Scared and confused mommy

• By lalo
• Posted October 27, 2009 at 8:26 pm
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Hi, I just wanted to respond to you, because back in the begining of our journey with nephrotic syndrome I was feeling alot like you. I can't tell you that every decision isn't labored, I labor over her every move...but I guess with time we've learned to swing with it all a little easier. I still get those meltdowns, but I have started to realize it's her life that I need to worry about, and that includes a valuable one with fulfilling experiences...and for us that has been going to school...playing outdoors, being a kid!

but i worry too, so you are not alone. some kind of plan will emerge...you will learn how to deal with this a little better every day...I know that I am learning a lot from the parents whose kids have been dealing with this for years and years...alot of them have been through the ringer and have come out okay.

I keep trying to remember that it's going to one way or another be okay.

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• By Morgs
• Posted October 28, 2009 at 5:13 pm
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Hi, we too know what you are going through - my daughter is 5 and we found out in late August she has FSGS after a biopsy. She was on prednisolone for 4 weeks before that but with little change she is now on prednisolone 45mg (now reduced to every 2nd day), she also had IV prednisolone, she is on cyclosporin too plus a tummy med and 2 blood pressure meds. All in all every 2nd day is 13 tablets and then 8 on the other days. Be prepared for changes in your child with the pred. all the things they don't tell you - like huge mood swings we lost out little girl's personality for a while but it is well on the way back it really took us by surprise but at least if you are prepared for it you can at least get in your mind its the meds not the child - also this may not even happen to your little guy. Morgan was always starving and we have never seen her eat like she did but that is all settling down now which is great. We can see the light at the end of the tunnel ready for the next challenge with this FSGS but like Lalo said it's going to one way or another be okay and it will. We cried so much and didn't know where we were at so emotionally drained but look we are all good now and it is really important that you let your child be a kid, get dirty, go to school, play with "well" friends. We are here for you and know exactly what you are going through but remember the most important thing is that you take a little "me" time and that will help you get through it. Take care. Love Trace

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• By Mikieg
• Posted October 28, 2009 at 6:42 pm
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While I see your concern, and it is definitely warranted, I would like to put you at ease by giving you my history.

I was diagnosed with the condition when I was 1. I've had a lot of ups 'n downs over the years but I've managed to live a normal life with the condition. As a kid I was hospitalized for several months with extreme edema and steroids would literally take months to "kick in".

Today I have exacerbation's but they are mild in comparison. As I got older I've become more sensitive to steroids and my entire episodes last about two weeks from the time I start spilling protein to the point where I start running a trace. This is accomplished by 20mg a day.

One thing you need to understand is that every case is different. While my case of FSGS is rather mild, other people I've known have had severe cases, so it's the luck of the draw.

The only consequence that's noticeable with me is my size, which is 5'4". This is entirely due to heavy doses of Prednisone during my childhood. I come from a tall family and skeletal studies showed that I should have been around 5'10".

I'm college educated and am a successful software developer. I'm also married, have two great kids and have had a pilot's license for many years.

In case you were wondering, I'm now 49.

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• By lovemykayla
• Posted October 30, 2009 at 2:11 pm
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Our daughter was diagnosed in July with MCD, shes been on pred since then and for the past 8 days has been in relapse and is not responding to the high dose pred. which is about 35mg every day. She was starving as well in the beginning, has mood swings, chubby cheeks and belly and is hairier. Through it all she is a very happy toddler, adjusted well with the meds, understands she can't have much sodium and has been very brave. We mainly keep her away from sick people, and use hand sanitizer like crazy!! This disease was very scary for our family as well, so I feel you. Pray much, live, laugh and love everyday. MIKIEG's story really inspired me! Our children WILL BEAT this disease! What really touches me is my daughter is the one with this disease and she seems the most ok with not a worry in the world! :)
3+

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• By alisan
• Posted October 30, 2009 at 3:10 pm
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Thanks for all your replies. It really helps to hear inspiring stories. I know every case of FSGS is different, but my neph told me that my son is in a class of his own. She said she's never seen a case of the collapsing variant in a child so young, nor of the caucasion race. She has no idea how he is going to respond to treatment (although she is optimistic). She's not going to leave him on pred longer than 3 weeks if he's not responding. They'll start Cyclosporine after that. She also said he will never go negative with his urine protein due to the scarring that he already has so there's no point in at home monitoring. My child acts perfectly normal which makes this diagnosis so much harder to digest. I am praying like I never have and trying to think only positive thoughts. Thank you so much for your support

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• By dink2061
• Posted October 30, 2009 at 7:10 pm
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I agree with Mikey. Im 43, diagnosed at 2, alst attack was when I was 14 up until 2 weeks ago. The best thing you can do for your kids is NOT make them FEEL they are different, they all ready know. My childhood was plagued with flare-ups and the emotional ups and downs are the hardest things to deal with. Yeah, the appearance changes were not fun either. My parents had 5 other children and we came from a HUGE family with lots of germs running rampant I am sure. I came out of all of it OKAY. It seemed at the time like I was doomed....but I am here today, fine, normal..yeah a lil on the petite side, but happy and healthy other then this new "attack" that came out of nowhere!! But thats how this crap is isnt it?? Try and live your life as normal as possible, it will make your kids feel a whole lot better too. Guilt is a horrible thing with this dsease and I remember always feeling "guilty" about being sick. Thankfully, my parents were strong but firm and let me be a kid when I was able.

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• By Kristie13
• Posted October 31, 2009 at 1:44 pm
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My daughter has MCD, and she is 6 years old. She was diagnosed when she was 2. She had been on cyclosporine for 2 years and she was in remission for over a year and a half through pre-k and kindergarten. I too had the same fears initially about sending her to school, but I knew even if I kept her home, she would still be exposed out in the community and by us being out in our workplaces and other kids in school anyway. As others have mentioned, we wish we could keep our kids in a bubble, but we have to let them be kids. I just had faith that God would protect her and he has. That was what has gotten me through the past few years--Realizing that it wasn't the meds, or anything that we did or didn't do for her, it's all in God's hands!!

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• By kalebsmommy
• Posted November 14, 2009 at 3:02 pm
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My son Kaleb was diagnosed this last July with FSGS, hprior to the biopsy, he was started onto prednisone, when that didn't seem to be helping they took him off and put him on cyclosporine. We chose to send him to school (K) and didn't see too much increase in illness. Sometimes fear tends to bind us. We need to be extra cautious but not bound by fear. I figured he would be exposed to things no matter if he went to school or not. Homeschool is a great option overall with this disease since so much school is missed. There are homeschool groups that you can get with to help with the socializing part. I hope all goes well fro you and yours. God Bless.

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