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11/29/2008 20:54
fiona05
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My son is 9 and finally working with Dr J. We are using mincin and zithromax, and he had a major hex response within a week. My worry is that he seems to have bouts of deep sadness and depression. He said tonight that he has nothing to live for. They pass for him. Does anyone have some words of wisdom here? He also acts up sometimes and really goads his sisters. I know he is fealing horrid, but I am tired of trying to explain to everyone else (extended family etc) why he is acting this way. He is so sweet otherwise. What do I do?
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11/29/2008 23:06
grayshockley
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Is the doctor giving him "adult doses"? / gray /
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11/30/2008 06:33
fiona05
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50 mg minocin

250 zmax

once a day now, up to 2x in 3 days

I do trust DR J, he is the only one I could find here, and helped so many...

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11/30/2008 09:40
dharma79
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It's so hard for kids at his age to express themselves under "normal" conditions and a major nightmare to have to do when you feel so horrible all the time. What he's going through is terribly unfair to any way of thinking and I think it is perfectly normal that he would act out and try to exhert some control over what is happening to him. He's scared, in pain, confused and angry. Even the adults dealing with this disease get depressed and lash out at loved ones when you just can't take another second of it. Of course, speak to your doc about meds but maybe it would do him some good to get some counseling to vent in a focused and productive way or become involved in a group with other kids that are having to face unfair health issues.

It is a shame that we can't adequately describe the extent of this illness' effect on us to our loved ones because it is so crucial to the recovery process to have positive support around you. I heard all weekend how "great you look" when I really felt like I wanted to find a dark hole and curl up and just rest my weary, achey, tired body in peace and quiet for a little while...and upset that that's how I felt instead of being happy and playful with family and friends. I wanted to scream at the top of my lungs how bad I felt but of course I didn't because I am an adult who has a better handle on my emotions than a child, who, in the same situation would probably just go ahead and scream.

I think your son will be ok if you continue to love and support him in the nurturing way you seem to already be doing and continue to empower him and validate his feelings that what he has to go through is unfair but he can and will feel better some day if he can keep his head up and keep moving...babysteps are still forward motion and therefore progress.

Talk with him...and if he won't talk to you...get him to talk to someone...another family member you both trust and respect and understands his illness or a professional.

I wish your family didn't have to go through this at all. My thoughts are with you, your son and the rest of your family...

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