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Can anyone give me and help or advice! My 15yr old daughter was diagnosed last only last week. I took her to a&e because her legs were really swollen (never happened before). she was admitted and told she must go on steroids 60mg for 4 month minimum. They are doing a kidney biopsy next week suspecting FSGS. All I keep getting told is it is going to be bad news because of her age!
She is devistated! Like all 15yr old she is very conscious of how she looks. She's already blown up like a balloon with the fluid and now she's going to hit with side effect of steroids.
No one seems to have a clue what's going on. I'm scared half to death. They are talking about transplants and dialysis
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I have been diagnosed with Nephrotic Syndrome at the age of 16, which I read on the internet the FSGS may lead to. My case may not be as dangerous as your daughters or it may be much worse - it all depends on case to case basis and while you need to prepare for the worst,keep positive. I hope that some of my experience will help you:
First thing you need to know - people are not dying due to kidney malfunctions and diseases anymore. It's complications in result to treatment which are the problem. What you need to do is to make sure that your daughter takes her medication as prescribed and NEVER misses her dose. Try to reduce the salt intake as much as you can - this means that your daughter cannot salt her food beyond what's already in it, and you should reduce whatever amount of salt you put into meals in the first place.
Oedema (swelling) can lead to very serious skin problems, which I have experienced myself. Some advice -if the doctors will put her on duretics (water tablets), she may experience severe cramps. What worked for me was either standing up immedietaly and pushing pressure on toes of the leg that is cramping or have someone push them towards the upper body. Do not hestitate to mention this to her doctor though, because her dose or medicine may need to be changed.
When I was transported to the hospital for the first time I was already obese - this is bad and will make it harder to recover. In order to prevent that take your daughter for daily walks, at least 30 mins if she can do it. Those should help with the swelling and keep her up in shape. I say at least 30 mins because your daughter may notice huge drain in energy either due to illness itself or her medication. It's normal, but you need to encourage her to overcome this. Being in shape is half way to recovery.
Do not be afraid to speak to her nephrologist - he/she will know best what is going on and they will answer any questions you have. I know how stressful kidney problems can be, try to make a list of questions as they come to you and bring it with you to the doctor. It's easy to forget.
Finally, the most important advice I can give you -
DO NOT ATTACH ANY INFORMATION YOU READ ON THE INTERNET TO YOUR DAUGHTER - EVERY ILLNESS IS DIFFERENT. She will be ok, you need to trust your doctors and support your daughter as much as you can.
If you need any more information now, feel free to ask and I will try to answer best to my knowledge.
Thanks for the info. It's nice to hear from someone in the same age group. Did what you do with your life change much? How long does the odema last?
She is normally quite active and out going, she is now refusing to go places because her legs are so big. She is really, really conscious of people looking at them. She always had compliments on them before because they are so long. Now she feels the attentions she gets is going to be negative.
By no means take my case as any kind of indication on how your daughter recovery will progress, but here is my story.
I was rushed to the hospital with liquids pouring down my legs. I've stayed there for a month, was put on strong duretics, in first 4 days in the hospital I lost 15 KG of weight - that's how much liquid I had in my legs, and it was a very small portion that dissapeared in that time.
2 weeks after getting out from the hospital, I started college. After a month in college I was not getting better and I was put on Tacrolimus, which is a medicine most commonly used with organ transplants. The side effects hit me very badly, and in addition to the feeling of tiredness and lack of energy which heavily impacted my ability to focus and learn, I started to vomit and suffer from diarrhea on daily basis. I was forced to drop college for a year. In that year, I had up and downs, but managed to come back to college and finish a full year of it. Sadly, my condition worsened at the end of vacation and I entered my second year in college with huge legs from oedema and a small wound of broken skin from which liquid was dripping. Because my legs were still swallen, the wound didn't close and got bigger. The wound got worse, oedema got worse and bymas that year I couldn't my my jeans on, because my legs below the knee were bigger than my thigs (I am an obese guy). The wound wasn't closed. got bigger, a few more appeared and by January I officially had leg ulcers. Google leg ulcer and you will know this is not something that you would wish on anybody. For 2 years, I lived in constant pain, because the ulcers didn't close and were inflamed often. Living with constant pain is something that cannot be truly described, trust me. Now my legs are healed, although I will have huge scars for the rest of my life. My kidneys are better and I am beggining to reduce the doeses of medicine I take.
What you read above is a story of, what I have been told, an extreme case. I've been not showing imrovement for a long time and I was under threat of kidney transplant too, however, in the end I am ok.
I must admit that most of my hard recovery was due to me being obese and not moving due to pain/ lack of energy.
As I've said in my previous post, your daughter needs to move daily. You need to explain to her that she is sick and anyone defining her by the side effects of a terrible illness is not worth her time. If this doesn't work, you have to either (a) get her to move up and down the stairs, if you have them in your house, for however long it takes her to tire, at least twice a day; or buy her gym equipment to train at home, e.g. thread mill or execrise bicycle.
She can also help in reducing oedema by not standing or sitting in a chair if she is at home. What is best is laying down in bed or in a armchair and having her legs propped up on another chair + pillows so her feet are above her thighs. What my nephrologist also suggested was that I reduce the amount of water I intake daily to 1 liter. DO NOT DO THIS WITHOUT VERIFYING WITH YOUR DAUGHTERS NEPHROLOGIST! I am not medical expert and have no information about her blood tests etc., so ask your doctor and they will tell you if she should reduce fluid intake.
Going back to your daughter being self concious about her condition, it's a bit hard to me to give you adice as I am a boy and couldn't care less about what others think about me. What I can tell you however, is that you should be there for her as much as you can, get her to interact with her friends too. The illness will affect her as much as she allows it. If she is going to stay in the hospital, I advice you to spend all time you can with her, becaue NHS hospitals are true hell. Again, this may be different for her, because she is a girl, however, I was put in a room with 3 old men, one of which was dying and didn't recognise his family. another 2 were moaning in pain whenever they were awake and all three of them were not able to go to the toilet so they were soiling themselves in bed. If you can, try to pressure the nurses to put her in a room with girls similar age and condition. It is not always possible, but it's good to try. I don't know which hospital she will be in if she ever gets put into one for longer time, but make sure she has access to books and or wifi if she is addicted to internet so she has something to occupy herself with in there.
Sorry for unloading this on you, however, I will say it again, most likely your daughter will never experience what I have, but you need to be ready. Keep her company, explain to her as much as you can and encourage her to go out and exercise, because there is nothing wrong with being sick. Do not be afraid to pull her out of school if she gets bad, because her health is more important than education or friends. Talk to her doctors as much as you can. They will reassure you more than I can, because no matter how bad she is, they've helped people to come out from worse. Nephrotic Syndrome is an annoyance comparing to what other people have to be treated for.
Sorry to read your letter. I had the same symtoms almost three years ago. GPs and hospital had no idea. But then as my GP said 'it is easy to be wise after the event'. I was really ill and in hospital on dialysis for three months.
Three years on I have virtually no symtoms or drugs. Get your daughter to reduce weight and have a normal diet and life, and don't worry it will get better. Do as the specialist advices you to, and don't worry this is now fairly common, 1 : in every 5 will have this condition at sometime in their lives.
It is frightening and bewildering but it will get better. Regards, E
I feel for your daughter. I started around the age of 16-17 too. I suppose they will have to wait intil the biopsy to hopefully know better. I really think that all of us are different. You be strong and positive and that will encourage your daughter to fight all this. As i know for me doctors had to come to the conclusion that depression made my NS worse which resulted in me having a hip replaced at the age of 22. Please be strong and and get your daughter to see this as a down in life thatcan and will go up if she wishes. I know for a fact how daunting, discouraging, sad and painful this all feels. Hope you feel the strength to go through this xx
hello! I'm so sorry to hear this that your daughter has been diagnosed with this actually i'm 15 too and I have been diagnosed with this since I was about 3 so I have experienced a lot of things. Don't be scared I know that is easier said than done because this is your child and you just want the best help for her and I understand. Right now i'm actually in a relapse sadly and if you don't know what that is it is where the kidney leak protein and your urine with get really dark and maybe foamy you will probably notice on her swelling starting in her face and usually couple days later her stomach,legs, feet,hands. When they talk about the dialysis and transplants and other things don't be alarmed they have said this stuff to me it just depends on how bad and she might have had this for awhile but hasn't had symptoms if you can ask about different medications she could try first im currently on cellcept 720 mg 2 times a day and now because of my relapse I take prednisone and my body is so swollen right now and i'm heading to the children's tomorrow. Also I have a bone disorder because of the medicine and cataracts also because of the medicine. Try and to push fluids a lot of fruit to help not a lot of salt intake so she isn't on the medicine for long and ends up with the same problems. If you can check her urine with a dipstick to make sure her urine isn't getting darker. Just follow your doctors order and try to drink a lot so she can feel better I know how it feels. Again i'm sorry to hear this but I hope she starts feeling better and everything comes out well!!
Hi Laura, My 15 year old son was diagnosed last year in the middle of his GCSE exams. He swelled up enormously and was admitted to hospital for 2 nights while they got his fluid levels down & medication organised. this came completely out of the blue and was a very stressful time for us. He had to do some exams in hospital & some at home but did get back to school to finish them. He was on 80mg daily Prednisolone reducing to 60mg for 2 months. Strangely instead of putting on weight etc he has continued to lose weight since being on streoids. No one seems concerned about this but he looks anorexic now. He has relapsed several times and is now on alternate daily steroids to try to prevent this. As we speak his protein levels are rising again after a cold so he may need to go on higher dose again. He gets very angry and worried abouth all this. Everything you read tells you that children grow out of this by adolescence but this is not going to be the case with our teens. We have a lovely consultant who is contactable by mobile if we need her but we are obviously concerned for his future health. He is also taking part in 2 trials with the hope that better treatment will be available for future sufferers. Tell your daughter she is not alone with this and neither are you.
We have to be strong for them and encourage them to live their lives normally despite the side effects. best wishes
I've noticed that you've said that your son is getting very angry and worried about his condition. From personal experience I think you should monitor his anger issues - I've had the same due to the steroids as well. If his anger seems unnatural, speak to your doctor about it.
I am so sorry to hear about your daughter. Ok so I promised I would write to patients on boards when I got better. If it wasn't from these boards I wouldn't have found the strength or information I needed to get better .
I was diagnosed with nephrotic syndrome in 2012 .I had a biopsy and went on steroid treatment (predisolone ) a high dosage to start with then the doctors reduced the amount slowly after a few weeks.
I recovered extremely quickly the first time (after 3 months of steroid treatment ) .My mum also put me on a super strict diet of no gluten,eggs,dairy,red meat,saturated fats, alcohol ,fizzy drinks ,milk and sugar and definitely no salt (salt is the devil). I was allowed eat fruit ,veg , rice ,water ,fish and small chicken ,turkey and lean pork . I lost so much weight on this diet but I felt amazing.
My doctors reduced me down to very low dosage of steroids and took me off the meds I also stopped my super strict diet .
After about two months of eating whatever I wanted I realapsed and I had to go back on steroid treatment for over a year .
This was the worst time of my life. I didn't go on my super strict diet because I didn't believe in it because I was so upset that I had relapsed. After months of being on steroids I had serious side affects . I became extremely moody and I had really bad highs and lows . The medicine played havoc with my endocrine system ( it used to make me feel like I was on drugs and super hyper at night and tired all day )
I also got really bad thrush in my mouth, throat and vagina on a monthly basis . My eyes used to go blurry .I had so many teeth problems while I was on the steroids. My bowl movements were so bad I was either constipated or I had diaroea ( pooped my pants once which was not ideal 🙈??) Oh and to top it off i looked like i was 9 months pregnant and my face swelled up to the side of a watermelon ( its called moon face) Anyway my list of side effects could go on and on .
I went into remission after a year on steroids but unfortunately I relapsed again after 4 months .
The 3rd time around I decide I could'nt do a year of steroids again I felt like i would have rather died than go through that again .
My mum convinced me to try the strict food diet again in conjunction with the steroids but then she said once I go into remission to continue with the diet . I did what my mother said and guess what it actually worked . I was only on the steroids and strict diet for 6 months when I started to drastically improve and when I came off the steroids I continued my diet .
I've been in remission for 4 years now 😊. I stayed on my super strict diet for a year then I slowly introduced all the foods back . I have developed a method that works for me .I do x4 weeks super strict diet and 2 weeks eat what I want (I enjoy healthy food now so it's not like I go and only eat pizzas and drinks loads of coke it just means I can have some of the foods I like or crave in those two weeks but also eating healthy )
Anyway I know the doctors don't believe in nutrition they just think it's all about the drugs. I did so much research about the nephrotic diet and people sweare that they can heal it even without meds on a strict diet .
Please consider what I have said I am a living example of this.
If you have any questions about the illness I will tell you about my experiences
Good luck with everything I know it's very tough for everyone including family members . Just remember patience pays of and to support in every way possible.
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