My dougther that is only 14 years old have PD sympthomes and she is isolating herself and dont care about her friends anymore. She has littel mimic in the face and Loks like restless legg and also the rigth hand is behavor like PD.
Alao she hears voice and sees things that dosnt exsist.
This is the ultimate nigthmare and i am not sleeping for the time .
We have orderd MR and started seeing psykolog.
Is it really possible to get parkinson at the age of 14?
She is also very low in B12 and maby also iron.
She looks like the most unhappy girl in the world and i cannot get intutch with her.
anyone out there with information about how to behave ?
Thanks from norway
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snorre
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There is a simple way to know if she has Wilson's disease and that is by looking into her eyes. If she does not have a Kayser-Fleischer ring she may not have Wilson's (though at her age she should be checked for Wilson's).
I suppose it is not impossible, but I would be surprised if it turned out to be PD. . After a thorough battery of tests, your doctor may discover the symptoms are not the result of one single disease or problem. Both my older children suffered terribly with depression in their teens -- the right meds and group treatment helped enormously, and they are now happy and very productive adults.
I have no business diagnosing, but as a friendly parent, I would say keep communication open, do a lot of talking, reassuring, hugging and comforting. She must be very frightened.
Hang in there, mom. It's awful to see your children suffer.
Her doctor is going for 4 weeks on holiday and a dessision for seeing a neurologist has not been taken yet , so 6 to 8 weeks goes easy.
But she will meet her psychologist in 3 days and also perform a MR scann the same day.
What due you meen by the "pits"?
Her doctor has taken some blood tests and this is the results:
B12 = 140
Ferritin (iron) = 15
D3 = 26
The doctor doesnt understand why she has this values that is far to low and we are awaiting more results from new tests that could say somting about why her "body" dosent get the stuff she need (stomagesystem)
Her mother also have problems with B12 and it came to me to day , maby it is heritable?
Infact , thinking about it she also some times have a small restles leg but at a mutch smaller scale.
Last time we was seeing the doctor my wife and her dougther had restless leg in the waitingroom while me having a diagnose for PD eating medisine 5 times a day was sitting compleatly still without a movment
A severe vitamin B12 deficiency can lead to deep depression, paranoia and delusions, memory loss, incontinence, loss of taste and smell, and more.
Vitamin B12 deficiency can be slow to develop, causing symptoms to appear gradually and intensify over time. It can also come on relatively quickly. Given the array of symptoms it can cause, the condition can be overlooked or confused with something else. Symptoms may include:
Strange sensations, numbness, or tingling in the hands, legs, or feet
Difficulty walking (staggering, balance problems)
Anemia
A swollen, inflamed tongue
Yellowed skin (jaundice)
Difficulty thinking and reasoning (cognitive difficulties), or memory loss
Paranoia or hallucinations
Weakness
Fatigue
While an experienced physician may be able to detect a vitamin B12 deficiency with a good interview and physical exam, a blood test is needed to confirm the condition.
Early detection and treatment is important. “If left untreated, the deficiency can cause severe neurologic problems and blood diseases,” says Dr. Bruce Bistrian, chief of clinical nutrition at Harvard-affiliated Beth Israel Deaconess Medical Center.
Oh -- to say something is "the pits" is another way of saying that something is awful.
A lot of the symptoms fits the situation. As I said before her doctor is on 4 weeks holiday.
I do see how important it is to contact early a neurologist . Are there any particular reason for this and should this person be a specialist on children?
To be honest I am not impressed of my own neurologist so the wrong person for her is fatal.
Her doctor is waiting for more tests and made it clear that he wanted to wait giving her B12 until he knew more what causes the problems and said that he wanted to consult an expert on the hospital.
I suppose that he is thinking that new blood samples maybe must be taken and therefore wants the measured value be the "natural" one.
We are giving her iron and D3 for the moment and I am a little concerned that this might disturb the future blood samples.
But my question is if there is some good reasons to get in touch with a neurologist earlier than 6 to 8 weeks?
This problem with B12 migth be a problem for a lot of older persons with PD and shold be routine to check out . I have never heard about it and I am going to take a test myself.
I think many of us have been frustrated by the long wait to see a neurologist. I think I waited three months to event get an appointment set, then another three until the actual appointment.
What do the rest of you think, is a 6- to 8-week wait risky?
The B12 deficiency may be the cause of your daughter's symptoms.
If you google "B12 deficiency can mimic Parkinsons" you will see that there is a connection both cause and effect with B12 deficiency and neurological symptoms.
Hi Snorre. What a terrible situation to be in. Yes! It is possible that she can have Pd but it is not neccessarily true. What does your neurologist say? Why does she not see her friends? Is she ashamed of what is happening to her? I feel for her very much, she must be living in Hell! The best thing for all of you is to learn more about Pd. You can go to my website - reverseparkinsons.net and see there are lots of things you can do to help yourselves with Pd. Write to me and I will try to help you. You can speak to me via the website.
Yes , it is a hard time. It is early in the prosess so vi dont have contacted a neurologist yet. My consern that she has parkinson is the sympthones i see myself but the coase why she has this "PD" sympthoms i do not understand.
We have started going to psykolog to try to find out why she is hearing and seeing things that do not exist .
The problem is what is the cause and what is the sympthoms?
Myself i have found a connection between to little iron (anemi) (in the reseovars?) and restless legg , depression and panic attach (fair) whitch she all have (sympthoms).But i du not understand how this "hearing and seeing" things that dont exist fit in.
This is frigthing her very mutch and the expert on this (psykolog in norwegian ) have not found out what this is yet.
Her doctor has taken some blood tests and this is the results:
B12 = 140
Ferritin (iron) = 15
D3 = 26
The doctor doesnt understand why she has this values that is far to low and we are awaiting more results.
Also we have orderd MR scann.
She looks very tired , unhappy and saying she wants to die. That is not what you want to hear from your child.
The familie is on our cottage no and on the way i observed her (in the car) and she has more (PD) sympthoms that i have and she is terrible sick but she is ekstreemly aweare of her sympthoms and if i turn my head to lock at her she stopp the "restless legg and heands problems" imidietley.
Also , thank you so mutch to all of you that has been so kind to answer me.
Your daughter has quite marked vitamin b12 deficiency, and her Neurological symptoms are almost certainly caused by this. She needs vitamin b12 injections, and please do not wait a month or more until her neurologist comes back from holiday, as the damage being done to the myelin around her nerves can become irreversible if left untreated for too long. Oral b12 is not sufficient to treat this, only b12 injections will reverse neurological symptoms.
I'm very glad to hear your daughter is going to be getting some treatment snore. But, actually, your daughter should have loading doses of 6 injections over a two week period, and if her neurological symptoms are still persisting, these injections should be continued alternate day, until no further improvement is seen, which could be several weeks or more. After that, injections at a minimum of every 2 months. B12 blood levels after injections have started should definitely not be used to decide whether further treatment is required as they are likely to be above the bottom of the normal range anyway. It's symptoms that matter.
Another important thing to consider is her folate level? B12 and folate work 'hand in hand', so she won't get much benefit from her b12 injections if folate is very low. This may need to be supplemented as well. Similarly her ferritin is on the low side, and may drop further after starting injections, as iron stores are used up in the making of new red blood cells amongst other things. So a gentle iron supplement would be a good idea.
Side effects to watch out for are the jabs causing low potassium, which in turn makes you feel very fatigued, aches and pains, trembly, palpitations etc, so try and get her to eat as much high potassium containing food as possible on injection days.
I recommend joining one of the b12 deficiency Facebook support groups, where you can get all the information you need from fellow sufferer, as there is so much to learn about all of this, and the majority of doctors don't have a clue! I belong to 'New Beginnings B12 deficiency support group' which is excellent, and there are a few others.
B12d most definitely runs in families. That's a great video isn't it. It should be compulsory viewing for all Drs ! I can't understand why they seem to have such a problem prescribing a harmless non toxic vitamin, when they are more than happy to stuff their patients to the gills with antipsychotics, antidepressants, pain killers etc etc to try to mask the deficiency symptoms instead!
Most definitely fight on to get optimal treatment for your daughter. I had to source my own b12 and my daughter learnt to self inject ( despite her phobia of needles), but is now well, and is leading a healthy active life, with a b12 jab every few weeks when she feels she needs it, not when dictated to by some doctor who has no idea what she needs to keep well.
I'm not sure what part of the world you are in. In Europe it can be ordered over Internet from online pharmacies such as goldpharma.com and arnika-apo.de without prescription, and can be purchased over the counter in countries such as Germany.
In US it is available from compounding pharmacies, but I think you may need a prescription even if it's only from a naturopathic dr . I think in Canada it can be bought over the counter, but I'm not 100% sure about that.
I just read the B12 article by using the url paddyfields put into her reply to you. It was very interesting. I do think diet is pretty important. If I were you I would print it and take it with me to the neurologist when you go for your appointment. I think I would also give a copy to your daughter to read. She must be frightened herself. I'll post paddyfields url again: pharmacytimes.com/publicati...
Please remember that b vitamins should NOT be taken without taking the entire complex. Even with a known b12 deficiency one must take ALL of the complex....not in the exact same amounts as the b12 but a full spectrum B complex. Also remember that b vitamins are water soluable and not held in the body. Every time one pees or sweats, they wash out. This means there is no danger of any kind of buildup...you might just take more than you need but the extra will go down the toilet. They do need to be replenished during the day.
hallucinations may well be a tipoff. In view of the hallucinations I recommend that you read my posts on our experience with hallucinations and the use of high dose niacin (another b vitamin). NOT niacinamide. Niacin. Terrible hallucinations for six months ended overnight using Abram Hoffners recommendations for using high dose niacin. Suggest you google it and give it too your dr. If you don't feel you can do it alone. Niacin is fairly safe...one will get a flush feeling like a sunburn from the opening of capillaries but that passes and isn't serious. With continued use your dr will monitor liver function to make sure that stays on target. My husband used Hoffners protocol and took 3000 mg per day. Stunning and almost immediate results.
I believe in always getting a spectracell test to see what nutrients are in the cells. That way one knows what they are short of and what they have too much of. We have used the tests several times over the years and they were spot on. Otherwise your dr just has to use an educated guess which may be right but maybe not and not very complete considering the number of vitamin/minerals involved. Don proved to be low in magnesium, b vitamins, vitamin D and a bunch of other things which we were able to supplement successfully.
B vitamins. There are lots. But they are all a part of a group (a complex). Usually when b vitamins appear in food, they appear together (in the group or complex). That is one reason it is believed that when one takes any b vitamin, one should also take the entire complex as well. That's the way they appear in nature. Another reason one takes the whole complex is that some studies show that taking just one part of the complex can cause deficiencies in other b vitamins. You may need a lot of a particular b vitamin (like b12) but you should take the whole complex along with it.
I doubt that a psychologist will know why your daughter has hallucinations. If you google, please google Abrams Hoffner and niacin. Print it out and take it with you along with the information that you have been in touch with a person who had the problem and solved it with niacin.
What does your daughter see and hear? My husband always started with a dog in the room or a person disappearing around the corner. This is common with people who hallucinate.
Am I right in thinking that English is not your first language? Is that is true, I will try to write in a different way to make it easier for you to understand.
If I were you, I would just buy a high dose b complex and give it several times a day to see if there is any change. If she doesn't use it up, she will just urinate it out. I would do the same with vitamin C. I don't see any down side to that.
It also sounds like you are in the UK with rationed health care.
I dont know what my daughter is seeing , nigther does the psychologist , yet. We are working with it but the latest feedback from the psychologist was that it was skearing. Some years ago she asked me if I was able to see the sad little girl sitting on her bed. This happend only once and was forgotten. My dougther was not afraid , she was only wandering if I was able to see her.
I live in norway on the west coast
I will discuss with her doctor trying high dose off b complex ( can you tell me manufaktor or where to buy it?)
How does it work in your case and how often must it be taken (B3)? How long time before it works 100%
you are doing the right thing by having her evaluated medically. I can honestly say I have not heard about anyone that young displaying symptoms. The teen years are very difficult and she may be having anxiety regarding your PD. She may be exhibiting her anxiety by mimicking some of your symptoms. Please keep us informed on her progress.
My son would sit at our dinner table and start shaking like me. I felt that he wanted some sympathy too. I didn't buy it . I gave him a light shot in the arm and asked if he was making fun of me ? He didn't try it again.
It's tough on a kid when there is an illness in the family. My son developed a mild schizoaffective disorder in his teen years and I had to at least try to make sure my two daughters got the attention they deserved. It was not easy!
Wife of parky is right. It's important to take into consideration that anxiety is a sort of drug itself. It can impact a person's biochemistry powerfully.
Looking specifically at B12 deficiency, I am of two minds. Either your daughter was a vegetarian or she has a problem with the lack of intrinsic factor in her stomach.
Sources of B12: "Vitamin B12 is naturally found in animal products, including fish, meat, poultry, eggs, milk, and milk products. Vitamin B12 is generally not present in plant foods, but fortified breakfast cereals are a readily available source of vitamin B12 with high bioavailability for vegetarians."
If she was not a staunch vegetarian (who does not take B12 supplements) then I think she may have difficulty absorbing B12 from meat, milk, poultry.....because she lacks intrinsic factor in her stomach.
intrinsic factor
nounBIOCHEMISTRY
"a substance secreted by the stomach that enables the body to absorb vitamin B12. It is a glycoprotein."
So she needs to be tested to see if her intrinsic factor levels are normal and if you want an alternative to B12 injections you can purchase B12 with intrinsic factor:
"Iron is needed to produce dopamine which is the chief neurotransmitter for regulating the coordination of fine motor function such as limb movements. Since vitamin B12 is closely linked to iron levels in the body, the vitamin deficiency is often seen along with iron deficiency."
More or less the definition on PD.
I am observing her and the restless leg problem is not effected by the B12 inj , yet.
I doe not expect that I will get rid of this problem with so low dose we are using now and I have to work with this problem more.
I hope this will stop her psychological problem also and have to admit that I am worried about the possibility that permanent damage may have been established to her brain.
I am wondering about the possibility that there is a lot of people out there with wrong diagnosis on PD.
We are waiting for a meeting with our doctor after holiday.
I am wandering if you have any idea about the following question or anybody else ?
B12 =138
ferritin=15
D3=26
This was the start.
Now she had 3 injections with B12 in 3 weeks and we are told to weith for 3 mounts and due a new test.
Questions:
1) I think that she has got very limited (few injections) treatment with B12 so fare .
Is this treatment sufficient ore is it too little ?
2) We don't know the values now but we are very concerned about the possibility that she might go back to the situation that she was in before we started the injections with B12.
After 3 inj with B12 in 3 weeks (3 inj totally ) , how long will there be sufficient B12 in the body ?
Will there be enough to keep her safe for 3 mounts?
Going back into the situation before starting with B12 inj now when she have started on school would be a nightmare and also we don't know her readings at the time and we might still be within the area where permanent damage might happen on the brain.
Anny suggestions how to proceed ?
3) How due I get in touch with qualified medical staff in the area (B12 etc) ?
B12 is stored in the liver and for a deficiency to occur, it takes about 5 years to deplete B12 from the liver. This assumes that the liver B12 stores were actually at normal levels to begin with.
Doctors need to test for methylmalonic, homocysteine and intrinsic factor levels. They need to check for inadequate stomach acid levels and Atrophic Gastritis caused by H. pylori, a stomach bacteria known to worsen Parkinson's disease symptoms (because it interferes with levodopa absorption).
And finally, doctors need to test to MTHFR gene mutations:
"Here we report three patients with MTHFR mutations and vitamin B12 deficiency presenting with hemolytic anemia and severely elevated homocysteine levels."
"High Hcy can in part reflect nutritional deficiencies involved in the methylation pathway, being B12, folate and B6. Genetic polymorphisms involved in folate metabolism (such as MTHFR C677T & A1298C) have be found to be generally increased in patients with Parkinson’s Disease, as well as reduced concentrations of B vitamins. Increased levels of Hcy in Parkinson’s disease could potentially lead to dementia, depression and progression of the disease."
"Three recent randomized controlled trials and a well designed case series compared oral and intramuscular (IM) VB12 in patients with VB12 deficiency from various causes, including dietary restriction, pernicious anemia, or malabsorption secondary to gastrointestinal disease or resection.
"
"The randomized controlled trials, although relatively short in duration (all fewer than 4 months) and of small sample size (N = 158), demonstrated that oral VB12 was as effective as IM therapy in improving VB12 levels and associated biochemical markers (total homocysteine and serum methylmalonic acid), anemia, and neurologic symptoms."
So oral administration of B12 can be just as effective as intramuscular injections - with conditions added: The person has no HP infection, the person has proper levels of intrinsic factor and stomach acid.
++++++++++++++++++
If I were you I would put your daughter on a daily sublingual supplement of methylcobalamin and folate. If they are not available together in the same lozenge then take them separately. Taking B12 in a sublingual form by passes the stomach and is absorbed in the mouth (under the tongue). It is important to not swallow the sublingual lozenge and it should not be chewed up either. It has to dissolve slowly in the mouth.
I have taken 2.5 -5.0 mg of methylcobalamin every day (for years) and doses of as much as 50-60 mg week were given to ALS and Bell's palsy patients with no side effects. So, depending on here response to the 2.5 mg dose, it can be raised or lowered accordingly.
Ultra-high dose methylcobalamin (E0302) prolongs survival of ALS: Report of 7 years’ randomised double-blind, phase 3 clinical trial
"Patients were randomly assigned to receive placebo, 25mg, or 50mg methylcobalamin i.m. twice weekly for 182weeks."
Additionally, doctors inject cyanocobalamin into patients and it is the worst form of B12 to use. It has to be converted into the active form of B12/methylcobalamin.
I am glad I could answer your question but I will not be participating on this site for a month or so because I have a pile of work to take care of.
As a PS I will describe my reaction to first taking 5mg of methylcobalamin. I instantly felt energized within 15 seconds of placing the sublingual wafer under my tongue. I felt unnaturally energized and my energy levels soared for 4 days until they plateaued at a higher level than they were previously. Do not be surprised if your daughter has an immediate energy spike - this is not dangerous, but a sign of deficiency. Several other people who tried methylcobalamin, including my sister and a close friend, had a similar reaction.
Normally, a 1mg dose of B12 is considered a maintenance level dose but with a deficiency state a larger dose (2.5mg) is required, in my opinion.
Yes I am off to do other work and will eventually return here.
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