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New to all of this

Discussion in 'Introductions' started by amaple30, May 21, 2011.

  1. amaple30

    amaple30 New Member

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    May 21, 2011
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    Hi
    I'm completely new to this and forums in general - as I've never used one before so I don't know any of the abbreviations people are using on here so you'll have to excuse my long post!!
    My grandson, Michael was diagnosed with diabetes last June when he was 10 months old. He was unwell for a couple of days. We took him to the doctor who checked his ears, throat, chest, temperature and told us he was fine and that he either had a virus or he was teething. I had noticed that his nappies were soaking wet and he was gulping down bottles of water but the doctor said that of course he would pee more if he was drinking alot! The next day he was listless, and did not sleep for over 24 hours so we took him back to the doctor (a different doctor) who said he was severely dehydrated and told us to take him to the A & E department. By the time we got to the hospital he was slipping into unconsciousness. As soon as the nurse saw him she checked his blood sugars - and he was admitted to ICU where he cried for the whole night. By morning they had stabilised him and he was transferred to the national children's hospital where he spent another night in ICU and a further week in the hospital. We noticed that his arm was sore (he cried when he was being dressed) but we thought it was tender from all the needles he had had while in the hospital. Then a few days later we noticed that he was not standing - each time he was held he lifted his feet, he did not - or could not - put his weight on his feet. At his next hospital appointment we mentioned this to his endocrinologist who admitted him and got a rheumatologist to look at him. After running a lot of tests they decided to treat him for rheumatoid arthritis. He was put on steroids and instead of getting better more of his joints got affected over the next couple of months until both knees, ankles, wrists, most of his fingers, a few of his toes and his neck were affected. He still gets oral steroids each day and is on a weekly Methotrexate injection but as he is still no better after 6 months of this he is now starting twice weekly Enbral injections.
    Michael is 22 months old now and still can't stand unaided, he can only stand for a few seconds while being supported. When lying down he struggles to get himself into a sitting position. To get around he "bum shuffles" - and he can move fast!!
    It's great to read other people's stories here and I'm wondering if there are any other children out there like Michael who have both diabetes and arthritis.
    Thanks
    Pamela
     
  2. KatieJane'smom

    KatieJane'smom Approved members

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    Wow! What a terrible experience. I can't help you out with the arthritis but I can say welcome to CWD. I'm sure there will be someone to come along who may have a child with these same difficulties. Poor little guy!
     
  3. obtainedmist

    obtainedmist Approved members

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    Hi Pamela...so happy you found us! I'm sorry for all the challenges your family has faced. I hope you get some good support from others who have experienced some of the same issues.
     
  4. Becky Stevens mom

    Becky Stevens mom Approved members

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    My goodness Pam! Im so sorry about your little grandson:( Bless his heart. Has the endo diagnosed him with rheumatoid arthritis as well as the type 1 diabetes? they are both autoimmune diseases so some children do have both. I know of a very nice couple that sometimes post in here whos daughter has several autoimmune diseases including RA. I will ask them to post a reply to you. How is your grandson's parents doing with all these changes? How have your grandson's blood sugars been? Is he adjusting ok to the diabetes? Sweet baby:cwds:
     
  5. Brenda

    Brenda Junior Member

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    Oct 19, 2005
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    Pamela,

    Sorry your grandson has had so much to endure already.

    Just wanted to clarify for readers that the arthritis with which your grandson has been diagnosed is most likely Juvenile Rheumatoid Arthiritis (JRA), an autoimmune disease, like type 1 diabetes. I believe steroids are the usual treatment for this. It is NOT the same arthritis we older folks develop (yep, I'm putting myself in the old folks group--over 50 yrs. old).

    Best of luck.

    Come back any time you have specific diabetes questions. There may even be others who have a family member with JRA who can help with that as well.
     
  6. JeremysDad

    JeremysDad Approved members

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    Hi Pamela and welcome to "the family". We are a bunch of mostly anonymous individuals who share a common bond; we or a family member has diabetes, mostly type 1. I'm glad you are here because you'll find so much information from folks that hopefully will help your grandson and your family.

    Please come back often and ask questions. We are here to help.
     
  7. Brensdad

    Brensdad Approved members

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    Hi Pamela. I'm sorry to hear the news, but glad you found CWD! Our Emma was diagnosed with type 1 diabetes when she was nine months old and then has been diagnosed over the years with JRA, Hashimoto's disease and a flurry of other auto-immune diseases. I can't give you a lot of advice at this point beyond just reassuring you that coming here is a very good first step! There are a number of medications available to help treat JRA that are not quite as hard on diabetes as others. For example, steroids are usually the drug of choice for those with arthritis, and steroids and diabetes don't play well together.

    Over the next several months, you'll begin to learn which type of arthritis he has (yes, there are more than one) and begin to fine-tune those treatments. The great news is that kids do grow out of some kinds of JRA (but not all).

    Be sure you get a good rheumatologist who will work with your endo and who will listen to what you are saying. You will have a million other questions, so feel free to shoot them over to me via a private message or here on the forum if you want.

    Nick
     
  8. Brensdad

    Brensdad Approved members

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    I just re-read your post. Would your rheumatologist let you try Celebrex or another NSAID rather than Methotrexate? That's a pretty stout drug, and if Michael's still having that much trouble then maybe something else is worth trying at this point?

    It just breaks my heart to think of him scooting around like that from the pain in his joints. :(
     
  9. Alba37

    Alba37 Approved members

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    Hi Pamela

    Welcome to CWD. I am really sorry to read about Michael's diagnosis. Having diabetes is bad enough without another long term condition also. Just take your time and get used to the forum. Like everything it's easy when you know how! If you are not sure about something just ask.

    I don't know of any children with diabetes and arthritis. CWD also have mailing lists and I am subscribed to some of their lists too, I will ask if any of the children do have both in case I didn't know and if so ask the Mum's to come here to talk to you.

    Best wishes

    Aileen :cwds:

    Mailing lists - http://www.childrenwithdiabetesuk.org/children-with-diabetes-email-and-mailing-lists/
     
  10. KatieJane'smom

    KatieJane'smom Approved members

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    Hope this helps you with the abbreviations and acronyms:

    http://forums.childrenwithdiabetes.com/showthread.php?t=11843

    You might also find the FAQ's to be helpful when trying to learn to navigate the forums. It's the blue bar right above here. Don't be intimidated. After all these years, I still don't know how to post a photo in here:eek:. If you have a question about how to do anything in the forums please don't be afraid to ask. Someone (probably not me - I'm very *****) will answer you. There are no stupid questions here.:cwds:

    Again, welcome!
     
    Last edited by a moderator: May 22, 2011
  11. MamaC

    MamaC Approved members

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    Welcome to CWD.
     
  12. amaple30

    amaple30 New Member

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    Thanks

    Hi and thank you all for the welcome and the advice....... all much appreciated!
    Pamela
     
  13. Victoria!

    Victoria! Approved members

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    Welcome! I too am a "newbie"...there is GREAT info here...enjoy!
     
  14. kgerrick

    kgerrick Approved members

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    Hi Pamela,

    I am so sorry about your grandson. I am new here too and this site has really been very helpful for me. You're in my thoughts.
     

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