Discussions By Condition: I cannot get a diagnosis.

****Need help with 5 year old girl****

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Anonymous
  • May 27, 2007
  • 07:55 AM

Our daughter has had alot of medical dramas for the past 4 years. her current symptoms are protein and Creatinine in her urine. The Creatinine is more then double the recomended amount for a child. Also her Iron levels are extremely low. She is quite often pale with dark circles under her eyes, she complains of stomach pain more then once a day and is usually crying with the pain. She drinks alot of water however has very little urine output. She is also more hungry then usual however not eating as much?? I realise this is confusing, however our Dr's cant give us answers. Anyone that can offer a suggestion is welcome!! She also has a history of ketones in urine (almost every sample) and glucose in her urine, but not all the time. PLEASE HELP!!

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11 Replies:

  • I'm so sorry that your daughter is so sick, I will pray for her! There are a couple of things that I think of from your story. Has she been tested for Diabetes? (esp. because of Ketones in urine) Ketones in urine can also show up if she's not eating enough food. Have they checked her Kidneys for disease? She has all the signs: protien, creatine etc. It's not good that she's not urinating like she should (as you mentioned). Does anyone in your family have Chronic Kidney Disease (sometimes runs in families). I would DEFINATELY suggest a diabetes test as well as testing her kidney's (like a scan or x-ray) if she hasn't had this already.Good luck and keep us posted!
    Anonymous 42,789 Replies Flag this Response
  • PS: I would also recommend a refferal to a nephrologist or a urologist, there is definately something going on. Hang in there hun :(
    sosickofthis 31 Replies Flag this Response
  • ahhhh, I just posted something to you "unregistered" so it's going to take awhile for it to show. Basically I was advising you of a few things.Has she been tested for Diabtetes?Do you have any family history of kidney problems?This to me definately sounds like a kidney problem. Look up Chronic Kidney Disease and see if that makes sense. God bless!
    sosickofthis 31 Replies Flag this Response
  • We had a phone call from the dr today, her 24 hour urine test came back positive for protein and creatinine again. The dr stated he wanted to see the blood tests before making a decision about how to proceed, but he wont give us any suggestions as to what this could be, only stating that he is worried, as in the 24 hour urine test she only had 200ml of urine. Thanks so much for your suggestions, we appreciate it as it gives us ideas on what to ask or to expect, so any further comments are most welcome.
    Anonymous 42,789 Replies Flag this Response
  • FYIWe had a copy of the blood test sent to us today, they showed high protein and Albumin in her blood also very high ALP (unsure what this is) It also showed high Platelets, two other markers were for 'PFA-100 Test Analysis' stating Col/Epi and Col/ADP were both very high. We have an appt with the Dr to discuss but would be grateful for any information about what these could mean. We are young and I guess somewhat uneasy about asking questions from the Dr etc so please any help about what we should do or ask??
    Anonymous 42,789 Replies Flag this Response
  • ALP is a liver enzyme. It is most commonly elevated in conditions like gallstones (could cause the pain episodes you describe) or any other blockage in the bile delivery structure (bile moves from liver to gall bladder to the intestines). If she has particularly dark urine, light colored, or oily stools that's also a good clue to bile blockage.Given the history of kidney problems, I hope you already have a nephrologist (Kidney specialist). Protein and glucose in urine and anemia are all signs of chronic kidney problems. It's probably best if you can find a general internist who might be able to consider a link between the Kidney and Liver problems. There may be an underlying infection or auto-immune disorder affecting both (I think a "granulomatous infiltration" can congest both the liver and kidney.)It looks like she has high platelets (needed for clotting blood), but they are not functioning well (high PFA-100 tests mean long clotting time). This could indicate some type of proliferative disorder where badly functioning platelets are outnumbering more functional cells. It's possible that they are overloaded and congesting the liver and the kidney, although I'm not too sure how likely that is to happen. If the platelets end up being the main problem then you will need a hematologist or hematologist/oncologist.Good luck, and don't be afraid to tell your doctor if you don't understand what they're telling you - part of their job is to keep you informed and educated.
    Anonymous 42,789 Replies Flag this Response
  • Thank you to everyone that has offered suggestions, we do really appreciate it. We just feel that we are getting nowhere. The Dr has stated that he wants her to see a paediatrician and get referrals to other specialists such as a hematologist, kidney specialist and endocrinologist etc. The problem that we have is that one day she is great, the next she is crippled in pain and has the other symptoms etc. She goes pale within 5 mins, we are honestly baffled and I believe the Dr's are to, so getting opinions from the web is really helping us, so if possible keep them coming. Thanks
    Anonymous 42,789 Replies Flag this Response
  • Have you really had diabetes checked out, seems alot of the symptoms are similar to diabetes, perhaps see an endo?? Sorry but cant offer more ideas yet....but will think about it for you. Good luck
    Anonymous 42,789 Replies Flag this Response
  • Do Not Stop Seeking Help For Your Little Girl!
    Anonymous 42,789 Replies Flag this Response
  • You should definately question your doctor about diabetes as this could cover a lot of her symptoms (including the kidney symptoms).Another possibility is Coeliac disease. It is a disease in the small intestine in body attacks part of itself (an auto-immune disease) in relation to gluten intake. The lining of the intestines can be damaged, which is the usual site of absorption of many vitamins and minerals.- Hence a possibility for the low iron levels and pale skin, iron deficiency anemia can possibly also lead to an increase in platelets.If this is the case she could possibly be Vitamin K deficient also which would explain the prolonged clotting time as Vitamin K has an important role in the synthesis of certain clotting factors.Vitamin K deficiency (like iron deficiency) can also just be caused by a poorly balanced diet.
    Anonymous 42,789 Replies Flag this Response
  • Thanks for the suggestion, her blood test do come back indicating cealiac disease however she had a endoscopy which came back negative, however the endoscopy showed bleeding in her tummy, only small amounts bu several different parts of her tummy were bleeding and some were scabbed over.
    Anonymous 42,789 Replies Flag this Response
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