Hi - I would be very grateful if someone could help us with our daughter, Marianne. I'm afraid her case is a bit complicated.
Marianne is 6 and has a variety of symptoms which no one has been able to help with.
She was born with a multicystic dysplastic left kidney and cysts on right with limited kidney funtion of about 53%.
During her first 18 months she became very pale and lethargic and GP said not anaemic but by 18mths old a blood test came out very low and she was put on Epoetin shots, oral iron medication and folic acid.
Her anaemia got better so they stopped the Epoetin but she started the symptoms she still suffers from at times.
These include severe migraine with aura, tinnitus, anxiety,nightmares, constant fatigue, pallor and extreme behaviour - occasionally aggressive, screaming (very out of character for her as she is a very sweet, loving child normally)
These symptoms went on for a few weeks, then when started oral iron, they disappeared. For the next couple of years the problems returned every 7/8months and disappeared when we increased iron medication and Marianne would be well and happy, totally different.
Haematologist tried testing when symptoms came back to see if iron deficient but iron levels were ok if a little low.
Haematologist insisted Marianne stopped iron and for a few months Marianne's symptoms were very severe so we put her back on iron and they went again for a while.
Couldn't keep increasing iron so I took her to nutritionist who tried her on B6 and vitamin c to help iron absorb - again this worked for a few months but probs came back.
Last year whilst researching on net I discovered it could be B12 - symptoms were similar.
Paid for blood tests which showed normal b12 of 613ng/L but interestingly her folate levels were very high - 1135.1 normal is 150-600 - and her MCV was slightly raised at 87.4.
THerefore nutritionist put Marianne on oral cyanocobalamin twice a day.
The results were miraculous - Marianne was the best she has ever been, loads of energy, fewer headaches, no tinnitus - she was our kind loving happy little girl.
But two months later symptoms started to come back and are still there.
Asked to see a haematologist who has taken recent serum b12 and said because serum b12 is high - 1800ng/L Marianne does not have a problem absorbing b12. However she has been on high oral doses so i do not find these results surprising - I am just concerned she is not able to absorb b12 sufficiently as it worked to start with and is now not working.
The haematologist has also done a homocysteine test and we are expecting the results this week, however I don't think it will show anything as Marianne has always been on high levels of oral folic acid and more recently on high oral b12 which I understand increased homocysteine levels.
I would like to try Marianne on injections of b12 to see if they will help but the doctors feel this is not necessary as she is not anaemic and the blood tests are showing high levels of b12.
Please could someone help with this matter - we are desparate to make our little girl better?