NEED INSIGHT! I have a 5yr old child with congenital kidney failure, G tube,transplant in future, etc...?Hi, i joined Yahoo in hopes of finding someone who can offer insight or support to me. My son was born small and i just knew something wasnt right when he wouldnt feed.. Ne did not cry much nor did he desire to eat from the day he was born. He was diagnosed with failure to thrive and recieved a many tests. He was diagnosed with renal/kidney failure at 5 months. His kidneys are small, echogenic and they use the term, renal hypodysplasia.He has remained stable at about 50-60 percent function with a creatnine of .7 at its lowest to now about 1.1 over 5 year span. He also has a SEVERE gag reflex that turned out to be much more than just the common reflux. He had an ng tube inserted at 6mths old for a year and then had a g tube placed which he lives with still. He will 'suck' any food! His favorite is cheesey doritos and choc bars- but watch out, one little piece gets on his tongue and hes gagging and all comes up! Anyhow i just need to know that this is 'normal' with the kidney disease-all i have is the dr's word, but after so many years i start to wonder where this all is headed. When will he eat? (Maybe there is a parent with the same obsticle and can tell me an age when their kid finally started practicing eating!) Why does he dry heave everymorning? Should he go on growth horomones??(he is at the 10th percentile height and 25weight) What does the future look like for him? What will the transplant stage be like? Will my son be ok??!! Its very scary and lonely sometimes and would love to find a DR or parent with some INSIGHT from personal experience.
Posted by mtwaites
It is hard to know for sure what some of these symptoms are, but I can send you some information about congenital kidney disease for you to look at.
http://kidshealth.org/parent/medical/kidney/kidney_diseases_childhood.html
http://kidney.niddk.nih.gov/Kudiseases/pubs/yourkidneys/
Posted by neonlights1971
First let me state that I'm so sorry that the lil one has gone thru alot in he's short life...
I'm not sure, not a doctor and I don't have kids, you could ask someone I mean ask the hospital if they have a support group for what your going thru.. best of luck!
Posted by Heather O
Well you have your hands full, thats for sure. We don't have exactly these same issues in my house, but there are similarities. My daughter is almost 4, has an Arnold Chiari Malformation Type 2 and Russell-Silvers Syndrome. They also recently discovered a chromosone 13 partial deletion, but the doctor's out on how significant that is, or what it relates to. My daughter is tube fed by g-tube and has been since she was 13 months old. Before that she had an NG tube from 7 months. She is on the 3d percentile for weight, and the 10th for height(she is a little thing!) She has severe acid reflux and a shortened esophegus. We had alot of trouble for a few years with oral intake, too. There is alot to consider in your post. So first off all your little guy has had an uphill battle. You did not say much about the transplant, or when they think it *may* take place, but if the hope is sooner than later, I would not worry about the oral intake. To change so much at once is hard on us adults, never mind the little ones. Unles your doctor is saying otherwise, I would wait for the transplant, get through the recovery period, get him and you used to medication he will be on after that, establish a routine, and THEN work on the oral intake. I don't know if it is normal or not normal, what I DO know is these kids with these sorts of issues seem to having a tougher time of it. Your son has a strong gag reflex...have they figured out why? Is it a pallet issue, a true food aversion from pain(reflux and a mishappen pallet created a real aversion in my daughter...it HURT to eat, she she stopped.) Specifically with regards to the food issue, there is a lot you can do with him when the time is right, starting with play. But before you do anything i would OK with his doc, and be sure tha there is not a physical reason that he cannot or will not eat. anyway, back to play. Just think; its the one time in life that it will be ok to make a great heaping mess of your plate/high chair. All the foods that you wish to get him eating without a problem can be introduced on his tray, and let him explore. They sell a little mess bag that looks like a binki on steroids at most drug stores: in it you can put mashed fruit of all kinds, veggies, even meat. No chunks can escpae the mesh, but he gets to try all sorts of new things. Step up from there..slowly....to foods with a slightly thicker consistancy than liquid. Move up in steps, SLOWLY to small soft chunks. Praise him every step in the way for every effort, and even the lack-there-of. Make it into a game, but don't push him past his obvious limit. If you got to a smoothie consistancy, and he retches on it, back down to something less substansial for a day or two, then try again. They have something called speech therapy, and to be honest I am against it, firmly. We got my daughter eating again without the drama. BUT you might want to look into it anyway, it may suit you. The therapist uses many tequniques to teach a child how to eat again. Remember, eating is only an instinct for the first few days of life. After that, it can be tough to get back. The longer he has been without it, the longer it will take to re-learn. Again, I would be sure that this is not a true blue painful or uncomfortable experience for him before you try anything. I hope you found something helpful in all of this. We are not dealing with organ failure here, but I do understand what you are going through, and how terrifying and overwhelming it can all be! Best of luck!
Orignal From: Kidney Disease: NEED INSIGHT! I have a 5yr old child with congenital kidney failure, G tube,transplant in future, etc...?
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