DM making me feel guilty

(39 Posts)
bellbottomedtear Sat 14-May-16 20:04:44

if your child was diagnosed with ME and someone offered to pay to see a "specialist" who without testing would talk to you and child then give them things like vitamins to take that may make the child "better" would you? this person is an osteopath and dietetics and although has a website and lots on youtube but I'm unsure. how can someone give vitamins and things like that if they don't know what the child is lacking? I'm not happy with just giving random stuff but feel guilty when DM says she would do anything if child was hers she also keeps saying that hospital might have it wrong. I know they don't and don't need to hear that we have come to terms with it and finding ways to help and support our child. wwyd? and aibu in saying no to seeing this supposed specialist? or should I be giving everything a go? I have researched all sorts and looked into everything over the last 3 months to make sure I know and understand what is going on with my child but now feel guilty for saying no to something I don't feel comfortable with.
Not sure this make sense but if you have got this far thanks

AgathaMystery Sat 14-May-16 20:06:34

Basically your mum has offered to pay for snake oil a homeopath/ herbalist?

bellbottomedtear Sat 14-May-16 20:16:48

yes and because I'm not keen on it I'm in the wrong and not doing everything in my power to help improve her ME. She went as far as telling DD 10 1/2 years old this man would make her better which isn't fair as we don't know if that will happen. I'm guessing you wouldn't take your child either?

Chlorella Sat 14-May-16 20:21:56

I share your pain. My dm is like this. She is anti vax, pro homeo-crap, you name it. She kept banging on about the vaccines until I snapped and told her how selfish she was being. My 2 are older now so I don't hear too much more about it.

Sorry, no practical use whatsoever, just wanted to sympathise!

bellbottomedtear Sat 14-May-16 20:27:10

Thank you she has never been like this and normally but since finding out DD has ME she has read so much crap, its driving me mad. Before it would be all about what hospitals would say was right never into homeo stuff

claraschu Sat 14-May-16 20:27:24

My daughter had ME, and we went to a private doctor who specialises in Chronic Fatigue. She did a whole battery of blood and stool tests, prescribed a very specific regimen of minerals and supplements (no snake oil or homeopathy), and our daughter is now fine. Her recovery took about 3 months to be noticeable and 5 months to be complete. If you are interested I can PM you the details of our story.

Our doctor (fully qualified doctor, with lots of additional qualifications) was very careful, very analytical, very good with my daughter, and certainly inspired confidence.

claraschu Sat 14-May-16 20:30:43

The NHS doctors were useless. We saw 8 of them, including two consultants, and they were not able to offer any advice that wasn't damaging (like suggesting my daughter had an eating disorder, which was patently absurd, or that she should do graded exercise, which, even in the tiniest increments would wipe her out for days).

bellbottomedtear Sat 14-May-16 20:33:16

See if he did tests like that I would feel more reassured I have heard of a clinic in hemel Hempstead called breakspear which I will start saving for as DM wont pay for that we are going to great Ormond street too so will see what blood tests etc I can get them to do

bellbottomedtear Sat 14-May-16 20:35:09

so far other then 1 junior doctor we have been fairly lucky with our gps and the consultant we have seen so far and referred us to gosh.

claraschu Sat 14-May-16 20:40:03

Our doctor was excellent, and her tests were very detailed and specific. It was expensive, but so worth it.

Mumoftwoyoungkids Sat 14-May-16 20:42:36

If it was homeopathy (that's the one where it is water that has been bashed against a book right?) then I wouldn't care either way. It's water so it is total bollocks but it's not going to do any harm. And the placebo effect can be very strong.

I'd be more worried about chugging her full of vitamins - unless the vitamins are no more than a normal daily multivitamin - then I'd not care.

Petal40 Sat 14-May-16 20:53:10

Follow yr gut instinct .....it's never wrong xxx

AliceInUnderpants Sat 14-May-16 21:14:16

If your mother has read so much about ME, then she will know there is no "cure" for the condition. Various vitamins and supplements are thought to help with the symptoms, but that information is available without having to pay someone to tell you it.

Booboostwo Sat 14-May-16 21:25:10

If my child had a condition with no treatment and no clear understanding of its causes I would certainly want to educate myself as much as possible about it and consider all reasonable options. By reasonably options I mean qualified specialists who have a science based approach and a professional reputation. I do not mean quacks that dispense expensive magical water. The problem with going along with such rubbish is that it gives your DD false hope and may she may be greatly disappointed when the miracle cure fails to work which might set back her emotional coping with her condition; it promotes unscientific thinking; and it's a waste of money. So no I would ask your DM to focus her efforts to help in a more fruitful direction. I imagine she is worried about your DD and feels helpless.

Greysmanicfan41 Sat 14-May-16 21:40:39

I have had ME/CFS new name since i was 21 and got it after having Hospitalization
for glandular fever, ive never been right since. and NHs consultants have all tried to help me, there all sorts of possibilties that cause this illness, ive looked into lightening process, CBT,GET,Immunology(my results are slightly higher than normal showing i am constantly fighting a infection, we try presidonole steroids for 6months at 10mg, i just got fat, put 2/3 stones and chronic headache.

So i am looking even if it private and have to pay for it, any suggestions on doctors would be muchly appreciated, i have lost 20 years so far, after pushing my gp a tad too far i was refer to royal free and found out IGM levels are constantly increased, meaning i am fighting constant infection.

I do feel for anyone with a label of ME/CFS

mummyto2monkeys Sat 14-May-16 21:44:43

As a severe sufferer of M.E (very severe for last four years and moderately so for nine years previous). Alice is right, there is no cure, there are remissions and the younger the sufferer the higher the chance of recovery. However only 4% of those severely affected will ever recover.

This is a condition that there is so much stigma around. I have had neurologists tell me they were 99% sure I had M.S. Only to change their mind upon the arrival of results. They changed their diagnosis to functional symptoms which suggests it is all in my head. I asked to be referred to a psychiatrist and psychologist. And after seeing a psychiatrist, a psychologist and a neuropsychologist all three disagreed with neurologist and said it was a physical illness that needed further investigation.

I would look into the Doctor that Clara mentioned. There are vitamins that can be helpful, it is definitely worth looking into. But there is no way I would pump my child full of medicine that hasn't been prescribed by a paediatricion/ m.e specialist.

Well done for refusing GET which can potentially so dangerous.

Janecc Sat 14-May-16 21:46:44

I have ME and I am seeing both a medical doctor specialising in chronic fatigue and a toxicologist, who prepares a lot of her own treatments. Out of the two, it is the toxicologist, who uses alternative therapies, who has helped me the most. The reason behind this is that my body is just too sensitive for the stuff prescribed by the medical doctor. The toxicologist has made my life worth living again and has also helped my body get to the point of accepting some of the medical doctors medication. In your place, I would seek the private medical specialist first as they are most likely going to have much better results than the medical doctor has with me. Old bones are a lot more complex than young ones and young bones respond a lot better to stronger treatments. I cannot see how homeopathy, if this is what your mother is talking about can "cure" ME, as the system is too out of sync by this stage to be rebalanced by homeopathy. Besides no one I have seen has ever promised me a cure.
I would be very wary of what is offered by the nhs. Usually you can get graded exercise, which sounds atrocious and CBT. Pacing isn't often offered but is very useful for CFS - I got it on the pain management programme. So please don't think there is much help for you out there under the nasty unless your DD is diagnosed with an unrlying condition, which could be contributing to the fatigue. They may prescribe her antidepressants to help with the emotional side of losing her mobility and coping with her illness. Antidepressants helped me when I was very very ill.

Janecc Sat 14-May-16 21:50:20

"Under the nasty" bloody autocorrect: under the NHS

MsHighwater Sat 14-May-16 21:53:58

In your shoes, I might be tempted to point out to my DM that, if she believes in doing "anything" and is willing to help pay, she should not have any issue with helping you to pay for the clinic you've heard about and are actually interested in going to and that doing that would be more constructive than laying a guilt trip on you.

bellbottomedtear Sat 14-May-16 22:56:35

Thank you everyone I know there is no cure for this and have read a lot on pacing which is what we are currently doing with her as well as a multi vitamin I brought from the chemist. We have tweaked her diet too but doing that slowly to see if it has any effect. I feel less guilty knowing that me and dh aren't the only ones who wouldn't put their child through this. Janecc we have had results back saying that she has at some point had EBV which I believe is glandular fever- frustrating as when she first got ill last Nov was told it was viral despite being backwards and forwards to gp and hospitals

dillydotty Sat 14-May-16 23:04:26

Osteopathy is based on fact, manipulating the body. Vitamins curing ME is crap, otherwise doctors would prescribe them. Are you sure they are a qualified osteopath?

bellbottomedtear Sat 14-May-16 23:14:21

All I have is his website which says where he trained and when plus DM going on about how someone she knows knows someone who was really bad but is now fine after seeing him- this still doesn't fill me with joy or hope. My DD is going through enough without him filling her with crap and the idea he will make her better.

Janecc Sun 15-May-16 07:30:47

So she's got post viral fatigue, which has led to ME. This is very early days and I'm surprised she's been diagnosed so quickly and is very different from my experience. As I said, age is on her side. And everyone responds differently to different treatments. I'm not trying to give you hope. I'm relaying information I've received from the various people I see.

Firstly, is your mother prepared to pay for all the osteopath treatments? If she is, I'd have a think about the osteopath. Is this a osteopath, who does cranial osteopathy? I have Bowen therapy, which is similar, that is to say, it has a similar effect on the body. It helps my body to relax and also helps with my pain as I also have chronic pain. My body struggles to relax and sleep well and deeply, Bowen therapy helps with this. If the osteopath is offering non invasive physical treatment, I would take your mother up on that offer.

ME/CFS people often can't metabolise the vitamins we can buy from the shops. They use less pure ingredients and some, which make the body work hard to process into the active form as they are synthetic. Many people with ME simply can't transform them into the active ingredient and the vitamins will simply be pe'ed out and not processed. They are also often packed with fillers, which have no nutritional value. The only things I found worked for me that you can buy in the chemist was Floradix, the gluten free one is best as many ME people have a gluten intolerance - I think you may be able to get that one at Holland and Barrett but it's much cheaper online - I used to get it from Amazon. I don't use Floradix at the moment and use online retailers selling epigenetics and Nutri vitamins and supplements. If you google these, you will see the price difference as they are very high quality. Some supplements are the same whatever the price, such as D-Ribose but I expect you are probably wasting your money with the vitamins from the chemist.

I know I said you probably won't get far with the NHS but actually, there are a couple of thing I would try and get from the NHS. Firstly a blood test to determine her nutrient levels in particular B12 as you can get injections on the NHS for this if her levels are low. B12 is a very common deficiency in ME. The iron test may come back as OK as I think they will only test serum ferritin, which isn't a great indicator and doesn't necessarily mean she's not iron deficient. Also she is likely Zinc deficient - going into puberty many children are and they could also check for this. There is also something from the NHS, but it's still in the trial stage I didn't take that much notice as it only works if you've had ME less than 2 years - someone on Mumsnet is bound to know about it.

As I said, I see a trained toxicologist offering specialised detox therapy and she has helped me loads. She has been very honest and told me that I have a low grade infection, which she cannot get rid of and I need medical intervention. I still continue to see her because her treatments are a fundamental part of the process. I'm wondering if I was a bit quick to dismiss the osteopath as he may perhaps be a bit helpful while you save up to see a medical doctor. At the very least he can give you a bit of an insight into nutrition and vitamin supplements and as long as your mother is paying for this, it may be the first piece of the puzzle as you wait to have enough money to pay the thousands you will need for the medical doctor.

If you google the Breakspear clinic, you will also see blogs dissing the clinic as a hoax because one person's experience is very different from another's. So you will always find someone, who will say this osteopath is a wizard and others, who say he's a quack - the same as the Breakspear clinic. For example, if it's going to take you a year to have enough money, you've wasted a year where your daughter may detriorate of becomes bedridden. Besides, something the Brakespear clinic prescribes may not even work because as I said, our bodies all respond differently. I spent 5.5k plus travel and expenses and hotels on something, which didn't help me with the medical doctor because I originally couldn't take the medicine he wanted to give me. With the help of the toxicologist, I can take the medicine he originally prescribed, which costs 2k for just under 90 days.

If my mother offered to pay for anything, even if it wasn't the exact right thing, I'd be careful at what I took from the practitioner but I'd bite her arm off as treatments are very very expensive.

bellbottomedtear Sun 15-May-16 08:27:53

Funny you mention epigenetics as that is this guys website. So an osteopathy might help? I am so confused with everything me and dh want the best for dd and want to get her back to what will be normal for her now. Thanks janecc

AliceInUnderpants Sun 15-May-16 12:20:22

Janecc You mention Floradix, and I've heard this spoken about before. I take Feroglobin (amongst a few others). I'm not too sure if it's 'helping' per se, but too scared to stop taking it. Is there any reason I would be better trying the Floradix?

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