Vitamin D deficiency

It sounds like your daughter has developed Chronic Fatigue Syndrome following the Epstein-Barr infection (mono) to me. Although the vast majority of people recover fully after a mono infection, a small percentage don't and contract CFS. I was one of the unfortunate few. Getting her Vitamin D levels normalised is a good idea, but the deficiency may not be the cause of all of her symptoms. I hope she gets some answers soon!

Okay, i feel some of those things sometimes...I'll get my vitamin D checked, I'll try not to alienate any dr's by panicking in the process though.

also, just a thought, I suffered from migraines as a child and as an adult removed any and all migriane "triggers" systematically from my diet. turns out caffeine was the culprit for me. the biggest one. if I had known this as a child I would have not consumed caffeine. (in the form of soda and iced tea, etc.)

talk to her dr about this and other migraine triggers and follow thier suggestions about how to wean off because if these are a problem for her cold turkey will be painful and trigger migraines. i quit under the strict instructions of a neurologist and was migraine free for 2 years. i recently 'fell off the wagon" and have to quit again but at least when my levels are steady for caffeine intake, the headaches are way less of an issue.

try to remain emotion free as possible as emotions get in the way of logical thinking which you need to sort through all this.

I'm in the sun a lot, don't use sunscreen (whoops) and have fairly tan skin so I did not suspect a vitamin D deficiency. Recent blood work and it shows that I'm low, which makes sense with some of the recent symptoms I've had in the past year. Prescribed 50,000 IUD/week.

Given that you have to take A HUGE amount of it for it to get toxic, I have no problem recommending that most people get more than they do now. There's a reason why Europeans evolved fair skin... those with darker skin were dying due to Vit D deficiencies. It's a "master hormone" vitamin, and is used for so much more than building bone density. It has huge effects on the immune system. There's no need to do a daily dose. I take a single 10,000 IU pill per week. When I started doing that, the tendinitis I had in my wrist went away.

Vitamin D deficiency effects the majority of people that live outside of temperate climates...to far north in latitude or south. If your daughter has migraines, has she been to a neurologist yet? You don't mention that and unless she has been diagnosed, unexplained severe headaches need to be seen asap.

Alienating your healthcare team can put you at a disadvantage also, nobody wants to deal with the know it all mom that can Google....not saying that is how you are, just how they may see you. If they view you that way, they will not take your concerns into account.

Bone achyness can be caused by growth spurts also and these last 2 years your daughter is just trying to reach adult height (average) most likely.

You also mention she was diagnosed with vitamin D deficiency, I thought you said the doctor said levels are normal. a supplement is still good though, I live in Ohio and take mine and get sun when its there.

I strongly believe in advocating for my child and that the doctors work for me, but I go to a doctor because they are educated in their field, where I am not.

Its great if you found a doctor you can trust, but you need to let them do their job. Most doctors do not just look at you and say "I got no idea" then just send you on your way. Also a neurologist needs seen if you think your daughter has migraines, if it is not diagnosed it is headaches.....sorry as a migraines sufferer, headaches are 100% different and the actual head pain part is only a fraction of what a migraine is. Unexplained severe headaches are always a cause for concern and on some cases an er visit.

I hope you find the answers for your daughter, feeling helpless when your child is sick or injured is an agonizing feeling. If her head pain is reoccurring, have her keep a headache log, the neurologist will want one normally and this will put you a step ahead. It will also show triggers.

I strongly disagree about the "letting doctors doing their jobs". Like ANY profession, some doctors are great and some aren't -- and you have to be willing to seek out the good ones and know the difference. With how the medical system is set up in the US anyway, even the great ones often don't get the time or have the energy to practice how they'd like to due to insurance constraints, malpractice constraints, etc. I know several doctors, both in the family and among friends, and EVERY SINGLE ONE of them encourages patients to be their own advocates and to educate themselves. If you've ever spent any time in a hospital with a loved one with a serious disease, you know how important this is. Relying on doctors blinding without educating yourself and having educated discussions with them on matters (and sometimes it's the patients that teach them a thing or two) is a HORRIBLE idea. Absolutely horrible.

I strongly disagree about the "letting doctors doing their jobs". Like ANY profession, some doctors are great and some aren't -- and you have to be willing to seek out the good ones and know the difference. With how the medical system is set up in the US anyway, even the great ones often don't get the time or have the energy to practice how they'd like to due to insurance constraints, malpractice constraints, etc. I know several doctors, both in the family and among friends, and EVERY SINGLE ONE of them encourages patients to be their own advocates and to educate themselves. If you've ever spent any time in a hospital with a loved one with a serious disease, you know how important this is. Relying on doctors blinding without educating yourself and having educated discussions with them on matters (and sometimes it's the patients that teach them a thing or two) is a HORRIBLE idea. Absolutely horrible.

I stated I am all for advocacy and when my husband was hospitalized I was involved and asked a million questions, I also kept his primary doctor on speed dial and used her as an advocate too. You should be educated and an advocate, but believing you know best over multiple doctors will not lead to anyone taking you seriously. Educated questions and not statements will go a lot further. Part of choosing a doctor is doing your research and choosing one that is knowledgeable and listens. You make your best choice and then you need to let them do their job.

I have a very rare blood clotting disorder....not like metabolic rare.....extremely rare like the rare disease database rare. For my heritage it is something like 1 in 10,000,000 and my levels from carrying a double gene are 1 in a million of that number. When I got diagnosed they sent me everywhere, they thought I had leukemea, then some other kind of cancer, then an autoimmune disease, then Von Willebrands (clotting deficiency) when the final results came back to factor XI deficiency, my hematologist retested 6 times because the odds said something was wrong and that couldn't be the answer...I am not of Ashkenazi Jewish descent. The news was I did have this factor deficiency and my levels were low enough I had both genes, so I am full facto XI deficient.... My daughters are carriers and may test low in favor XI. The point to telling you this....well my symptoms were spontaneous bruising, bleeding sinuses, low wound healing rate and a few other things. If I had listened to all the people or Google I would have not stopped till I got the spinal test for leukemea. Instead I trusted the doctor I chose, then researched who she sent me too and then who they sent me to. My hematologist happens to be the head of the Cleveland Clinic Cancer Center and previously led the Ireland cancer center of university hospitals. He is respected in his field and it is damn near impossible to find a doctor that will issue a second opinion on his findings when it comes to hematology. My case was actually rare enough Case Western Medical center did a paper on the birth of my second daughter (diagnosed between births). It seems plasma transfusions make me normal for 48hrs and limit any complications from epidural or birth.

Sometimes you need to use your knowledge to chose someone, then let them use their knowledge.

Also factor levels go up and down, and has zero effect on my health....only matters if I had a trauma occur that can cause internal bleeding, so it is in my medical record that if I am ever brought in under emergency or for surgery I need plasma first.

My husband had similar symptoms to the OP's daughter, and was put on a daily high dosage of Vit D after blood tests showed it was very low.

Supplements didn't change his levels after 6 months.

Further tests have found that he has *some* kind of immune disorder (possibly Rheumatoid Arthritis, maybe MS) and what looks like sub-clinical Hashimoto's (ultrasound showed thryroid has been degraded). The Dr's did say that constant low Vit D can be a symptom of a Cancer.

BTW I have no idea if the Vit D levels have come up, it's been 12 months now. He has has started DMARD's for the joint inflammation/pain, although no inflammation showed on his recent MRI, it IS helping a lot. The Dr's still don't know what's making him ill.

Just throwing this info out there... it's a complex issue.

I hope they find answers and a diagnosis for your husband soon!

Thank you :-D I hope you get some answers too!