My daughter and MS

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Wed, May 14, 2008

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I feel like.....

I was thinking about this disease and my daughter. I know that it hasn't been proven that MS is a genetic disorder but many times if someone in the family has it there is a greater chance that others in the family can also get it. And it is more common in women than men. I know of someone that has MS, as well as her mother and 2 sisters. Now that makes me worry about my daughter, GOD bless her. She is only 8 and she can be a drama queen and strives for attention. It's the curse of being the middle child and the only girl. So when she complains about her aches and pains, GOD forgive me, but sometimes I'm not sure I believe her all the time. I don't know if she is striving for attention and if I give it to her over ever ache and pain, that may or may not be real, she will learn that in order to get attention from me she has to be sick. That is not a lesson I want my daughter to learn. I guess my best advice to myself would be to find ways to give her attention to satisfy her need for attention, which I try to do.

Now I am also concerned about these aches and pains because I'm worried about her developing MS. I don't know the likelihood of her getting it as a child. I don't know if she is always copying some of my aches and pains that she sees me with. Example: My right tendon can get stiff out of nowhere and it becomes hard for me to bend my foot, it also resolves itself out of nowhere. Well, when this 1st happened to me the very next day she was complaining of the same ailment. She can see how sometimes I can get confused, and she has acting the same way. My legs get numb easily and then when the blood is coming back into it they hurt. I'm not sure if it is normal for your limbs to hurt after they are numb but this happens to her a lot also.

She was complaining about her neck hurting when she puts her chin to her chest, which she has to do when I am putting her hair in pigtails, so I took her to the doctor, explained my concerns, they gave her an x-ray and didn't see anything wrong in her neck, the doctor said it could be stiff because of the way she sleeps. I also complained because I think she trips more often then a person should when they are walking on a smooth surface. The pediatrician sent me to an orthopedic doctor because she is pigeon-toed. The orthopedic explained to me she is pigeon-toed because of her hips, it's nothing that a brace can correct but it shouldn't make her trip, he explained to me that some people are just "not as graceful" as other people. So I guess he was trying to politely say that maybe she is clumsy. She complains about headaches. The doctor said she probably needs to drink more water, she could be constipated, she needs to lose a little weight, she may be getting headaches because of her vision. So now she has glasses. I thought maybe she had sinus problems like me that are causing her headaches but still I am concerned. I don't want to speak any ailments on her but I don't want to overlook anything either. GOD help me. She is only 8.

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Mandy Crest

5/14/08 2:48pm

So much about your post is familiar to me. My daughter is now 19 years old. She also was the only girl -- and middle child -- which she points out at every opportunity. Her left foot was pigeon-toed her whole life and we were told that there was nothing we could do about it. As it turns out, at age 19, she has just about beat that with the use of -- you guessed it -- a hip brace.

She always tripped more than your average person, and still does. I, too, am concerned about MS. Genetics and the male/female percentages give me a bit more cause for concern for my daughter than my sons.

When my children were very young, I suffered from horrendous migraines.The children misunderstood what I was going through, and thought that headaches meant grouchiness, or a bad mood. They often complained of headaches, when they really meant that they were feeling out of sorts. I would imagine that young children living with a parent who has MS may also be prone to imitation due to misunderstanding.

I don't believe any of my children display any true signs of MS, but the worry will always be with me.

We've just got to have hope for that cure, or better treatment for MS, before another generation comes of age.

In the meantime, I just like to focus on the fact that MS is still fairly rare, and the likelihood for our children having MS is relatively low.

theresag79

5/15/08 10:32am

Thank you Mandy for your comment. I realize that I am not the only parent that worries but somehow it is comforting to know that there is some one else out there with similiar concerns as me and with words of encouragemt to remind me that MS is rare. I will make it my mantra for my children. MS is rare.

Krissy

5/16/08 3:00pm

I actually just stumbled upon this page and wow.... I have been suffering from severe migraines since I was a teen and in the last 4 years worse and worse and worse.... In 2004 during my 2nd pregnancy I was diagnosed with AV Nodal reentrant tachycardia... I received adenosine via bolus IV in the ER 3 times during my pregnancy... believe it or not the 2nd and 3rd times were a hell of alot scarier then the 1st because I KNEW what to expect... not to downplay the horror of the first time but I didn't know the horror until that drug coursed through my veins feeling as though they gave me the wrong drug and it was stealing my life.... and then in a matter of 30 seconds my heart rate went from 220 to 0 for 6 seconds which felt like an enternity.... Its a form of cardioversion which stops and restarts the heart. At that time I was only 12 weeks pregnant and the life growing inside of me was not even considered viable until I was 24 weeks so there was no concern whatsoever for my unborn child. not even so much as a doppler to check for a heart beat just to put my mind at ease. I mean they feel what we feel right??? Needless to say I gave birth via c-section 4 weeks early and delievered a 4lb 11oz healthy baby girl... what a little peanut due to being born early and the medications I was taking which causes low birth weight ie digoxin and Toprol (first lopressor which bottomed out my bp so i was switched) this kept me stable and then once she was born I would go as low as 25 bpm to unregisterable elevations.. the highest that was recordable was 290 bpm. When Jamie was 3 weeks old. Jan. 18th 2005 I had my first of 5 cardiac ablations which ended in a dual chamber pacemaker (Oct 18 2005) that I am completely dependant on no underlying heart rhythm at all. One malfuntion or damage to the small titanium computer in my chest and it is all over for me... At this time it was suspected that the fatigue I was feeling would go away, but it didn't it got worse! My Cardiologist confirmed it wasn't my heart that it had to be something else...( so now Im thinking that I am crazy and its all in my head) Started eating healthier, excercising as much as permitted, and in April of 2006 had a total abdominal hysterectomy secondary to 3rd stage cervical cancer and endometriosis which had invaded my entire abdomen... I kept one ovary which at the time was healthy and it was decided by my OB that it would stay in despite the objection of my husband and myself (I didn't want to have to go back in a year and have to have it removed due to the mass and cysts which caused me to need to have the left one removed. The pathology report even came back with a confirmation of "encapsulated cancer" found inside the left ovary as well. The reason for leaving in the right ovary???? The OB was concerned about osteoporosis and menopause (Because I can't have hormone replacement because of my heart) my thinking is osteo and menopause wont kill me but another surgery or cancer can!!! But here I am in 2008 searching for a surgeon that isn't afraid of my health issues because my right ovary has a mass in it and needs to come out! Law suit not an option....I tried BELIEVE me.

After the hysterectomy, unstable hormones were the blame for the increase in fatigue and migraines and at this time I was also diagnosed with Fibromyalgia after a 6 week study of pain to the lightest touch in certain areas of my body. they also found with ct scans that I have herniations at every disc space in my neck ranging from moderate to severe, along with degenerative disc disease and moderate spinal stenosis (did I mention I was 32 when all this started?) I was also a nurse for 14 years and worked the night shift every other day to avoid the need for day care for my oldest girl 6 now. my lumbar showed herniations at L2-3 L3-4 L4-5 L5-6 L6-7 Right down to S1-2 along with again moderate spinal stenosis. So now we have reasons for the numbness and tingling I would get when putting chin to chest and the absence of coordination in my legs I fall and trip alot) however it still didn't explain the cognative issues that were getting worse (altho it was at first blamed on stress and the effect of all these diagnosis on my psyche) and it didn't explain the inability to walk heel to toe without falling down. balance was a major issue for me along with dizziness and that feeling of being drunk because when you move your head you get a god awful wooziness... thank god the really bad wooziness lasts only 3 days max. I was also diagnosed with restless leg syndrome because of the electrified feeling I get in my legs sometimes its a tingle that is painful and sometimes its the electric feeling or some that are hard to explain but bottom line the only relief I get is walking around.... it doesn't make it go away it just makes it more tolerable for whatever reason. the thing that baffles me most about it is I get it during the daytime too not just at night....so that covers one more symptom which if you notice they are dignosing these things as separate illnesses as opposed to looking at them all as symptoms to a bigger picture. Still not sure where the bladder problems (when I gotta go I GOTTA GO) and usually not able to make it to the bathroom in time ( naturally blamed on the hysterectomy) and the vision disturbances (temporary loss of peripheral vision 15 minutes to 30 minutes) and flashes double vision episodes and increasing decline in vision causing the need for stronger glasses was opthalmic migraines however the visual fields testing is inconclusive due to my inability to focus on the dot. I lose focus because anything I stare at like that turns into two very clear dots...so which one do I focus on. however they are 80% sure that there is some peripheral neuropathy more dominant in the right eye.... ok another problem solved. No bladder infection. pressures in urodynamic study suggest a neurogenic bladder. no inner ear infections however they have blamed and diagnosed me with vertigo for which the meclazine I take does NOTHING... the pain I have is indecribable and constant.... some days worse then others but the fatigue I believe screws with my mind more then ANY of the above because I CANT PROVE IT... I have been on provigil 200mg twice a day for a year now and it really does not help all that much.... I can't have a lumbar puncture because of the condition of my spine and the vicious spasms I get therefor making it too risky because they could nick something they shouldn't and actually paralyze me. they wouldn't even do it under fluroscopy,,,, they sent me home..... they can not get an MRI of my brain because I am pacemaker dependant. However recent ct scan showed a cellebellar mass measuring 18cm in diameter. however they are doing nothing because they need an MRI for a better "look" my neurologist is 99.9% sure that I have MS but the MSCCC at holy name will not be convinced or start me on Copaxone without a definative diagnosis.....

ok i vented..... I pray to God everyday that they will find a way to diagnose me BEFORE I end up in a wheelchair........... Any suggestions???

KrissyL326@aol.com

lori

5/18/08 6:23pm

there are preventative things. I gine my children vit d 3.... I suggest staying away from dairy. Look into some nutritional things that can help anyone to stay healthy. I have ms- no one in my family line has it...

Kristin

5/22/08 3:22am

Hey Theresa,

I totally know where you are coming from. I too wonder when my older one (5 yrs old) complains. I wonder when she says her legs are tired. Then I think back to when I was a kid and my legs used to fall asleep. Was that a sign and if she is experiencing the same feelings, will she develop MS when she gets older.

Kids with MS are very unusual, however they unfortunately do happen. The news on this website actually has some recent findings on kids with MS. I know the MS Society is funding a large project to look at kids who have MS in hopes of isolating the triggers of MS and my chapter here in DC is working with families of kids with MS.

Allthough MS is not genetic, the genes you pass on could POTENTIALLY make your child more susceptible, however it is still a SMALL percentage. I heard one doctor say that if the percentage of people in the general population that get MS is 1%, it is double if a direct relative has the disease so it is still a very small percentage which is what I always use to convince myself that the chances of my girls developping this disease is small.

I read one of your other comments about prevention. I do the same. I heard another doctor speak about a study that came out last year about Vitamin D. He extrapolated that giving your kids a multi vitamin everyday would boost their Vit D intake and could potentially reduce the chances of them developping the disease by 50% (which if my math is right, would put your kid back in the same range as the general population). I try to give my kids their Flinstones everyday and also make sure they are drinking Vit D fortified milk and getting sun (with sunscreen of course). I mentioned the one doctor said to another doctor and while he said it was an extrapolation of the data that was not proven, giving them the vitamin doesn't hurt.

I also heard a dietician talk about the benefits of flaxseed and hummus (not formally proven) in your meals. So I am putting flaxseed in my pancakes that I make them and I try to have hummus and vegys for them to eat as a snack.

There is definitely a lot out there to help put your mind at ease, but you are a mom like me and your mind is never at ease.

I wrote a song where I imply that I try to raise money to help find the cure for this disease because of my girls. As Mandy said, hopefully they will find a cure before we even have to worry about our daughters developping MS. One of these days, I am going to post the words to the song. They are copywrited but I still need to get someone to sing them. I'll share them with you soon as I think you would appreciate it with all of the poetry you do.

Kristin

theresag79

5/22/08 11:05am

Thanks for your comments, Kristin. I think one of the reasons why I worry is my sister n law has a freind with MS. Her friend's 2 sisters have MS and her mother has MS. They want her daughter to be checked out every so often because so many in her family have been diagnosed. Strange, that so many in that family have been diagnosed. When it comes to research, are they sure it's not genetic? And if it turns out to be genetic can preventive measure be all that helpful? I will of course still continue to follow preventive measures, but these are just some of the things I think about. I am definetly hoping for a MS cure. I don't mean to add to anyones worries, I was just playing devils advocate. Thank you much for your comment.

mkj

6/ 9/08 3:18am

Kristin - no milk for the kids! Milk triggers MS!!!

Especially infant formula. Warn your family, even distant family, who are having babies. No cow milk formula, preferably no goat milk formula, preferably no formula, period. La Leche league will help them for free.

Also, any friends you may have who have an autoimmune condition in the family, warn them too about not using formula for their babies and not pushing milk on their kids. Dairy also causes diabetes type 1 (juvenile, insulin injections from childhood on). If you have MS, then you also carry the gene for Diabetes type 1 and vice versa.

Milk does not help with strong bones either. That is a myth. Harvard did a 5 year study of nurses at their medical center who consumed lots of dairy, and those who consumed very little or no dairy. At the end of the 5 years, the ones who consumed little or no dairy had better bone density than those who consumed lots of dairy.

If you want to make sure they get their D--pills, drops, plain old sunlight (a light sunburn is now considered GOOD for you, just to the stage of getting slightly pink - body makes 20,000 IUs of D every time this happens, and sunscreen is actually shown to be estrogenic - causing early puberty- and even cancerous) an indoor sun lamp, fish oil, and fish are all great sources. In Denmark or was it one of the other northern European countries, kids get indoor sunlamp treatment in gym class in winter - I saw it in a national geographic. They strip down to their undies and stand in front of a long sun lamp. Why are our kids not getting treatments like this especially in low sun places like alaska in winter and seattle almost all the time?

In norway, the people who live inland and keep cows and drink milk get MS, and the people who live on the coast and eat fish do not.

Anyway, do not think that your kids have to drink milk to get their D and calcium. It is a complete myth and VERY DANGEROUS to someone with MS or diabetes type 1 genes. I find that thinned-down coconut milk is delicious with cereal, if that is something your kids still want to do (most kids like vanilla soy or rice milk too, they are sweet).

My daughter and MS

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