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Topic: Please help, giving me some info on medical subject.

  1. #1

    Please help, giving me some info on medical subject.

    Normally I won't tell you my worries about the ins- and outs of my family. Private things should remain private. But now I'd wished having some more information on the following subject. My grandson is suffering juvenile dermatomyositis, a sort of rheumatism. It is very rare, one out of a million boys have this. Since june this year, his immune system got worse and worse. The specialists, some medical professors at the Acadamic Hospital in Leuven, Belgium, can't set the diagnosis right and prescribed a medical treatment with medicines like Prednison and more.

    We all know what Prednison can do to adults, not to speak of small children (he is 4 years and a couple of months). But there is no alternative. The desease is so uncommon that the pharmaceutical industry doesn't have an answer - the costs of research and development, you know -, therefore they experiment with different doses. Nothing seems to really help him. His internal organs, liver and kidneys, deteriorate. From a very lively todler he became a dull, stressed and insecure little guy. At the bottom you see two pictures, one taken in November 2010 and one very recently.

    My son and I are looking at the Internet for more info on this subject, but mostly the websites aren't that good, giving us the idea of quackery and urban legends. Do you know, having heard, have somebody in the family or anything seriously relating to this subject, please PM me.



    After: (for fun he is wearing his father's glasses)


    With regards and you all a very fine Christmas,


  2. #2

    Re: Please help, giving me some info on medical subject.

    I am not a doctor but I empathize with you situation. I did some research and found in one instance that it can be dealt with by the use of steroids (which ones and what side effects there are, I have no knowledge).

    My heart goes out to you and I hope a prognosis and control method is found.
    [Music is the Rhythm, Harmony and Breath of Life]
    "Music is music, and a note's a note" - Louis 'Satchmo' Armstrong


  3. #3
    Senior Member Styxx's Avatar
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    Mar 2004
    West Seneca, NY

    Re: Please help, giving me some info on medical subject.

    Yes, I agree with Rich. This is a new one on me though so I've been searching on line for more information. However, I did find the same as Rich concerning steroids. I guess the question is to research and ask more medical professionals as to how it can be treated and to what extent.
    I come in contact with med professionals from time to time and I will see if any have had experience treating this condition. Maybe we can find out more.

    Many prayers go out to the little guy.

  4. #4

    Re: Please help, giving me some info on medical subject.

    I don't want to sound like a crank, crackpot or snake-oil salesman but sometimes the weirdest cause can have the weirdest effect. I had the most terrible gastric reflux, it was causing me considerable pain - it's like very bad acid indigestion. I also had a lot of trouble breathing at might whilst asleep- this was cause by a nasal blockage.

    When the sleep problem was resolved, I realised three weeks later that the reflux had gone. I've never had it since (well once after a Chinese all you could eat meal).

    My point here is that there "may" be a cause and effect relationship here that is overlooked - medics hate this idea - but there does seem to be a slight chance that there os a cause that is being missed.

    Check diet carefully, check for anything that may be an allergy, check for extraneous causes - dogs, cats, fleas (these are surprisingly common ) etc. You've nothing to lose and everything to gain.

    Don't rely entirely on the medics words until your sure you've checked everything else, but don't try silly remedies. See if there's a cause that you've missed
    Things may come and things may go but the art school dance goes on forever
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  5. #5

    Re: Please help, giving me some info on medical subject.

    For now, thanks. Please don't hesitate to answer when you encounter something useful. My grandson has been tested for : cats, dogs, plants, the whole bunch. The parents have a rabbit in the garage, but the medics say that this doesn't harm at all. He is under severe diët: no milk products, no more apple juice, more vibres, less salted stuff, no sugars at all, a variety of vegetables, but well cooked. Another thing is that he cannot get rid of the waste in his body at a normal rate. Prednison, by the way, is a corticosteroid, which makes him look like a too fat kid. Four times a week he visits a fysiotherapist getting more muscle power.

    For now I don't have more to share, my story is always "second hand", relying on the communication from the parents.


  6. #6

    Re: Please help, giving me some info on medical subject.

    An update. I know, it was hard to find. My son and I did some investigation and found out that the Cincinatti Hospital had some similar cases. Finally those Belgium doctors started giving him one of the new medicines, used in the US. They knew of the medical reports overthere, but as stated, only two out of three got better. And there are only two or three on a million who has this. Since june my grandson got a mix of mild, strong and stronger medicines, but to the surprise of the medical staff none of them seems to work. Yesterday he got a bloodplasma treatment (leucocytes?), and for the next couple of weeks this treatment will continue. It is the very last try getting the desease solved.

    Let's pray for a miracle. The prognosis aren't good.


  7. #7

    Re: Please help, giving me some info on medical subject.

    that little guy is on my daily prayer list!!!!

  8. #8

    Re: Please help, giving me some info on medical subject.


    You may want to see if you can get the documentary, "Fork Over Knives." It is about changing current eating habits to include mostly PLANT FOODS. It has revolutionized medicine and has contained and reversed many diseases just by eating the right foods (a natural diet).

    Everyone should see this documentary. It's not a hoax. It is a 1 1/2 hour documentary about what is and what isn't good for our bodies as far as food is concerned. It documents curing many problems associated with incorrect dieting habits.

    And, it doesn't cost anything......

    Jack Cannon--Toshiba laptop, 2.8 GHz CPU, 1.5 GB RAM, GPO4-JABB3-Auth. STEINWAY-Gofriller CELLO-Stradivari VIOLIN-COMB2-WORLD, FINALE 2009/11, RME Digiface, Cardbus, V-Stack---Mac Pro 2.66 GHz CPU, 8 GB RAM, DP 8, MOTU Traveler, MOTU Micro Express.--MacBook Pro 2.2 Ghz CPU, 8 GB RAM.

  9. #9

    Re: Please help, giving me some info on medical subject.

    Good morning Jack,

    food isn't the problem. He is on a very strict and healthy diët. He developped diabetes, due to the poor actions of his internal organs. Strictly no sugar, no salt, no whatever.... The parents are very strict about this, I am sure. The inflammation infected his muscles also ( he got a complete MRI scan). He is not growing an inch. But thank you for pointing out this documentary, today I will do a search for it..... By the way, we Europeans tend to eat more vegetables and less rice, potatoes, pastas, meat, etc.... than people do in the States (it is changing, but in our family we love vegetables of all kinds).


  10. #10

    Re: Please help, giving me some info on medical subject.

    So sorry to hear about the problems with your grandson, Raymond.

    May I take it as read that you've visited the en wikipedia site for juvenile dermatomyositis?

    There is helpful information there about the condition including the information that this, like many similar conditions, is believed to be genetic in origin. There is information too about possible treatments and, possibly of most use (?) a reference to the web site of the juvenile dermatomyositis research group, JDRG.


    You will find several hospitals in the UK (not too far to travel) that have special centres, Great Ormond Street is one where you may get help.

    I hope this will help you and the family get the help you need.

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