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Old 12-05-2009, 09:12 PM   #1
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10 yr old with elevated liver enzymes

My 10 year old daughter recently had blood tests done that included liver enzymes. Her Alk Phos is elev at 304 (high normal on the test result sheet was 187) and her SGPT and SGOT are also elevated but not as much. Bilirubin was within normal range.

She has frequent nausea, light colored stools and carries a lot of weight around her mid-section, almost to the point that her belly hangs over her pants just a bit. She is not heavy anywhere else on her body, just has this big belly. (That's not to say she has "skinny" arms and legs and looks out of proportion ... her arms and legs are very muscular and solid. She just has this big belly, like a "beer belly".) She also has nosebleeds, sometimes waking from a sound sleep to a bloody nose in the middle of the night, although they only occur approx. every other month, with an increase in frequency during the winter months. Once she bled for nearly an hour and two days later pulled from her nose 8 - bloody, "earth-worm-looking", thick long things that looked like snotty clots. (Sorry, but I don't know how else to explain it!) She has also them occur during day sometimes too .... I just think it's odd that she gets abloody nose while she's sleeping and not active!)

Her pediatrician is comfortable with chalking up this elevated Alk Phos to bone growth simply because she IS a growing 10 year old child and elev Alk Phos is also seen in periods of bone growth. However, all 3 of her liver enzymes were elevated at the same time. Two were a somewhat elevated, but elevated nonetheless. I am not comfortable chalking up this high Alk Phos tobone growth without more evaluation with a GGT, to possibly rule out a liver issue. Another doctor has given me a script to have these done on Monday morning, since my regular pediatrician acts like it's not important.

Is there anything else I should be aware of, looking for, etc.

Any information would be most helpful. I'm a little nervous about this whole thing .....

Thank you~

 
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Old 12-06-2009, 09:07 AM   #2
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Re: 10 yr old with elevated liver enzymes

get her to a GI doc asap. this could very well be a situation that while your ped is willing to blow it off, it could just be something a bit more in depth and impactful with her liver. that just HAS to be ruled out as soon as possible. she is having the very same symptoms my then 12 year old had with a liver condition that we did find out was inherited but this mutated in him? is there ANY family history at all in either side of your families of ANY kidney disease or disorders?

while there are other possible liver diseases and condtions that could also create these symptoms, it is simply NOT NORMAL for a child her age to have all of the liver enzymes along with that out of range alk phos. all those symptoms NEED to be kind of tracked back to the real underlying cause. one huge help with this could be done with one single ultrasound being done on her? this just really looks at all the abdominal organs and more importantly all blood flow and duct size and flow thru the vessels and bile ducts. the ONE big thing that just NEEDS to be fully checked out in that liver is her portal vein right now,just considering the repeated nosebleeds? this is exactly how our son was before everything kind of hit the fan for him with hisa liver disease?

believe me i am not trying to freak you out here at all but just am trying to really tell you just how crucial it is that this not be taken lightly and how really important that one US can be for her right now. i have to just ask you a couple of things here if thats okay? does your daughter have ANY and i mean ANY reddish markings on her face anywhere or anything that appears like little tiny spider veins that are reddish in color? what you have described as her "shape' right now really IS indicative of what is called possible acities or even just the sheer size of her liver and possibly the spleen as well? alot would really depend upon how that portal vein is that runs thru her liver? this would show very clearly upon US too. they use that doppler tool to see how well and what velocity just IS actually going thru that very important vein in her liver.

in all honesty our sons ped doc who had been seeing him since the very day he was born, despite this liver thing(he was actually born with little fibers taking over his liver over time) being there his whole life, she NEVER caught it at all. most peds and primarys just do not even think out of that very limited box where all they see mostly is the very basic childhood illnesses, your daughter just DOES need some in depth testing and good knowledgable liver specialist right now to get the best possible testing and true Dx of what this actually is.

i do hope this is something that will go away, but i do have to tell you i am really concerned about your daughter right now just based upon everything you have mentioned about her. she NEEDS at least that good US right now to just see that liver and check flow thru all the places that have it, esp that P vein. the thing about that P vien is if this is not flowing right,that blood can back up and that could be why she is having the nosebleeds among other things. honestly her doc should be getting her out to the right docs right now, and if he is not, YOU need to advocate for her. even taking her to the local ER, they WOULD want to do that US on her right away in light of labs and symptoms too. if you happen to have a good childrens hospital around you somewhere, take her there, they just would know more. the only reason your daughter has no yellowing of her eyes and skin yet is ONLY due to the low bilirubin, it is what would dictate jaundice since that is what casues it when it becomes to high. unbelievably our son,despite being down to only about 20% of his actual liver function left on the day he was Dxed,had not one tiny bit of actual jandice yet. that did not actually show itself til two months later. totally blew my theory oif liver problems/jaundice is there?

i just hope that you follow YOUR mommys gut instinct here and take her somewhere where they can at least get that sort of second opinion done at an ER and the US too? her enzymes being higher than norm along with what should NOT be THAT high of an alk phos in any child who is simply 'growing'?? stupid doc, honestly. and everything you have mentioned here just begs for a very very soon second opinion, with a referral to a good GI doc.

i am sorry to have to have told you all that but honestly? i wish i had known things before it got kind of ugly at age 12? if we had found this out earlier,at least other things could have been done,ya know? i wish you luck with this situation and your daughter and do hope this is not what it appears to be either. just follow your gut there mom, trust it and not any doc who simply blows off major findings in a ten year old child like he or she did. i seriously would change peds. PLEASE do keep me posted on what you find out along the way. i am here if you have ANY questions or anything else,K? take care HM, marcia
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Old 12-06-2009, 12:42 PM   #3
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Re: 10 yr old with elevated liver enzymes

Wow! Thank you sooo much for the great information and you didn't freak me out and YES I DO know that I have to be her advocate. If her doctor is not going to be her doctor then I know that I have to!!!

I am taking her to get her GGT level done in the morning, then I am calling Children's Memorial Hospital and getting her in there asap ... I have a connection there and believe I can get this arranged quickly.

I will certainly keep you posted ... I will post again ... I have some question for you but I have to "digest" your information ... sooo much information, emotion, concern, stress swirling through my brain right now and I can't put them into words ....

Thanks .... you are a GEM!

Lisa

 
Old 12-07-2009, 08:24 AM   #4
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Re: 10 yr old with elevated liver enzymes

believe me, i DO understand having to sort this out and process stuff. i was in that very same place but in a true life threatening emergent situation(found all this nightmare crap all in one single day since we did not have a clue he was even sick til then) and having to make some big decisions. i really am sooo hoping that this is something that will just come and go, honestly. BUT you ARE doing all the right things here, really. your daughter is lucky to have such a great mom to help her with this. just make certain that YOU are getting support too, it IS crucial. it is always better to err on the side of doing too much than not enough. a good thing to remember here.

just follow what YOU feel is the right thing to do here and push like all get out to just get her the right tests and to the right places. take care HM, please do let me know stuff when you can hon. if you should have ANY questions at all, please ask. marcia

 
Old 12-07-2009, 03:56 PM   #5
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Re: 10 yr old with elevated liver enzymes

Here's a bit of an update and a couple of questions now that my head has stopped spinning just a bit to a slow rotation, and I can see and think just a bit more clearly now ....

I received her GGT and Cortisol results ... GGT was 18, with a high normal of 36 and her Cortisol level was "right in the middle" according the the message left on my cell phone voice mail this afternoon by the Chiropractor that has ordered all the blood work to this point. See, I failed to mention this before, but we started doctoring on Oct. 5th after we started seeing a gradual increase in the frequency of these annoying little headaches she gets. They increased to about 3 or 4 a week. Let me also add that she has had this "beer belly" issue for a couple of years, but she has recently gotten taller and her rotundness has increased together with her height, so the "beer belly" thing isn't something new. I remember doing sit-ups with her a couple of years ago thinking she was just starting to get chubby/fat and I didn't want her growing up with a weight issue, I wanted to nip it. I never looked at it as a symptom, and I don't think she had the bloody nose issues yet, not sure, but I will check with the ped to see when I first reported to her about that. Anyway, the eye doctor in Oct. discovered Papilladema (swelling of the Optic Nerve) caused by Intracranial Pressure. So we did MRI to r/o brain mass/lesion/tumor. Orbital MRI followed to r/o Opt Nerve Tumor. All neg. Praise God. But why Papilldema? Well, Ped was out of country to native Korea for 2 weeks, I didn't want to see other Ped in the office with no hx of daughter's current issues. I have a GREAT Chiro that, I think, is more knowledgeable sometimes about the human body than some of the MD's and he has helped me with a lot of non-back pain related issues. And I BELIEVE in him. So I went to him. He examined her and agreed that she has some kind of Thyroid-GI-something else going on not neuro that needed faster attention. And HE ordered the bloodwork. That's when we discovered the elev liver enzymes. Then in hearing from you the first time, all the other things you brought up, the red markings on the face .... my daughter doesn't have spider veins, she has a flush red face as if she has been active, but she can look like that at resting. But she doesn't look like that everyday ... just maybe a couple times a week. Sunday we watched my son play hockey at a COLD ice arena ... she did not wear a coat in there. She was not cold. She had a long sleeved shirt on and a light scarf around her neck with leggings and boots, so she was fully covered, but EVERYONE ELSE had a coat on and it WAS cold in there. We have referred to her as "the hot-blooded girl" for several years now .... so the red face, YES, and she often asks me to scratch her "itchy" back, and she goes to bed every night with a small thermos or other covered cup with ice water because she's thirsty ... she gets up EVERY night to go to the bathroom. And she has had to go to the bathroom at every restaurant and store we've ever been in (a little exaggeration here, but you get my point) that we have nicknamed her "the plumbing inspector" every time we are out and she says she has to go. And when we took her, she would go, but she would also always comment on the "pretty" bathroom, or "this one is dirty" or whatever her opinion was, so we just thought she wanted to check out the bathrooms! Again, we never chalked it much up to a symptom of anything back then, but NOW, at 10 years old, and in the middle of the night, WITH the need for water ....and all the other symptoms .... Houston, we have a problem! So .... with the normal GGT and normal Cortisol levels, I am STILL taking her to Children's. I have a call into a doctor who specializes in Liver, GI, Abdominal/Thoracic Surgery, Transplants, everything. I got his name from my friend who was a Ped OR Nurse there for 30 years and just recently went on disability for a car accident and is away from work for now, but she has a lot of knowledge about who is good. So I feel good that I'm hooked up with a good guy. So, may I please have your thoughts about what I've shared ... isn't it funny that I don't even know you, yet I value your opinion so much right now ......

God places people in our lives for a reason and I'm thinkin' this is no coincidence .... thanks for what you've shared so far. I hope I can find an answer .....

 
Old 12-08-2009, 08:42 AM   #6
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Re: 10 yr old with elevated liver enzymes

ya know, this is kind of exactly how things went with our son over the years? little 'things' symptoms or other stuff just kind of popped up and showed itself but nothing ever all happened at the very same time that would have just given that big red flag waving in our faces that said, hey this kid is sick, get help now kind of thing? some of this is just due to how the human body compensates when any organ or body system is having 'trouble'? believe it or not,less than one and a hlaf months BEFORE the day our son actually vomited blood at school which was also THE day we actually even knew he was sick? he had had a full sports physical given by what had to be the stupidest NP on the flippin planet. she passed this kid and cleared him to play football!! can you believe that crap? he was already down to about only 30% of his liver function left, had a liver that was hardening, enlarged and no longer nicely tucked up under the ribcage anymore, and she actually palpated that abdominal area and did not even FEEL it?? his GI doc told us after that considering his portal vein was closed off and the blood had been backing up into other organs like the liver and the spleen and extra pressure just being in his stomach,throat and the whole head basically becasue of that non flow of blood(this can be the bigger reason for the nosebleeds too),that if our son had not decided at the very last minute that he for some reason just did not 'feel' like playing football anymore that he could have very easily died probably at his first practice with just one solid hit into that midsection from a football helmet. there was just way too much prressure within that liever that she said it probably would have simply exploded upon impact. honestly? i almost hit the dam floor when she told me that one. cannot BELEIVE how freaking stupid that NP was, it just makes me sick every single time i think about her stupidity and what could have happend, ya know?

the fact that your daughter has just the rad flushing and NOT ANY spider veining,even teeny tiny looking ones is kind of a good thing here with this? my son, and this was actually there for about three years before he actually presented with this nightmare,had this tiny little red dot kind of right under one eye on his high cheek area? this started to actually get darker red with time and also always had this very light little spider veining thing stemming from it. we asked his ped about this and she said it was just a 'nevis/ a benign little vessels that was just too close to the skin kind of thing? well it was actually,and i cannot remeber the exact spelling of this so here goes,a 'teleangiectasia" or somthing like that that WAS indicative of a liver problem,go figure.

what i am wondering here espescially since you mentioned her needing to pee alot? i asked this presviously but i know i kind of slammed you with info but i really do want to know this. is there ANY i mean any family history on either side of ANY kidney problems? and disease like PKD going on anywhere with anyone? what our sons disease was actually caused by,and we did NOT have the slightest clue either that this even ran in my moms side of the family or that i actually had this my whole life just didn't know it either? was polycystic kidney disease. i only found out that this was in our family when our son got sick when his GI doc asked us which side of the family had PKD? i didn't know what the hell she was even talking about and neither did my hubby. we all had to obtain ultrasounds that actually showed i had a ton of huge cysts growing in and on both kidneys and my liver too. freaked the crap outta me since all my labs were and amazingly still are right now withihn all normal ranges. but i gave this crap to my son but in his case,the PKD gene mutated and created what is called congenital hepatic fibrosis. he had tiny fibers just pluggin along growing in his liver even in utero from what we were told, his whole life. we just did not know only becasue he never ever really semed sick. and he never or i never had to have any type of ultrasound or other scan back then that would have actually showed the cysts in me and in our sons case too. but they would have noticed the fibers/scarring going on in him. just never needed any scans.

it really dies sound like you have a true huge resource of help there with your friend and just her knowledge to help you navigate thru allthe BS that comes along with having a child with an illness. that IS really a huge help, trust me. the plans you mentioned here all sound right on for what she just really does need right now as well. you just really do need to know what IS going on inside her with the liver and her kidneys too. with certain types of kidney diseases along can come liver problems as well. i did not know this either til our 'turn' came along. as long as they are going to get that US done as soon as possible that one test will really show alot. if her liver is being impacted by something,they just need to make certain that the very important portal vein is clear and not blocked in certain ways.

like i menti9oned above HM, it really does sound like you have everything set for her in the very best ways and that is just crucial to get things Dxed asap so any treatment options can be presented and started depending upon just what this underlying liver problem actually is. i too believe that things are ment to happen in certain ways,that paths cross at just theright time for a real reason or purpose. while i really am so sorry that you are having to deal with this crap at all,i am glad i am here to help with any questions or issues you need help with. i wish someone had been there for me to help with everything. it was pretty overwhelming to have to deal with and still trying to absorb my own Dx too ya know?

i just have to say that i am amazed that a chiropractor is the one who actually suspected a problem?? wow what a knowledgable guy. i didn't think chiros could actually order blood tests tho. interesting. but i would seriously look for a totally different ped doc for her or start taking her to whoever you see(family practice) or in that same clinic if the idiot is blowing off THAT much solid info on the true need for some deeper evaluation and actual Dx of what is creating this? what an ***, honestly.

when is she supposed to actually see the GI doc? if you cannot get her in to see this doc like within the next week or so,like i mentioned before? just take her to the childrens hosp ER where they WILL at least get the ball rolling while you wait to see that other doc. she just needs monitoring here ya know? there are just some tests that NEED doing the sooner the better thats all. finding out just what it is you are dealing with just helps alot. it gets a label then you can research the hell out of it and inform yourself the best you can to make the best possible informed decisions. i hope things stay stable here for her. please let me know how things are going. hang in there mom, Marcia
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Old 12-08-2009, 04:00 PM   #7
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Re: 10 yr old with elevated liver enzymes

Thanks for the info about your son .... I have wondered what his Dx was and how things turned out for you, so thanks for filling me in. How has his condition improved since beginning treatment? I'd be interested in knowing .....

My daughter today has light pink cheeks and upon close inspection I can see the small little "spider-vein-ish-ness" in them. She has chubby chipmunk cheeks, although not "overly" but she has a bit if a chubby round face and truncally her body is round and rotund. Last night she had her pj pants pulled up to mid-thigh because she was hot. We are in winter where I am, with 20's and 30's at night lately, so of course we have the furnace on, but it's not blasting to the point that she should have been as warm as she was. She even asked for a cold wash cloth to cool her face while she was working on a craft project. Whenever she's hot like that I always check her temp to just to see how it compares at it's always normal, or close to .... last night it was 98.3°.

I was contacted today by that Doc I mentioned from Children's and made an appointment for 12/28 ... that's the soonest I can get in. It's better than January!!! So I'm in the process of gathering her medical records from docs here, preparing a medical history on her and writing down some questions for the doc. I want to be fully armed with everything I need to provide him with information and to get my questions answered.

A question, though ... is it strange that her GGT isn't elevated, or her Cortisol ... or is that neither here nor there, with all the other symptoms she has? Also, my husband was adopted and we don't have much info on his family history. We did find his biological brother and sister nearly 10 years ago and we have stayed in contact. My brother in law is checking with the little biological family he is in contact with, to determine if there is any history. Also, as far as my side, the only thing there is, is that my great-grandmother had bladder cancer .... that's it, for Liver and Kidney stuff.

Thanks again for all you've helped me with so far ... I'll keep you posted ....

 
Old 12-08-2009, 05:22 PM   #8
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Re: 10 yr old with elevated liver enzymes

Another question just came to mind ..... are there any foods that I should help my daughter stay away from that are not good to each when a person may potentially have a disease/condition of this type?

Ya know, sometimes she has some real stomach upset about an hour after eating, and it seems like chicken really bothers her .... is there anything I should know, nutritionally, that we should stay away from or load up on that may be good?

Thanks again ~

 
Old 12-10-2009, 09:22 AM   #9
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Re: 10 yr old with elevated liver enzymes

sorry i didn't get back to you yesterday. i live in mn and we had the pleasure of our very first blizzerd. oh yippie.

i did remember that my son did have the ggt done but could not remmeber exactly what this was for or what it indicated so i had to look that up in my lab book. great little book i found. the one thing that that particular test just ruled out as a possible here is any actual involvement of the bile ducts like with certain conditions that heavily impact bile ducts such as primary sclerosing cholengitis? this was what my son somehow ended up with before his transplant in 2000. they said he definitely had the congenital hepatic fibrosis at the very beginning(oct 99), but in some insane way it "evolved" after he ended up with pancreatitis. all way too bizzarre let me tell ya. so her ggt was normal, so that rules out anything really impacting those bile ducts like possible stones or infections too. it says it is a 'highly sensitive' test so at least we do know those ducts are okay, and that IS a biggie.

the one big thing here that just really needs looking at is the portal vein really. if that is being somehow impacted then you have a different situation than if its clear? but with the symptoms you have mentioned even the higher pressure with her eyes i think it was? this could indicate some PV involvement if any blood is actually backing up. that is what a good US would show in like seconds. once they find it with that doppler tool they use, they try and see how well the blood flow is. it just shows how with the same types of color changes that you see on the weather when they show the doppler thing? its very quickly seen and done. in my sons case,that very first one they did the day i had to pick him up from school and we ended up being sent directly down to st paul childrens hosp right after his new primary just looked at the huge size of his stomach and the fact he had just vomited up a large quantity of blood. that very first US actually showed absolutely NO blood flowing at all anymore thru that PV. i had no real clue then as to just how really bad things were and what it was all these people kept coming in and out of the room to help look for? god it was so crazy.

we really don't know yet the full extent of your daughters situation with her liver here so please keep in mind that what i have been telling you is ONLY if what i possibly suspect based upon things you have stated actually IS going on,K? as far as the diet goes with this? that would really truely depend upon just what IS involved as far as the liver itself, and any possible kidney connection and if she has an elevated ammonia level. i know they probably have not checked the ammonia based upon what sounds like the hepatic panel they did? this is an extra ordered test they would do ONLY if she has some level of real portal hypertension going on? so once again we are kind of back to just how well her PV is functiong here. the thing that the PV does among other things as as the blood passes right thru it, it takes the ammonia out of the blood that forms from the breakdown of the protien we eat? red meats are actually the one thing that has the highest ammonia potential so i would maybe kind of keep that to a minimum til we actually know for certain what her status is here? just precautionary til we know ya know?

the one thing about the ammonia not being removed is for some reason it attatches itself very readily to the brain cells? this can casue mental cloudiness among other things. how has her overall mentation been lately? good or do you notice ANY real changes in her thinking ability at all? my son had to have weekly ammonia blood draws done up til the transplant, even tho they actually created a 'new' portal vein for him with a wonderful lifesaving procedure called the TIPS? but it still does not remove the ammonia but it does take away that immediate lifethreat from the portal hypertension and takes all that blood that had been backing up and causing enlargment of organs and the bloody noses away since it redirects that bloodflow. if you want to know about what i am talking about with the TIPS? just go back down to that liver board and look for a thread i have been on posted by "keirasmommy' about a shunt or something? i cannot remember the name of that thread but it is near the top? her father is in dire need of this being done and she needed some direction. they did this for our son and he was able to have enough time to even get to the transplant stage with his disease process.

if there is anything impairing that PV blood flow they will be doing a blood draw on your daughter to check that ammonia level. one of the best ways to keep is down, besides watching protien, is to have very regular bowel movements. they had to give our son a liquid med called lactulose just to keep things constantly moving since the longer the BMs sit within the bowels the more ammonia just gets absorbed from there.

but once again depending upon what actually is going on with her liver really would dictate what needs to be done or how her particular diet should be,ya know? we could be wayy ahead of ourselves here too depending so please keep that always in mind HM. hopefully this is just something that can be corrected or simply treated and not some real major disease process.

i do have to say,you REALLY do sound alot like me with trying to be on top of everything and getting things organized and the important questions all written down too. you are doing ALL the right things here so far and that IS a huge thing trust me. any real organization you can do just helps with alot of things. the one thing i kind of had to start doing is always making certain whther we got his labs done at the doc or in an ER or wherever,ALWAYS always obtain YOUR own copies of any and all testing results,espescially those lab sheets. and then just buy one of those expanding types of folders to keep every single thing in in some organized way? this little folder went to every doc appt and if you should ever have to take her to an ER for any reason, all you have to do is grab that precious folder that has ALL of her labs and test results in it with you and go. this just gives a TON of good solid infdo for the ER docs to work from. this stuff in hand just gives them a real timeline and baseline to work from. believe me this was one of the best things i ever did when certain things just happened. and of course having all her stuff in that one place just helps tons for you to stay on top of all of this stuff too. just never EVER give away YOUR own copies of anything in it. if a doc wants something tell him he can make a 'copy' of yours. always make certain to get anything back.

that folder thing was just soo helpful for so many reasons. i also placed any correspondence from docs or the ins crap in there too, i mean as much stuff that he had, it was IN that folder. this is just a really helpful idea if you have not already started doing it, lol? like i said, you really are organized.

ya know,with regards to her temp control? i seem to recall alot of hot/cold crap occuring with our son too? he was always always hot and always wanted a fan blowing on him for some reason. he is still doing that even now(it will be ten years since Tx in june) since i think he just got too used to it? we are freezing to death and he has a fan blowing on his face when he goes to bed. strange. i really do not know just exactly what causes the always hot mostly thing? it just 'was' ya know?

hopefully things are not as bad as what they could be with her right now. but with that good ggt, we at least know that all bile ducts are okay since something would have shown if they were from how sensitive the book stated this particular type of test was. that one test just ruled out alot of possibles. unfortunetly in order to fully dx anything it does take alot of testing and time to fully know with certain conditions or disease processes. this is where we really learn how to be patient,ya know? at least you do have that appt all set for her so thats good. but if at anytime you just feel she needs to be seen sooner, do not hesitate to take her into that ER HM. really. if she starts complaining of real pain or new pain or any other new symptoms develop, i would really take her there. i can almost guarentee you that one of the very first things they would want to do is that needed ultrasound, just to finally 'see' that liver and check that portal vein too.

in the meantime i would just write down ANY symptoms you see or anything she tells you about. and also just make sure she is eating well. and hold off a bit on the real red meat til you at least know whats up. she can have it, i just wouldn't do it alot til then? as far as the chicken goes, it could be a digestional thing or maybe she just is reacting to it somehow? its really kind of hard to say with some of this stuff. fruits and veggies are usually good, espescially fruit if she likes it? like i mentioned alrady, it really will depend upon just what IS actually going on that would truely dictate true diet changes that could be needed. i am just telling you what i know if we are looking at more of the worst case scenerio too so... thats kind of how that goes.

but do keep me posted and ask any questions i might be able to at least try and answer for you HM. take care, marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 12-10-2009, 10:29 AM   #10
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Re: 10 yr old with elevated liver enzymes

Yes .... I heard about that big blizzard ... my brother lives in Corcoran, MN, so he had to deal with it too! We had to deal with high winds, low temps, and horizontal snows here in central IL .... yuck!!! I am just NOT a winter-girl!

Thanks again for the great information .... you've been SUCH a great help and more importantly, such a great source of support for me ... I do appreciate your insights soooo much!

That's great to know about the GGT levels ... I wondered about that. I AM so anxious to get to Children's to get her examined. I received a call yesterday from a Liver doc (the one she has appt. with on 12/28 is a GI/Liver doc, but this is a different one that called, but from the same hospital/office) and they wanted me to fax all of her results to them ASAP. So I did that YESTERDAY ... they said they would call me today and they might want to see her sooner than the 28th. Keep your fingers crossed, because I'd like to get her in there sooner, rather than later!!!

And yes, the accordion style organizer is a great idea ... I do have a file started already and have kept a copy of EVERYTHING!! And, no ... I won't let anything go out of hands for someone else to keep. I WILL hold on to ALL of her records .... I am an Assistant at a local University, so I have strong organizational skills, almost to a fault, so I do have everything in order!!

I have had my eyes on the telephone all day long so far, just waiting for that thing to ring .... hopefully I will hear from them today. We'll see ....

Well, thank you again .... and again and again ... I cannot thank you enough, you've been absolutely wonderful with sharing all you have. I hope we can find an answer and it turns out to be something treatable and/or reversible and she can live a long, healthy life.

I WILL keep you posted .... stay warm!

Lisa

 
Old 12-11-2009, 07:04 AM   #11
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Re: 10 yr old with elevated liver enzymes

i am a huge freeze baby myself, so believe me i HATE this crap too, lol.the cold would not be so bad if the dang winds didn't like blow it thru your body parts, ooo. the wind chills are like minus 20 right now i think?

i really am glad they asked you to fax her labs over and could possibly see her sooner too. its the hanging in the limbo crap that can really make you crazy, the "overthinking" of it all? once they just take that good look at the whole abdominal picture with at least that US, you WILL know much more than you do right now and thats huge. every single test they do just rules something in or out just like with that ggt? i am sure if I had the ggt done it would show a high level only because of the huge cystic nightmare i have in my kidneys and liver that is now enlarging my bile ducts, including the most important, the common bile duct? this is just an insane form of kidney disease we have here.

somehow i just knew that you would have some type of file thing goin on, lol. it really does help alot in many ways trust me on that one. i have done this for myself as well. when all my stuff started to occur and i was found to have a glob of blood vessels growing inside my spinal cord(at c 8 nerve level right under my herniation, tho totally unrelated to the herniation) back just getting a routine MRI to find out what disc i had herniated in my c spine in 01? this too is from part of the secondary impact of just having PKD. we are just born for some insane reason with much weaker vessel walls? i had to have my glob removed in 03, and oh did that ever suck. i was a ff/emt til i ended up disabled from that stupid surgery. this is also why my typing is soo crappy? i lost 8 fine motor muscles in my left hand among other stuff so typing IS a problem when i have to try and just 'do' it correctly?

it is just really soo insane what can actually be going on inside a persons own body and you just do NOT have a freaking clue til it gets found upon a scan or it just finally presents itself? the human body can just compensate sooo well at times as in my sons case? things just take time to show themselves. the one thing about the labs? it all comes down to overall function of anything that gets tested and how well that particular function is or how it is being impacted in some way? labs do not actually change til that function is just impaired enough to actually go out of that threshold level. trust me, my labs are just soo good and have been since i found out i even had this nightmare going on(99), but despite all the enlargement of my kidneys and liver and the massive amount of cysts that are big and like globs of huge cysts, my functions have somehow not really been impacted yet to show up out of the norm ranges. its crazy how this all works. i have a huge mess inside my organs but great labs, for now anyways. but it just totally freaks me out when i look at my ultrasounds then see how well my labs are? they just don't look at all like the US and the labs would ever possibly be from the very same person. kinda creepy actually.

sooo, 'something' is just impacting or imparing the functions in your daughters liver enough to make those enzymes go out of the norm range here and that is what needs to be found out, what that 'something' just is. do you have the lab sheet from the initial labs handy? was her bili actualy like within the mid range normal or the higher end of the norm? its just that anything that is at the higher end of the midrange definitely IS moving upwards and can become out of range much more quickly since it IS changing at all kind of thing? just curious.

i too am soo hoping that this is just a stupid something that can be easily fixed or treated. ya just have to hang in there and hope for the best here til we know for certain. believe me i am more than happy to try and help you in whatever way i possibly can. we got hit when my son was in one of the worst stages and it went sooo fast i hardly had time to freaking breathe. that was kind of a good/bad thing too. it was just so crazy to send my son off to school that morning thinking i had a perfectly normal healthy child and to ,by the end of that same day find out he may need a liver tx very soon? just could not comprehend it all in the short period of time ya know? i had only wished i had someone who i could talk to or vent to or just ask questions to but didn't have that. so i am here for ya lisa.

let me know what you find out hon. hopefully they can at least get her evaluated here much sooner vs later. knowing at least something is actually better than the not knowing type of crap? the waiting for stuff is what killed me the most. hang in there and YOU stay warm too hon, good luck, Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 12-25-2009, 05:57 AM   #12
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Re: 10 yr old with elevated liver enzymes

hi HM, just wondering how all is going with your daughter right now? just wanted you to know i am thinking of the both of you. have a very merry christmas, K? marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 12-29-2009, 06:56 AM   #13
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Re: 10 yr old with elevated liver enzymes

hi lisa. i remembered your appt was for yesterday? how are things right now and what if anything do they know at this point? i hope things are not too bad compared to what they could be. let me know when you have time lisa, i AM here for ya, Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 12-30-2009, 04:50 PM   #14
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Join Date: Dec 2009
Location: Illinois
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Re: 10 yr old with elevated liver enzymes

Hi, Marcia. Sorry for the delay in getting back to you. You know ... busy Christmas break!! Yes, her appointment was actually the 21st ... they had a cancellation and we took it.

Turns out it is not anything to do with the liver after all. The doctors there are thinking it may be more like Polycystic Ovarian Syndrome. They have referred us to an adolescent gyne for further eval. We are going to stay at the Children's Hospital for further care there as they are the best in Chicago for kids.

I have read up a bit on PCOS and my daughter exhibits several symptoms, so I think it's worth checking out.

I will certainly keep you posted and I am so appreciative of the help you've given me so far. Thanks again. Happy New Year to you and yours.

Lisa

 
Old 01-01-2010, 07:47 AM   #15
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Re: 10 yr old with elevated liver enzymes

wow, now isn't that a total kick in the head considering what all tests had kind of indicated was within the liver, except that ggt? did they explain at all just why her actual liver enzymes would have shown out of range with this actually being totally non liver related? thats kind of where i get confused ya know? have they also cleared the liver and kidneys for ANY cystic development too? the thing about polycystic types of disease processes is they can show cysts in many different places? this is how mine is patterning out too. i also have a new cyst that just popped in on my last years US on my R ovary, but no where near what i have in my kidneys and liver. but i really am SO relieved that it is not her liver. that would have been a whole different story ya know?

i do hope they can treat this for her and things will just go on as they should for a ten year old. please DO keep me posted on how things are going for her. i really DO care lisa. thanks for the update hon, good luck with everything, Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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