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Have consultation with Dr. Nigel Speight

Discussion in 'ME/CFS Doctors' started by JoanDublin, Mar 13, 2014.

  1. JoanDublin

    JoanDublin Senior Member

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    Hi Folks. Been a while since I've been on. Those who might remember me will know that my 14 year old has been diagnosed with Post Viral Illness since the end of 2012. Along with all the 'usual' symptoms he has suffered with intractable constipation which still hasn't resolved (despite two short periods of remission during the past 18 months in which his ME type symptoms started to improve and suddenly his bowels kicked back in as if nothing had ever happened! - short lived however). My son has just come out this week from another hospital stay for treatment for this constipation.

    Anyway, the reason for this thread is just to shout out that I have managed to secure a consultation with Dr. Nigel Speight here in Dublin next month! Yay!! Go me!!! Can't believe how lucky I am to be bringing him to someone who 'gets' this illness. The consultation is an advisory one and I am hoping it will provide some insights into my young lad's particular symptoms. I'm hoping Dr. Speight will have had a patient with similar severe bowel issues due to their illness and can advise me and his doctors here about it.

    Just thought I'd share this bit of good news. Hope you are all doing as well as you possibly can

    Take care
    Joan
  2. justy

    justy Senior Member

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    Hi Joan, yes I remember you and your son very clearly - funny I cant remember how to spell or where I put anything though!

    So glad you have an apt to see Dr Speight - I do hope he has something useful to say. Intractable constipation must be absolutely miserable, especially sad to hear of a young lad suffering like this. I have a son of nearly 14 so I know what it's like to be a mother of a healthy lad. My eldest daughter was ill with possible M.E from 15 to about 20 and I had to look after her when she was bedbound, so I do understand how tough it is. She had the opposite bowel problms and constant severe stomach pain and bowel bleeding and yet we never got any satisfactory help. It is so hard to see our children suffer.

    I notice too that when my M.E improves generally there can be a dramatic improvement in certain miserable symptoms, but then they often seem to come back.

    I hope the hospital treat him well and with empathy when he is there. Let us know how his appointment goes.

    All the best,
    Justy.
  3. JoanDublin

    JoanDublin Senior Member

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    Thanks Justy :)
    Very sorry to hear how your daughter suffered for so long. How is she now? He has constant stomach cramps and a very, very tender and swollen abdomen. His colon area is always sore too as is his back passage, poor kid. He does his own home enemas and now and then, if he can bear the pain, he uses his Peristeen anal irrigation unit. But he is not able to ever fully clear himself out and as a result he ends up being admitted every few months for phosphate and olive oil enema treatment.

    I get really frustrated when we go into the hospital and some snotty nosed junior doctor comes around and says he needs to change his diet, or exercise or whatever other bloody nugget of amazing advice they like to give...as if we haven't tried absolutely EVERYTHING!!

    Thanks again for the reply and I will post about how the appointment goes.

    Joan
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  4. justy

    justy Senior Member

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    Yes - don't you the that when you are talked down to as if you don't know more about it than them - drives me mad. My daughter is much better and has been able to move out of home and works in a pub. Still has some bowel issues, and stamina problems as well as recurring tonsillitis which can put her back into bedbound for a week or so at a time. The rest of the time she is pretty good and can go out dancing and even drink these days.

    I do worry though as I had a similar thing happen in my mid twenties 9when she was a baby) I was ill for a few years and then just recovered without doing anything in particular - although I was never 100% I lived pretty good and normal life until 2008 when I caught measles from the children. This time around I have not recovered and remain much more ill than the initial 'bout' of M.E. I know realise I still had M.E in the intervening years but was only mildly affected.

    I feel for your poor son - how miserable. Does he manage to have any friends or to do schoolwork at all? my daughter missed her last year of school so unfortunately her plans of going to uni never materialised. She tried A levels at age 17- 19 but she was too ill to really cope and didn't get good results.

    Once again, sending my best wishes your way.
    Justy.
  5. JoanDublin

    JoanDublin Senior Member

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    He hasn't been in school since around the end of January but even before that it was hit and miss here and there for a few hours sometimes. More times than not I forced him to go to school and they would phone me to say he was very unwell and needed to come home :( feel guilty about that. He has effectively missed the first year of secondary school and now it looks like he will miss most of the second year too.

    I can understand your worry about your daughter and yet all you can do is watch and wait and hope, isn't it?

    I'm sorry to hear about your own journey with this damn illness too. He seems to be sort of similar in that when he did get a five week period of remission last year and got back to full time school, he caught a virus and instantly everything shut down again and all his symptoms returned. He had another short remission just after Christmas but this one was less spectacular and was a bit hit and miss and only lasted about two weeks. Maybe it's not even remission? Maybe it's just a lessening of symptoms for a while? Whatever it was he was able to do things again like swimming, going to school, going out to play, etc. That's all stopped again now.

    On a complete aside, I have some sort of understanding of it all from my own experience in that I have SLE and Fibromyalgia so I really understand the depth of the fatigue, pain and other not so lovely symptoms that comes along with it.

    I do appreciate your reply. It gets kinda lonely handling all this sometimes

    Joan
  6. Helen

    Helen Senior Member

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    Hi @Joan,

    I am glad to hear that you have got an appointment with Dr. Speight for your son. (He, Prof. Peter Rowe and Dr. Amolak Bansal will give a seminar i Sweden in November about children with ME/CFS. The seminar will be recorded and the video available on the Internet. I will post a link).

    Maybe Donat water could be of help for your son? If you heaten one deciliter of the water to body temperature, it might solve the constipation. Sorry I don´t have the vocabulary for this. Donat water is known to be extremely helpful due to its content of Magnesium that is wellknown for treatment of constipation. It should be harmless.
    http://www.donatmg.net/en/constipation

    Did you consider a methylation issue caused by genetics for you and your children? There are signs in what you tell us that could point to that. If so, there might be help from supplements, mainly vitamin B12 and folate.

    My very best wishes to you and your children!
    Helen
  7. JoanDublin

    JoanDublin Senior Member

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    Thanks Helen
    I hadn't heard of that water but I don't think it would help. He has proved resistant to every known form of laxatives including the major ones used for surgical preparation. They simply have no effect on him at all. I don't think his constipation is down to usual causes. I think his peristalsis motion is compromised completely by his illness and I hope to talk to Dr. Speight about that. I do know that he has very slow motility issues compared to the normal population. About nine times longer than average.

    His doctors haven't considered any methylation issues as far as I know but I will do a bit of research on that. I don't know about genetics as he is adopted so therefore not my biological son. Thanks for the info and I will have a search on those things you mentioned.

    Joan
  8. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Hi Joan. I've had tummy issues with my cfs too. I have periods of not going toilet for a week every now and then with no urge at all. Then I've also had diarrhea with blood on the opposite end of the constipation. Then I changed my diet and my bowel habits have improved a lot. I know I might seem like one of those annoying drs but I'm not. I seem to have slow motility issues too but I haven't been diagnosed with it but sometimes I have no urge to go toilet for so long.

    Have you ever tried quinoa before? Every time I eat it, my poo(feel silly saying that lol) really softens. It becomes very loose. I'm not saying your son will get rid of the constipation but it may help. In my diet that's the only food that changes my bowels a lot. You can buy it from the health shop. It doesn't taste the nicest but with gravy it's eatable. Hope you take this into consideration. If you want to know more about it say as theirs different varieties.
    Last edited: Mar 13, 2014
  9. JoanDublin

    JoanDublin Senior Member

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    Thanks for the reply Ambrosia :)

    Yes I did try quinoa and also I used to put flaxseed on nearly everything he ate! No effect whatsoever apart from giving him dreadful cramps.

    Apart from two very short periods over the past 18 months he has not been able to move his bowels by himself at all. The last time he had a bowel movement himself was in early January and before that it was Sept 2013, when he had been almost a year without a bowel movement. It's pretty bad :(
  10. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Aww I was hoping that would at least be good. What have gastroenterologist said? Any undiagnosed medical condition that can explain this except " motility issues"?
    Does he get upper tummy problems like vomiting or cyclic vomiting?
  11. JoanDublin

    JoanDublin Senior Member

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    He has ME or more specifically Post Viral Illness Syndrome so they reckon its probably all connected but they don't exactly know what's going on. He has had some tests including a rectal biopsy to test for Hirschprungs Disease but so far they haven't turned up anything
  12. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Ugh so annoying when you know something is wrong and they can't give you more answers or help. Keep us updated on how the appointment goes. It's hard find information on cfs drs in the UK area so it's nice to get some.

    Have you gone through the whole cbt ged thing? Sorry if I'm asking so many questions but I'm just interested because I'm near the same age group so it's interesting to see how other teens with cfs are being treated or not treated to say the least..
  13. JoanDublin

    JoanDublin Senior Member

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    No problem with the questions Ambrosia. Happy to answer anything if it helps in any way.

    He was referred to a psychiatric service where they tried a type of CBT approach. If you want to check back to my very first thread I mentioned it in there. Should be easy enough to find as I haven't posted much. It was a disaster. It was clear that they thought all of this was in his head and that all that was needed was some behaviour modification therapy! Well that didn't last long for sure! Lol! Luckily he is a strong little character so while I had to do some advocating, he was well able to challenge them on their approach himself! I also made a complaint within the hospital and after calling a full case meeting of his medical teams, we got the situation resolved. Unfortunately a few months after that his psychiatrist left and a new one started the same crap all over again. She ended up wanting him to take Prozac!! He is not in any way depressed but yet they wanted him to take that! Anyway, as you can guess, that DIDN'T happen. I pulled him out of that service and have him in some private alternative therapies which, while helping a little bit and making him feel better, havent really changed his symptoms much.

    They also had him doing exercises which culminated in him pulling a muscle in his back which he still suffers from. So that was the end of that exercise programme.

    All I'm all the services here are dismal. I cannot find a single expert or specialist on this disease in Ireland so that's why I started looking further afield.

    How does your illness affect you if you don't mind me asking?
    Joan
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  14. Ambrosia_angel

    Ambrosia_angel Senior Member

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    @JoanDublin I've had the whole cbt, ged. I did the cbt for awhile and I'm still under her name but don't see her regularly. Throughout the whole time I was doing cbt every week or so I never stuck to anything they said about the silly chart stuff. It was stupid and I did it for one day. I follow it more now with the getting up early and going for walks. I didn't know anything about cfs when they were choosing all there low dose antidepressant treatments for me but luckily I do know no so I can avoid any silly doctors or advice.

    I got cfs around a similar time as you son but as soon as I got it education had been a no no and my health has only really been downwards as I don't get the fluctuating health of most cfs people. But I'm just trying to deal and manage it. I'm just hoping I can have a little bit of health consistency in a way so I can have some time to adapt to it. Recently I went to an outpatient referral and a Dr could only recommend hydrotherapy which sounds nice but isn't very beneficial for my health improving. To say that the treatment of cfs is bad in the UK is an insult to the word. There is no treatment in the UK. It is totally ignored sadly.

    I'm literally lying and sitting down for 23 hours of a day and they can't tell me why or give me any treatment. They just diagnose me with an illness that they consider psychosomatic. They were even telling my mum stuff like smart people get cfs and ignorant comments like that. That's like saying only smart people get cancer or diabetes. I would mind if cfs was treated properly but it isn't at all. It's an easy dustbin diagnosis and I'm shocked at how different it is for the American and Canadian patients. Even the diagnosis criterias are different.
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  15. JoanDublin

    JoanDublin Senior Member

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    @ ambrosia
    Sounds like its the same here in Ireland so. If it wasn't for the added complication of my young lads severe bowel problems he wouldn't even have ongoing appointments at the hospital. He would be left to his own devices completely. They have never fully joined the dots either. I still get doctors in the hospital questioning his diet and advising him to get more exercise.... When you mention things like his fatigue, pain, etc they develop this blank look that I reckon they must practise in the mirror each morning! Sadly many doctors do not 'get' that the key to living is energy. If one has no energy one is somewhere halfway between living and dead...not to be dramatic or anything. Even those with other severe illnesses or disabilities can do much more than my young boy can, simply because they have the energy to plan, do and enjoy all the good bits of their lives. My young lad can't as cant many others with this damn illness.
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  16. justy

    justy Senior Member

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    Yes Joan exactly - when having many other diseases or disabilities it is possible to have a near normal life.

    I was lucky enough to be able to go to Spain for a trip this winter and while there we noticed how terrible the wheelchair access is everywhere - now way could a disabled person in a wheelchair get about on their own. My husband made what he thought of as an innocent remark when he said 'imagine what it would be like if you where really disabled' (I can walk but use the wheelchair for conserving energy, to avoid PEM which can be severe for me)

    What he meant - as I pointed out was how difficult this would be for me if I had lost the use of my legs and therefore was utterly dependant on the wheelchair and couldn't jump out to go down steps etc. as I pointed out - I AM disabled - why else would I be usong the b****y thing! In fact as I told him, if I merely couldn't use my legs I would have a very normal life. I would have tons of normal energy - perhaps I could play wheelchair basketball or go dancing. I could get a job as I wouldn't have brain fog that made me feel out of body all the time. I wouldn't have cognitive issues. I could go out alone and be independent without worrying about collapsing or ending up in bed for a week because I had overdone it. I could become and MP - go swimming - learn to fly a plane - bungee jump - hold down two jobs - drive my kids to the park for a day out.

    Having M.E is an awful illness that wrecks all aspects of ones life.

    Sorry Joan, off topic and rambling/ranting now.
    Let your son know we are routing for him will you, and my son who is nearly 14 says hi as well - he was so upset to hear that children of his age could be ill like his mum. (he doesn't really remember his sister being very sick)

    TC,
    Justy
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  17. JoanDublin

    JoanDublin Senior Member

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    You've described it in much better detail than I could. That's exactly the difference. Some people with serious disabilities, e.g. loss of legs, go on to have extraordinary and very fulfilling lives. Once a person has the energy to do something and gets motivated, then the sky is the limit. Unfortunately as you well know, people with this illness can't get off the starting blocks :(

    An interesting aside about this appointment with Dr. Speight is that in order to get it I had to complete an assessment form on behalf of my young lad and I noticed that a lot of the questions correlated to the International Consensus thing for diagnosis and research. I was shocked to discover how many boxes he 'ticked'. I guess when you live with something for so long you just get turned off mentioning symptoms and it's only when someone asks you that you end up confronting or at least naming them. Anyway, I decided to send a copy of this completed assessment to his hospital consultant with a request that it be kept on his files. I wonder will he even bother to look at it? You never know. It might have some positive effect!

    I have also asked for a copy of all tests and their results, interventions, procedures, diagnoses, reports, etc etc carried out by the hospital since September 2012 so it will be interesting to see how difficult these might be to get hold of! I know in my gut that they have not carried out all possible tests. Maybe they have a good reason for this but if they do, I wish they'd share it with me. Watch this space!

    Jeez, you'd be worn out with all the advocating!
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  18. justy

    justy Senior Member

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    He is so lucky to have you as his Mum Joan - fighting his corner.
    xx
  19. Ambrosia_angel

    Ambrosia_angel Senior Member

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    @JoanDublin I feel that way too. Even most teenagers with cancer live better and more active than me. They have so many social groups and funding for them to be able to socialise with other people going through the same thing but for us it's We don't get government funding or help.

    I have a feeling they haven't tested me for everything either. I think the whole differential diagnosis happens with every cfs patient though.
    I think I could possible have a mitochondrial issue which are hard to diagnose as there are many! But most drs only correlate mitochondrial disease with babies. I think you can only follow your instinct and I still have this niggling feeling.
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  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    @Ambrosia_angel , You can use it like rice and put sauce type foods over it - curried chicken, paprika chicken, or beef stroganoff, for example.
    Ambrosia_angel likes this.

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