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.

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.