child with "unspecified disorder of autonomic nervous system"
 

My 10 year old son has had symptoms of dysautonomia for the past six months. Right now, his neurologist's diagnosis is "unspecified disorder of the autonomic nervous system". While his doctor suspects dysautonomia and Hischsprung's disease, he still doesn't have any cold, hard proof. So far, all of the tests have come back normal, with the exception of an MRI that showed megacolon. He has had four MRIs (brain, cervical, thoracic, lumbar) and his neurologist suspects Hirshsprung's disease so he is about to go for some tests to determine whether or not he has Hirschsprung's, his GI feels it's unlikely.

He has also had two evoked potentials (VER was abnormal, but OCT performed by nuero opthamologist was normal) two EEGs (normal) ANSAR test (normal), and four rounds of bloodwork (normal). He is going for a tilt table test this friday and an abdominal CT scan the following week. We tried to bring him for the abdominal CT scan yesterday, but he couldn't tolerate the barium and vomited, so he will have to be admitted to the hospital so they can administer the barium using a G-tube. He has been to the ER three times in the past month, but they release him every time because once the symptoms subside, he seems fine. They tell me the the ER isn't the right place to treat the symptoms and because he appears to be healthy and normal once the symptoms subside, so they see no reason to admit him.

His symptoms are weakness in legs, pain/tenderness in upper back and ankles, burning sensation in body that spreads to the head, causing a severe headache with visual disturbance (seeing flashing lights/grey spots in his field of vision that lasts 15-20 minutes), fatigue, severe constipation (being treated by GI with Miralax). The burning/migraine symptoms come and go, the burning sensation/migraines tend to happen in the early evening and last anywhere from 1-4 hours, then slowly subside. After these episodes, he is exhausted. Some mornings he is so weak that I have to help him out of the bed.

His quality of life has been disrupted by this problem, he hasn't been to school since March, he is being tutored at home, he's been wearing pull-ups diapers after a bout of bowel incontinence and because of the Miralax, when he has to have a bowel movement, if he doesn't make it to the bathroom in 10 seconds or less, he has an "accident" so he doesn't feel comfortable wearing regular boxer shorts anymore. He has already asked me if he is going to die, and I assured him that he is not, he has the best doctors and they are going to figure out what's going on with him and treat him until he feels better again.

His neurologist is sending him for a tilt-table test which is scheduled for this friday and some more bloodwork for porphyria (neuro says the porphyria is a longshot, but he's running out of ideas). Needless to say, I am at my wit's end and worrying myself into a frenzy because of this. Not knowing what the problem is is scarier than a firm diagnosis, even if it's something awful, I would prefer to know what it is.

I am wondering if anyone else has been down this road? In other words, has anyone else experienced similar symptoms and had all tests come back normal, normal, normal? SOMETHING is definitely wrong with my child, although we're not any closer to knowing what that something is, any advice/suggestions would be appreciated.

Welcome to NeuroTalk:

Sometimes the answer is something that doctors really don't understand, yet today.

http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

This new video shows real people who have serious issues, all stemming from low B12 levels. One is child. One is a doctor who almost died.

If your son had B12 testing and it was "normal"... be advised that old lab ranges still report 200pg/ml as "normal" when it is really severely low. 400pg/ml is now the real acceptable level to be low normal. So each patient needs to double check this on their own.

If your son has not had methylation testing to see if he has the DNA methylation error called MTHFR, then he has not been completely evaluated. 10-30% of US population have this error, which blocks proper use of B12 and folic acid. (they cannot be activated in the body called methylated).

This is just a basic starting point. Degeneration of nerves can occur with low B12 levels. So you need to look at that more closely. 10 is pretty young for autonomic neuropathy. We have some patients here on our PN forum. So please do visit.
http://neurotalk.psychcentral.com/forum20.html

10 year old with difficult diagnosis
 

Thanks for the welcome and the reply MrsD, I will definitely share this info with his neurologist and GI. His B12 test was "normal" but i was not aware of the new "normal" and I am not sure if his neuro is aware of it (I have to admit the word "normal" is starting to drive me up a wall because I'm absolutely sure that there is something ABNORMAL going on with my child!) I will also mention the methylation testing and see what he thinks about that. I'm a little leary of making suggestions to the doctor because I feel intimidated, but I'm getting a little more outspoken in that arena as my son's health continues to go downhill.

Because of the (possible) digestive problems I'm concerned about the possiblility that his body is not properly utilizing/absorbling the vitamins/minerals from the food he eats, and he is a picky eater who refuses to eat nutritious foods, so I'm relying on multivitamins and nutrition drinks to get some nutrition into his system.

Once again, thanks for the speedy reply, I will take all of this into consideration, I just hope his doctors will do the same.

-Sally

You can get the methylation testing at 23andme.com for $99 (no insurance)... They have a pretty good DNA screening now for various genetic errors.

https://www.23andme.com/
This bypasses the doctor completely.

Also to look into since there are significant GI issues is gluten intolerance and celiac.

Here is an excellent website with many medical papers on this subject:
https://sites.google.com/site/jccglutenfree/
The Gluten File is also on Facebook.

Gluten intolerance is a different animal from Celiac. Not always genetic markers, etc. All is explained at the The Gluten File.
But it can lead to malabsorption of nutrients, which then cause
deterioration of various bodily functions.

I asked his neurologist about gluten intolerence (a few other folks have mentioned it to me along the way) and he just sort of shrugged it off... I guess it couldn't hurt to try a gluten-free diet (I wish my child wasn't such a picky eater, it would make it so much easier!) I have a sneaking suspicion that the digestive issues, whatever they may be, are playing a major role in the neurological symptoms, its just a matter of figuring out what they are and how to treat them, thanks again for your advice, I'm making a note of all of it to bring along with me when we go to the next appointment.

Hi sallymanda,

Hirschsprung's disease is a congenital illness. The average age of diagnosis is 4 years and younger. For reason which are unknown there are no nerves in the affected section of intestines. This disease does not cause Neurological problems.

Information about Hirschsprung's Disease:
http://www.lpch.org/DiseaseHealthInf.../hirschpr.html

Best wishes to you and your son.

Thanks for the info...I mentioned this to his neuro after doing some research online and because my son's GI made me aware of it. Neuro insisted that it's not outside the realm of possibility that he could have Hirschsprung's and that his wife is a pediatrician, etc etc. I have a strong feeling he is mistaken. I am going to contact a pediatric neurologist tomorrow and schedule an appointment asap, it couldn't hurt to get a second opinion and I don't want to wait for my son's health to get any worse than it already is.

He had another episode of muscle weakness last night, unable to sit up or move his arms/legs, along with the sensation of heat in his body/visual disturbance, etc. I am beginning to wonder if these "attacks" aren't transient ischemic attacks? I know I'm grasping at straws here, all of the research I've been doing online is driving me up the wall, there are so many possibilities and as I watch his health continue to take a turn for the worst, I can't just stand by and watch him continue to go downhill without reaching out for another opinion. I also need some support/advice from others who have already been through similar situations, which is why I started posting here.

Thanks again.

A pediatric Neurologist is probably a good idea.

Am I to understand you do not believe your son has Hirschsprung's disease?

I had surgery for Hirschsprung's disease when I was 2 years old, diagnosed at 18 months. This was about 50 years ago.

Hi there,
I'm sorry your son is having such an awful time. I don't want to muddy the water but I just read your original message and some of those symptoms can accompany certain types of migraine in some people. The constipation maybe is another issue altogether. I'm glad you are getting another opinion. Please let us know how you get on and how your son is doing.

Although he has some symptoms of hirschsprung's (severe consitipation that is only relieved with a daily dose of Miralax and megacolon revealed on MRI) his gastroenterologist doesn't think he has it because he is 10 years old and is having regular bowel movements again. His neuro insists that its still a possibility and doesn't want to rule it out until he is absolutely sure.

I will be scheduling an appointment with a pediatric neurologist tomorrow. I feel a little guilty about it, since his regular neuro has tried his best, but because he specializes in MS and Parkinson's and is not a pediatric neuro, I still feel as if he is missing something and perhaps a pediatric neurologist will be able to figure it out.

I'm also afraid that the episodes of muscle weakness that are affecting his arms and legs will eventually affect his ability to breathe during one of these episodes. They happen out of nowhere, they're unpredictable and for the life of me, I can't figure out what is setting them off. They also seem to happen between the hours of 7-11pm, when we're lying in bed and settling down for the night. I'm wondering if lying flat could have something to do with these attacks, which is probably why the neuro has scheduled him for a tilt table test, but I know that the child won't be able to stand for the 45 minutes necessary to complete the test and since he is not having fainting episodes and his ANSAR test was normal, I really don't understand why he ordered the test in the first place.

He is fine 90% of the time, you would never know that the child is suffering with any type of illness, but when the episodes come on, he is bedridden for anywhere between several hours to a day or two. These episodes of weakness/burning in his body and head/visual disturbances started on May 1st and have happened at least 7 times since then. When I brought him to the neurologist back in March, he was only having back pain and mild weakness in his legs, thats when the neuro gave him a diagnosis of "unspecified disorder of autonomic nervous system" so whatever it is, it seems to be progressing rapidly and I am afraid that he will die during one of these attacks.

So far, his neurologist doesn't think it's necessary to have him admitted to a hospital. I understand why he feels that way, because he is only seeing him in between episodes, when he appears to be healthy and happy, but I totally disagree, because if he were to have some of these tests and his vitals were being monitored while in the midst of an attack in a hospital, I'm pretty sure the test results would show SOMETHING.

I'm trying to reassure my son (and myself) that he will be ok and that the doctors will figure out what is going on with him and start treating him, but I'm beginning to think it's going to have to get worse before it gets better.
That's what is scaring the hell out of me. I don't want to lose my son and I don't want his diagnosis to be made during an autopsy.

I am petrified. I hope and pray that a pediatric neurologist will be able to get to the bottom of this. I don't know how much more of this I can take with no answers one way or the other. I am exhausted.

hi there, I am not sure if my experience can shed any light on your sons' suffering but it certainly is ringing some bells with me. I am a 50 year old diagnosed with Behcet's Syndrome but unbelievably waited all of my life for a diagnosis with some pretty hideous symptoms going on in childhood too.

The problem with Behcet's is there is no blood test for it and a lot of doctors either don't seem to know about it or don't consider it because they mistakenly think you have to be of a certain ethnic background to get it which is wrong.

Anyway, it doesn't particularly sound like Behcet's because you don't mention ulcers either in the mouth or the genital area which I feel sure you would have. However, Behcet's is only one of many different types of vasculitis which have overlapping symptoms. I've just been today to see a neuro to rule out neuro Behcet's which is where the disease specifically causes damage to the brain in some way. Thankfully I don't have that but there are a lot of neuro symptoms with Behcet's and other forms of vasculitis and it can affect the brain and central nervous system producing the kind of symptoms your child has.

I am not certain that lying down is exacerbating his problem - he may have anxiety about being left on his own at night with these sorts of symptoms. I certainly developed night terrors as a child because of the complex migraine I suffer from which is sparked by my illness. The effects are horrendous and many times I thought I would die.

I urge you to try to get an opinion from a specialist specifically in vasculitis though also possibly an immunologist could help you. For a variety of reasons a neuro probably wouldn't be able to diagnose your sons disorder if it is related to a form of vasculitis. And even if you suggest what I've told you he;ll probably not respond well to it though you never know. I think a diagnosis when young is so important because at least when you're a child and you get all these types of symptoms, the medics are much more sympathetic than when you get older and they try to tell you it's all in your head. Please get in touch if you have any questions about what I am saying. I'm happy to elaborate on any of what I've told you about my own illness.

Hi Magirose - thanks for responding...my son doesn't have the ulcers in the mouth or genital area that you describe. As for the migraines, anxiety at night well...he shares a room with me and I have been sleeping right next to him every night since this ordeal began, I try to reassure him that he will be ok, just try to get through it, etc, but I'm beginning to wonder about that myself.

Yesterday afternoon he had a severe bout of muscle cramps in his back, arms and legs. The child was writhing around in the bed, crying out in pain and aside from giving him some children's tylenol (his neuro won't prescribe anything for pain until he has a better idea about whats going on with him) there was not much else I could do for him. He had plenty of water yesterday, so I know the muscle cramps weren't from dehydration.

Hi neuro is sending him for a tilt table test this friday and I think its a waste of time because the child isn't having fainting spells or dizziness and from what I have read online about tilt table tests, its designed to diagnose problems like that. He is also sending him for an abdominal CT scan, which will involve using a nasogastric tube to insert the barium into his stomach because he was unable to tolerate drinking the horrible stuff. Neuro still insists he could have Hirschsprung's disease, but his gastroenterologist disagrees and so do I , I am hesitant to bring him for this test because I know he will be traumatized by the NG tube, but what else can I do? I'm sure his doctor has a good reason for insisting on this test, aside from Hirschsprung's, perhaps he is checking for something else or perhaps he is just running out of ideas, I just don't know what to think anymore. One thing I know for sure is that its definitely NOT all in his head and if his doctor even tries to suggest that it is, that will be the last time I will be taking him there.

Anyway, sorry if my response is kind off all over the place, we had a long, difficult night with my son until 4am this morning and I'm feeling a little scatterbrained. Thanks again for your response.

I'd like to suggest for muscle spasms and cramps, a topical magnesium product may help. The magnesium is a relaxant and opposes contraction, and when muscles cannot relax it can be very helpful.

This new version which many of us on NT now use is easily available at WalMart for $5.98:
http://www.mortonsalt.com/for-your-h...-epsom-lotion/

For the back area only a quarter's diameter rubbed in gently may show you some relief. This is really effective and I use it myself!
(don't slather it on like cosmetic moisturizers, since it contains magnesium some of which will be absorbed) Many Americans are low in magnesium because of poor diet. Topicals like this are very handy, less expensive than oral supplements, and this one is especially affordable.

Thanks for the suggestion MrsD, I will pick it up today and give it a try if he has another episode like the one he had last night. This total body muscle cramping is a new symptom, so I put a call in to his neuro for advice, or to see if there is something he can recommend or prescribe for my son. Sheesh, this situation is taking a toll on the both of us, there was absolutely nothing I could do to soothe his pain last night, he was begging and pleading with me to make it stop and I was debating about whether or not to call 911 and bring him to the ER, but after 3 ER visits over the past 5 weeks, I already know the drill ("ER isn't the place to diagnose neurological illesses, he's not sick enough to admit him, etc etc")

Thanks again for the advice. Can't hurt to try it.

You're really going through it aren't you. His migraine experience sounds so like mine and I've had it since childhood. When I was young I had a lot of these kind of experiences but I am not sure if I had a different sort of autoimmune malfunction going on then and developed the Behcet's later in life (the classic Behcet's symptoms only came in my 20s). I do feel your son could have symptoms of autoimmune disorder. Problem is there are so many with overlapping symptoms. Just been reading online up to 100. I just personally feel an immunologist may give you more answers. I have seen rheumatologist and neurologists who had little to zero idea what was going on with me. I finally got diagnosed by an immunologist and have ended up now in a renal/vasculitis clinic now for my care.

And I agree with you....don't let anyone say its all in his head. It definitely is not. X

I would start nightly magnesium rubs... anyway. If he is low, this will compromise the heart eventually. Very low mag levels lead to arrhythmias. (not intending to scare you but it does happen.)

The magnesium topicals began with autistic children, and the Kirkman product was developed over a decade ago for them. The sulfate is also useful for them.

But here on our neuropathy forum we all benefit from fixing low magnesium. It can be so easy to not consume the proper foods, and get low. If this is an autonomic neuropathy, the magnesium would be one of the first things to try.

Here is a wonderful website which gives the content of foods.. You can plug in the things in his diet and see how much of various nutrients he is getting (including the magnesium).

http://nutritiondata.self.com/
pay attention to the serving size too. I use this site all the time, and it is very helpful because it has many common commercial foods/cereals as well.

One thought keeps coming to me... that this may be a dystonia.
This disorder is not well understood, but involves muscles that contract from aberrant signals originating in the brain (or a failure of inhibitory nerve functions/signals). I hope this is not true in your case.

Any questions, you can always Private Message me here. I am also every day on our Peripheral Neuropathy forum. :hug:

As a mother I am going to suggest you follow your gut instinct. If you feel this neuro is doing more harm than good then don't allow him to do this testing and don't put your son through testing that you feel will be more harmful.

I would think a test such as an abdominal CT scan involving a nasogastric tube is something left for his Gastroenterologist not the Neurologist.

Please seek another opinion. Do you have a Children's Hospital fairly close? If so that might be a better choice for your son ---

Thank you for all of the advice, I'm grateful for the support I'm getting from the folks in this forum.

I spoke with my son's GI and she suggested a menometry to diagnose the Hirschsprung's. I still disagree with his neuro on this, so I don't think I will put him through the abdominal CT scan with the NG tube, his GI informed me that an upper GI ct scan is not even the proper way to diagnose Hirschsprung's.

Some good news: I believe the migraines/muscle cramps/weakness in limbs that my son has been suffering from were caused by the adult does of Miralax that the GI had him on for the past few weeks. I haven't given him the Miralax in 2 days and guess what? No headaches/muscle spasms last night or today and his legs are less weak and wobbly. I mentioned this to his GI today and she agreed with me and advised me to switch him to Metamucil Clear and Natural. I know that Miralax works wonders for some people, but I have a strong feeling that my son's system is hypersensitive to the ingredients in the Miralax or that he is just allergic to it, so I will not be giving him any type of laxative in the future unless its all natural. Thank God for Google! Sometimes you have to be your own doctor, even when the real doctors disagree.

Anyway, just wanted to say thanks and share this info with all of you. I will keep you informed, hopefully he will continue to improve over the next few days, I'm keeping my fingers crossed!

Thanks again,
Sally

That's interesting!

I just found a site that has a list of reported possible side effects to the FDA from consumer/non-health professionals. Malaise, Asthenia, Tremor being just a few.

Hi Lara, just wondering if you can post a link to that list, I am interested in seeing it, even though my son is off the Miralax. By the way, its been 3 days with no migraines or muscle spasms and although he's still having some weakness in his legs and feeling wishy-washy in general, I think it's safe to say that Miralax was the culprit. We'll see what the next few days bring.

Here's the link that I found.
Not sure how reputable the info. is from there, but here it is...

http://www.druglib.com/reported-side...riousness_any/

So I brought my son for the tilt table test today. Unfortunately the test couldn't be completed, his legs were too weak, his knees started buckling and within 5 minutes, he started sliding down the table, the straps under his arms were the only things holding him up. The technician tried putting some pillows under his legs to support him, but it just didn't help. He lasted about 15 minutes and she said she didn't see any major fluctuations in his BP or heart rate and stopped the test. I really wasn't expecting this test to reveal anything anyway, he hasn't had any fainting spells or dizziness, so I don't know why the doctor ordered it in the first place.

So we're still at square one. I contacted his neurologist's office to request an authorization for a wheelchair and sunglasses (his eyes are still very sensitive to sunlight, even on a cloudy day) because he weighs 70 lbs and I don't have the strength to carry him into all of the appointments he's going to have to go to over the next few weeks. I hate to have to put him in a wheelchair, even if its just for appointments, I feel like I'm giving into this problem and I worry about the psychological effect it will have on him, but I don't know what else to do, I have to get him to his doctor's appointments and I'm relying on cabs to get us there because I'm without a vehicle right now and there is no one else around to help me out.

So that's where we're at right now. Just wanted to let all of you know and thanks again for all of the advice/support, I really appreciate it.

Sally

You mentioned in your first post that all the tests were normal except for the VER. You say your son has been ill for about 6 months. Has he become progressively worse over time or up and down with same symptoms. I wonder if you remember anything unusual around the time he became ill. e.g. did he get the flu, or a viral illness or have any immunizations or such? I guess they've ruled out he may have something like Guillain Barre [edited to add - although I just went and re-read one of your other posts and you say he's OK 90% of the time which would rule out GBS and lots of other things].

This must all be so worrying for you. I'd be beside myself with worry. The fact he's now needing to be carried is just awful. Let us know when the porphyria tests come back. It's good they're testing for that. I hope you find some answers soon and that your son recovers very fast from whatever is going on at the moment.

Hey, I'm so sorry that you are both going through all of this. You shouldn't feel guilty about seeking another opinion, this is your child. Get 50 opinions if that is what it takes and know that you have a whole team of support just a key board away. I know you said these usually happen at time have you kept a daily diary of food, meds, environmental stuff etc? Sometimes it makes it easier to identify what a trigger is if its in black and white.

You guys will get through this.

Phil 4:13 I can do all things through Christ who strengthens me. :circlelove:

Hi lara - I don't recall anything unusual back when he first started becoming symptomatic, no virus, immunizations, etc. Because all of his tests keep coming back normal while the weakness in his legs continues to get worse with each passing week, I'm beginning to wonder if ALS is a possibility. From what I've read online, ALS is usually diagnosed with an EMG when every other possible disease/illness is ruled out, and since his neuro hasn't scheduled an EMG for him, I am going to mention it when I hear back from him on monday (I had to put a call into the office friday to let them know that he couldn't make it through the tilt table test, couldn't stand for more than a few minutes, etc)

He had a horrible night last night with muscle spasms in his legs from trying so hard to stand on the table for the test, when I was trying to help him get undressed in his bed he was screaming into his pillow, it was heartbreaking. He's asking questions like, "Why is this happening to me?!" and I have no answers, all I can try to do is comfort him.

I hope we'll have some answers soon. Thanks to everyone for your advice/support.

hi - this is so distressing for you both. Has anyone looked at the possibility of systemic vasculitis.....here are some of the symptoms. No one will usually have all of them. The burning sensation and headaches you mention are classic symptoms of vasculitis as are the weakness and 'nervous system' disturbances you describe.

quoting from a website http://www.ninds.nih.gov/disorders/v...vasculitis.htm

Hi Magirose
When you quote from a website that allows copy/paste (as that one does) please be sure to add the quote tags and link

If the website has copyright, then just a snip and the link

thanks

ok, thank you for that. Will remember to do that next time. x

I ran across this genetic disorder while online today.

I found a link for a poster on our PN forum.

You might want to bring this up with the doctors evaluating your
son:

http://ulf.org/adrenomyeloneuropathy-amn

This genetic disorder presents in young males, and has many
different characteristics. (see the symptom list). Alot depends on
whether the brain is affected or only the peripheral areas and spinal cord. There is a blood test to reveal it however. Since it is rare, many doctors may overlook it.

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 :hug:

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 :mad:

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 :hug:

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 :Heart:

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