Comments on: How to cope when your child is diagnosed with a serious, chronic disease http://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/ Life. Home. Parenting. Food. Geek. Wed, 08 Feb 2012 12:53:27 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: ellahttp://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/comment-page-1/#comment-10928 ella Mon, 12 Sep 2011 20:26:10 +0000 http://mostleast.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/#comment-10928 Thanks for your comment Rita and sorry to hear about your nephew, I understand exactly how you are feeling. I hope you can keep strong in front of him and I don't know his exact prognosis but I understand that it is not certain whether anyone would get FSGS again after a transplant until it happens. I hope that this might give you some hope x Thanks for your comment Rita and sorry to hear about your nephew, I understand exactly how you are feeling. I hope you can keep strong in front of him and I don’t know his exact prognosis but I understand that it is not certain whether anyone would get FSGS again after a transplant until it happens. I hope that this might give you some hope x

]]> By: Rita Nesshttp://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/comment-page-1/#comment-10921 Rita Ness Mon, 12 Sep 2011 06:30:32 +0000 http://mostleast.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/#comment-10921 my nephew was diagnosed with FSGS about three years ago, he is 24 years old, he recently developed a fungul ling infections a few days before starting law school, well he has been in the hospital for a month, he is currently at a rehab facility to help him get some strength, he is on dialysis since he is not making any urine on his own (it breaks my heart to see me, but I keep a strong face in front of him) the doctors already gave us a grim prognosis, he is telling my sister in law that if he received a transplant, the new kidney would be invaded by the disease. His parents dont seem to understand the severity of his prognosis or are just in denial, I feel sadness and hopelessness my nephew was diagnosed with FSGS about three years ago, he is 24 years old, he recently developed a fungul ling infections a few days before starting law school, well he has been in the hospital for a month, he is currently at a rehab facility to help him get some strength, he is on dialysis since he is not making any urine on his own (it breaks my heart to see me, but I keep a strong face in front of him) the doctors already gave us a grim prognosis, he is telling my sister in law that if he received a transplant, the new kidney would be invaded by the disease. His parents dont seem to understand the severity of his prognosis or are just in denial, I feel sadness and hopelessness

]]> By: Counseling — notes from homehttp://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/comment-page-1/#comment-2533 Counseling — notes from home Mon, 12 Jul 2010 20:20:46 +0000 http://mostleast.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/#comment-2533 [...] friendship bench (it doesn’t occur to him to tell them that he is tired). He told her about the pain and the medicines and the worries about having to go to hospital. He told her about the times he wished he was [...] [...] friendship bench (it doesn’t occur to him to tell them that he is tired). He told her about the pain and the medicines and the worries about having to go to hospital. He told her about the times he wished he was [...]

]]> By: ellahttp://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/comment-page-1/#comment-1599 ella Wed, 26 Aug 2009 14:38:25 +0000 http://mostleast.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/#comment-1599 Sandy - I'm so glad you came by to comment especially after reading what was obviously a difficult post for you to read. It's good to hear that you didn't feel you missed out as a child despite your brother's illness.I do have family nearby and I rely on them more than ever now. This is another of my worries about moving to the US - losing my network of family and friends who understand what we are going through. Sandy – I’m so glad you came by to comment especially after reading what was obviously a difficult post for you to read. It’s good to hear that you didn’t feel you missed out as a child despite your brother’s illness.

I do have family nearby and I rely on them more than ever now. This is another of my worries about moving to the US – losing my network of family and friends who understand what we are going through.

]]> By: ellahttp://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/comment-page-/#comment-1598 ella Wed, 26 Aug 2009 14:33:05 +0000 http://mostleast.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/#comment-1598 Jen - so glad to hear your daughter is doing better. Thank you for commenting - have you been able to do anything for your son's anxiety? Jen – so glad to hear your daughter is doing better. Thank you for commenting – have you been able to do anything for your son’s anxiety?

]]> By: ellahttp://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/comment-page-/#comment-1597 ella Wed, 26 Aug 2009 14:30:10 +0000 http://mostleast.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/#comment-1597 MPM - thank you for your comment. I agree with your three points and I forgot to put in my post how much writing about all this helps me to cope. It's as if getting it down in type gets it off my mind. MPM – thank you for your comment. I agree with your three points and I forgot to put in my post how much writing about all this helps me to cope. It’s as if getting it down in type gets it off my mind.

]]> By: SandyCalicohttp://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/comment-page-1/#comment-1596 SandyCalico Tue, 25 Aug 2009 21:38:37 +0000 http://mostleast.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/#comment-1596 Ella, I left this post in my reader for a few days as I knew it would be hard for me to read. It sounds like you are doing an amazing job. You are fighting for the best medical care. Unfortunately just because someone is in a job it doesn't mean they can do that job. This is as true in medicine as in any profession. My children are well - thank goodness - but I grew up with a chronically ill brother, so I have some idea of the disruption to family life that this can bring. Our mother always treated us the same where she could. I never felt that I missed out as a child because he was frequently in hospital. Do you have family nearby who can help? I have no advice other than keep doing what you're doing. Sending you virtual (((HUGS))) and remember to look after yourself too. Love Sandy x Ella,
I left this post in my reader for a few days as I knew it would be hard for me to read.
It sounds like you are doing an amazing job. You are fighting for the best medical care. Unfortunately just because someone is in a job it doesn’t mean they can do that job. This is as true in medicine as in any profession.
My children are well – thank goodness – but I grew up with a chronically ill brother, so I have some idea of the disruption to family life that this can bring. Our mother always treated us the same where she could. I never felt that I missed out as a child because he was frequently in hospital.
Do you have family nearby who can help?
I have no advice other than keep doing what you’re doing.
Sending you virtual (((HUGS))) and remember to look after yourself too.
Love Sandy x
Twitter:

]]> By: jenhttp://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/comment-page-1/#comment-1595 jen Fri, 21 Aug 2009 22:08:47 +0000 http://mostleast.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/#comment-1595 I had a very sick daughter for the first 18 months or so of her life. Thankfully (touch wood) she is much better. But I had to fight tooth and nail for help, disagree with consultants as to the diagnosis, and enlist the help of a GP who actually listened and got us the required drugs. She is now on 3-monthly checkups. Thankfully she was little enough not to be mentally impacted apart from some attachment issues, but her brother has had some severe anxiety issues as a result. I am now on anti-depressants. I think you are doing AMAZINGLY well. I came across your blog via goodness knows where now, but have hung in there and prayed for your boy. Keep going. I had a very sick daughter for the first 18 months or so of her life. Thankfully (touch wood) she is much better. But I had to fight tooth and nail for help, disagree with consultants as to the diagnosis, and enlist the help of a GP who actually listened and got us the required drugs. She is now on 3-monthly checkups. Thankfully she was little enough not to be mentally impacted apart from some attachment issues, but her brother has had some severe anxiety issues as a result. I am now on anti-depressants. I think you are doing AMAZINGLY well. I came across your blog via goodness knows where now, but have hung in there and prayed for your boy. Keep going.

]]> By: Mama Plays Mozarthttp://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/comment-page-1/#comment-1593 Mama Plays Mozart Fri, 21 Aug 2009 19:25:56 +0000 http://mostleast.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/#comment-1593 I stumbled across your blog today and this post has really spoken to me. You are incredibly strong and are doing an amazing job with your son. My daughter also has complex medical issues and I find it hard to cope sometimes too. My daughter is only 10 months old, but I've learned that 1) There will probably be under 10 people in your life that will really truly care about your situation, but when you do come across them, they will make a world of difference -all the others will either be scared to talk about your situation or will end up just feeling sorry for you. 2)I know my child the best...I might not have a medical degree, but I do have something better -mothers intuition. I've had to fight for my daughter to get the care she needs and I'm still fighting every day. 3) blogging is theraputic!You need to know that you are doing everything you can for your child..including knowing that you need to go to pilates classes :) You should be so proud of yourself. William is lucky to have a mother like you. I stumbled across your blog today and this post has really spoken to me. You are incredibly strong and are doing an amazing job with your son. My daughter also has complex medical issues and I find it hard to cope sometimes too. My daughter is only 10 months old, but I’ve learned that 1) There will probably be under 10 people in your life that will really truly care about your situation, but when you do come across them, they will make a world of difference -all the others will either be scared to talk about your situation or will end up just feeling sorry for you. 2)I know my child the best…I might not have a medical degree, but I do have something better -mothers intuition. I’ve had to fight for my daughter to get the care she needs and I’m still fighting every day. 3) blogging is theraputic!

You need to know that you are doing everything you can for your child..including knowing that you need to go to pilates classes :) You should be so proud of yourself. William is lucky to have a mother like you.

]]> By: ellahttp://notesfromhome.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/comment-page-1/#comment-1594 ella Fri, 21 Aug 2009 17:25:57 +0000 http://mostleast.com/2009/08/20/how-to-cope-when-your-child-is-diagnosed-with-a-serious-illness/#comment-1594 Kate, thank you :) Kate, thank you :)

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