Hi everyone,

Sorry for my delayed response. My son was hospitalized on May 25th because he was getting to the point where his legs were so weak, he couldn't walk at all. So I brought him to the ER and they admitted him.

He had so many different tests while there, I can't remember them all, most of them came back normal but there were a few abnormal results. His first Lyme test came back positive, the second (western blot) was indeterminate so they sent it to an infectious disease specialist who determined that the test was negative.

He also had an abnormal VEP (visual evoked potential test) for the second time in three months, his left eye had a delayed response. While looking at the checkboard screen through one eye he said that the screen appeared brighter through the right eye than it did through the left. His eyes are still extremely sensitive to bright light and when he goes outside, he is blinded for awhile until his eyes adjust. I have to arrange to get him a pair of prescription sunglasses asap, he wears glasses all the time, in fact his prescription has changed three times over the past 18 months. He wears bifocals now.

They also did a spinal tap, which revealed a single oligoclonal band. The doctors explained that two or more of these bands can be a sign of MS and some other neurological disorders, but because he only had one they want the test repeated in a few months. His MRIs were clean, no lesions, nothing abnormal with the exception of a small cyst on one of his kidneys which they assured me was nothing to worry about. The MRIs will also be repeated in a few months.

He was released this past tuesday, with a walker and a wheelchair, so I can get him to his doctor appointments. He is mobile with the walker, but his legs are still like rubber, so I have to hold him under the arms while he uses the walker. His arms are still very strong, he can push himself off of the floor with his hands on the bars of the walker, although I noticed that his abdominal muscles seem weaker, when he tries to sit up in bed he struggles a bit while pushing with his arms, his abdominal muscles don't seem to be nearly as strong as they used to be. A few months ago this kid used to be able to do 15-20 situps with his arms folded across his chest, now his abs are weak along with his legs.

They're not ready to declare that this is multiple sclerosis, despite some tell-tale signs, but they did have a neurologist who specializes in MS come into the hospital room to check him out and talk with me the day before he was released and she would like to see him at her practice, where they offer comprehensive care, pain management, pediatric neurologists, psychologists, etc. She explained that MS can sometimes be tricky to diagnose and that perhaps a firm diagnosis will reveal itself over the next few months or maybe this was just an isolated incident and once he bounces back from it, that will be the end of it and he will be just fine.

They considered steroid treatment and debated about it for a couple of days while he was hospitalized, but they decided not to go through with it, since he seemed to be getting well on his own.

He will be seeing his regular neurologist tomorrow morning at 9am if I can get him out of bed early enough and down the two flights of stairs in my house and out to the car. I still can't believe this is happening and this feeling of being in limbo as far as a diagnosis is concerned is really disturbing, but it seems to be a wait-and-see situation and there's not much more I can do other than getting him to all of his doctors appointments and tests.

Just wanted to give all of you an update and touch base, thanks for all of the suggestions/support, it means a great deal to me during this difficult time.

Sally

Thanks for the update. Poor little boy, am so sad for him and for you. I wish him a good recovery. x

Hello friends,

Well we just got back from the neurologist's office a little while ago. The doctor said that despite the clean MRI, it's the combination of the abnormal VEP, one oligoclonal band found in the spinal fluid and my son's sudden inability to walk that makes him willing to bet that this is some form of multiple sclerosis.

He is starting my son on a five-day IV steroid treatment next week, hopefully this will reduce some of the symptoms and get him walking again, although it's obviously not a cure, it's possible this will help him regain some strength and mobility for some time. He presecribed flexeril for the muscle spasms and said it should help him sleep at night (some nights he's up until 2 or 3 in the morning crying from the back spasms while I sit there watching helplessly) so we'll see how that goes.

He also recommended physical therapy at home for the time being. The PT was here yesterday to evaluate my son and was hesitant to push him to walk or do any exercizes with him, he didn't want to risk making him any worse than he already is and wanted me to get the neurologist's opinion first, so he'll start the PT with him on Monday.

There's not much more I can say at this point in time, other than the fact that at least we're getting closer to a firm diagnosis. I have to admit that after spending a week in the hospital with my son and seeing some of the kids there, weak with cancer and feeding tubes up their little noses, I prefer a diagnosis of MS, while I know it can be debilitating and life-altering, at least it's not fatal and I'm sure some of those parents of children with cancer would trade places with me in a heartbeat, so that kind of helped put things into perspective for me. I'm getting used to the idea that my son probably has multiple sclerosis and I will deal with it instead of falling apart, which is what was happening to me before I brought him to the hospital and his diagnosis was still up in the air.

I'll let all of you know how the steroid treatment goes, this is all new to me, so I have no basis for comparison. I'm going to do some research and I hope that it does what it's supposed to do and reduces the symptoms of this flare-up of leg weakness and back spasms.

Sally

Hi Sally,

One O-Band in the spinal fluid is considered normal. Abnormal would be 2 or more.

I would suggest taking your son to a Pediatric MS Center, there are several around the US.

Please feel free to post any questions about MS on the MS forum. I am hoping and praying your son does not have MS

I don't remember if your son had a MRI of the spine. The most common area would be the Cervical Spine. If he hasn't it would be a good idea. In MS lesions (abnormality) on the spinal cord can cause problems from that point down and are well known for causing mobility problems.

A little back ground on myself: I had symptoms of MS as a child but was never taken to a Doctor for the symptoms I complained about. I was diagnosed at the age of 24 and my MRI has clear at that time. My Lumbar Puncture (LP -- Spinal Tap) came back with 4 o-bands.

Sally,

I wanted to give you a link to information about Acute Disseminated Encephalomyelitis (ADEM) which is similar to MS. Be very careful, there are many conditions that can be very similar to MS.

http://www.childrenshospital.org/az/...ageS765P1.html

Hi and thanks again for the information. My son's neuro explained that one O band would be considered normal in the absense of the abnormal VER and the weakness in his legs. There were a few other abnormalities in the bloodwork that he rattled off while we were at the appointment and after going over all of this with me, his exact words were "I'd be willing to bet this is an MS variant".

Of course, I hope he's mistaken, and I will be taking my son to a pediatric MS center on July 15th (that was the earliest appointment they had available) Fortunately, my son seems to be bouncing back from this episode, his gait is still a little unsteady in the morning, but I have a feeling that he will be back to normal soon. Now I'm debating about whether or not to have him go through with the five days of steroid treatment, if the child is getting better on his own, why subject him to it?

Snoopy, you said you had symptoms of MS as a child and you weren't taken to a doctor. What symptoms were you having at that time? I'm assuming they subsided after awhile, then caught up with you again in your early 20's? I will check out the MS boards, thanks again for the link about ADEM.

Hi Sally,

I have never heard this but since I am not a Dr. I can't argue the point

The link I provided on ADEM is considered a MS variant. Be cautious --- MS variants are known for being worse than MS

That is great news!

As I said in a previous post --- go with your mother's instinct If he has MS it is not uncommon for symptoms or what is known as an exacerbation (relapse, attack, flare-up) to resolve without steroids...for some.

I was simply termed a hypochondriac by a parent who felt a doctor was not needed. So, I grew up believing what I experienced was normal and everyone felt like I did.

When I had a severe exacerbation at 24 years old and was diagnosed with MS everything I experienced as a child made sense.

As a kid:

I would walk into other people (I could not walk a straight line), falling was normal and sometimes daily. My balance was horrible and still is to this day.

Trouble riding a bike --- I had muscle tone but my legs were weak. I could not pick my feet up to clear the ground. I would usually slide or shuffle my feet.

Urinary sensations ---- it felt like I was leaking urine but I was dry.

Heat intolerance --- I was unable to be outside very long in the heat which made it difficult to do things with friends.

My legs would ache --- this started at about 15 years old, well past what some call "growing pains."

I meet my husband at the age of 18. We went shopping and when I stepped off the curb my leg gave out and I feel.

Hello again!

So my son's neuro decided to start him on a five-day course of Solu Medrol last week. Its an IV infusion that I was supposed to administer to him at home. The nurse came to the house this past Monday to set the IV and stayed with him while he received the first dose. About an hour or so after the nurse left, my son started complaining of back pain, a sharp pain between the shoulder blades, weakness in his legs, then fell asleep for four hours. He was pale and he looked ill. I was aprehensive about starting this treatment in the first place since he doesn't have a definite diagnosis and he was improving rapidly on his own, walking without the walker, climbing up and down stairs, etc.

The following day I made a decision to stop the Solu Medrol and removed the IV from his arm. My daughter works in the neurodiagnostics section of the neurologist's office and when she told him what I did, he had a fit and told her that I was making a big mistake, "What if he has another episode of leg weakness in 4 or 5 weeks, does your mother want him to end up in a wheelchair or in the hospital again?" and so forth.

I'm happy to report that my son has bounced back from this episode of "whatever-it-is" (still no definite diagnosis) and is walking without the walker, going up and down stairs and seems to be back on track again. There's some tightness and pain in his hamstrings, but I feel this is a result of being in bed for two weeks and can be worked out with some stretching exercizes and his PT agreed with me.

I don't understand why his neuro is insisting on a five day course of Solu Medrol when the child is getting better on his own, and according to one of the nurses I spoke to in his office, this medication doesn't prevent a flare-up from happening, it's used to treat a flare-up that's already happening.

Soooo...I'm expecting a call from his neurologist later on this evening and I don't think it's going to be a pleasant phonecall. I'm sure that he's going to insist on this treatment and my mother's intuition is telling me that my son doesn't need it. I feel really uncomfortable about going against his orders, but I know I have a right to refuse treatment if I feel it's unnecessary and that's what I'm going to do.

As I said it my previous post, I will be taking my son to a pediatric neurologist next month for a second opinion.

Anyway, I guess I just wanted to get this off my chest. I'm wondering if anyone else thinks that a five-day course of Solu Medrol is a bit excessive for a 10 year old child with an undiagnosed neurological condition who seems to be getting well on his own?

Thanks in advance-
Sally

Hi Sally,

I am glad you posted an update

For what it's worth, I agree with your decision. I would also question why high dose IVSM needs to be used on a child who is improving on his own.

This sounds like a scare tactic

If your son is dealing with MS steroids do not change the course of the disease, they might shorten a relapse. Steroids will not prevent another relapse from happening.

I am sorry, Sally It sounds like he was already experiencing some of the side effects that can come with using steroids

Don't get me wrong, steroids can be necessary and needed depending on the circumstances but your son was improving on his own.

Hopefully a Pediatric Neurologist will be much better for your son. I wish you and your son all the best. Please keep us updated...we care

Another update...

After refusing a five day course of Solu Medrol for my son (his neuro thinks he may have an MS variant, although there's not enough medical evidence to support a definite diagnosis) I'm having second thoughts about my decision.

I decided to bring my son out to the supermarket with me for a "test run" so to speak. For the past few months he's been homebound, only going out to the car, into the doctor's office and back again.

As soon as we stepped outside today, he put his arms across his face and said the light was blinding his eyes. I'm already aware of the light sensitivity and have a prescription for sunglasses from his neurologist, we'll get them asap.

After about 20 minutes of walking through the store, he started to complain about feeling over-heated and weak, his legs were wobbly again and I had to bring him back out to the car, crank up the A/C and bring him home.

Now I'm beginning to think that perhaps his neuro is right and that I should follow through with the Sulo Medrol. I'm really dreading the side effects and my son is already traumatized by all of the doctors, tests, hospitalizations, bloodwork and IVs he's been through over the past few months, but after what I witnessed today, I'm thinking maybe his doctor is right and I should give in and follow his orders.

I'm not expecting any of you to tell me what to do, I know that ultimately the choice is mine, but I'm feeling disturbed by what I witnessed today with my son and now I'm second-guessing my decision to refuse this treatment. Something is definitely brewing in the child's body, I know he's not faking any of these symptoms, but I'm dreading the side effects of this medication and the psychological effect it will have on him while he's going through it. I also don't like the idea of having to administer the IV infusion myself at home, but the cutoff age for infusions at his neuro's office is 14, so I will have no other choice in the matter.

I will speak with his doctor tomorrow, explain why I decided against this treatment and tell him what went on during our shopping trip today and see if we can't come to some sort of compromise, maybe a three-day course would be reasonable?

Anyway, thats the story, I'll let all of you know how it goes after I speak to his neuro. Thanks for listening.

-Sally