus yrs. which kept me stable. After too many injections, I'm now taking Gilenya. So far so good.

Copaxone had no side effects except for 2 episodes where my heart was racing & felt pressure like a heart attack. (very scary but only 2ce in 10 yrs.) Its a daily shot, so she won't like that, but it's subcutaneous & doesnt hurt nearly as much as Avonex in the muscle! Just wanted to give you a little perspective on the meds. Can't imagine how your daughter's handling all this at such a young age.

I was very depressed the first 2 yrs. I'm still walking & driving. My Optic Neuritis is fine right now. I find the vision issues do tend to come & go. The good news is, there are so many more options now. Hopefully stem cells or some new treatment will really work! I will pray for you all.
S.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Shebjo]

Thanks for the responses thus far - I do appreciate them. My daughter hasn't complained about the injections hurting ... I know it's only been 2 shots thus far but Actually she hasn't even bled - not even a pinch. I am hoping that because it was diagnosed early in her life and because there are more choices - and with increased technology that this will bold well for her future and for everyone's future. And since her neurologist is a pediatric neurologist with specialty in MS - I feel lucky. She has been open with us and treats my daughter like a young adult - and a human being. She was straightforward to her and talked to her about the injection options she had and it was my daughter who selected the Avonex over the daily injection. Although the doctor says it's unlikely her twin sis (fraternal) has this condition, the doctor will check her out too.

[Alicious]

Not much to say, just sending a mom to mom cyber hug for you and your daughter. I am so glad she is getting good care and has you to walk her through this, hard as it is.

[Jules A]

Your kiddo sounds like a real trooper! I'm so sorry you have to be here but glad you found us. Please keep us posted and I will pray this disease is kind to her.

[from2344]

Hi and welcome here it is truly a great place to share and to learn.

I have no words to tell you how truly sorry I feel for you and your daughter. I am 42 and was recently diagnosed with ms and it turned my life completley around. I really can't even imagine what you and your baby are going through and I just wanted to say your at the right place and I hope you find some peace here.

I too take avonex and have been for 6 months now and I am pretty lucky with side effects from it. If I don't stay very very hydrated I get flu like symptoms and also if I forget to take ibuprofen before my injection and every 4 hours for 24 hours. I hope that your daughter keeps doing well with it and that she is as lucky as I have been with the medicine.

Best of luck to you both and I will be praying for you and your daughter as you go through this journey together.

[palmtree]

One of the hardest things for me about being diagnosed with MS has been feeling different, sick and chained to a medical merry go round. And I am 60.

I'm glad your daughter is getting such wonderful care and they are treating is aggressively.

I would encourage you to cling to the hope that she will not develop full blown MS and to do everything possible to help her live a normal life. This all must be exasperating at times when you have your own MS to face. My heart goes out to you.

[Shebjo]

I would encourage you to cling to the hope that she will not develop full blown MS and to do everything possible to help her live a normal life. This all must be exasperating at times when you have your own MS to face. My heart goes out to you.

Thanks palmtree... But that's the thing as I don't have MS nor does anyone in the family (my side or the dad's side).

[Shebjo]

Just a brief update: This past Friday, my daughter completed her 1st month of the Avonex. Next week, she starts the Avonex pens. No major aches to report thus far with the medicie - everything seems manageable. The first week she had a major headache for a couple of hours after taking injection (1/4 of full dosage); the 2nd week (1/2 full dosage) - she had headache but not so bad; the 3rd week (3/4 full dosage) - she complained of some muscle aches and this 4th week ( full dosage) - complained of some body aches. Hope she has minimum symptoms using the pens.

[DebbieB]

Shebjo, Welcome to MSWorld! I'm so sorry for what you and your daughter is going through. Don't have a whole lot to add to what previous posters have provided, just wanted to say welcome and my thoughts are with you and your family.

I've found tremendous information and support through MSWorld and hope you do as well.

[kellygrn]

Just a Hello from an old timer

My first episode was at age 12, in 1960. No meds or treatment of any kind available. Just told to live life as best as I could. Well, I did. I am now the Mom of 3 wonderful kids & granny to 7. Done all sorts of work & basically took care of myself alone until a few years ago when I got an aide for 30 hours a week.

Your child can have a wonderful life. Just allow her to do anything she thinks she can do.

Love,
KK

[Themen1985]

How is your daughter doing so far?