My 7 Yr Old Has These "Spells" Where His Eyes Shake from Side to Side....

Very late answer and may not be relevant, but my cousin had this problem with and she tied it to too much time on video games (the Wii in particular). When she cut it out it stopped.

Hi K. I think I saw a story like this on a show called Mystery Diagnosis on the Discovery Channel. Maybe you could look and see if you can find the story. I think it was about a little girl who had the same symptoms. I hope it helps.

Hi K.,

It must be totally awful not to be able to help your baby. We as moms think we should be able to help and sometimes we just can't. The question that kept coming to mind as I read your story was, what kind of doctor did you take him to. Since he seems totally coherent during the episodes I wonder if an eye specialist might be more help to you. Maybe it is just a nerve malfunction around the eyes.

I have never understood why doctor's and hospitals never seem to get that while they see this stuff every day, the patient is the one suffering and needs quick as possible answers for their peace of mind. I think you are doing the right thing to keep calling and be the squeaky wheel. It is also okay to change doctors. Do your research, ask friends and some cities have a referral service where you can tell them what you looking for in a doctor and then they can help you find someone that better fits ALL of your needs. We tend to think that doctor's are God when the fact is, they are just people to. Don't be afraid to stand up for yourself and find a new doctor if this one isn't working. You must be your own advocate as well as your child's.

I think you are on the right track. I wish I had more to offer.

D.

Wow - what a frightful thing. It looks like you have some great personal testimonies to guide you in your search for a diagnosis. One person mentioned a website that can lead you to a Craniosacral therapist. It sounds very hokey, but I've read a lot about it in Dr. Andrew Weil's books on natural medicine (He practices in Arizona). He speaks so highly of it that I recommended it to my step mom, who hasn't been helped at all by traditional medicine. She is getting much better. My office mate also received it by a physical therapist, and he was better almost instantly.

They don't have what your child does, but I really want to encourage you to check it out. When the nervous system is working well, the rest of the body can work as it's supposed to. And if it works, it's so much better than a lifetime of medicines.

Good luck to you - I will pray for you tonight!

K.
My son had seizures as teenager and I went through the same frustrating feelings. I got second opinons and either Dr. would not order an MRI. I felt like I was forsed to tell them I was reporting them to the insurance board and that moved me right along and stoped me from having to call over and over and running into dead ends. I work with nurses and asked them if they have ever heard of what your son is going through and one nurse said that could be from an inner ear infection and suggested taking him to a eye nose and throat doctor and also said she has heard of Nystagmus I don'tknow if I spelled it correctly but you may want to look it up online and see if it sound familuar. Good luck and just keep pressing forward.

Have you checked to see if his MRI could been done anywhere else. I work at the hospital in Safford and know that they have appointment openings usually the day after it is scheduled. Just check and see.

Hello K.,
my name is K. von Merveldt-Guevara, I am a German MD, yet work as a Hands-on Medical Healer in the tradition of the Hopi people here in Sedona.
I work with a lot of neurological problems, Nystagmus, Seizures, Torticollis, Parkinson or Parkinsonism etc. as a big part of my work is osteopathic and craniosacral work, many times emotional release and autonomous nervous system balancing...

What you describe your son doing is called "Nystagmus" - the way I sense it and I have seen it with several patients, one was a 9 year old boy, is that the cause lies in a locked in brainstem with an impact on the Chiasma opticum, the spot where the main fibers of the two optic nerves cross over. The brainstem gets over time locked into the Foramen Magnum, the big hole at the base of the skull due to adhesions of connective tissue which sheathes the brain. These adhesions are sometimes caused through birth traumas, which go unnoticed, e.g. the head of the baby being pushed by the contractions against the pubic bone while going through the birth canal, etc. or later traumas through head injury...the problem sometimes doesn't occur until later in life, when the natural growth process of the spinal cord creates a pull on the lower brain structures, which then suffer from "impingement" -
Not knowing where you live I offer you to call me at ###-###-####, to discuss more details with you if you liked. I cooperate with an excellent osteopath and Integrated Manual Therapist here in town, too, his name is Luc Chabot, if you wanted to get his opinion. You can reach him at ###-###-####. We sometimes assess together and assist each others work.
Our website is www.harmoniamundi.info in case you'd like to read more on us.

Keep your head up, there is a lot of knowledge out there, though not forcibly in the "mainstream" Western Medical field...

If you are far away from Sedona, try to find a craniosacral therapist or integrated manual therapist, preferably trained by "Upledger" close to you!

Heartfelt Greetings K.

NB: I am a mother of three ( almost 4, 8 and just turned 11 today), working in what I love doing the most, embracing life as it comes...

Dear K. --

I have had seizures since 1993 and I am ALWAYS CONSCIOUS -- so don't let any doctor tell you that it is not possible to have a seizure unless someone passes out. There are many kinds of seizures. When your son tells you in advance that it is going to happen, he is having an aura. Those of us who have seizures learn to recognize when they are going to come. Fortunately, medication will usually control these seizures, when the type can be identified and EEGs do not always do that. They could not find anything on brave wave tests for me for years. It took taking me into the hospital for a week at a time and having me wired 24/7 to watch my brain to finally determine what was going on in there.

What you need to do is to get to Mayo Clinic with your child. You need that kind of care and a second opinion. It is available to you and they will take care of this. I came here to live for Mayo and they have been my lifesaver.

Yes, you are going to have to be an advocate for your son. But if I can give you any suggestion, it is this. Don't stop fighting for him. Whatever they find, let him have a life -- a full life. Do not limit him. Very often people with this kind of affliction are afraid to live and he is young and it would be a shame to rob him of his life. If ever I can help you -- or if you need to talk -- you can reach me at ###-###-####. My email is ____@____.com consider taking the chemicals out of your house -- remove all the irritants from his life.

I wish you well and I will keep you and your son and your family in my prayers. M. W

Hello.. I don't want to downplay this at all, I know I too would be devistated to see one of my 4 kids going through this... however... about a year ago I had a simular thing start up on myself. I can tell when they are coming sortly before it starts and it is like when you are about to pass out, the room is moving (to me, to others it is my eyes that are moving)and even when I lay down it wont stop, and I get very dizzy for a lack of a better way to put the feeling. When they first started that is what I thought was happening, that I was about to pass out, but again they happen at any time and even when I am in bed, nothing will stop it when it is coming. You have to just sit there and wait for it to quit. I was afraid to leave the house and more so afraid to drive..I went through all the tests your son is going through, checking for seizers, tumors,eye problems, ear problems, blood work, so many things only to have them find nothing at all. A few months after giving up and starting to learn to live with the eye bounce and dizzy spells I switched Drs. My current Dr. said he thought it was my allergies and that they were getting very bad and causing these other symptoms. I of course laughed at that idea and thought he was crazy, however, I gave his advise a try and as long as I take the allergy meds every day the spells do stay away.. when I slack and miss them they come back in full force which for me is daily. So again I don't want to downplay the whole thing because it may not be the case with your son, however, it might be worth a try .. your son like me may have to live on allergy meds as long as he lives in Arizona.. I will be praying for your Son and for you, as Mom's I know things like this can actaully be harder for us then it is for them. I truly hope it can be as simple as allergies for your Son!

Take him to your Church and have everyone pray for him!
Take him to the eye Dr. They might know something. Maybe corrective lenses will help from time to time.
Just never undersetamate the power of prayer!

Hey K.,

I know what you are going through and just keep being an advocate for your child as you've been doing! My daughter was diagnosed with Tourette Syndrom and after 4 years of trying EVERYTHING we finally got in touch with a Chinese Acupuncturist here in AZ and it was truly a miracle. After 6 treatments - 90% of her tics/seizures are gone. We are more into the natural alternatives because the medication gave her convultions so I feel like I need to let everyone know about this to help others in this situation. After ruling everything out with MRI - maybe you can try this alternative. Please feel free to e-mail me if you have any questions.
____@____.com Make sure the Acupuncturist is trained with many hours in the Chinese way because with the herbs and the acupuncture - she is a new girl!!! B.

Hello K. -

I am sorry that you are having to deal with the frustrations of navigating the medical system. I am a pediatric RN in Mesa and would strongly recommend that you get a second opinion if your insurance allows for you to do so. I work at Banner Children's Hospital and we have excellent neurologists that are affiliated with us and do not usually have as long of a wait to get scans done - depending on how they are ordered. If you would like to talk further about this I would be happy to give you any feedback I can. I definitely think it is something that should be handled sooner than later. I agree that he may benefit from seeing an opthalmologist, but getting an MRI will really be helpful in continuing to rule out something neurologic and then you can move forward in exploring other possibilities. Hang in there and please feel free to send me a message if you would like to talk further.

T.

Hi K. S in regards to your 7 yr olds "spells" have you taken him to see an ophthalmologist? He or She maybe able to at least tell you what may be going on or the cause of his "spells". Just a thought.

I have not had any personal experience with those "spells" but I would advise you to seek a second opinion. Even a different hospital if you can. It is not quality care to have to wait that long as well as the lack of contact from the doctors. I was told to remember that for doctors this is thier JOB and with jobs sometimes they forget that they are dealing with real people. You are the best advocate for your child, and you have the right to stand up and say this is not right my child deserves better. If you can try another doctor, another hospital if needs be.

Here is a link that defines seizures a little, My sister had massive siezures from the time she was little and from what i know every time your muscles spasm, or your eyes twitch that is techincally a siezure and you can be fully aware while having one.

http://en.wikipedia.org/wiki/Seizure

I work with kids and parents of kids who have mental disabilities such as ADHD, autism ect. I have a client whoes son has siezures and he is totally alert. He will talk to you while he is haveing one. They told her that he could not be haveing a seizure because he is awake and alert.He doesn't have the shaking eyes that your child does but he is haveing seizures. I have heard really good things about St. Joes Hospital as far as children's Health issues. As far as your doctor I would fire him and find a new one. Remember he works for you.I know that is easier said then done. I woould discuss your concerns with him, then if the prob;em isn't resolved get a new doctor. If you don't fight for your kids no one else will. Good Luck I will be praying for you and your family!
T. R.

hi K.,
i can imagine how scary this must be for everyone, but you are doing what you can to have your son checked out, and you're caring for him in the mean-time, and all that is incredibly important. although i am not a neurologist nor a pediatrician, i do have a background in health and nutrition (i'm a licensed practitioner of traditional chinese medicine), and i would recommend that you do start your son a very good source of omega-3 fatty acids. these will nourish all the cells in his body, in his case specifically, his nervous system. he can take a tsp. of omega-3-rich cod liver oil. i'd recommend garden of life's cod liver oil, as it is incredibly pure, and is naturally-flavored with lemon and mint, to cover the fishy taste. this is very important supplementation. there are other dietary changes you should consider, but without knowing his diet, and i wouldn't recommend specifics. however, you can find the oil at any Whole Foods grocery. you will be making a change for the better for him just by doing this, so please consider it.

Sometimes rapid eye movement can be caused by a mineral deficiency or hormone embalance. If you haven't already I would ask the dr to order a FULL work up of labs and see if anything is not right. Ask for the full wammy, even things that are not normally ordered for a young kid! Good luck.

I would definatly see an optician as well. It is sad to say, but a lot of times Drs. in fields such as vision and dental have been discredited by physical drs. It seems as though sometimes they have had to work harder to get the respect they deserve and this in turn makes them more knowledgable on the more bizarre ailments we sometimes encounter. Also I would check with a pulmonary dr. if nothing shows up with the MRI. Sometimes medicine fools us. It would be logical to think that an issue such as your sons would be related to the nervous system, but sometimes this is not the case.
Best of luck to you all and always think of the positives. It seems that this occurance has not effected him mentally, which is an absolute blessing. I truely hope you find the culprit.

I don't want to sound like I am blowing this off as a kid thing, but I can shake my eyes back and forth, and always did it to freak my mom out. I would, if you haven't already, sit down and ask him if he knows what is going on, and if he is doing it, or if he knows why it happens. Kids are very aware of what is going on too, they know their bodies better than anyone else. I truly hope it turns out to be nothing. Good luck with all the testing and all that goes with that. If you want to talk further, feel free to e-mail me, ____@____.com

Good luck and take care.

First of all, realize that the unknown is the demon that you must conquer. I have gone through some weird nerological things with my daughter who would have tremors....turned out to be an endocrine disorder. So once you have exhausted all neurological testing and if nothing comes from those you might try a good endocrinologist. Try not to let your unease with the situation scare your child, they need you to be strong. Sometimes these medical issues are not quickly resolved as much as you want them to be. Keep up the calls, the pestering, etc. In this day and age quiet patients don't seem to get the care....sadly it is the persistance of a good mom that will get things done more quickly. I wish there was more I could say to help your frustration.

go to www.upledger.com and read on Craniosacral therapy. I have been doing CST Craniosacral therapy for many years and the results in situations like this are phenominal. You can also find a therapist near you using your zip code.
Good Luck I know this would help.

Hi!

I strongly agree with seeking some cranial-sacral care for you child. I'm a pediatric chiropractor and although I have not personally worked with a child with this, it does sound like there could be tension on his nervous system that is affecting him. Tension results from misalignments of spinal bones and the resulting pressure inhibits the transfer of electrical impulses, causing a wide variety of effects. The bones in the neck are especially delicate and since the top bone surrounds the brainstem, a misalignment there can have tremendous impact on the brain as well as the rest of the body. I do not do cranial-sacral myself, instead I do very gentle adjustments (which would also correct the tension, but with all that your son has experienced, cranial-sacral care would be less scary, I think). I know of a wonderful woman who does cranial-sacral care, Ali Lindsey ###-###-####. I believe she may be more west valley or north phoenix area, but she comes highly recommended. Also, while I agree an MRI is important to rule other possibilities out, it will not show nervous system compression. Just so you know.

If you have additional questions regarding chiropractic care for kids, I'd suggest checking out icpa4kids.org-- it's the website for the International Chiropractic Pediatric Association and there are many research articles and names of pediatric chiropractors in your area listed there. Or you are more than welcome to contact me for more information too.

Hang in there! It's scary, but you will find the answers you need.

I myself am epileptic. I have what they classify as juvenile myoclonic epilepsy. And I have those "spells" too when I look at anything that has a close vertical or horizontal pattern, such as mini-blinds (this is called being "pattern-sensitive" in epileptic speak), and these "spells" also happen to me when I see strobing lights (this is called "photo-sensitive"). I first started having these when I was about ten years old and they wouldn't last very long for me, about ten seconds. I just thought it was normal, part of puberty or something. And then when I was seventeen I had a grand-mal seizure. Well, anyway to make a long story short, I have had a number of MRI's, EEG's and EKG's in my life and NEVER ONCE has it turned up that I have seizure activity present in my brain. This is very common with epilepsy. Please do not discount the fact that your child may be epileptic and even though these spells can be scary your child can get on meds that can help him/her lead a happy, healthy and very normal life. For more information you can go to the Epilepsy Foundations's website.

One other thing I wanted to add was that your doc said it may be some type of vertigo? Look up "Labyrinthitis" on the web and talk to your doc about it. I had this problem for about a month a few years back. It is a swelling of the inner ear and it causes you to have these random attacks of extreme vertigo where you completely lose your balance and have motion sickness. It is extrememly scary and can cause your eyes to do that back and forth motion sometimes and you are completely aware while it is happening. It can last up to months and when I had it I could only take motion sickness meds for it and the sad part is that it can sometimes come back again afterwards at random.

I hope that some of this helps. It is scary when your child is sick and you feel helpless. Please let us know how your little one is doing... :)

Hello. I just read your entry here and have some input. I am 34 years old. AND THESE SOUND LIKE Petite mal SEIZURES. I had these for many years. And no doctor ever got it right. I would have them randomly but once I became pregnant I had them every day at least twice a day. I finally found a doctor that said seizures. I did not understand. I would feel it come on and kinda zone out but still aware what was going on and they would not last long. They put me on anti seizure meds and it has helped since that.
I recommend trileptal or keppra.
I just want you to know it does not hurt. It can make you very tired after. And it can be scary because you can feel it come on but can't stop it. And sometimes sounds are very sharp and can scare you..
I hope this helps. Good luck mom. I know it is scary but you guys will figure this out. Don't let them tell you it's nothing. Follow your instinct..
Much love
C.

K., I know it must be very hard and frustrating to feel that the system is standing in the way of your son's health. I too live in Arizona and have had LOTS of difficulty getting to see specialists. My daughter was sick for the first year of her life and while I had good experiences with PCH, it took FOREVER to get appointments! Wait for this. Wait for that. Do this and wait, wait, wait. It was absolutely gut wrenching at the time.

There is a problem in Arizona with a lack of specialists. It stems from a lack of government grants for doctor residencies in the state.

You may find help through a patient advocacy group like www.patientadvocate.org. These are generally nurses who have been on the other side and can help you get appointments and answers that you need.

I pray for your peace and comfort at this time and for your son's health.

Was he evaluated by a neurologist? Because it sounds like seizures to me. If you have done all you can here in town, try going down to U of A and see what they can find out. Just because one or two doctors through up their hands and say "we don't know or we think" does not mean there is nothing left to say or do. Keep looking until you find your answers. You have a gut instinct that is telling you something, listen to it...
And don't be afraid to become the 'momma bear' if you have to!

Hi K.,

For your medical complications, I would check in with Family Voices, at www.familyvoices.org. They may be able to help you.

Hi K.,
I don't know about the medical side of your son's eye problem, but I do know about the emotional side. We have had a medical struggle with our daughter for 2 years. I have learned that she picks up on my moods and reflects back my feelings, even when I think i am not displaying my feelings. If I am worried about a test or proceedure, she freaks out more. When I am calm inside, she handles things much better. It sounds like this eye issue has taken center stage in your home. Is there a way that YOU can find peace in the middle of finding out a solution? Your peace will calm your child. I am praying for you and your son.

Hi K.,

I'm sure this must be very difficult for you. Having dealt with insurance issues during a crisis, myself, I can sympathize with your frustration.

You're doing the right thing be getting testing. In the meantime, I highly recommend doing the following:

*Seek care from a Naturopath (see my resource list at www.healthhabitswellnesscenter.com)
*STOP using ALL household chemicals. This includes laundry detergent, fabric softener, diswashing detergent, and any cleaners. Switch to environmentally friendly, non-toxic ones.
*Same goes for personal care products (like soap and shampoo).
*Take a good look at his diet. Remove any preservatives and dyes, as many are neurotoxins.

Please call me at ###-###-#### or email me at ____@____.com for more info.

Best wishes to you!

Could it be Nystagmus? here is a link: http://en.wikipedia.org/wiki/Nystagmus
or
http://www.spedex.com/resource/documents/veb/nystagmus.html

Best of luck, sounds scary..

I'm sorry you are having such a hard time. I just wanted to give you some encouragement. Keep plugging along. You are your child's best advocate. I hope everything works out for you!

Oh dear... being so unsure what's happening and having insur issues is horrible. What insurance co are you dealing with? Many insur co's nowdays can assign you a "case manager" that can help rush along authorizations and do a lot of the frustration phone work for you. He/she is someone that you can contact directly and get more timely answers from. Try calling and requesting one. Also, usually insur co's will cover a 2nd opinion, or seeing an opthomoligisht (an M.D. eye doc) even if you don't have optical insur. Is there ANYTHING your insur WILL pay for right NOW? The testing may have to wait unless you pay out of pocket (a completely corrupt system). Just keep up what you're doing. It is always helpful to doctors if you can keep a log or journal surrounding the "incidents"... what he ate before, how he slept the night before, how he felt before and after. Some info that may seem erroneous could surface a pattern and help with diagnosis. Anyways, someimes you have to go beyond assertive and be aggressive. You don't need that added stress--i'm soooo sorry--i'll be saying an extra prayer in my heart for you today.