CKF/CRF peritoneal dialysis 9 yrs baby - pl reply

This is my first post.  My daughter, 9 yrs old, was diagnosed to be suffering from Chronic Kidney Failure.  Her creat level is 5+, BUN 40-50, potassium, sodium and phosporous, BP, sugar at present within limits.

We never checked for creatinine levels before.  Recently found when it was 6.6 mg and DR told that kidney have failed.  It was big shock to me and my wife.  EFGR is close to 11%. HB was 6.5 but we are giving Erithropoiten weekly for HB (now close to 9.5 after 200 ml blood transfusion) , twice a day calcium tab,  One calcitrol tab and 5 ml IRON syrup a day.  Baxter Catheter inserted for peritoneal dialysis. Not yet started PD. Doctor said let the catheter settle in 3 weeks.  After that based on BUN, Potassium, Phosporous and Creatinine level, he will decide how many times a week/day she needs PD (1.5% baxter solution).  We are in India.

The doctor said it is ' SENIOR LOKEN SYNDROME'. becoz she also has retina pigmentosa.

My queries.


1) Food to avoid.
2) activities to avoid (like sleeping positions etc)
3) if the levels are same as above, how many times a week peritoneal dialysis is needed ? (just to have some idea).
4) the dialysis solution is from BAXTER company.  Is there any alternate company that produces these (and available in India ?
5) any +ve news on future research for this disease.?

any other relevant information please provide such as alternate medication etc.  I'll be thankful to you forever for your views/comments.

This situation is tough to handle since she is just 9yrs old.  Hats off to those who are undergoing this mental trauma.
Thanks in advance.

[irishrooster]

Hi, I am so sorry to hear about your baby having chronic kidney failure.  I would like to reasure you that she can and will be able to live a normal life.  It is just in the beginning that it seems so scary because there is so much to learn.  I have not been dx with a kidney disease but I have uncontrolled high bp (very high) and protein showing up in my urine along with WBC and no infection.  I have an appt. with the nephrologist on 9/7.  

Now, I will try to set your mind at ease a bit.  First off I have been reading a book about kidney disease written by a doctor.  The most important thing he stresses is diet.  according to him and several studies done a "very low protein diet" is the best thing for someone with kidney disease.  Your daughter should not have more than 20mg of protein per day.  She should have an amino acid supplement, calcium CARBONATE, stay away from phosphorous, and I believe a potassium supplement.  You should really try to get this book.  I wish I could tell you the title but I do not have it with me right now.  Look for a book about kidney disease that stresses the "very low protein diet" written by a doctor who used to be in pharmacology.  ------------ Now about dialyasis--Have they considered doing a fistula?  This is where they join an artery to a vein, usually in the arm so that they can do many needle sticks and the vein will never collapse.  The fistula needs time to mature, usually about 2 months but from what I understand it is the best method for dialysis.  It is clean and there is never a worry about infection.  Also they now have over night dialysis.  your daughter would spend the night at the dialysis place and they would monitor her all night long.  They are saying that with the fistula and the overnight stay the prognosis for a long life is very good.

I sympathize with you, being in India it must be hard to get good information.  I would suggest hitting the internet, perhaps paying for online journal use so that you can get the latest research and studies done.  That is what I would do if it was my daughter.  There is a kidney journal but I am not sure of the name, I just saw it referenced a couple of times.  Also contact the kidney association in America and see what they say, I would also suggest that you contact John Hopkins and the Mayo Institute.  They are leaders in healthcare issues.  Good luck to you my friend.  My prayers are with you and your daughter.  Give her a big hug for me.