Should we start teatments with my son?

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Baseball Mom3
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Date Joined Jul 2009
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   Posted 7/8/2009 12:55 PM (GMT -7)   
My 10 year old son was recently diagnosed with MS. It all started in May 2006 (at age 7) when the doctor told us he had an inoperable brain tumor. Three weeks later we found out it was not a brain tumor - he was being diagnosed with ADEM. He had many relapses in 2006-2007 with steroids and/or IVIG treatments with each hospital stay. He then went 1 1/2 years without a relapse breaking that streak this past February. The doctors have now diagnosed him with MS. He doctors with a pediatric neurologist in our home state and a pediatric MS specialist out of state. He has always recovered 100% from his relapses which is vertigo and vomitting - the first time his eyes crossed also. The pediatric MS specialist is wanting to start him on Rebif or Betaseron. I don't know what to do being that he shows no signs at the present of having MS but I lay awake at night waiting for his next relapse to happen. Comments please.

Gretchen1
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   Posted 7/8/2009 1:34 PM (GMT -7)   
Are you the mom of the boy mentioned in the other thread?  I am very sorry to hear of this diagnosis with your son.  I am VERY glad to hear that he has 100% recovery between relapses.  That is really very great and hopeful news.  Most western doctors do advise early treatment.  The general rule is to get on something and stay on it.  I don't have any experience with children and MS and I am not a doctor of course.
 
I would do as much research as you can on the current treatments for MS.  They are Avoenex and Rebif; those are really just slightly different dosages and mixes of interferon beta1a).  Betaseron is also an interferon (beta1b).  The interferons are hard to deal with.  They have been out the longest and they do work.  But the side effects are harsh.  Remember this is all just my opinion, but I would have a tough time putting one of my boys on an interferon.  Then there is Copaxone.  It is NOT an interferon.  The side effects are local only.  The biggest draw back of copaxone is that the shots are daily and the shots hurt (like a bee sting).  I got used to the shots fast but this might be more traumatic for a child.  It depends on his level of acceptance of this disease and how willing he is to fight it.  I am not sure why your doctor is not considering copaxone.  It may have something to do with your son's age?  I am just guessing there.
 
I am assuming you know that all the treatments are shots.  If he is placed on a treatment, he will get used to that fast. 
 
I would like to recommend that you look into getting at least counseling for your son if not for the whole family.  The local MS society can help with that.  If you have a local chapter, ask them what is available.  It is often free or low cost. 
 
I want to wish you the very best of luck.  I hope this helps. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Gretchen1
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   Posted 7/8/2009 1:42 PM (GMT -7)   
 
 
 
I found a couple of links that might help. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


mickzee
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Date Joined Jul 2009
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   Posted 7/8/2009 4:12 PM (GMT -7)   
Read lymekillers my first symptoms.
This is mickzee by the way.

Baseball Mom3
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Total Posts : 3
   Posted 7/9/2009 5:07 AM (GMT -7)   
Yes, I am the mom mentioned in the other write-up. Thank you for the links. The doctors are wanting a decision from us soon as to what treatment we want to go with. I am not convinced that we should start him on a treatment yet.

Gretchen1
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   Posted 7/9/2009 8:38 AM (GMT -7)   
Hey Baseball Mom,
 
You are the mom here!  You know your son and you know what he can handle.  Weigh all your options before you are pressured to do a treatment.  I would still like you to look into copaxone.  That is the non-interferon and it doesn't make you sick with the flu like symptoms after each shot.  It may not be an option since I don't really know about MS drugs for kids.  I was thinking about when my son at 2 had to have a bunch of blood work.  They put this numbing patch on his arm and then he never felt a thing.  I wonder if that might be an option for managing local injection pain.
 
But, again, no one knows our kids like we do.  I am sure whatever you decide, you can make work.  Keep us posted please.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


ggirl1970
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Date Joined Jul 2009
Total Posts : 1
   Posted 7/9/2009 1:32 PM (GMT -7)   
i found this sight while looking for answers to questions that have been keeping me up at night for the last 6 months. My son was 5 years old when he came home from kindergarden and said his back hurt. He layed down on the couch and went to sleep. He woke up about 4 hours later saying his legs hurt and he sat on the floor and said the room was spinning. I thought he was playing. The next morning he woke up and he was wobbley when he walked. I kept him home and made a doctors appointment. His peditrician was out on maternity leave so we saw someone else in the practice. He examined him and said he was reacting strangely to him touching him. He had him walk and my son was still unsteady. The doctor said he thought he was lying and just making up the symptoms. He did run blood test. They came back the next day and they were normal. My son's walking was getting worse and worse he had a head ache, threw up a couple of times, that night about 4 in the morning he got up to use the bathroom and fell on the floor. I took him to our childrens hospital urgent care. They did a ct scan and it was normal blood work was normal the dr. thought it was a migraine and gave him a shot of medicien for that it didnt help. He was getting worst he couldnt urinate at this point. The urgent care doctor said he could send us home and see what happens but he didnt feel comfortable doing so. Shortly after that things went down hill, his arms and legs were jerking. He called for transport to take him to the childrens hospital main campus. In the ambulance he started a fever and going in and out of it. He lost movement in his legs and couldnt walk couldnt sit up. His legs and arms hurt he developed double vision in both eyes and lost some vision. He also lost all bladder and bowle control. At times he didnt reconize his Dad and I. The spinal tap they did came back positive some thing was definantly going on. They finally got a MRI and his brain stem and his spinal cord was lit up. He had lesions everywere. He was diagnosed with ADEM he recovered rapidly with the steriods and we went home in 10 days. A couple of months ago he had a ear ache and fever. Then his symptoms of the ADEM all started coming back just not as severe. His walking was off, hypersensitive to touch, threw up, lost bladder control, the pain in his legs and arms and the twitching. This all lasted untill the fever started to go away then he was fine again. He just had his six month follow up MRI june 16th. They came back good. His lessions are healed or gone except one area on the upper spine. I asked the Dr. about the possibility of MS he said he didnt think so but he couldnt say for sure. I am concerned be cause of this 2nd episode he didnt think it was a big concern.
Well I cant stop thinking about it. If any one can give me some information or if they have a similar experience like baseballmom3 ( your story reminded me of us) i would appreciate corsponding with you. Thank you!

Gretchen1
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Date Joined Jan 2007
Total Posts : 3550
   Posted 7/9/2009 3:53 PM (GMT -7)   
ggirl1970
 
I am sorry to hear about your son!  You have told a very frightening story!  I hope you get some answers soon.  I have posted a few links.  The first two are about ADEM; you may already be familiar with these sites.  The last one is about MS in children and the diagnostic process etc.  Good luck!  I hope both your sons get and stay healthy. 
 
 
 
 
http://www.childrenshospital.org/az/Site775/mainpageS775P0.html
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
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Date Joined Aug 2008
Total Posts : 271
   Posted 7/10/2009 10:45 PM (GMT -7)   
Hey Baseball Mom & ggirl,

That sounds like a really, really awful experience for all of you. I have had RRMS since 10 but much milder symptoms and no medication (they did not do that back then) but I would read as much as I could before I committed my kid to a medication.

There is a doctor here (a professor of intensive care medicine) who has MS. When he was diagnosed he did a lot of research into all the medications and then decided (against his expectations) not to take any of the meds but to modify his lifestyle. His name is George Jelinek and he wrote a book called Taking control of MS in which he does a write up of each medicine & the pros and cons. I thought this might be useful for you to read him being a doctor and all. He also has a website. I have heard that he is taking copaxone now but I do not know.

I am now SPMS and taking low dose naltrexone (which they have been using in the US for the last 10 years and they claim stops the progression of MS). It is a very small dose (a tablet at night) has no side effects, is cheap and I felt an improvement within 3 weeks. Though I will need to wait a few years before I can say if it has stopped the the progression. Read about it on the internet. The MS society here encourages everyone to do their own research because we are all different and the doctors are too busy to keep up with everything.

Good luck.
Love & Light
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


tkeys
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Date Joined Jun 2009
Total Posts : 31
   Posted 7/11/2009 6:36 AM (GMT -7)   
Hello! I am sorry to hear about your situation. I was also recently diagnosed with ADEM. I can never find anyone else who knows of it! Mine also had vomiting and fever in the initial phase, which is apparently different than MS. The doctors thought I may have MS at first (I am 23). I know ADEM is not "supposed"
 to come back, but there is the small percent that have recurring ADEM. I would check into going to an ADEM specialist for your son. Since his symptoms started like most ADEM, with the fever and vomiting, did he have a recent virus that they know of? Also, in his spinal did he have OC bands? Mine just showed high lymphocytes, but no OC bands, but my neuro said that you can have them with ADEM also, just not as common as with MS. I don't know side-effects of MS drugs, but I would check into recurring ADEM with a specialist as opposed to started treatment for MS just yet since he is so young. If you would like to contact me, feel free. I don't know where you are from, but I may be able to help find a good doctor. I have had to do a lot of research. My husband is in the military so we will move a lot. I here the Cleveland Clinic is the best. God bless and good luck!!

Baseball Mom3
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Date Joined Jul 2009
Total Posts : 3
   Posted 7/13/2009 9:09 AM (GMT -7)   
Thanks for all the advice. My husband and I have been talking about getting a third opinion. This one from the Cleveland Clinic. Both doctors that my son sees now believe it is MS but one is hesitant about starting meds and the other wants to get him started right away. In the meantime I have been doing research on the different medications.

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 7/13/2009 1:23 PM (GMT -7)   

I got this info off an ADEM forum. Thought it may help.

"My daughter is being seen at the Mellen Center in Cleveland. She is only 6 years old so she is seen by the Pediatric Neurologist, Dr. Manikum Moodley. We have been very happy with Cleveland Clinic. Kaylee most likely has multiphasic ADEM (occurs more than once) but there is still the slight chance that she has pediatric MS. Dr. Moodley is a specialist in white matter disorders including ADEM and MS.'

 


popsie
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Date Joined Aug 2008
Total Posts : 271
   Posted 7/13/2009 5:02 PM (GMT -7)   
Hi baseball mom,

Doing your own research is very good. I do think that tkeys has given you some good advice and, to me, ADEM sounds more likely than MS. But it might be something more simple.

My daughter had terrible stomach aches that would last for days. no medication helped. These lasted from 5 years-7 years , doctors did not know what they were, predicted something dire & wanted to do all sorts of nasty exploratory things. I refused to let them. Then I met a lady who said her daughter had the same problems & her pediatritian said they were abdominal migraines. We went to see this doctor who had experience with this sort of thing and after a few months of prophalactics she came good. Now she knows that if she gets a tummy ache it is stress. Those early stomach aches where the stress of starting school. Looking at the family genetics can also help to point you in the right direction (my mother had migraines).

I believe it will come right for you and your little boy I know how hard it is to watch them suffer.
Love & Light
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


Mamacita
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Date Joined Aug 2009
Total Posts : 6
   Posted 8/9/2009 8:37 AM (GMT -7)   

Oh my...it's always so hard to hear about young ones suffering. My husband had MS, and it's hard enough on us trying to make decisions about his care. I'm sorry you're dealing with this.

I don't know whether you should start medications or not. My husband is on copaxone, and we're very pleased with it. I don't know if it's an appropriate medication for kids, but it doesn't have nearly the negative side effects that the other medications do. We felt much safer with it for my husband. It took about 6 months before we saw a change, but then there was marked improvement.

We're also strong believers in the diet connection, and this may also be something you'd be interested in. We originally wrote off the diet stuff as quackery, but we eventually became desperate enough to try it. We figured there wasn't any real harm that could come from it, so why not. We're on the Best Bet Diet (which you can check out at www.direct-ms.org). It limits saturated fat and sugar. And it eliminates gluten, dairy, and legumes. We also eliminate foods that my husband has a personal sensitivity to. It's quite restrictive (and we don't cheat), but we have had a very good experience with the diet. It took us about 6 months to see much of a difference, and it took us about a year to develop the skill of actually being able to track which foods might be bothering my husband. But we're total believers now.

I've recently started a personal blog where I've been posting recipes (a lot of Best Bet Diet recipes are kind of bland, so good recipes can be kind of hard to come by). If you decide you want to try the diet approach, feel free to check it out (http://multiplesclerosisrecipes.blogspot.com/), although there are a lot of MS recipe sites on the internet.

Good luck!
--Mamacita


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/9/2009 6:57 PM (GMT -7)   
Hi Macmacita,

I was really interested to hear your comments on diet and I think your diet blog is a great idea. I tried to do the same here for the MS society but it never got off the ground.

I was on the swank diet for a long time which does have gluten but had never heard of the best bet diet. I read somewhere as to how those with lyme are recommended to avoid legumes & wheat & I threw in nightshades too (I loved tomatoes,capsicum:() because they are all inflammatory. Since doing this I feel really good, am much more active & have no fatigue. I do not know why it is not suggested for MS as MS is also an inflammatory disease. I have learned to manage cooking different meals for me or things the family enjoy & they do not even notice if I substitute flours etc. I am sure you have found the same.

I also eliminate all dairy except organic milk for progurt, and I only eat low fat organic meat. I also swear by fish oil & take tumeric (both anti inflammatory) & recently have started phosphatidlserine which is said to build the myelin sheath.
I will post anything useful. I wish more people would just try the diet. As you know it is not as difficult as many think.

I have heard that copaxone is one of the best.
Good luck
turn
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."

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