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    Old 12-31-2008, 04:33 PM   #1
    ashmegmom
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    Child w/high bilirubin

    My daughter started having a low grade temp, a red rash on chest and back, brown urine and not as good an appetite. The doctor examined her and thought she looked jaundiced. He did a blood workup and says her direct bilirubin count is high which means her liver is not working like it should. He wants to wait a few days and then run blood work again because she is still eating some and her energy level is about normal. Does anyone know what this could be? I was in shock and now the doctor is off on vacation until Monday. She is 12 and has Down Syndrome so her ability to tell us how she feels is not real reliable. I am very scared. I wish the doctor had given me some ideas to process as to what we might face. Please help!

     
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    Old 01-01-2009, 08:33 AM   #2
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    Re: Child w/high bilirubin

    it really could be a list of possible issues that could create jaundice or the high bili. were any of her other liver(or any other possible labs done too) out of the normal ranges or 'just' that bili? it does make a difference. this could be some level of hepatitis(actual hepatitis itself is merely an inflammation of liver tissue,for alot of possible reasons. but it would most likely be there with jaundice as a symptom.

    there are different types of hep that you can aquire from verious things/reasons,but there is also just having that inflammation alone too,but it would be called that. anything with the word 'itis" at the end means something IS just inflammed. there IS an underlying reason for this which like i said,could be an aquired issue or even a congenital one that she was born with but it just has not yet showed itself til now. my youngest son was born with a particular liver/kidney disease(as well as myself but never knew til he got sick)that did not actually showitself,despite the ongoing damage in his liver,progressing over all that time,til he was just starting his 7th grade year at school and was only 12 years old. this WAS congenital in nature. this could be a possible type of thing for your daughter too. doing that repeat set of labs is a good idea since if this bili gets higher and is not going down,they may have to start her on some different types of therepies to do just that. do you happen to remeber that bili level number,how high it was? just an FYI here for you,but if you have not yet gotten a copy of that lab sheet,start doing this,just for your own files? it really does help for many reasons to just keep track of all testing done on her yourself and have those important copies at all times,espescially in the event of something emergent happening that you have to go to any ER for? having all her lab and testing info all in one like expandable type of folder that you can just grab and go really helps alot there,trust me on that one. this is just something i had to do since we were really getting wayy too many labs done for me to actually even try and remeber and rattle off numbers to docs,ya know? i also bring this folder to every single doc appt,just so i know we have everything? it just helps.

    she does need constant monitoring til they find out what is casuing this and to keep track of that bili level to make certain it is not going up on her. doing something like an abdominal ultrasound too would really help in just 'seeing' how that liver really looks in there. they can also check things like her blood flow thru some very crucial vessles that run thru it too.you simply DO need both labs AND some level of scan to actually look at any given organ since labs will only show out of range when damage/function loss hits a certain threshold amount. seeing this with a scan befroe the changes happen really helps alot in possibly preventing the changes in the first place. her doc just really NEEDS to be on top of this til you get some solid answers as to why that bili is up.

    knowing if any of her other hepatic labs were also out of range really would help alot in helping you. i do wish you luck with this. please keep me posted,take care,Marcia

     
    Old 01-01-2009, 09:06 AM   #3
    ashmegmom
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    Re: Child w/high bilirubin

    Thank you so much for replying. Her doctor did give me copies of the labs because he is out of town now and I would have them just in case. I have no idea what I am looking at but will list what it says is out of range. He said her liver enzymes were fine. Total Bilirubin was 4.7, AST 53, ALT 134, Bilirubin direct 2.88. How is your son? What did they have to do for him? What should I watch for that means I need to get her to a hospital? I appreciate any help!

    Carla

     
    Old 01-02-2009, 09:08 AM   #4
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    Re: Child w/high bilirubin

    god i really hate to tell you this but her liver enzymes are NOT fine. i have no clue what the doc was talking about but her AST and ALT ARE the liver enzymes and they too are out of range. the AST for instance should be under <41 IU/L,and her ALT should be under <46 IU/L, she is out of range on both. tho there can be some varying in how certain labs do their thresholds,she IS out of range in these according to HER lab sheet,correct? she REALLY needs to be referred to a good liver doc at this point for the best possible understanding of her condition and the Dxing of just why this IS the way it is. this would be a GI doc or a hepatologist. my son has always had only GI docs among others to follow his liver issues. any good knowledgable GI doc would KNOW that her labs are just not right and want to try and find the reason. you cannot treat what you simply don;t know you actually have,you know what i mean? i REALLY really just don't understand what her doc told you about the liver enzymes when they were very clearly not within the norm???? makes me wonder how much experience this idiot actually has dealing with liver problems ya know? i just do not understand the "why' in why he told you that.

    just wondering what her alkaline phosphatase is at right now on that lab sheet? it should be there as it is a basic hepatic lab run when you do the full panel. did they happen to also do her kidney labs as well or just the liver alone? i am just wondering since there are some specific conditions that affect both organs(liver and kidneys).

    the main things i always look at when my labs are done or my sons are the AST,ALT,bili and the alk phos. so far so good with his and my labs,but mine will change eventually. right now,you simply do need to get to a doc who knows about liver issues soon as possible if you can. if you should ever feel not comfortable with her situation and her doc is not even in town,i would take her in to at least be evaluated at the local ER,and make certain to bring that lab sheet for sure,they can use this as a baseline of what to work from. knowing what the last set of labs actually were really helps in seeing any progression so it is important to bring that with you.

    you menioned something about her actual level of communication? just where is that at exactly? the thing here is,even if she cannot actually "tell you' something is wrong,when it comes to certain symptoms like pain? there are other ways to tell. when you try and actually touch the area in her upper abdomen,just what does she do? or if you press down on it,what does she do? given her numbers,she could be also experiencing stomach aches or direct pain to her liver too(any vomiting or even an occasional nose bleed?). if her doc is actually out of town,i seriously would just take her into see a doc at the ER and have THEM reevaluate her overall condition. something IS definitely going on within her liver and it may take even just a simple ultrasound or CT to actually fully "see' just what that may be. i really do think getting that ER opinion would truely benefit you and her right now. espescially since her doc appears clueless here?

    i really would just take her in today and see what they think of her current status. let them decide what to do next here. they can also get a good GI doc to come in while she is there to actually see her and just do HIS or her own educated GI doc eval too. this is really whats he needs the most right now and she wont get real answers from her current primary,thats for certain. i do wish you luck with this. please do keep me posted on all things,K? take care,Marcia

     
    Old 01-02-2009, 12:12 PM   #5
    ashmegmom
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    Re: Child w/high bilirubin

    Looking at her lab the alkaline phosphate is within normal range. I saw those others were out of range but I didn't know which ones were considered liver enzymes. This was by phone, maybe I misunderstood. We are used to dealing with medical concerns as my daughter has a heart defect at birth but this just came out of nowhere for me. The doctor pushed on her stomach and she had no pain and I don't believe she does now. No throwing up and no nose bleeds. Her appetite has come back amazing today, fever is gone and so is rash. Energy level better and in great mood. There is no way I would be any better off to take her to our ER. We are in a small community. The plan is to take her 3 hours away to a childrens hospital but I think our doctor thought since she really does not act all that sick and is still eating that we could wait to repeat the test and then go there for a liver ultrasound. I don't plan to let it go without more answers but my daughter has intense fears of hospitals and has to be physically restrained or sedated so we have to pick what is going to get the best results.

    Can you give me any idea what this might be? I don't know about any kidney tests. When she was young they did the dye test on her kidneys which was fine. Thanks so much for your help!

    Carla

     
    Old 01-03-2009, 08:23 AM   #6
    feelbad
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    Re: Child w/high bilirubin

    you know,the one really insane thing when our son was going thru this was his amazing appetite. even when he developed pancreatitis he still had that appetite and WANTED to eat(not normal at all for pancreatitis patients),unfortunetly one of the treatments for pancreatitis is no food. the pancreas needs to rest,so he really was bummed. his great appetite just never ever seemed to stop,even that morning he threw up blood at school,just crazy.

    i think i can understand your sitution there being a smaller town. getting her to that childrens hospital IS what would be really needed. that is where we were sent(our local childrens hosp) the morning i brought my son in to see his doc after i picked him up at school that morning. he looked at our sons stomach and his spleen too was VERY enlarged. we both thought he may have actually had leukemia,but that was of course disproved later at the hospital with one ultrasound done on his liver. that really showed how bad it was.

    like i mentioned before,there just are certain types of liver conditions that you can be born with. ironically your daughter is the very same age my son was when he actually presented full on with this crap too. if i were you,just becasue your daughter is a downs patient,i would look up ANY type of possible link to this with certain liver issues being more of a predisposed likelyhood? you know what i mean? i do know that downs children tend to always have some level of heart defects,it could also predispose some to a particular type of liver disease too. this is the angle i would really try first in looking for what this could possibly be from. she could have been born with this just like my son was(tho not exactly the very same disease going on but something). it just takes years for the damage to occur enough that it starts to actually show itself. the human body and our organs really are amazing in how they can compensate for ongoing damage to organs and other compensatory mechanisims that just will 'kick in' when one organ is malfunctioning or losing some level of real function,it just happens. this is another reason why it can be something that has been there since birth but it is only showing now.

    unfortunetly i don't think you are going to realistically know anything for certain til you get her to that hosp and they do another blood draw(get you OWN copies of that first and any other blood draws too,and other testing results) and that ultrasound. that can actually check alot of different things. but it was the US where i actually saw myself,all of the cysts on and in my sons kidneys. they were all over his liver too but it was also so covered with fibers as well that,me,not knowing what a 'normal' liver actually looked like upon US,just didn;t see what was wrong,but the tech did most definitely. his blood flow had also become blocked thru his portal vein,that is why he had started the blood vomiting. it created what is called portal hypertension. i don't think this is actually going on with your daughter only becasue she is not having nosebleeds or vomiting,and thats a really good thing.

    i really wish i could give you better info but like i said above,it is going to take some further more in depth testing to really "know' anything here for certain about what is causing this to occur in her. but i seriously would do some researching into downs and any possible predisposistion it could have to some type of liver issues and or disease. i just think considering,this would be the best place to start i finding answers for you. once you get her to that hospital,you WILL know much more than you do now. i do hope she goes okay with this. i really do feel for you. please keep me posted on how things are going. good luck,marcia

     
    Old 01-05-2009, 04:38 AM   #7
    ashmegmom
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    Re: Child w/high bilirubin

    Well it is so strange. My daughter's symptoms are pretty much all gone. She is back to normal with eating, color of skin and urine and energy level. We go back today to repeat blood work. I still want an explanation if there is one.

    Carla

     
    Old 01-08-2009, 07:45 AM   #8
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    Re: Child w/high bilirubin

    so how did things go? and yes you DO want an explanation for why all of this got set off in her. i would still be kind of concerned here as this was a very far from normal type of 'incident"?? its just that 'something" had to trigger this in her and THAT is what you need to really find out for certain. she still does need that in depth testing on some things tho,that i would very much still want to do here if i were you. i am curious too as to what this actually is. please update me when you find out anything,K? good luck,Marcia

     
    Old 01-09-2009, 08:01 AM   #9
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    Re: Child w/high bilirubin

    Blood work has improved dramatically but still out of the normal range. She is totally back to normal in all areas and back to school. Doctor wants to repeat blood work next week to see what happens. He gave me a name of a virus that can do this but I don't remember the name. Still looking at a referral to a pedatric gast?? doctor. Still just freaks me out that this can happen out of the blue.

    Carla

     
    Old 01-10-2009, 07:55 AM   #10
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    Re: Child w/high bilirubin

    glad to hear that,but they still are not in the norm. just wondering if they were planning on actually doing at least an ultrasound on her? it just really does need to be done considering her labs and other symptoms going on at this point. this just gives a good "look' at the organ itself and also checks that really important bloodflow thru that portal vein. they can also check her gallbladder and other abdominal organs too that could also play a part in the hepatic dept. if theyhave not scheduled one for her,i REALLY would push this with her doc at this point. one US can really show alot about any given organ within our bodies. this just could actually show the real underlying problem very easily and simply. it's just one of those things when considering everything,needs to be done,soon.

    i do hope the labs contiue to go down,but you need to actually know why it occured in the first place ya know? if you do happen to remember that name of the virus i really would like to know myself just what kind of virus can do this to a child. it just really created alot of big issues with her labs and the fall out from the functions being that affected in her. yes,getting her to a good ped GI doc IS a really great idea. she just needs that level of expertise right now in order to get the answers you need. good luck carla,hope things continue to go down in her. please DO keep me posted. Marcia

     
    Old 01-21-2009, 06:59 AM   #11
    ashmegmom
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    Re: Child w/high bilirubin

    We now have results of third set of blood tests. Her doctor says liver enzymes are back to normal but bilirubin is still out of range even though it has continued to improve. Feels there is a possibility of a congential defect that could be causing this or other things. We are being referred to a pediatric gastro and I have opted to wait and let them do the ultrasound instead of having it done here. I just don't feel comfortable with the expertise here and it is such an event for my daughter. I am just ready for an answer of some sort. Thanks for hanging in there with me.

     
    Old 01-23-2009, 08:49 AM   #12
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    Re: Child w/high bilirubin

    well at least some things have gone down in the right direction,that is a great thing. i would tend to have to agree with the possible congenital thing,only becasue of what has occured with my son and myself too. considering she does have downs,anything is indeed possible. all it takes while certain areas are forming in utero is for anything to not do or go the way it is supposed to and you can get a congenital defect from it.

    we actually found out when our son was still pre transplant and needing repeated ERCPs that he actually has two seperate pancreases. go figure. hopefully whever is actually causing the high bili can be corrected in some way. i wish you luck and hope things go well. please keep me posted. Marcia

     
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