My 2 year old was recently diagnosed

My 2 year old son was just diagnosed with Nephrotic Syndrome on July 10, 2008. After about a week of receiving Prednisolone, he showed neg. in his urine for about 10 days. But, at the end of July, he started testing positive again. 1+, 2+, 3+ and after 2 trips to the ER, he was admitted to the hospital on Aug.1, and we are still in the hospital now, Aug. 18th. He was getting daily Albumin infusions, but is now usually getting it every other day. They tried to go 2 days without an infusion and he got sick. His Albumin level was a 1.4 at it's lowest. The scary part is we are approching the standard "6 weeks" and the Prednisolone is not working. His nephrologist has scheduled him for a biopsy on Aug. 27th. I'm REALLY getting scared now. I don't know why the Prednisolone worked at first, but now is not working. Also, the fact that he can not hold his Albumin level without an infusion has me very concerned. I am still hoping that his biopsy will say minimal change, but I'm scared that it may say FSGS. Is it normal to be in the hospital for 3 weeks? Is it common to have Albumin infusions so often? I'm trying to research the following: Cyclosporine, Prograf, and Cellcept. If anyone can offer me any information whatsoever, I would greatly appreciate it. I feel so scared and helpless and I just want to know my son will be okay.

By Mika
Posted August 18, 2008 at 10:41 pm

Hi, sorry that things are not going well and I know exactly what you are going through. My son got sick in April of 2007, he was 13 months old at the time. We were admitted to the hospital on April 17 and came home July 13. At first they said it was minimal change but he was not getting any better and a biopsy showed FSGS. He had very sever swelling which was making him very sick and could not be controlled with anything. At first the albumin infusions helped a little but only for a short time and then he started to swell again and even while getting albumin three times a day he was swelling and his blood albumin levels were very low. The biopsy itself went well and he did not have problems with that. Once he was diagnosed with FSGS they still kept him on prednisone for a few weeks just to see if it will work. Once it got to five weeks and he was not responding and was in very bad shape they decided to start him on cyclosporine. Soon after he started getting more sick and needed blood transfusions and developed other problems. At first they did not know what was causing it but soon came to the conclusion that he had a rare reaction to the cyclesporine so it had to be stopped (he was on it for ten days). It was decided to try plasma phereses (not sure how to spell that but its when they take the plasma out of the blood and give him new one from a donor). That helped a bit and his swelling went down a little but he was still spilling huge amounts of protein. He also got a blood clot on the lung and caught some stomach virus and was very sick. The doctors put him on Cellcept but that did not help and it was stopped after a short time. Things were looking really bad, no one even knew if he would live. Most of the doctors were saying that the only way to stop the swelling which was killing him was to remove his kidneys. Fortunately one doctor decided to try a medication called rituximab and that really saved his life. He went into remission and now a year later is doing wonderful. He did relapse once but with more rituximab went back into remission and now is also on Cellcept which now is helping. So as you can see my son has FSGS, was very sick and now is doing wonderful so I hope that that will help you feel a bit better. Good Luck,

Mika

By tr9736
Posted August 19, 2008 at 9:40 am

I'm sorry you had to find us and that you are going thru this... My son was diag on Jan of this year, had trouble going into remission and had about 5 hospitalizations to date... Are they giving your son Lasix IV after the albumin infusions?? You didnt mention that -- but know that without Lasix, you're not going to see a reduction in swelling for some time... My son would get Albumin/Lasix and Zeroxalyn (a double diruetic) to get his swelling down. Remember, the albumin being infused will come out as quickly as it is going in (i.e. will reflect in the stix readings, and continue to swell) but one of the reasons they infuse it, is to allow the lasix (diuretic) to work -- Lasix WILL NOT work without the presence of Albumin in the blood (readings below 3 I believe it is -- below that is considered 'nephrotic' and he will swell) -- this purpose if for cosmetic reasons only and to give the chile a bit of relief from swelling and also possibly avoiding fluid complications such as peritonitis, pulm edema, etc. Make sure you get a prescription for BOTH diruetics to use at home... Albumin infusions will not cause him to stop spilling at all so the numbers will ALWAYS be high after an infusion. They should be giving him Solumedrol IV as well (IV form of prednisone) while in the hospital -- that is what will help him stop spilling and move toward remission.

My son was put on Cellcept, but it did not work... He is now on Cytoxan (cyclophosphamide) which is a 12 week course (currently on week 10). He responded immediately to it... and is being tapered off pred for the first time. Time will tell what the long term outcome is but have been warned that there's a 75-80% chance of relapse once he's off the cytoxan -- but hopefully with a maintenance dose of pred and reintroducing cellcept may maintain the remission... (that's what I'm praying for anyways).

Bottom line is -- nobody knows what is going to work for each child -- they are all different and respond to different drugs... Trial and error until the correct 'cocktail' is found. They say the 1st year is always worse (coming to terms with the disease, finding out what 'pattern' the disease will take, finding out the correct magic mixture (or preferable single drug) that will work, etc, etc.

My son has not been biopsied only because the treatment will not change too much -- will continue to be a trial and error but thru tests they can see what the kidney function is... as long as it remains at 100%, it should be MCNS.

I have an article that I copied off the internet that helped me understand this whole thing much better, if you want a copy (I dont remember the site), email me at TR9736@gmail.com.

I wish you luck, and will pray for your child...
Tania, Eric's mom, 2.5 yrs old

By Shawnsmom
Posted August 19, 2008 at 1:00 pm

Please know that my heart goes out to you, your son and your family. My son was diagnosed early Feb of 2008 when he was just under 2 years old. We were in the hospital for 5 weeks on and off. Similar to your son, my son would swell up so bad he had to have the Albumin/lasix infusions at first twice a day and then we got him down to once a day.

The doctors have to assume it is minimal change at first due to the statistics, most kids do have minimal change. But sometimes our kids are not "the usual". My son finally had a kidney biopsy and he has a very unusual type of Nephrotic Syndrome, we are still searching for answers. He has the scarring that is like FSGS but they were able to do a staining test with the biopsy and his syndrome is not immune based.

But please hang in there - you will get out of the hospital and be able to take that adorable little boy of yours home. My son is at home now, but he has a catheter in his chest and we do daily albumin/lasix treatments from home. I know this sounds horrible, but it is not. My son is a happy, engeretic 2 year old boy. He goes to the park, goes to the beach, plays with his sister - he has no clue he is 'sick'. That is the amazing part about children. They will feed off how their parents react - if it is no big deal to Mom, then they will be okay...

I am still on my journey to heal my son, but he is at home and happy as can be - every day I am thankful for that.

I would do a biopsy, that will give you a better idea of what you are dealing with. They have a lot of treatment options out there.

I do hope the hospital gave your son a pic-line or catheter - so they do not have to stick him everyday. And know that it is an option to do Albumin/Lasix infusions from home - only if you have to.

Please let me know if I can be of any more assitance. I know it is so overwhelming right now...

Sending my prayers....

By AbbyMom
Posted August 19, 2008 at 1:32 pm

Hang in there, I can't offer you advice on the other meds as we haven't had them yet. Have been very close to it but they always decide to up his prednisone instead. We have been dealing with Nephrotic Syndrome now for 6 years, so I can tell you that there are times when things are bad. But then they seem to turn a corner and they start to improve. I will be praying for you and your son. Hoping that he responds to treatment soon, and that you get some answers via Biopsy if he doesn't.

By Crowley
Posted August 21, 2008 at 5:08 am

I've read the previous responses and they have all given you lots of information so I'll stay as brief as possible. It can be a very scary situation especially when your child is so sick. Please make sure that if he becomes less active and not moving around much to discuss blood thinners with the nephrologist. Unfortunately, my daughter passed away this past April (was diagnosed in January 2008) of a pulmonary embolism. This is because with nephrotic syndrome the hypercoaguability of the blood is altered and the patient has a higher risk of blood clots. My daughter would get so swollen that she could not walk without discomfort and had very limited interest in doing anything other than watch movies or try to stand up to draw or play with something at her craft table. She couldn't stay up for very long because it would just make her so tired. I do not write to scare you but you deserve to know the successes of treatment and the failures. My daughter had FSGS and was three years old.
I wish you and your family the best of luck and remember that you must be your child's advocate.
Best wishes and my prayers are with you.

By AmosB
Posted August 24, 2008 at 5:36 pm

kcmommy,
Breath, deep breaths and savor your time together. Our daughter was first dx with NS and then FSGS at 18 months. As you are aware you hate to see them go through this but rest assured that they will only remember the highlights of hospital living. Our daughter sometimes reminds us that when she went in she got to watch TV ALL the time and order off a menu. We were sure that she would remember all the pokes, prods, xrays, and surgeries, she does not. She had a tough go of it at first but once you get on top of the protein loss it gets better. No, it is not normal for the rest of the world to be in the hospital for 3 weeks, our record was 30 days, try and get a routine down while in there. Get him up and walking during his infusions, even if it's to the nurses station and back. You are a great mom and have taken the first step in finding answers for your sons health. I am so glad that this site is so supportive of all.
Good luck and snuggle with your son extra close,
A

By DonnaColucci
Posted September 3, 2008 at 9:49 am

Hello, I just happened across your stories. You all remind me of the years with Gabriel.
You see, he too, was diagnosed at 2 with MCNS. He has been in remission for over 4 years now. He is 14, and is a healthy boy. He plays football, and excels in school.
The years when Gabriel had MCNS, I tried to educate myself about the disease. There wasn't a lot of information about Minimal Change Nephrotic Syndrome like there is today on the Internet. Thankfully, websites like these are here for parents like you. Those were the years of confusion, sadness, and fear from our entire family. It is very nice to be able to share it with others who are in the same boat with a sick child.
I continue to do what I can to educate people and help others in anyway I can when it comes to NS.
Our Step Forward Walk is scheduled for September 14, 2008. Please make a promise to yourself to not only help your child, but help others as well.

Step Forward North Jersey
September 14, 2008 10:00a.m. – 4:00p.m. rain or shine…
Where: Over Peck Park, Leonia, NJ
Email address: Decesquared@verizon.net or nephcure.org

STEP FORWARD NORTH JERSEY Registration forms and T-Shirts are in......Visit the following places in New Milford, NJ for your registration forms,Frankies Deli, Oritani Savings Bank, CVS (near the HS in New Milford) and New Milford Police Department.

REMEMBER: Registration is free!

Donations WELCOMED!! (Made Payable to the NephCure Foundation, a non profit benefiting two kidney diseases, Nephrotic Syndrome and FSGS)

Step Forward with Bruce Harper ( Jets) Perry Williams( Giants) Randy Ruetershan ( Pittsburg Steelers) and Mark Slawson (Giants) and the Colucci Team, or start your own, to spread awareness and find a cure for two kidneys diseases, Nephrotic Syndrome and FSGS.
Meet us at the Overpeck Park, Leonia, NJ, September 14, 2008 from 10-4 p.m., and let's have a few laughs, and walk for a great cause, all while enjoying the entertainment of Joey Metro, food, and snacks donated by our local shops.

Join The North Jersey Chapter of NephCure and friends, families, patients, and doctors on September 14th at 10am at Overpeck Park in Leonia, NJ and Step Forward for a Cure, a 2.5 mile walk to help raise funds and awareness for two debilitating kidney diseases. Nephrotic Syndrome and FSGS can lead to kidney failure. The cause is unknown and a cure is not yet discovered. All proceeds benefit the NephCure Foundation www.nephcure.org and will be put towards research, education and public awareness efforts.
The NephCure Foundation is a non profit organization whose mission is to support research seek the cause and cure for NS and FSGS. Nephrotic Syndrome occurs when kidney filters malfunction and protein needed by the body is lost through the urine. Swelling occurs in the body, especially around the eyes and limbs, and belly called edema. NS can cause FSGS, Focal Segmental Glomerulosclerosis, which results in kidney scarring that leads to daily dialysis or a transplant.
On Sunday, September 14, 2008 join the Colucci team or make a team of your own and walk with us for a cure. Our goal is to raise $20,000.00, even if you cannot walk with us you still can contribute to a great cause by your tax deductible donation.
If you would like to participate as a sponsor, walker, or team, or becoming a member of the NephCure Foundation, or make a donation in honor of someone, you may by visiting our website at www.nephcure.org or contacting Donna Colucci, The North Jersey Chapter @ Decesquared@verizon.net

By Rowansmum
Posted September 4, 2008 at 5:14 am

Hi
Rowan was diagnosed with FSGS 2years ago now he is now 6years old and enjoying life despite his illness.
We also had 3weeks in hospital with him on a cocktail of drugs and albumin and eventually he stabilized and we could go home.
Rowan was on cyclsporin for 1year along with Pregnasalone, fusamide(when needed) lisinapril and cozaar.
We thought the cyclosprin was the wonder drug that was helping but as it turned out it made no difference on his 2nd biopsy there was futher scarring so he was taken off everything except lisinapril and he has remained stable.
my heart goes out to you its a hard journey but the kids make it Ok somehow.
feel free to ask me any questions I know how alone the not knowing can make you feel
I hope they find the miracle for you

By kcsmommy
Posted September 4, 2008 at 10:06 pm

Hi Tania,

Thank you for your reply. I think you are absolutely correct about finding the correct "coctail". From everything I've researched, talked to doctors about, and from my son's experience, I know now that everyone is different. To answer your questions... yes, he did receive Lasix IV after every infusion. Also, we tried to give him Solumedrol IV one time, but he immediately screamed that it burned. So, we never tried that again. We just came home from the hospital Friday after spending the entire month of August there. They have diagnosed him as "steroid resistant" and are now slowly weaning him off of the Prednisone. They had to give him a full 6 weeks, but since it did not work, they started him on Cyclosporine. They warned me that it may take weeks to months to see if it works, but I noticed a slight change after 3 days. Just a few days later, they did a biopsy and placed a mediport in his chest. The next day, we got the preliminary results which showed minimal change. What good news!!! It took a full week to get the entire results, and those also showed minimal change. I am VERY happy about the results, but of course, I am still very concerned about him. Since he started the cyclosporine, his blood pressure is very high (for example 130/90) and his heart rate is, too (like, 165 during the day and 120 when he is sound asleep). He has been getting 2.5 mg of Norvasc 2x a day, and I just got a prescription for another BP med. that I will pick up tomorrow morning. I hope this one will help some more.
Thanks again. I really like this site and the fact that there are other parents out there going through similar situations puts me at ease.
You & yours are in my thoughts...
Take care,
Jamie (Casey's Mom)

By kcsmommy
Posted September 29, 2008 at 8:48 pm

Dear Crowley,

I must first tell you that I am so very sorry for your loss. I hope that you can take comfort in knowing that she is in a better place now. I will pray for you and you family.
I brought up blood thinners to my son's neph. and they agreed. I had to wait a full 2 weeks until after his biopsy, and I now give him 1/2 tablet of baby aspirin (81 mg) daily.
I also want you to know that I always remember that you told me to be my child's advocate. That really stuck with me and I do not hesitate at all to call his neph. or bring him in to see them. I have called very late at night just to make sure he is alright.
Thank you for responding.

By Crowley
Posted September 29, 2008 at 9:39 pm

I am so happy to hear that your sons nephrologist is open to your questions and ensuring the best possible health for your son. I am grateful to know that I was able to help in some way. Please don't hesitate to contact me if you need to vent or just talk.
Best wishes to you, your son and your family.

By cgalitski
Posted September 30, 2008 at 12:33 pm

kcsmommy,
My son was diagnosed with Minimal Change NS when he was 1. He is now 13, soon to be 14 in Feb. This journey we took together was a long one, with many ups and downs. He has tried all kinds of meds( Cytoxin, Levamisole, Cellcept, Prograf, Steroids etc..the list goes on and on. Like everyone says, everyone is different. You have to find the right combination that works. You have good days and bad days.
Stay strong! Read all you can! Ask questions! Talk to everyone here. This site has been wonderful to me, I met some really wonderful people, who know exactly what your going through, and it makes you feel 100% better. I admire all the moms and dads on here, for staying determined an spirited!!!

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