slow response

• By Crowley
• Posted March 10, 2008 at 1:09 am

Hi Amy.
Reading your post feels like I wrote it. My daughter, Mackenzie, who is 3 years old and was diagnosed with minimal change on January 15th. She has yet to respond to the steroids. She has been hospitalized on 4 seperate occassions since her diagnosis. We are scheduled for a biopsy this week but she was just diagnosed with the flu yesterday so we may have to delay it. This entire process has been frustrating to say the least.
Mackenzie is also very different than before she started steroids. She doesn't play at home anymore. All she wants to do is sit or lay and watch TV. And more recently EAT. Her appetite is crazy from the meds.
I don't feel that anyone will ever understand what we are going through unless they live it. Eight weeks ago her nephrologist told us that she would most likely respond to the steroids in 2-4 weeks and we sit her today with no change and many hospital stays later. The day to day observations of our children with this syndrome in and of itself is so stressful. I have yet to find a way to be able to explain what it feels like to watch my child struggle everyday. I try to use my friends as outlets to step out of the minimal change syndrome zone if even for a brief phone call about how their day is going. I know they will never understand because I wouldn't have believed I would feel this way if you told me this would happen 8 weeks ago.
I think this website is a fantastic outlet and a great way to communicate with others that really know what we are all going through.
If you want to talk you can email me your phone number. My email address is shanriz11@gmail.com
I really hope that Bunny starts to respond soon and that you find some peace in this process.
Much luck and caring thoughts,
Shannon

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• By tr9736
• Posted March 10, 2008 at 10:09 am

My 2 yr old son was diag on Jan 7 -- after what seems a long journey so far- all of 8 weeks!, he finally responded to pred last tues, we started tapering (with just one dose in the morning) for a few days, then as of last thurs started alternating days. Yesterday (3 days later) I noted 'trace' levels on the stick -- now am freaking out so I bumped the dose back to every day again (gotta call the neph ASAP). I guess all I'm saying is that this seems like nobody will really know what's going to happen from one day to another and from child to child..... I also am fearing this may mean steriod dependency... when I think of the long road ahead, I cant even explain my feelings -- I have not come to terms with all this either and am still a sobbing nut-case everytime I stop and think about what is happening to my little boy -- he too doesnt look ANYTHING like himself and I also (see prior post re: lethargy) was very lethargic however, I'd like to report now that he is ALOT better as far as attitude and activity level - not 100% but alot better and that started about the time he measured negative, still on the high dose of pred. doesn't make any sense to me... only guess it might have a correlation with the low potassium he was dealing with... who knows.

I too have trouble with friends and coworkers asking 'how's the little one'... I almost just say "he's doing better' and let it go, because I don't think they understand either. Only when he's in the hospital do I go into more detail. I tried educating them all as much as I could being that I didnt understand any of this myself at first.

I feel your pain -- we are all living it and thank GOD we are here together to lend a bit of moral support. THANK YOU ALL

Tania

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• By kshearer
• Posted March 10, 2008 at 10:34 am

Wow! It never seems to amaze me how much I have in common with other parents on this web page. I am sorry to hear about what has been going on. Please don't feel alone. We are all out there and feeling many of the same feeling you are. I felt betrayed by many of my friends when this all started. I wanted them to help me understand, to learn all there was to know about what was going on. I couldn't understand why they were not as concerned as I was by my daughters changing body. My little angel is 6 years old. Then a friend said that all they heard me talk about these days was Mary's illness. So I have tried to talk about other things. Mostly because dwelling on the illness was not having a good effect on Mary. She was becoming withdrawn and depressed everytime she heard me talk about it with other parents. She also had to sit and listen in the Wal-Mart when, pardon the expression but, "fools" would stop and ask if she was going to get "better". So Mary and I made a deal. We do not waste time and effort on such comments. We simply say we are too busy to talk right now and will talk to them later. Over all this has changed the tone in my house.

As for her mood swings. This has been pretty normal for us. The prednisone either makes her sleepy or moody or well almost crazy sometimes. We like to say her skin is paper thin these days. I can look hard at her for not cleaning up her room and she will sit in the corner and cry. I just try to be patient but fim because this is not a sprint but a marathon. There are lots of different obstacles for you to tackle to finish the race.

As for the steroids....my daughter is steriod dependent. We have had her on prednisone from the beginning. Her body seem to finally be getting a little more adjusted to it, or maybe we have finally figured out how to handle her mood swings.

Please feel free to e-mail me anytime you need a friend who understands, You are in my prayers.

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• By AbbyMom
• Posted March 10, 2008 at 1:07 pm

Hello, Thanks for being so honest Amy and all the others who have posted. It truly is comforting to know that others out there going thru the same thing. We have been dealing with NS now for the last 6 years. Some days are good and I feel like I can handle his mood swings and all the other problems with the NS. Other days it feels like I am barely hanging on. As much as our family and friends try to help, they really don't understand either. Some of the comments they make in trying to help can be very hurtful. I am so thankful to have this site, reading more about NS and how it affects other peoples lives. The hardest I have found to deal with is the personality changes. I can totally relate to the Mom who wrote that you just have look at your child sternly and she will sit in the corner and cry. That happens to us every day numerous times a day. It is so hard to know how to discipline them, how does everyone handle the crying and mood swings? We have told our son about the effects of prednisone and that it can make him not sleep as well, eat more, and angry or sad more easily. I don't think he know what to make of it some days, when the smallest thing will set him off crying for an hour. It can totally ruin our day and plans. Makes me not want to take him out anywhere for fear of the meltdowns. It is also hard on our other son who often feels that he has to walk on eggshells around his brother. He feels like his brother's crying is his fault. Our Son is considered Steroid dep and has been unable to get off pred now for the last 2 years. We were told as long as he responds to pred that they will still keep him on it. Thanks to everyone who posted, it has been so great to know that I am not alone either in this fight. Best Wish to you all.

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• By Beth75
• Posted March 11, 2008 at 9:51 am

Hi Amy,

I can't imagine being a child and going through all this, it's hard enough on an adult, especially when I know how to control my feelings most of the time and have been trying to be conscientous.......a child would not be able I think to separate and understand all their feelings.

The first two months for me were the hardest emotionally w/the prednisone (for uncontrollable crying, mood swings etc) , I think your body is just shocked by all this and so are your emotions and hard to understand how you feel and relate to others. I am planning on going to therapy soon, I need someone to help me sort out my feelings of helplessness and dealing w/this illness. Also, I find that while people are kind, they do not understand and cannot provide me with the empathy I need b/c they have not gone through something like this themselves.

I too have had a slow response and have been on pred for 7 months now, though adults tend to take longer than children to respond (also I belive I have had this undiagnosed for 7 years).

Is your daughter now in remission? Sorry I could not tell from your post.

Wishing all health and happiness.

Beth, 32 ~ MCD

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• By LauriJean
• Posted March 14, 2008 at 10:46 am

Hi Amy -

My son was dx at 2 years. By 4 he was able to understand some of what was happening to him. I found it helpful not to infantilize him or allow the nurses to do so. It helped him to call the blood pressure cuff a blood pressure cuff, rather than a "hug" like they wanted, etc.

That said, at 4 they still can't grasp what's wrong and just know a lot of the time they are hurting. We took photos of my son and although that was painful it was helpful as a record of his swelling and in later years it was useful in explaining to him why were were so devout in low sodium diet and medication compliance. Looking back on them he can barely remember being so bloated and will often still insist at 9 "that wasn't me".

Taking photos was also a way to help him heal, and develop some sense of body identity. Self image and esteem get rough for these kids. Eventually their scars and experiences become badges of accomplishment though of you educate them at their developmental level. I explained everything every step of the way with my son and I honestly think it's a disservice not to. You don't want to scare your child, but the fear of the unknown and why people don't talk about their illness in front of them, etc. can be more damaging than a healthy dose of concrete fear. Kids have great imaginations and when they are ill that imagination can lead them to very dark places is they are not educated in the realities of their condition.

I remember earlier this year my son showed a kid his medport scar which keloided to about 2 inches long and 1/4 tall. He was so proud that he had made it through treatments and was able to attend school. The kids saw it as something gross and started teasing him about his "boil".

Noone can really comprehend what you're going through unless they've been there. I know friends and family just didn't get it, but they don't deal with the everyday. If you're like us, they would see us once or twice a year on a rare good day when we could be exposed to others without fear of an infection or when he was doing good. They don't see the gradual changes, or the horrible times. We live them daily.

This is where our photo diary came in handy too. I put together a small collage of images of him at 2 with a broviac hanging from his chest while in diapers, at 4 when he was so bloated he weighed more than a 10 year old and we couldn't see his eyes, at 7 when he got a clot in his heart and nearly died and they diuresed him from 90 lbs to 58 lbs and he had to be in a wheelchair for 6 months until he regained his strength. It was only after they saw these phsyical changes documented in photos that they could truly even begin to grasp what we'd been through.

It also helped Damien, and yes, he cried a lot looking at those photos, and some he couldn't believe were him, but it serves as a remind that he is STRONG and that he can get through ANYTHING. That he's brave and sturdy even when he feels weak and small.

I can't tell you that your child will be happy, but I can tell you she will have one of the strongest spirits you will even encounter and that children are very wise. Listen to what she needs, and provide it even if it seems "too old" for her, or something you'd never want her to exposed to knowing. This is her life for the long haul and how you handle it at the beginning will shape how well she is able to cope over the years.

It is important to stress that your chlild happens to have kidney disease, not that she is damaged or broken, but that she has a challenge just like some other people have challenges with speech, or doing math. This is just her struggle. Embrace that she's special not "different". It all seems like semantics, but it really can shape the child having a positive view of themselves or a negative view of the entire world.

I wish you well.
Lauri Jean

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• By kkrajny
• Posted March 14, 2008 at 12:21 pm

Wow, how much we all can relate to the same topic, it is sad, but yet relieving to see other people know exactly what I am going through. My daughter was diagnosed almost a year ago in April of 07. We are getting lower and lower on the steroids. We are add 3ml currently every other day. And it seems as though the more we lower them, the worse the behavior gets. We go in next week for a check up again. It took a while for her readings to go down, well a good nine months and cytoxan (8 weeks into it) finally gave us more positive readings.

And then to hear the other mom say, we are going to have to increase the steroids again, I can relate! We were on a roller coaster for months with that! We are getting near the tappering off stage, just as long as she can stay negative/trace we will be there!

Any tips though on the behavior, is anyone else having issues with that? Where it seems as though a light switch going on and off!

We went out to dinner last night for a family meal and my mother apologized to the staff about my two year old, she seems so irratable at times. How can I tell though if this is the steroids or the age of 2?

Thank you all for being there and relating to all of this!

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• By ness1
• Posted March 29, 2008 at 5:07 am

Hi all.
Reading all these post just bought back a flood of emotions that i have not felt in a long time. I think i am down the road a bit from all of you in the sence that Alex has been healthy for nearly a year and we are starting to see the light ( he is now nearly nine ). But going back afew years that light was no where in sight. At three ( on Mother's Day ) He had his first attack of Nephrotic. For the next 3 years it was one endless day of testing, medication, worring, doubting,blaming and resenting.
He was on and off steroids for 3 years and the emotional changes and physical changes were huge.
I only becane to see my son's true personalitiy again a year ago.
After he body becane to reject the steroids the doctor finally put him on levimasole which is a drug used to treat colon cancer. He never had any side effects and has been in remission for over a year. He is finally losing weight and talking more and doing better at school.
I must mention that In between all this Alex had Two tumors removed from him ear and is now deaf in one ear and had a astrasitoma ( brain tumor ) removed 2 years ago.
There was a stage there when the renal , ent and neurosurgeon were listing his body parts in order of preferance to be saved.
At this stage the world could not get any worse. Alex was now knowen as the sick child by everyone. People look at him with different eyes and treat him differently. My daughter who is 2 years younger finds this so difficult to accept adn offends pretends to be sick in order to get attention.
We both are seeing a clinical physcitrist as alex began to realise that this does not happen to everyone and why him, what did he do wrong, did god not love him? these were only a few of the 100's of questions i could not answer.
I go to speak to someone as well. I have a great network of friends and family but because they know our history there answers to my emotions are always "well that's to be expected with what you have been through"
I have fear that these illnesses will return and want to wrap him in cotton wool and never leave the house.
Because he is now "healthy" I now have to start partenting him as a normal child.
My daughter whi is now 6 resents her brother for all the attention that he gets.
My husband and I find it hard to talk about anything other than the kids because it dominated our world for so long it became normal.
But.... In light of all this we are all still here together and doing well. This disease ( and others) are life changing and not just in the short term but it plays with your mind. Never feel bad about those feeling and speak to proffessional if needed. We have come to the light and it is beautiful, warm and bright.
love to all
Ness

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• By AmosB
• Posted March 29, 2008 at 10:00 am

OK- Where to start...... as to talking to others it was very hard for me. I remember standing at the park one day when we were "out" between albumin/lasix treatments (with a broviak all sandwich bagged up under her clothes!!) and how this one Mom was sooooo complaining about how she couldn't get her child into the right preschool. I just want to vomit on her, I literally got sick later. I wasn't even sure that my child was ever going to be able to go to school at ALL.

My family only wants to understand what they want to learn about FSGS which is not much. Most choose to not absorb the reality of it. They say they are sorry...we have chose to see this as our new path in life. We know what our future holds. My sister works in the medical field and so I am lucky to have her for my reality check.

We were always honest with our daughter. We told her she was going to get an IV and yes it would hurt. I had a nurse tell us that was wrong and I remember turning to her and saying "She can count on us to be honest with her and not trick her into to getting things done!"
To this day she will still kick, scream and tell us she doesn't like it but she calms down and gets the job done. We even had to go out and get a manual bp cuff because she stopped taking her bp with the automatic one. I wrote a letter to the hospital complaining how it was traumatizing her and that they should have at least one manual cuff available!!! We got a nice thank you with a policy change,manual cuffs on every floor at the children's' hospital, it was a small step on my part.

We have explained that her medication makes her different but that we still expect her to behave the best she can. She can write her name so she signs herself into the dr's appointments and to get her meds. They think it's cute, I see a child with a life long condition who will have to learn to advocate for herself by having her sigh her name it gives her a sense of power.

She helps get her meds together for the week and we discuss what kind of day it is...pred. or not...

Best of luck to you for only those who have gone before you can understand the hurt that you feel
seeing your little princess "change". But don't forget she is your little princess...
A

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• By Rowansmum
• Posted September 7, 2008 at 4:50 am

Wow It is amazing to know Im not alone in the confusion of drugs doctors and just not knowing if Im doing the right thing for my son or not.
We live in a small town in New Zealand and yes the endless having to try and explain what a kidney disease is is hard enough let alone which bit of it effects Rowan(6)
My most used line is "we are staying open to a miracle cure".
Rowan was on pred for just over a year and I really noticed the difference when it was stopped (it just didnt work)and although Rowan still is 3++ on his protein spillage he is a lovely boy to be around now, he used to have such rage which he used to direct at himself and the tantrums......
Rowan was also on cyclosporin(which also did nothing)and to watch his hair and eyes change color and the all over hair growth was really hard and now Im watching it all change back again.
I thank you all for putting your stories on this site keep it up

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