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I am a mother of a nephrotic child, he is 6 years old.He has been hospital home bond for kindergarten which makes things very hard for the whole family. I just need to talk with another mother who is feeling the same stressssss i am.
Cyclosporine Nephrotic syndrome Chickenpox Minimal change disease Pneumonia Prednisolone Prednisone Stress
I am so with you. I think my daughter has missed three of every five days at kindergarten. This sucks. I keep trying to look at the bright side...but i can't find one right now. She's had good days, but lately we're not doing so hot. If you need to vent...vent to me...I think we're in the same damn boat.
It's supposed to get better...and hopefully very soon! Won't someone cure this already?
I wish they would. It's such a rollercoaster ride and we can't get off..Quinn (my son) has been home all year, never got to meet his friends at school (yet)! We as well are not doing so hot! We have to stay home no stores,parks,movies nothing, its getting to quinn and the family.
Quinn was diagnosed when he was 3 years old.He is now 6 years old. They call him minimal change nephortic syndrom. He takes cyclosporine and prednisolone every a.m and p.m. . for 3 damn years. He is on his 3rd relaps. I am so tired off never getting a chance for him to be FREE of drugs......
Hello from Australia, I know exactly what you are going through. Morgan my daughter who is 5 was off school all of last school term she is also on cyclosporine and prednisolone every morning and night and she has also relapsed but she seems the happiest she has been and is back at school. Her class has been told to stay home if they are sick which is great and the school so supportive. It is extremely exhausting on the whole family and I think the most important thing I have learnt out of all of this is making sure you have a little me time. You and your husband/partner need to make time for each other too because you really need each other to get you through all this. Thinking of you. Trace
Just out of curiousity, why can't you go out with him? was that something your doctor ordered, or do you just feel more comfortable that way? I know that even in the worst of times (and right now it feels that way) going out to the park or the movies seemed like it was okay as long as I purelled the hell out of her afterward. I have kept her out of school these days just to hopefully give her a chance to catch up...but alot of people don't agree with that. I was just wondering what your take on it was, as you said you are homebound right now.
Anyway, we all know how you feel, and I figure if we all keep talking about it maybe we can all feel a little better.
take care.
laura
Quinn's doctor ordered for him to be hospital homebound.We as a family had a hard time making the right choice for Quinn, We thought about going against the Dr. wish to keep him home but we would have felt so guilty if anything happend. He is in another relaps, we go for more blood work friday :(.. Dr. Campos might change his med's ...I still feel so confused if we are doing the right thing for him.we think it's better to be safe then sorry..?..?... thanks so much , i reallllly needed to talk to other moms........!!!!!!!!
I am not sure what u mean by hospital home bond but i assume its keeping him at home all the time??
My son is 5 and has FSGS since he was 3..he is currently on 12 weeks on chemo, steriods and blood pressure tablets..He has come off the prograf as it stopped working..thankfully he is doing really well on the chemo with no apparent side effects and has been in remission for 2months!!!!He has never been in remission for the past 2 years...
My advice is..let ur son have a normal life, you might be protecting him from outside germs but is his quality of life better because of this!!!Adam is in school now, goes swimming,horseriding, goes to parties and play centres..really does what every normal boy his age should be doing..NO exceptions..he plays in the mud, puddles.he is no different from any other little boy apart from the medication..
I know u are just doing the best for ur son, but at what expense!!!All of you seem to be suffering..my motto is, I would prefer Adam to have had a "normal, happy childhood" and enjoyed it, rather than wrap him in cotton wool and have a miserable time!!!
Again everyones situation is different,and this is our way of dealing with it, but it sounds as if this disease has taken control of every aspect of all your lives..Don't let it!!!easier said than done I know!
I honestly have to agree with the other moms we can only protect our children so much the rest is in Gods hands. We have a older child that is in the first grade she could bring anything home to him!! We just wash hands all day long!!You can bring germs home where ever you go. Good luck! I would let your son be a little boy!
We try so hard to keep things as normal as we can , what ever normal is! Quinn is going to start school in january after the swine flu shot ,if things are calm in his school.We are just so scared we have had a rocky road for 4 years ( just like everyone else).And just today we had to take him for urine test, which he's now in a relaps. when does it ever stop.
SHARONIRELAND . I did take everything you had to say to heart. Thanks to all support WE NEED IT.
Waylon is one of six kids so there is NO way to keep him from the "outside". I am soo new to this but I don't want this "disease" to own his life. I want him to have all the same experiences as the other kids. We are a farm family and he has been taken to cattle sales and been in the combine since he was 5 months old! Keep things postitive---
When layla was first diagnosedwith fsgs, i keept her and her sisters inside as much as I could terrified as to what she may catch, but realised that this was silly !
She is now on pred every other day and cyclosporin and is in remission and stayed there even when she had a cold and urine infection (no antibiotics).
She enjoys school, parks holidays and every other pastime a child should enjoy.
Even though cyclosporin is an imusupressant drug, you've still gotta toughen up the immune system.
Good luck
I understand everyones opinion. We give Quinn vitamins everyday . I guess i'm being paranoid right now. thanks everyone for the support!!!!!!
Quinnrenee, Bless you for all you are trying to do for Quinn....one thing I have learned very quickly is trust you heart....and I don't think you are being paranoid you are being careful....its hard to balance our children's needs with life....but what is normal is defined very differently in each family based on many things....I can't say what you should do to be normal because quite frankly in the lives of our children what is normal....Emmy and I will pray for you and your family to define what is normal in your family with much needed peace and happiness....take time for yourself and look at what you all need to add some sunshine to your life's....trust yourself....God did by giving you Quinn and always will.....God Bless YOU and your family!!!! We all feel what you are....and it is intense from time to time.....Let me know if I can help support you in anyway!!!!!! Blessings Melissa and Emmy
I'm so glad it's me who has this disease and not my children - my heart goes out to all you mums and dads dealing with this. Stay positive - it really makes a difference and it sure helps knowing we're not alone.
You got that right, I don't feel alone when i have all of you to talk to..Don;t get me wrong my hubby is there every step of the way, it's nice to talk to others who understand..MELISSASHUFORD thanks so much for your words, you are ALL in my prays!!!!!!each and every mom and child!!!!!
Ladies if I can offer any advice as a child who survived NS, one of the hardest things growing up with NS was the "guilt" of knowing I held my parents and siblings back from doing things because of my illness. Kids feel it, we know it. Try and let your kids be as normal as they can. I know it seems like the end of the world sometime and you feel tired and hopeless, I know too, I lived through it. But you will all get through this. This shitty disease took over 12 years of my childhood. It is insidious. But....I went on to have a beautiful, healthy adulthood and a very "normal" life after. 30 years later now and its back. This shitty disease that consumed my entire childhood. But..I am prepared now and unlike most of you, I KNOW that there is light at the end of each relapse because one of these relapses will lead again to remission. It exists. This disease leaves as fast as it approaches, with no rythme or reason. Keep the faith everyone.
My son too is 6 years old and was diagnosed July 2008. Last year we really struggled with what to do (keep him in school or out of school). All of the nephrologists we spoke with (here at Sick Kids in Toronto) and in the states, all recommended us to keep him in school. However, we did try to keep him home to try and reduce the number of relapses and to protect him from viruses. Unfortunately, this did not work, he relapsed while at home. Since then we have tried our best to keep him in school. However, challenging, because he is always getting a cold. :(
We continue to struggle with what is best. My son and the rest of our family received the H1N1 vaccine yesterday and feel a little better about sending him to school tomorrow. However, decided to limit after school activities. We continue to question our every move. Our son has frequent relapses and tomorrow is beginning prograf and we hope with this new medication, our son is able to achieve a more "normal" day to day life. Although, I am not sure what this is these days.
I wish none of us had to make these decisions.
Syma
We got the H1N1 shot last thursday, things are good. His neph. said to keep an eye on him for the next three weeks. He may start school after the new year.. ( scareed to hell)
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Hi everyone, my daughter's neph has informed us she needs to come off of the steroids and start a new med. He gave us the 2 options. The one medication requires weekly blood draws...I can't bring myself to do this to her...she's only 4 and is tired already of the needles. The prograf is what I'm leaning towards. Mom's...dad's who have tried or their children are currently taking prograf...please share your experiences. I can't stop crying...but Im praying everyday for God to help me make the best decision. Has anyone tried natural treatments and if so how have they worked? Beensoblessed mom!
I am not a mother of a child with minimal change disease/ nephrotic syndrome, But I have had the disease since I was 14. It has always been hard to find a balance between "leading a normal life" and dealing with this disease. I am now 24 and although it has been damn hard( I am currently in a relapse now) I will not let myself live in a bubble. I have been sick withe strep throat, various colds and viruses, and I even got pneumonia (don't know if that is spelled right?), but then on the other hand since I have been sick I have never received a flu shot and I have never gotten the flu! With this disease there are so many unknowns, some people go years without a relapse, for some it never comes back, others relapse every few months. You never know. let your son experience life, be cautious, but think about no matter how many precautions you took you could not have prevented hin getting sick in the first place.
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