My 12 year old son was diagnosed with GS in 2018 after I went to them concerned about his excessive tiredness, pale skin, and lack of weight gain.
Since then, he has had frequent bouts where he is sick, sleeps all the time, and pale, but we do everything we are meant to do to try to alleviate the symptoms.
However, in the last few months he has missed a LOT of school due to random vomiting, stomach pain, headaches and fatigue, and it is starting to impact his education.
He has had a couple of full bloods done over the last few months which show his bilirubin levels are above 50 so clearly in the jaundice zone.
But, how are we meant to get the levels down when we are already following the 'drink lots of water and eat healthily' guidelines?
Everything we read says most people don't have symptoms, but he seems to have a lot that impact his daily life.
The doctor has said he will run some different liver tests in a few weeks time if he is feeling better, to rule out anything that may have been missed by the other tests. But Im going mad trying to figure out what I can do in the mean time to help my son feel better.
He has been off school all week this week, slept well over 16 hours a night, and vomited frequently.
Any advice is greatly received!
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suzi_k79
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GS does not cause that much symptoms usually so your doctor has a good idea to look other possible causes. I think it might be something not about his liver but your doctor knows what to do.
About bilirubin level for us (with GS) it will never be in normal range for most time (usually double to triple the upper limit of normal). It is a genetic issue. It is very individual thing about bilirubin level with GS.
Please rember that with Gilbert's Syndrome you should eat regulary. I think there is not special diet. It should be healthy and enough caloric content.
I am wonder why doctor would like to decrease the level before more tests? I have never heard about this. When I had futher tests after GS diagnosis (other story GS was not the reason) it was not needed (I had around 50-60 µmol/L). But follow your doctor of course.
You may want to have a look at the Childrens Liver Foundation Website. They provide lots of information and offer support to children and their parents.
Sorry to hear about the problems your son is having. I just wonder how convinced Doctors are that it is Gilbert's Syndrome and whether any other potential causes were investigated, were his other liver bloods ever elevated (ALT, AST, ALP). Did he ever have auto immune markers done or a liver biopsy?
It is entirely possible that this isn't GS at all or could be GS alongside another issue such as an auto immune condition so in light of his symptoms some more tests are definately needed.
So sorry to read your post. You must be very explicit with your GP and tell them exactly the affect the current situation is having on your son along with yourself. If you have to write lengthy details, then so be it. For someone so young, his daily life is taking its toll at a time when his education and other activitie are of paramount importance. Please take this further and voice your extreme concern. This cannot go on until answers are given. Sincere thoughts.
Thank you all for taking the time to reply. Yesterday was the first day in the week that he wasnt sick! Hopefully it means this bout is on its way out. But i will definitely be calling the doctor to make an appointment for further tests on Tuesday.
Im not sure about his other test results, as I havent seen them. I have just been told that his bilirubin is high and his liver function is normal. I will see if I can get his results added to my nhs app so I can review them as well. Although Im not sure if thats a good idea or not with Dr Google at my disposal
If his bilirubin is high and his liver function is normal that's usually means Gilbert's Syndrome (considering prelavence of it around 7-12% in general population). Ultrasound should be also done in this case to rule out other serious issue. To be even more sure genetic test is a good idea to confirm it if some doubts.
But your son serious symptoms do not match GS and as it was said here some other disease might be present along with this condtion.
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