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RE: [Myotubular_Myopathy] Re: Cason's in the hospital/pottassium question???

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  • Wendy
    Hi Dana, I found this on a google search and it explains about potassium. I hope it s helpful, but in all sincerity, I ve never known an MTM child require it
    Message 1 of 7 , Dec 14, 2008

      Hi Dana, I found this on a google search and it explains about potassium.  I hope it’s helpful, but in all sincerity, I’ve never known an MTM child require it – hopefully others are more experienced here and you can ask your doctors. I hope this helps with those queries.  I really do feel for you and Cason too, it’s especially horrible when you’ve been enjoying a period of excellent health and then something like this seems to resurrect all those darkest fears and feelings you were dealing with before – it’s harder to bear when you see your child take a plunge backwards – but I really hope this is temporary and Cason gets back to good health and strength very soon. With best wishes and our thoughts are with you too.




      Potassium is a mineral necessary to good health. It maintains the water and acid balance in blood and tissue cells, assists in muscle building, and transmits electrical signals between cells and nerves. Early symptoms of hypokalemia, or potassium deficiency, include dry skin, muscle weakness, fatigue and slow reflexes. If the deficiency develops rapidly, heart problems may result. Left unchecked, a condition known as hypokalemic paralysis may develop, in which the entire body goes stiff. This is a very serious condition requiring immediate medical attention.

      Potassium is available in large quantities in many foods. Beef, chicken and fish such as cod, salmon, and sardines all have significant amounts of potassium. Good vegetable sources include peas, tomatoes, leafy greens, lima beans and potato skins. Bananas, melons, apricots and citrus fruits are also rich in potassium. Dried fruits such as mangoes and apricots provide concentrated sources of potassium, as do nuts and chocolate. Accordingly, a diagnosis of potassium deficiency is not usually due to a dietary deficiency.

      Known causes of potassium deficiency include excessive diarrhea and vomiting. The treatment in these cases should be for the diarrhea and vomiting, and ensuring there continues to be sufficient potassium in the diet. Mineral supplements may also be necessary. If the vomiting is self-induced, as in bulimia, psychiatric treatment may be indicated.

      Hyperthyroidism, an illness of the thyroid, the main hormone producing gland, is also known to cause potassium deficiency. It, in turn, may be caused by an imbalance in other minerals similar to potassium such as magnesium, sodium and calcium. There are numerous treatments available for hyperthyroidism, all requiring some level of medical supervision.

      Medications known to increase the likelihood of potassium deficiency include diuretics, cortisones and drugs for controlling high blood pressure. Alternate medications and/or treatments can be explored with a medical professional. If changing medications is not feasible, it may be necessary to supplement with potassium or mineral tablets.

      It has been suggested that potassium deficiency may be a side effect of malfunctioning kidneys that contributes to rheumatoidal arthritis; currently there is little data to support this theory. However, hyperkalemia, or excessive potassium in the blood, has been linked to kidney problems.


      -----Original Message-----
      Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of elz0221@...
      14 December 2008 13:37
      To: myotubular group
      Subject: Re: [Myotubular_Myopathy] Re: Cason's in the hospital/pottassium question???


      I couldn't agree more with Shannon and Debbie. Chaz made it through an entire year with nothing but a small cold and in the back of my mind I thought, well maybe he is past the hospitalizations and kind of forgot about the fact that he had mtm. Then when he ended up in the picu in may on a vent for 6 1/2 weeks with rsv we remembered and had ourselves quite the pity party. Its not like we forgot how sick he could get, but we kind of put it in the back of our minds. Each and every time he gets hospitalized I think to myself this is the last time he is going to get better now. And then his mtm shows us that it is a very real thing and puts him back in the hospital. I know I've rambled on but reading your post just brought back so many feelings.

      I hope
      carson gets better quickly and is back home with you soon. You are in our thoughts and prayers.

      Sent via BlackBerry by AT&T

    • Sheallyn
      Dana, so sorry to hear that Cason is not well. I ll keep my fingers crossed for him that he gets better as soon as possible. As for feeling the way you do, I
      Message 2 of 7 , Dec 14, 2008
        Dana, so sorry to hear that Cason is not well. I'll keep my fingers
        crossed for him that he gets better as soon as possible.

        As for feeling the way you do, I see nothing wrong with this. To go
        3 years with no problems shows that Cason's body is quite strong as
        he has avoided nasty bugs and such for a very long time. And your
        right, it does put you in a different state of mind .. It allows us,
        as parents to relax a little and enjoy our children without the
        stressful thoughs of things like " what will tomorrow be like, will
        things be ok"

        There is nothing easy about having a child with a terminal illness
        so, to go so long without complications, makes your thoughts all the
        more understandable! No one wants to live one day at a time, we just
        want to "be" and enjoy what we have and I think we've all earned
        that right. Your the mother of a very special child, who carries
        great responsibility, as far as I am concerned you have the right to
        feel whatever you feel ..

        lots of love to you and your family.
      • Corey Leibowitz
        Dana I am so sorry to hear tha Carson is sick. You and Carson are in our thoughts and prayers. How is he? How are you holding up? Spencer is vented 24/7 and
        Message 3 of 7 , Dec 16, 2008
          I am so sorry to hear tha Carson is sick. You and Carson are in our thoughts and prayers. How is he? How are you holding up? Spencer is vented 24/7 and has only been hospitalized 3 times in the past 5 years. BUT everytime he gets a cold, I get scared that he will end up in the hospital. It's hard to keep our kids from getting sick, it's not like we cam isolate them. I remember when Spencer had pneumonia, for him that is what lead to him being trached. It was not an easy time for us.

          Corey Leibowitz

          --- On Sat, 12/13/08, Dana <casonsmiracle@...> wrote:
          From: Dana <casonsmiracle@...>
          Subject: [Myotubular_Myopathy] Cason's in the hospital/pottassium question???
          To: Myotubular_Myopathy@yahoogroups.com
          Date: Saturday, December 13, 2008, 9:02 PM

          Well, 1st let me say that it has been a great 3 years. No hospital stays, no scares, and no major illnesses. These 3 years have been great and I would not trade them for anything in the world, but it sure made it easy for me to slip into a nice peaceful denial. Now we are back in the hospital with pneumonia and it has turned my world of denial uspside down. I don't want to go back to that time when one illness was followed by another illness, then another, and another. I don't think that I can relive the 1st 2 years of his life. I don't think that I can ride that emotional rollercoaster any more. Okay, I will try to lay off of the self pity a little bit. I know some people have it worse than I do. I just ask that all of you please keep Cason in your prayers. I have to keep my faith, that is what has gotten us this far.
          As I was saying, Cason has pneumonia and is in the PICU. They ran all kinds if test and came back and told me that Cason's pottassium is very low and they gave him a bag of potassium via IV. They are going to give him more later and them retest. They were very, very concernd about it, but when I adked questions about it they would give me short answers. Can anyone tell me if they have ever had this problem with there kiddos or if anyone knows what causes this, what it means, etc??
          Thank you and God Bless,
          Dana and Cason

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