Need help and advice please my son has just been told he has Gilberts Syndrome.

Posted , 5 users are following.

Hi there

For years my son has always complained of being unwell, having 'viral infections' more often than not. He got his tonsils and adenoids removed when he was 10 which kinda helped but still complained of felling unwell.

He has has blood tests galore and always seem to be his white cells are low (due to a infection they say).

He was 16 on the 3rd of April and on the 9th of April we were back at the doctors for the results of this recent blood test again were told his white cells were low so to have another test in 4 weeks. Also about his Liver Disfunction!! What liver disfunction? So it was explained my son has GS its mild and untreatable, here's a print out for you to read so this explains his tiredness etc. We were in shock so i asked 'can we do anything to make it better?' reply was 'no' to which i asked 'will this get any worse?' reply was also no.

After getting home and reading though the print out and doing loads of research online I'm still no further forward.

We feel we were rushed in our appointment and expected to just get on with it now we know what's wrong with him.

But i have questions loads of questions.

GS is untreatable i get that but surely the symptoms i.e dizziness, tiredness, sickness, stomach cramps etc can all be treated?

They say its 'Mild' why is it my son struggles to get out of bed sometimes? Misses alot of school ?

He is due to sit his exams at the end of April and is on par to pass but is stressing so much because of his exams and the GS and the fact at 16 years old he know thinks he will pass a bad part of him onto his kids in later life. What 16 year old should be worrying about that?!

I have made a follow on appointment to speak to the Doctor and ask all this but its not until 13th May as its not an emergency.

Im at a loss. Really sorry for just rambling on i needed to get it out.

Can anyone offer advice or understanding?

Thank you

Stacey

0 likes, 9 replies

Report / Delete

9 Replies

  • Posted

    There is a slightly earlier forum on GS with someone having a son in similar age group with GS.  Try searching for it to save duplication.  You will be able to exchange notes on it.
    Report / Delete Reply
    • Posted

      Stacey, I looked at older forum only to find that it was you as well!!  Sorry about that.  However, there was another older entry with a child with GS.

      So far everyone seems to point to problems being associated with food.  One has to find which foods set off these problems.  I know a 40 year old man who says he is ok as long as he does not eat certain things.

      Another has HH as well.  It sometimes goes hand in hand with HH.

      I really feel for your son.  It is awful being unwell all the time and missing out on school which is the foundation for his future.

       

      Report / Delete Reply
  • Posted

    You wrote this sentence.

     

    ‘were told his white cells were low so to have another test in 4 weeks. Also about his Liver Disfunction!! What liver disfunction’

     

    It would seem to me that A LOT more data is required, such as a full blood count, a full set of liver function tests. 

     

    If the present doctor will not provide this information, then it is time to change doctors.

     

    Dick

    Report / Delete Reply
    • Posted

      Hiya Dick

      And thank you so much for your reply.

      Yeh i did write that sentence and thats how it was said to us.

      You have helped to reassure me that more tests need done because i feel a bomb was dropped and then we were sent in our merry way.

      I will make an appointment and get them told i want more done

      Thank you so much

      Report / Delete Reply
    • Posted

      Hi Nicola

      I'm sorry i have no help i can offer you with the dizziness my son says laying down helps him abit but some times he can't even get out of bed. We are at a stand still with it all at the moment. We went back to doctors for our second opinion and we're told to put Gilberts syndrome to the side and focus on what's wrong with him as Gilberts wouldn't do this and after all it was only found due to a random blood test. Im at a loss. I hope your son is doing ok .xx

      Take care

      Stacey

      Report / Delete Reply
  • Posted

    So my 16yr old son was told he has Gilberts syndrome on the 9th if April (this year 2015) and we were at the doctors last night after feeling fobbed off at the time of being told only for the doctor to say 'its Symptomless' wtf!

    apparently his liver function is 100% other than the gs.

    He feels sick, tired, dizzy, has brain fog, yellowing of his eyes, some times has no appetite, has stomach cramps and trouble sleeping. He has had alot of absences from school due to being extremely tired and sickie and just feeling unwell. This all affects his day to day life.

    Going to the doctors was a waste of time and my son now feels like he's getting made out to be a liar. The doctor really doesn't care and said it was all stress related.

    Stress related for years?!

    Im at such a loss and heartbroken to see my son so upset

    Thank you all so much for your replies. X.

    Stacey .xxx

    Report / Delete Reply
  • Posted

    Hi Stacey,

    I feel for your son, the symptoms are very real and can affect your daily living. I do have bouts of unwell where I feel ill, dizziness, tiredness and have the occational bout of slightly yellow eyes (jaundice, this is usually attributed to stress levels and painic attacks I have been having -another few symptoms GS can bring up). I have found when I skip meals or eat very poor choices the symptoms are worse. I need to keep reminding myself these feelings are from the GS I have had blood tests, urine tests scans and probed by the doctor and they all say eveything is fine, just the bilirubin level is up "go have some water. look after yourself and live a normal life". The toughtest thing I have found is noone knows about GS. So this site is wonderful to connect to other sufferers validating what I am feeling. 

    There are so many suggestions but the best are what works for your son. The professionals do say the sympotms are hieghtened during hormonal changes (although one report of them settling during menopause seems promising for us ladies).

     

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up