Anele -there is not a mom in the world who doesn't look back in situations like this and just kick herself black and blue. We have ALL done this.... my own son was sent home from school in 2nd grade with a note that he hadn't passed the eye-screening. I vividly remember my reaction, "Oh great, the stupid school mixed up his results with someone else, and now a kid that DOES need glasses doesn't know it!" He was seen regularly by his pediatrician, he played piano, was an A student, etc. It just didn't seem possible to me. It must have been 2 or 3 months later when I finally took him in to the doctor for his annual checkup, and mentioned it. So they lined him up 20 feet from the vision chart and had him cover one eye. I was really only half paying attention.... and then I heard my little boy ask, "Wait, are those numbers or letters?" I nearly fell over. Turned out he had perfect vision in one eye but a problem in the other, and the good eye had been compensating so we hadn't noticed it. I felt like a really, really bad mother for a long time.... until the next time I messed up.... don't blame yourself. You always sound like a wonderful mother.... keep us posted.

Positive thoughts coming your way. "Hind sight", we've all had it and it doesn't help. Let up on yourself.

That is so interesting, Yayagal!

Lots of good thoughts and positive energy (& cyber hugs!) being sent for your DD & you Anele! You two were the first people I thought about this morning. Holding you in prayer.

You're in my thoughts too, anele. Sending my best wishes.

Sending thoughts of good health to your dear daughter anele.

Thoughts for wellness for you and your daughter today!

Anele, I am definitely sending positive thoughts your way. I have been in your shoes on not pursuing the medical things. Kids do not always communicate well what is going on with them and so many things are so fleeting, it is easy to miss. For my daughter there were a lot of small signs that something was wrong but they were all subtle and over an extended period of time and the puzzle was only clear when she was diagnosed with diabetes. I felt terrible that I had missed it but I also accepted there was nothing I could do to change the past. Hugs to you!

Anele, I'll be sending lots of prayers and good thoughts for your daughter and for you. We've all been there.
Beth P.

Prayers and good thoughts for both of you.

As for parents ignoring their kid's symptoms, my dad made my brother walk on a broken knee for three weeks! My mother finally snuck him to the doctor's behind Dad's back. Poor brother was in a cast for two months.

Hoping for the best here. Sometimes even troubling symptoms can be innocuous. A couple of examples out of many in our lives-my DD had an EEG at 2 years- turned out to be nothing. And as a college student had episodes of syncope. Also after testing turned out to be nothing.
Hoping the same for you!

Sometimes people just get headaches, I'm afraid. My son is now 41, has had horrible, disabling headaches since he was 13. He has had mri scans, ct scans, blood draws, spinal taps, and even had his perfect, non-interfering wisdom teeth removed in his 30s as a possible cure. He has worn glasses since he was about 8, has had his eyes examined and glasses fitted by opthalmologists. He has practiced meditation for years. He has tried vegetarian diets, no carb diets, gluten-free diets. He doesn't drink, except for an occasional beer. He no longer drinks caffeine.

Some people just get headaches. I sincerely hope that is not the case for your dtr.

Anele, please don't jump to any conclusions until you find out definitively what is going on. As mothers we always jump to the worst conclusions and make ourselves crazy worrying before we know what is going on.

My daughter suffers from migraines, so does her 9 year old cousin. My daughter always knows when she is going to get a headache and also complains of "seeing 2 of something" as she puts it. My nephew starts vomiting first, then gets the migraine.

Both of them have had MRIs both were clear.

We keep a headache diary and avoid common triggers. She cannot eat too much candy or sugar, it will bring on a migraine. She can't be in the sun or outside too long in warm weather, and there are a whole bunch of things we try to avoid.

Of course when my Doc recommended seeing a neurologist, I thought the worst immediately. It turned out to be just pure migraines.

I wish you the best and will pray your daughter's double vision is nothing serious and something treatable.
Keep us posted.

I had written up a post on my phone earlier today-but somehow it disappeared! Rather than reiterate, I will just tell you I'm sending cyber hugs and positive thoughts for you and your daughter.

Please don't beat yourself up...I still feel guilty about my infant daughters constipation problem...and she's almost 30 now. I suspect the MRI will not show anything serious-unfortunately migraines don't show up.

I've been dealing with something similar with my daughter. When you say she has headaches; where do they start? Do they start in the back at C1 or do they sound like a typical headache?

Polly; do you remember my post about Chiari malformation? I've been doing a lot of reading about it; with an MRI; it's considered clear if there is a herniation & it's under a certain size. There are also other things Drs don't take into consideration; so unless you know how to look at the MRI; if they have CM; they will not get diagnosed until the herniation is a certain size. My daughter also has an issue with doing things like scrapbooking & beading where she moves her head a lot. I'm trying to figure out if her skull is sliding to much. . I'm trying to find a Dr in the area to help me with my daughter; we see my old neuro next month; I'm hoping that he prescribes a collar for her. She had MJRI's last week; I'm still waiting on the report; haven't had time to look at the CD.

Just checking in to see what is happening. ANELE!!! Can you hear me?

Roselvr, I remember seeing Chiari Malformation covered on Mystery Diagnosis some time ago. Did you see it? I posted a link in case you haven't. They feature a doctor on Long Island.

Anele, I'm anxious like the others to hear how things went with the MRI. I hope they're not making you wait for the results. That would be cruel. I'm sending positive thoughts to you and your family.

Here is a link that might be useful: Took 5 years to get it right.

You are all SO WONDERFUL. I have not been able to get to my laptop until now, but was able to at least read your messages!

I am hoping to come back soon to respond to each of you individually-- I very much appreciate you sharing your stories, words of wisdom and inspiration, information, and support. You are truly a blessing!

Here is the update-- the MRI had to wait until late Friday (that was the soonest the insurance would approve). They told me the results would be in within 24-48 hours, so should be by today, Monday. When I called the doctor today, they told me it could take up to a week!

RE: convergence insufficiency-- this is what we thought it was at first, and may still be. My older DD had it (to a much lesser degree) and vision therapy helped.

RE: migraines-- her headaches are constant, so I don't think it is that. She says she never has a time w/o a headache.

RE: Chiari malformation . . .could be. But would it have been caught by her CT scan a year and a half ago? Neck pain is actually my DD's #1 complaint.

I keep wishing she is just making it up. I told her I would not be mad . . .that, on the contrary, I'd be THRILLED. She said she knew the MRI was $ and she wouldn't make this up.

I am not sure what to do in the meantime. She is not writhing around in pain or anything, but it does affect her. She likes to do things to distract her from it (medicine does not help). She does not want to go to school, but complains about this on the weekends, too. We are doing some eye exercises at home and she seems to be getting better muscle control. Nothing seems to help the pain, though. Hesitant to go to a chiro.

Anyway, THANK YOU all again. Can't thank you enough.

The doctor receives the results from the MRI interpreted by a radiologist within 2-3 days .
That week time is how long it will take your doctor to review :(

We got the results-- CLEAR. Thank goodness!!!!

Now the next step . . .some basics like checking for strep, sinusitis, and also bloodwork to check for things like RA and lupus. She is also suddenly having knee pain to the point where she can't get up/down stairs without pain, but hopefully that is a fluke and unrelated.

Yay!!!! Lyme Disease??

Well that is good news as a first step; all the best of luck in finding some kind of diagnosis for her headaches, I understand what a concern this is.

Anele, my niece was diagnosed with Lyme Disease a few months ago. She had joint pain, neck pain, headaches, some fever, and malaise. Since they're checking for autoimmune things, ask that they check for Lymes, too...wouldn't hurt. The first blood test was normal, but a second result that came in later was positive.

I know having a child that doesn't feel well is hard. Thinking of you & your family.

chickadee I saw it when it was on TV but it's been years. I have the link up now & will watch it again. I remember the mom & the girl but don't remember the symptoms she had.

Anele; do me a favor & email me from my member page. Let me know where you live; because I can tell you if there is someone better to read that "clear" MRI.

I'll try to explain why the MRI is "clear" & I'm not convinced it is because of what you're saying. The CM pain is pretty specific where it hits. I have an image you can print to have her mark where her pains are. Also write in what they feel like as they come. A lot of the kids also have neck; shoulder & arm pain as well. They also have issues with vision.

Please get a copy of the report. When you do; I have a feeling there will be a small herniation. The reason they consider it clear is because they consider any herniation under 5mm to be clear & asymptomatic. Obviously there is something because your daughter is complaining of pain. Are you noticing it's worst during storm activity or when the baromic pressure is high? Does she complain that she can hear her brain beating? Does she have issues with regulating her body temp?

How long has she been complaining of pain? When she was younger; did she ever smack her head? Has she ever had swallowing issues?

It can also be more involved; there may not be a herniation; but the way the brainstem is shaped could also cause problems. Since she's 7; The Chiari Institute in NY is the best place to bring her. You're also able to send a copy of her scan & they'll tell you if she does or doesn't have it. I say they're the best because they do not look at size; they go by symptoms as a whole & take it from there. They also know about associated disorders. I know someone that uses Dr R there & is very happy with him.

Next; the leg pain. Are her legs going out from under her yet? Has she always complained of her legs hurting off & on? How about urination or bowel issues? Has she mentioned her legs feel like bugs crawling? A good Dr will send them for a Cine MRI & if it's clear; they send you to urology for a urodynamics test to diagnose; but the answers are not always black & white unless the doctor knows how to read them.

If she's complained of joint pain; that's a different diagnosis.

With Chiari Malformation; there are related disorders. Tethered cord (TC) is the legs; if they do not find the TC with Cine MRI; it's called OTC; occult tethered cord. Ehlors Danlos Syndrome (EDS) is the joints.

To add to it; with the head & neck; if you notice she gets headaches or vision issues when she moves it a lot; it's possible her skull is sliding too much with movement & she really should have a hard neck brace until she can be properly evaluated. In order to find out if it's sliding too much; she'd need a flex extension MRI.

There are a few groups on facebook that I can invite you to.

Anele, I was waiting to chime in after her MRI results. I get double vision and constant headaches all the time.

I was around 12 when my lazy eye began (it's inherited), we did the exercizes and they seemed to help.

Does your daughter show any sign of a lazy eye? My double vision begins when my eye's are tired, and my left eye kind of goes off on it's own. lol.

There's a surgery for the eye muscle, Demi Moore had it, but I was told I'm too old. What makes mine worse is I'm both near and farsided, my two eye's compete with each other. I can go into double vision mode instantly. I'm supposed to wear bifocals since I was a teen, but I walk into things when I do. :)

I get a headache all.day.long. The good thing is your daughter is still young and this can be dealt with!

Keep us posted.

I've just read thru the entire thread~so many possibilities, and all very logical.

My one thought, if she's had the symptoms as far back as you can remember, is there a possibility something could have happened during the birth process? Were forceps used? Could there be a dislocation of some sort? We've all heard of babies be born with a dislocated shoulder, broken arm, broken ankle, or even a head injury.

It may have been a 'normal' birth, but there could have been something missed, as a pediatrician only does a visual exam, along with heartrate, etc. Just something to think about.

I forgot to reply to a few things you said-

RE: migraines-- her headaches are constant, so I don't think it is that. She says she never has a time w/o a headache.

This is what they say it feels like; always having a headache; then they get worst with activity & storms

RE: Chiari malformation . . .could be. But would it have been caught by her CT scan a year and a half ago? Neck pain is actually my DD's #1 complaint.

No; CT does not catch it

I keep wishing she is just making it up. I told her I would not be mad . . .that, on the contrary, I'd be THRILLED. She said she knew the MRI was $ and she wouldn't make this up.

I don't doubt that she's telling the truth.
Some of the older gals post about their childhood & how they just suffered because their parents did not believe them so please; keep the faith that she's telling the truth until you learn where to get answers from. The last thing you want is for her to shut down. I'm going to include one post in my email to you.

I am not sure what to do in the meantime. She is not writhing around in pain or anything, but it does affect her. She likes to do things to distract her from it (medicine does not help). She does not want to go to school, but complains about this on the weekends, too. We are doing some eye exercises at home and she seems to be getting better muscle control. Nothing seems to help the pain, though. Hesitant to go to a chiro.

The weekend is a hint that something is wrong & trust your mom gut like you've been doing. The last thing you want is for her to over do it & decline. Also & I don't want to scare you; kids have passed away from banging their head while playing when they did not even know they had it. I posted a link to a story of a 6 year old boy in the September is CM month thread that I posted.

Some chiro's know how to deal with CM; there are other things they can safely do from what I understand. Doing a traction like thing on them to get pressure off of the brainstem.

Is she having minor problems bringing air into the lungs?

One other thought for you, Anele... I have dealt w/ very frequent headaches throughout my adult life, starting from age 18 or 20. (It has been determined that mine are related to spinal/pelvic issues.)

Something that has been immensely helpful in decreasing both the frequency and intensity of them is physical therapy--but not "traditional" phys therapy involving exercising/working on machines. Instead, the focus has been much more on massage, including a technique called FMT (functional manual therapy). Even if her headaches are due to something else, by now, her muscles have started to respond to the frequent pain she is having, and, as my phys therapist has explained, they will create "protective" patterns, where the body responds to the pain by having other muscles attempt to compensate/alleviate the pain, and more unhealthy muscle patterns will emerge. It can end up becoming a cycle that doesn't want to let up until those muscles are relaxed and the cycle will thus be broken.

Even if you don't pursue it to that degree (physical therapy), maybe just starting her on a regular routine of weekly or twice weekly (gentle) massage w/ a massage therapist might give her some relief. My only hesitation w/ that is that some people believe that you just have to "work through the pain", which could (understandably!)be very discouraging in terms of her wanting anyone to work on her. That was something else that my PT was very careful to stress--if she was hurting me, I needed to let her know, otherwise your muscles tighten up instead of being able to relax, which is obviously counterproductive!

If you might be interested, the owner/director of the PT office I use might be able to recommend someone in your area, as she has been a PT for many, many years and has contacts throughout the country. (She also does a lot of work w/ pediatric patients).

Sorry this was so lengthy, but I did want to present another option-- hate to see a child hurting, and I know it's much moreso when it's your own child.

I have nothing to offer, but wanted you to know that this just breaks my heart. I can't imagine many things worse than seeing your child in pain. Sending good thoughts your way.

Good point about the massage Jbrig. My chiro has lectured me about that time and again. If I stay in a pattern of regular massage, my shoulders don't end up around my ears and my neck hurting.

Anele, hoping your girl is feeling better. And how is Paulina doing? Last update she was on the mend, hope she's fully recovered by now.

Anele, just wanted to add to the positive thoughts and would also like to know how Paulina is doing.

Anele - positive thoughts coming your way. Forgive me, but I must have missed something posted by you in the past. I am not getting why the Chiari malformation dx is being discussed in great detail?

Many of your child's symptoms could be from a whole host of different conditions, lyme disease being at the top of the list, and can easily diagnosed by a simple bloodwork. However, I'm definitely not one to borrow trouble, and would try not to begin my search for what is going on with the worst possible case scenario.

I don't mean any disrespect to anyone here, but as a parent with a child who suffers from a disease that only occurs in only 1 in 50,000 live births worldwide, I just think that jumping to worst case scenario isn't going to do you any good at this point. Also, not one in favor of internet diagnostics.

I do get that things can be serious, but to keep your sanity, try to not get too far afield without guidance from a very qualified physician. I do understand how tough it is to have a child who is suffering, yet there isn't a quick final/definitive diagnosis made, BTDT. I so get that you want as much info as possible from people participating here, but IMO, I would leave the diagnostics to the pros. Are you close to a major childrens' hospital/center? If so, I would rely on those physicians, etc. to guide you with regard to tests and possibilities/probabilities.

Please check in to let us know how things are going.

Work; I mentioned it because of what Polly said; Anele then said her child's start at C1 level. I then gave her enough information so that if she does not get satisfaction; she can look into it more. The CM & other things that go along with it; are not as uncommon as people think. The problem is there are not many doctors that know how to figure out if it's more involved to correctly diagnose.

My daughter gets worst the more she moves her head. She was throwing up after beading & making a scrap book. Her dad has cervical issues; I think she inherited them plus something else which is making her skull slide too much when she moves it. We see my neuro in 2 weeks; I'm going to get a hard collar for her to see if that helps. If it does; chances are it needs to be looked into further & if he can't do it; we have to travel to Maryland or NY.

Roselvr and anele hope your daughters can find someone soon to help.

As Roselvr has stated, CM is more common than you would think. In the past it was estimated at 1 in 1,000 births. However with improvements in technology it much more common. There is also a connection between HDCT (Hereditary Connective Tissue Disorders) and CMI.

It is also true, doctors fail to diagnose both HDCT's and CMI's. For my son and I, it took a decade (son) and many decades (myself) of suffering from many issues to just receive a diagnose (and after several surgeries to help with living). If you have a serious problem, I strongly suggest seeing a Geneticist.

anele & roselvr - hoping that you both get accurate answers for your DDs very soon!

Anele, hoping they come up with an accurate diagnosis soon. We'll be keeping your DD in our thoughts and prayers.
Lynn

Thank you all so much for the support, information, and inspiration. It is so helpful to have different perspectives and hand holding.

The latest is that DD's headaches were escalating-- to the point where she was crying with pain. I took her back to the doctor and discussed CM again . . .just to be sure, she had a 2nd radiologist look at the MRI and they were completely sure it is not that. They did an x-ray as well, because our next stop was an orthopedic MD.

However, my DD was in so much pain (and getting worse) that I took her to the ER. I brought up Lyme disease-- they said no. As MANY of you have said . . .they said she is having a migraine and could not believe we were not yet seen by a neurologist, as that is the 1st step for headache relief, in their eyes. Her regular peds disagree with the migraine dx, but I talked to a neuro researcher who has suffered from them since she was 4, and she said that they very well could be. Seems my peds have a very fixed definition of what a migraine can/can't be.

The "migraine cocktail" from the ER has helped DD-- she is no longer in the horrible pain, but she still has headaches all the time, and sometimes they do get worse. We are going to see a neurologist this afternoon. Not a headache specialist, however-- the wait for that doc was MAY!

What still concerns me is that the pain is always in a certain fixed spot, and then there is pain that moves around in addition to this. Her eyes also hurt. Double-vision is improving!

Anyway, thank you so much again. I told my family how so many of you said: sounds like a migraine-- but that my doctors immediately said no to this--but ER docs agree with you. The human body is so complex, isn't it?

Roselvr, I am just so sorry for what your daughter is going through. It is horrible. Please keep me updated.

Anele, I am so sorry you and your family are dealing with this. I can't imagine the worry and heartbreak you must feel in seeing your daughter in so much pain. Much love for you and your daughter.. and all my hope and wishes that you get a good diagnosis soon. As you know, once you know what the problem is, the rest is a path to a solution.

Migraines are tricky business and they vary so much in symptoms. My friend was diagnosed with migraines after having episodes of numbness in her face -- no headache, or rarely a headache. So I think migraines can take many forms. So sorry that your DD is going through so much pain. I hope you get answers and relief very soon.

Sounds like possibly ocular migraine. Long-time migraine sufferer here. The meds can be life savers, but if you can start to identify triggers, that will honestly be the best route to take. Just keep a notebook handy and routinely record her days, and her pain or lack of. Don't try to draw any correlations initially. Just observe and record. Besides food, record the weather, her activities, etc. My main triggers are extreme environmental factors -so a very strong smell (such as undiluted bleach) will trigger one. Loud, sustained noises (such as the machine shop open house I attended as a child). Strong sunlight (I wear sunglasses 100% of the time I am outside, year round). A hat is a must, as sun on my head is a trigger. This may sound horrific, but honestly, once you get an understanding of the triggers, the migraines can manage themselves.....

Sounds like possibly ocular migraine. Long-time migraine sufferer here. The meds can be life savers, but if you can start to identify triggers, that will honestly be the best route to take. Just keep a notebook handy and routinely record her days, and her pain or lack of. Don't try to draw any correlations initially. Just observe and record. Besides food, record the weather, her activities, etc. My main triggers are extreme environmental factors -so a very strong smell (such as undiluted bleach) will trigger one. Loud, sustained noises (such as the machine shop open house I attended as a child). Strong sunlight (I wear sunglasses 100% of the time I am outside, year round). A hat is a must, as sun on my head is a trigger. This may sound horrific, but honestly, once you get an understanding of the triggers, the migraines can manage themselves.....

I just assumed that your DD had her films sent to a neurologist already. Are you close to a major Children's Hospital, or a university hospital that has a significant pediatric treatment unit? No idea where you are located, so can't make a recommemdation.

This has been going on for so long, anele, I cannot even begin to imagine the stress this is causing you as DD's mom. The "no diagnosis" thing, is IMO, so stressful. At least if you knew what was wrong you could concentrate your efforts in dealing with that.

Ugh, hope that when I check back here again, we will see something concrete in the way of a diagnosis. Again, very glad to read that you're seeing a neuro. I hate add, but I think I would seriously consider changing your DD to a different pediatric group once you get to the bottom of this.

Positive healing thoughts being sent your DD's way.

I only share this because I had a friend who too suffered from blinding headaches and went through CAT scans, all kinds of neurological testing and they found nothing.

AFter several months, she started having severe stomach pain as well and when they did a scan of her abdomen they found a benign tumor that was pressing on her spinal cord which increased the pressure of the fluid in her spinal column/brain - which was causing all her headaches/eye pain etc.

Once the tumor was removed, all her head pain went a way.

Thank you all-- I am researching what everyone has mentioned to see if anything "fits." Carol, I will keep in mind what your friend went through, in case it progresses.

We saw a neuro at a nationally famous children's hospital. She does NOT think they are migraines, as the symptoms don't fit, and the typical migraine treatment doesn't work for DD. She thinks the pain is very real but that they are stress-related. :( Hard to say. We are going to be keeping a journal to try to figure out why some days are better than others. However, her treatment is to lie down in quiet for 30 minutes (along with meds/water) and DD is now avoiding complaining because she does not want to lie down. I can see on her face and in her behavior when she is in more pain, even when she does not talk about it.

It's still a mystery at this point. I am thinking of alternative medicine next-- maybe acupuncture, and other stress management sources.

I am just still worried they are missing something. I know of too many cases where the person was not given a correct dx.

Anele,
I am reading an interesting book about use of digestive enzymes in autism...not what you are dealing with...except that the mother/researcher who wrote this suffered with migraines her whole life until she changed her diet and ultimately began using digestive enzymes along with her neurologically compromised sons. It is called Enzymes for Autism and other Neurological Conditions by Karen DeFelice. Might be worth investigating further. I hope you can find a solution.
Judy

I'm still wondering if it's her eye's. What type of eye doctor did you take her to? An Optomitrist can't help on this issue, but an Opthamologist can.

Wearing glasses at 7, double vision + headaches, it sounds like she needs an intense checkup of the eyes. I'm assuming the lens in her glasses are correct?

Also, watch her eye's very closely and see if they do any unusual movement. Cross-eyed, or one eye going off in a different direction. That causes major headaches.

Anele, another very important factor to consider is diet. Three of my co workers and I have started moving towards a plant based diet in the last year. I've just cut my dairy and meat consumption by about half and upped my plant based (lots of raw veggies, lentils, chickpeas, beans, that sort of thing) by the same amount. A health problem I've had for 8 years has completely disappeared. One of my coworkers has been much stricter about the diet than i have (has cut out meat and dairy altogether) and has lost 30 lbs and has complete relief from joint pain that has plagued her for her entire adult life. Even if you don't buy into the plant-based (I probably sound preachy about it, but it has helped me so much) it could be an allergy to a food (sorry if this has been mentioned above). Just one more possibility.

Anele; keep track of the weather too. I'm glad you got in with someone who realizes they're not migraines & is willing to find out what it is; hopefully you'll get answers. You should consider a rheumatologist & genetics. Genetics can take a while to get into. Also consider letting me post her scan in the message board I got to. Her info can be edited out of the scan. If you'd like an invite; I'd be glad to do that. It may help to read what others post so you can compare your daughter.

I posted my daughters last night; they do see a herniation when the person reading it did not. I saw my old neuro today; he's going to help me; crossing my fingers it goes good. I have rheumatologist; orthopedic & genetics set up. Genetics is in June!

Anele I would like to suggest meditation.My DH and I are both meditators and it has changed our lives. Your DD could utilize the linked you tube while lying down. I know how beneficial it is especially for stress. Please do let her try. If you Google Meditation for Children you will find numerous other links. c

Here is a link that might be useful: meditation for children

Wow, I'm so sorry your daughter is going through this. I'm saying a prayer that they find out what's causing it and your daughter can go on living a normal, healthy life.