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New FSGS and Afraid

SoaringHigh
0 Recommendations

My 13 year old was just diagnosed with FSGS yesterday (biopsy 2 weeks ago) and it feels like our world is turned upside down. He is so swollen, has an infection and no energy at all. he was suppose to be playing Jr. High basketball in a few weeks. We had such high hopes that he had minimal change disease and not this but the prednisone didn't touch it. We are doing a 24 hour urine now as a baseline before starting Progaf and 2 blood pressure meds tomorrow. I'm just plain scared and have been avoiding this site I think because I don't want to accept all this.

Explore topics in this discussion:

Cancer CellCept Vasotec Proteinuria Minimal change disease Dialysis Lasix Prednisolone Furosemide Pain Prednisone Memory Edema Diarrhea

23 replies

Morgs

Hi, I know just how you feel, my 5 year old Morgan found out the same news about 2 months ago - she has daily urine tests and make sure you do those as it gives you and the dr. a good idea on where you are and improvements and relapses. My daughter is on prednisolone, cyclosporin, 2 blood pressure meds and tummy meds. about 12 tablets a day! She is going well although has had a relapse. It is such a stressful time in a parents life and my husband and I were just talking last night about how much this has turned our everyday lives upside down, once organised people not so now! Well I can honestly say I know how you feel! We live in Australia and this is the only support network we can find so hi from down under. Keep your chin up it will get better the more you start to understand the disease - although not good news. Our doctor said it was going to be a bit of a rollercoaster ride and now I am starting to understand what he meant. Take care. Thinking of you and your son. Love Trace

loveforaubs

Hi....Our 8yr old daughter was diagnosed with FSGS in April. She is on Prednisone, Prograf, Enapril, Diruil, and a stomach med. She has gone from 6.0 protein to 0.8 and we hope to get good news from her Neph. Dr. today regarding yesterdays lab work. Stay strong and try to not get too high or too low emotionally. We live in Virginia and have a great Dr.

SoaringHigh

Thank you Trace and Loveforaubs. It does seem to help to be connected to others that understand. I so appreciate the encouragement. Would you mind explaining about the stomach meds? My son has had so much diarrhea and is now belching alot. The dr. said he had lots of fluid in his abdomen. is the stomach med for these kinds of things? Also on the protein that you mentioned (6.0 to .8) is that from the urine or blood? How quickly did you notice a difference in the swelling after starting the meds? It is a huge embarressment to him at school. Thanks so much for your help with all the questions:)

I gave him his first doses of pills today...
Kerrie

KESMOM

Kerrie,

I too understand how you feel, our son was diagnosed with FSGS in April of this year when he was 3-1/2. Very scary time for us all. Things you may want to ask your doctor are what variant of FSGS your son has. You should also ask to have your sons cholesterol checked if it hasn't been checked yet. Our son is on stomach meds and we were told it was to offset the side effects of all the other medications he was on that were hard on the stomach. Be sure to read the info you get with your RX as some of the medicines shouldn't be taken at the same time as stomach medication. It is overwhelming, but educating yourself and writing a list of things you want to talk to the doctor about when you go are helpful. We also added a high quality omega 3 suppliment to our sons daily meds, it has helped lower the protien in his urine, lowered his cholesterol and we have dropped him from 6 bp meds some that were two and three times a day to two bp meds one in the am and second one once at night. We also believe in the power of prayer! Hang in there!

FTL

If it helps you, I felt the same way as you.... I just did not want to know more about this disease because it is so scary. FSGS cases vary a lot - the etiology is often times not known, so if something does not work to bring the proteinuria and edema down, then try something else. Ask a lot of questions of the nephrologist and make him/her think two moves ahead to stay on top of the disease.

suzikam

Hi SoaringHigh,

You are on top of your game finding this site so early on. It's a tremendous help -- a place where you can find "been there/done that" information and support. There's lots of learning involved with this disease. I am an adult just diagnosed, so I've barely made a dent on the learning. I wish you the best. A friend of mine who was on long-term prednisone therapy recently said something I keep holding onto when I need strength: We're lucky that, as humans, we're adaptable creatures.

loveforaubs

Hi again. Our daughter was diagnosed before she ever had any symptoms. She actually had a stomach virus and we stumbled across this. She never had any swelling or any other problems. The protein levels I mentioned are in her urine. The lower in the urine means higher in the blood, which is where you want it. She takes the stomach medicine to help with the prednisone. We were told today (6 months to the day of diagnosis) that Aubrey is now in remission with 0.3 protein in her urine, down from 0.8. He has lowered her prednisone to 6ml every other day and raised her prograf. Good luck and no matter how alone you feel, we are all here for you.

Boussaar

SoaringHigh, As an adult with FSGS, I can tell you that kidney disease really works on the energy level. If the kidneys are not working properly, it affects memory and makes you tired and sluggish. Has your son been given any meds for the fluid like lasix? This helps in removing the excess fluid and I know how awful the swelling is having gained 50 lbs of fluid when my kidneys failed. I am in full remission now so please do not be discouraged. There is light at the end of the tunnel. Your neph needs to find the right combination of drugs to put your son in remission. Kids with FSGS respond on an average much better than adults and I sure hope he is in remission soon. If current meds do not work, ask your neph about Cellcept. This drug has side effects but it is also very effective in treating FSGS. You mentioned an infection. What type of infection? Is this a UTI or some other. I did not have any infections even though my kidneys completely shut down. The drugs like pred lower the immune system so if an infection is already in place, I would ask questions regarding this. Just my thoughts. Good luck.

SoaringHigh

Thanks so much. We had to give lasix for the first time Monday and I think he pulled off an extra 400-500 cc over what his output is usually. It dropped his weight by about 2 1/2 pounds. Not sure if that is a lot. The infection is in his ear. Hes not had one there for quite a while till this summer. The neph did tell us that the low levels of protein in his blood (1.8?) would make him more susceptible and we honestly had been seeing that along with the eye swelling without knowing why for the last 1 1/2 years. Thanks for the info about the tiredness and sluggishness and the drug called cellcept. I'm so glad to hear that you are in remission and coping with this.
The worst part is seeing Andrew grieve over how he looks and his fears that he won't be able to make the basketball team:( It sounds so surface but to him in Jr. High it takes lots of courage to get up each day and face everyone. Blessings:) Kerrie

Boussaar

I am sure to a young man his appearance is very important. I am an old woman and I hated to go to work looking like a blow fish with my eyes swelled almost closed but it is so much harded for a teenager. They are suppose to be beautiful an and bullet proof. He is so young to have so much to cope with. I will remember him in my prayers. I have met a number of young people with FSGS and other kidney problems like NS and they are such a wonderful and special group of kids. I really admire them and their stressed parents. Cellcept is a great drug. I met a 13 yr old with NS and she is under the care of a research doctor at Duke and she in on a combination of pred and cellcept. She is doing great.

lamom

My son, who is also 13, was diagnosed with FSGS at the age of 11.

We feel your pain about sports and looks!!!! I will keep you and your family in my prayers.

My son went into remission about 8 months ago.

However, he was +1 YESTERDAY---so I am very stressed today. That is the first time we have seen more than trace in over a year.

My son's faith is very strong, as is his will not to be different than his friends.

He was very blessed with a strong support system after his diagnosis. However, we moved, and he choose NOT to tell his new peers. Over time, I have slowly mentioned to their parents that he was ill at 11 - and since he has never appeared ill, he has been okay with their knowing that he had a "strange virus, that turned our world upside down" We never mention that it could come back.

He, too, plays basketball and every other sport!

This disease is LIFE changing, but has made my son very strong in his faith and in his character. It has about killed me at times!!!!

Please tell your son that we will pray for him and for the compassion of his friends. We will also pray that he MAKES that team!!!

Just an fyi, we did not take cellcept, but leukarain....a chemo type drug. We still take vasotec (enapril, generic) and WE CHOOSE about 6 months ago to discontinue ALL STERIODS due to their side effects. THAT WAS NOT REC'd by our neph. But my husband is a physician and decided that our son needed an oppportunity to grow. (he has only grown 2 inches since he was diagnosed at 11)

Given his +1 yesterday, we may be back on the steriods soon. I pray not!!!

My thoughts are with you and that precious child you have on your picture!

Diane

SoaringHigh

Diane,
Waking up and seeing this note from u is like a huge blessing. Yesterday was a huge crying day for me and my husband was down as well. I think reality is setting in. But thank you for taking the time to share all of this because is so much reminds me of us. My son also has a huge support system at our new church in the youth. God seems to have steered him towards some different friends as well at school that he has mentioned several times are "good" for him. He is working out every day now for tryouts and I've told him to pretend like he is "Rocky" LOL! He had 2 weeks restriction after the biopsy and is so sluggish.

One thing I've noticed is that many parents here test urine everyday. We were not given any instructions like that. Also lots of children seem to be on steroids and immunosuppressives. Andrew showed no improvement on steroids over a 5 week period (while checking for Minimal change disease) so we are tapering him off of them. Is it a common thing to use a chemo type drug? Or was that because your son wasn't responding to others?

One of the great outcomes of this horrible situation is that our relationship is growing stronger and better. Things I used to get so upset about are less and I find myself reaching out much more than I have in awhile. He has opened up a lot so that is good. Again. Thanks so much. Blessings to you son and family!--Kerrie

SoaringHigh

Diane,
I also wanted to ask if children with FSGS ever communicate back and forth on this site or is it just parents. I was thinking about your son and how he must be feeling with the recent change in protein, especailly in light of being around peers that don't really know about the disease. My son might be interested in some emails back and forth with somone his age that understands. Not sure and hope you don't mind me asking. Thanks so much and I'll be praying for you to have courage and strength today!
Kerrie

amanda_gee

I got FSGS when I was 14, although at the time it was diagnosed as minimal change disease. It wasn't until I was 16 that I was diagnosed correctly with FSGS. It is scary at first and the journey is hard, but you can do it. Be there for your son, it's going to test his strength. Although it seems like the world is ending and nothing can get better, they will. When it rains, it pours, but it can't rain forever.

I became steroid resistant when I was 16 and was hospitalized throughout a whole semester. It wasnt until I started Prograf that I got better (I take way more medications too). It was a slow start to remission and it took a long time, but I got there. I had 20% function and almost needed a transplant, but I never needed it. Now I am at 100% renal function on my way to complete remission.

Please do not hesitate to ask any questions. It's scary at first, but keep your head high. In time, it will all be better and this will pass.

Be strong and best wishes
Amanda

SoaringHigh

Thank you Amanda! You must be my angel of hope today:) I'm going to share these things with my Andrew and my husband and I believe it will give us some courage to do as you mentioned in the other post and hold our heads up and not be afraid to get wet. you're right that surely it cannot rain forever...although sometimes it does seem to flood.

Someone recently mentioned your story on my blog and I had wanted to try to find you today on this site. I am amazed that your kidneys have begun functioning again considering where you started but it gives me hope. I can just say thank you for being willing to help others go through this!

Several people have mentioned steroids but they said Andrew is steroid resistant. I don't know why. At this point we don't know why the facial and abdominal edema is getting worse. It seems that since he was diagnosed with a problem 6 weeks ago his swelling is much worse even on a low salt diet. We gave him a lasix yesterday and it didn't have much affect on his urine output. I used to work as a nurse and giving 40 mg of Lasix should have produced more urine.

I'm going to go pray for today... patience, hope, courage and healing and the grace to show much love to my family. And then I'm going to try hard to be patient and wait on the Lord. Blessings to you Amanda, on your health, your future and your family!
Kerrie

amanda_gee

Thanks so much! And a bit of advice, it took forever to find a diuretic that worked for me really good. Lasix, furosemide, and hydrochlorothaizide do not work for me. Loop diuretics are the only ones that work, and they work fast and are powerful. I take bumex.

Good luck
Amanda

Twobarz

God Bless you and your family. Do not be afraid, FSGS saps the energy right out of you. I was diagnoised 3 years ago, at that time my kidneys were only functioning at 25%, it appears I have had this for some time. I did like you, turned to the computer, research, research research. I found diets, learned to control fluid intake and still felt miserable, had many infections and are still and always will be easy to get infections. THIS IS A LIFESTYLE CHANGE. Your son is 13 and with your help and support, love and grace of God will adapt. I was 60 yrs old when I found out and really set in my ways (I'm german/irish) but once you accept it and work with it, be confident and your son will respond to your attitude. I am currently on dialysis and haven't felt this good in many years. I was always afraid of what the future would be. Don't be his future will be great, maybe there will be acure in his lifetime, keep the hope and live each day with love.

SoaringHigh

Wow, thanks so much for the encouragment to accept some things. Today I've felt sad and wiped out but I am making those changes. It does seem easier to do what I need to do instead of fighting it and spending too much time saying why him?? I guess its a matter of changing what is normal for us. I'm learning to cook differently and more often so he doesn't eat processed food. I followed someone elses advice and started a running date list of illnesses, meds, changes, er visits etc. so I will be more organized when at the doctor visits. I found some alternative low sodium drinks for him at the store today. It is taking so much more time but my role is to do what I have to do to make things smoother and I will surely try.

It sounds like you've had a rough go of it but are living a full life anyway even on dialysis. That is what I want for us and I believe that your right that it most likely will start with me and my attitude. Thanks again for your honesty and willingness to take some time to post!

lamom

Good morning! I read your response the day it came in but unfortunately, it was on my phone. I am the worst at "hunting and pecking" through responses!!! I apologize that I am just now getting back to you, but you and your family have been in my heart and in my prayers.

I am going to respond to this message first, then go to your next one.

It is interesting that my son did not respond to steriods either --- initially. Once they confirmed FSGS through a biopsy (spelling?), the nephrologist, (Samir EL-Dahr, MD of Tulane, Children's Hospital) mostly spoke to my husband. I am not sure the options that were given because I was too emotional to make any logical decisions. My husband is a very calm, quiet man. The fact that he is in the medical field made more sense for him to handle that part of my son's care.

Once my son was on the drug, (leukaran) I would stay up until all hours of the night reading on the internet about it. SCARY! I guess they all have side effects; however, I knew that I had to trust the decision that both the neph and my husband had made.

The immediate side effects were almost nil. It was not your typical chemo drug. It was just a small pill, taken orally. No real hair loss to speak of. While he was taking it, we had the added benefit of decreased swelling from the steriods (they were tappering at the same time). It was imperative that we watched his white blood cell count closely. He went WEEKLY for blood work and became a favorite at the hospital lab. He was a true trooper!!!

Each week, his numbers (albumin etc) improved and we celebrated!!!

However, at one point, his WBC fell so low, that he had to be isolated from others. He felt fine --- but we had to worry that he might get sick and catch something . When his WBC was too low, they would suspend the leukran.

This required weekly faxes and phone conversations with the neph and his nurse. We do not live in the same city as the neph.

After 5 months, we completed the course of leukran (there were many weeks when he did not take it) .

His numbers continued to improve and the neph continued tappering the steriods. At some point, he stopped tappering them and left him on a 3 times a week dose --- at that point, he almost looked normal again!

We were blessed because we caught this illness VERY early and in my opinion, we aggressively treated it. I actually have never seen anyone speak of the drug that at my son took. However, I do know that our neph uses it often.

One thing I would tell you is to be a bit protective of the "details" that you share with your son's friends. To this day, I will run into someone that I have not seen in a while and they will ask me "how my son's cancer is doing".

Oddly, as I sit here and write these memories, I realize how much of it that I have forgotten. I was blessed with an amazing support group ---some of which prayed with me, some of which cried with me, some of which drank wine with me. You, too, will get through it. For some reason, I feel like your son may be a bit like mine --- competitive and positive. He, too, will figure out how to deal with all of the changes. My son is a much more compassionate child than he would have been had he not experience this. He always takes up for the "underdog". I think he believes that we all have a cross and his is this damn kidney disease.

I will talk to my son about talking to Andrew. (you mentioned that in your next post). One encouraging thing that you can share with Andrew (I am sure my son will NOT tell him this) is that my son earned the award of ATHLETE OF THE YEAR the year after he completed his treatment. He also made ALL STAR baseball team at the end of his treatment. It was not a sympathy award, as we moved to another city 4 hours aways and opted NOT TO TELL his new peers.

I am sorry that you are going through this and will continue to keep Andrew in my prayers. Please let him know that if does not make the team this year (if his albumin is real low, he is mostly likely very tired), that once he gets back to normal levels that he will pick it back up -- right where he left off. I truly believe sports are wonderful for my son. HE PLAYED FIVE LAST YEAR --- one of which was TRAVEL, PREMERE soccer!!!

I share all of this with you, not to brag, and hopefully not to bore you, but to encourage Andrew. This disease will change your life in many ways, but it does not have to take all the things that matter away.

I will talk to you later.

cgalitski

Hi. I have a 14 year old son. First off I hate seeing his facial features and his body go through such a change, when he is in a major relapse. It doesn't even look like my son sometimes. And it bothers him terribly too. We were diagnosed with FSGS last January after a 13 year journey. He has been on numerous meds through the years. His last one was Rituximab, which was weekly infusions. It showed some improvement. He suffers also from a lot of abdominal fluid. He took lasix and Zeroxyln, which really can get water from a stone.

He is shy, so has never been on here chatting. I found a great friend on here, who also has a son.Who has so many things in common with my son. I wish he would talk about it. He bottles it up. And that bothers me. He is always tired, doesn't play sports. But loves gaming online! LOL.....I feel your pain so much. Stay strong!

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