Need help as mental health failing my son

Can any 1 help me see the rite people to help my som, Nathan age 22 has PA and obvious nerve damage, has just spent 2 month in a secure mental unit, mental heath declined since march 6th with very little community care, currently in police station for a plce of safety as he is suicidle, just had a call from cpn to say he,s remorsful and ok to come home, current meds are depakote (mood stabilizer) 500mg phenergan 25mg morning evening 750mg depakote 25mg phenergan, B12 ev 3 month from gp, was injecting him myself but was told not to by hospital, had problems since birth, really feels like his life is not living anymore, severe outbursts of aggression ev day, legs seizing up, contsant back pain, iv told them they not looking at underlying problem and I'm about to speak to local media, can martin hooper help me, iv read his book and ev thing in there is like reading about Nathan, feel like I'm going round in circles and nothing or no 1 is addressing the real problen wihich is lack of b12 degenaration of the spinal chord, have fought for 14 year what's wrong with these people! I'm willing to take nathan anywhere if any 1 can help him

17 Replies

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  • There is a telephone helpline on the main site if you are a member? Looks like if you are not they need you to join pernicious-anaemia-society.... Martyn seems to be on their forum but I am not sure.

    Sorry I cannot help you properly, I really wish that I could :(

    God bless

    Dawnx

  • Try ordering the B12 sublingual spray from Dr.Mercola at Mercola.com. One pump contains six sprays per day of methylcobalamin that will last for 30 days. Worth the US$10.00 international shipping fee.

    Good luck to you and Nathan.

  • Phone the PAS helpline. Leave a message if answer phone. I did this and Martyn called me back the next morning. He can put you in touch with people that can help and advise. Xxxx

  • hotcherry: So sorry that you've not found anything to help your son. My heart goes out to you.

    I can totally relate-- my son ended up in the hospital with difficulty walking-- doctors had trouble diagnosing. Peripheral neuropathy (nerve damage to legs) got progressively worse, and he landed in a wheelchair. We had to build a wheelchair ramp for him to get into the house. They also diagnosed SCD, but couldn't identify the underlying cause. He also had severe depression, that various anti-depressants didn't seem to help much.

    After reading "Could it be B12?" (read this if you haven't) and rereading the lab results from the hospital that showed indications of B12 deficiency (high MCV), we started him on 5,000 mcg Methyl B-12 sublingual daily (Jarrows), which seemed to help both his legs and his mood. After reading studies about the effectiveness of injectable Methyl B-12 on both nerve regeneration and combating depression, we ordered some and he started daily injections of 1,500 mcg instead of the sublingual. We also started him on 800 mg of over the counter SAM-e to help with depression and mood.

    The improvement in his depression & mood and energy was almost immediate. Within a few days, he was much improved. Within a couple weeks, he said he had increased feeling and control over his legs. Over the course of about 6 months, he progressed from wheelchair, to walker, to cane. Now, about 12 months after his hospital visit, he walks without cane, and with just a slight limp. His mood and energy is generally good. He says he can feel the mood benefit of the B-12 within hours of injecting it.

    I'm convinced that B-12 deficiency was at the root of both his peripheral neuropathy and his depression.

    So-- my (not a doctor, just a dad) advice: take charge of your son't health. If you believe that a B-12 deficiency is the root of the problem, don't wait for the government doctors to get on the ball:

    1. Get him on Jarrow's 5,000 Methylcobalamin right away:

    amazon.com/Jarrow-Formulas-...

    It's cheap, easy, there's no toxicity level. Read the reviews of those with similar symptoms who have tried it and had good results. Might help, won't hurt. Try two a day.

    2. You'll probably also want to have him take a B complex supplement with Folate, since the B-12 works with Folate and some of the other B vitamins to do its work. Also cheap and widely available.

    3. Order up some SAM-e:

    amazon.com/Nature-Made-SAM-...

    Again, read the reviews. Widely

    4. If you see some improvement with these, and want to try something a bit more aggressive, order the injectable methylcobalamin. Here's where we order ours:

    trimnutrition.com/methylcob...

    Not cheap, and I don't know whether they sell outside the US. But if it helps your boy, it will be worth every penny. The kit is enough for about a month's worth of daily injections. That should be plenty to see whether it's helping, or not. Kit includes needles.

    It's important to get the methylcobalamin (Methyl B-12, or Mecobalamin in some countries), and not the more common and cheaper cyanocobalamin. Methyl B-12 is already in the form your body needs to protect the nerves, and to repair the nerve damage that results from B-12 deficiency.

    Finally-- don't take him off the other doctor-prescribed meds while trying these things.

    Stay with it, and good luck to you. Please post back and let us know how it's going.

  • Hi you can call the PAS office on 01656 769717. Martyn is thee in the mornings. Your story is heart wrenching and PAS exists to help people like Nathan. The guy on her with advice on methyl cobalamin is absolutely correct and you need to get Nathan injecting if you can. One injection every 3 months is nowhere near enough for most of us and Martyn will be able to give you advice on requesting more from your gp. Good luck.

  • Apart from all the advice you have been given re B12 . You may like to look at this page below .

    hypothyroidmom.com/mental-d...

    Hypothyroidism also causes mental health issues & is strongly linked to B12 deficiency / or PA ....

    Beware through as Gp will no doubt say thyroid is normal . Get results & check online on thyroid

  • yes gp saying normal, but studied them myself and rang thyroid uk, they said hyper and he was at a 100 mile a hour, now under and gained 4 stone since depakote, but bloods are fine, i no they not

  • thank you all so much for your replys it means so much to me, im at my wits end now and nathan is on self destruct now because no one as ever helped him in the past he thinks no one ever will. i bought subligual jarrow 1000 and folic acid, but hospital wont give him them, not happy at all, iv also bought the books and thanks for the reply, Nathan is currently sectioned again because of his outbursts, iv tried to convince hospital today of the underlying problem thats causing nathans behaviour, have rang Martin and left a message also rang st thomas hospital, im desparate to help my son as its getting him in bother with police as mental health team advise me to ring them then they charging him, if i wrote a book no one would believe it, im so thankfull i have the people on these sites for advice, but nathan is such hard work i dont have the time to keep answering everyone. i also bought could it be b12, its like reading about nathan. He is also in constant pain with his lower back and his legs give in and he sometimes wakes up screaming with cramp, im thinking of ringing my local media to get my piont accross, when speaking to staff were nathan is detained at the minute, he was quite interested in what i was saying and did say he would relay info to consultant what i told him, they are saying now that Nathan has a mild learning disability and probably could do with anger managment! so why after 14 year of treating him with antipsycotics have they changed ther mind and what damge have these drugs done? some of them being what people in america have claimed compensation from company that made them..... i asked for gp refarel to Dr Chandy the reply was that he,d never heard of him. shocking and disgusting i no, im tierd as its a constant battle with Nathan at the moment. id give up everything i have to help him now.

    thanks everyone again my business no is 07777689202 id be grateful of any calls or texts of informatin or sources that can help

    lisa x

  • this is what i bought they wont let me give him them in hospital i tried twice i have i bought methyl b-12 1000mcg and folic acid 800mcg and the injection b12 depot-rotexmedica i will order the 5000 ones now

  • It is possible to get a finger prick version of The Active B12 test - In which case you could just buy take it in & test him yourself & post off . Thats if he would let you ... To Hell with the staff ... I will see if I can find the link .

  • just been looking at them, no were near sells them ill have to order them, just having the battle with gp

  • thyroiduk.org.uk/tuk/testin...

    Look at the bottom right hand corner of the page for finger prick Active B12 test .

    However if you can get the staff at wherever son currently is to draw blood then take it( a vial of blood ) to St Thomas's yourself & they will also test for Homocysteine And MMA which are also a good measure of B12 ... which doctors don't generally do ...

  • gsts.com/new-tests.html St Thomas's link

  • just spoken to Martin Hooper (thank you) now on phone to hospital where Nathan is detained to convince them to give nathan a theraputic trial of B12, WISH ME LUCK I THINK IM GOING TO NEED IT. X

  • Update?

  • hot cherry i am so sorry for you, i have just seen on th e thyroid site a lady has posted an article in the daily mail.. this new organistaion by doctors who will give you a second opinion when you are stuffed ! if you go on the thyroid uk site an dlook at the blogs i cant remeber the heading now but i have jotted down the info. hdapatientcaretrust.com

    email admin@hdapatientcaretrust.com

    address HDA patientcare trust

    12 upper wimpole street

    london w1g 6lw

    020 79358 366.... but read the article first and make up your own mind. when i go back to the site i will note the blog title.

  • dailymail.co.uk/health/arti...

    hi hotcherry i hope you can pick up this link....

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