HealingWell
Search Close Search
☰

8 yr old daughter has symptoms....

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/5/2011 10:51 AM (GMT 0)
hello everyone,

about a month ago, my 8 year old daughter started having stomach pain which pretty quickly began waking her up in the middle of the night.  i noticed that her urine was extremely dark a few days later and did a dipstick on it which showed a large amount of bilirubin.  i took her to the doctor (the first time) and he said she was just constipated and "dry." (he never even asked if she had been having bowel movements...which she had.  so, i knew he was a quack!!).  i left there frustrated and worried.  i made an appt with her regular pediatrician but had to wait a few more days.  she continued to wake up in pain and couldn't roll onto either side because it hurt so bad. 

at the pediatrician's office, he ordered labs and felt like this could be serious based on a strong family history of autoimmune disease (and the results of some recent labs that showed an elevated ANA, which has been that way since she was 5, and an elevated double stranded dna, which was new).  a brief history...just before she was 5, she started waking up barely able to stand up straight which is why he started testing her for autoimmune issues.  a year ago, she was dx with the less serious form of JRA but that rheumatologist was somewhat dismissive since at the time she was feeling pretty good ad her labs were stable.  sorry to ramble...

anyway, her labs came back showing her alt being ten times the upper normal limit.  her ast was 5 times, ggt was 5 times, alp 5 times, total bilirubin and direct also elevated.  her alp was normal 3 days later but everything else was the same except bilirubi was increased.  in between, after the first set of labs, she awoke to vomiting and was sent for an ultrasound which showed ascites aroud the gallbladder and thickening of the gallbladder wall.  her stools were also pale but there was no evidence of obstruction.  she had a HIDA scan with an ejection fraction of 20 percent.  the pediatrician consulted with one gastro who suggested a liver biopsy...he then consulted with another who took my insurance in my state (i live on a border town) and he thought the HIDA scan probably wasnt accurate for a child and didnt think a biopsy was necessary just yet. 

i did end up seeing the gastro the following week and he thought my daughter needed to be tested for mono!!  she had some atypical lymphocytes...well, her blood counts were all whacked out but she had no symptoms of mono.  so, he wasted our time because of course the tests came back negative.  i feel like the window of opportuity to find out what is wrong has passed.

she still has bilirubin in her urine but stools are back to  normal.  the doctor is having more tests done this week.  she actually started complaing that her right side hurt this evening. 

i guess my question is....has anyone been through anything similar with a child??  i am worried sick :(....i have been told that it is either autoimmune hepatitis, pbc or psc...it could be lupus related but it is a rare manifestation.  it is a scary to be faced with that kind of a dx for my baby girl....

thank you....

Posted 8/5/2011 12:06 PM (GMT 0)
Hi Bella,
I can't help you but David or Connie are very good and will be along soon. All I can say is this must be heartbreaking for you and your little girl. I wish you the very best .
Michael
Posted 8/5/2011 2:15 PM (GMT 0)
Hi Bella,

Sorry to hear your little girl is so sick.  I would definitely push for the biopsy.  It's the "gold standard" for AIH diagnosis.  Also, have they run the other antibody tests?  AMA, SMA, LKM...those could still come back negative but certainly help with AIH and PBC diagnosis.  They can do an ERCP scope for PSC....I don't know at what age they do them or if they do them on kids but it's all something to bring up.  You are not alone if it is one of those.  There are several moms of kids on an AIH group I'm on.  I know 2 kids through the liver foundation who both had PBC from birth.  One had a transplant at 18 months and she is the spunkiest 13 yr old I've met!

As an SLE patient, you know it isn't the end of the world.  One day at a time and make sure you read up so you can be ready with questions for the doctor.  Bring a notepad with you so you can jot things down as it is definitely scarier when it involves your kids.

Mono (EBV) and CMV can cause a lot of liver issues so don't be shocked the doc brought it up...it's not just a "kissing disease" as it was in our day wink

Posted 8/5/2011 4:00 PM (GMT 0)
Hi Bella-I am sorry that your little girl is sick. The only thing I can add to all the advice Dany gave you is that in addition to a notepad you might want to bring a little tape recorder (do they still make those?) so you can record what the doctor says. When my MIL was ill our family did that...sometimes we couldn't take notes fast enough.

Please let us know how your daughter is doing.

Emma
Posted 8/5/2011 5:59 PM (GMT 0)

Bella, I see that you post on the Lupus forum, but want to welcome you to the Hepatitis forum.  I am so sorry that your little girl is ill.  I think it's reasonable to think that she has AIH or some other autoimmune disease.  Dany is our resident expert in this area and gives great info.  So please do take her suggestions into consideration.  Hopefully, whatever your daughter is suffering from can be dealt with so that she can live a reasonably healthy life.

Please do keep us posted.  As far as I know, you are the first person here who has ever posted about a child.  You might want to e-mail Dany for info on the AIH group she mentioned.

Hugs,

Connie

Posted 8/7/2011 10:02 PM (GMT 0)
hi everyone!!

thank you all so much for your responses!! i appreciate each and every one of them, really!!

dany, i took my daughter in for some more labs on friday and they included an AIH analyzer panel which has all the tests you mentioned. my concern is, of course, that she is feeling better right now and she won't show any antibodies to anything. of course, if she doesn't actually have any liver disease i would be relieved but i don't think that is the case (i just know better :(...). so, i should have the tests back by tuesday.

i also did a google search of AIH forums and found one but i don't know if it is the one you belong to. i see there are several moms on it but i haven't yet posted because i have just been so tired myself (it took me forever just to post here!)...i may just copy my posting from HW so you may recognize me immediately...

THANK YOU AGAIN everyone and i really wish you all well...and connie, i will keep you posted...thank you :)

oh, and emma...great idea about the recorder! my phone can record so i may just do it!! thanks!
Posted 8/7/2011 10:34 PM (GMT 0)

Bella, let us know the results of the labs.

Hugs,

Connie

Posted 8/8/2011 2:49 AM (GMT 0)
Bella,

Even is she isn't feeling better, the antibody tests sometimes come out negative.  That's why they should still do a biopsy.  If it is AIH (or one of the others) she needs to be treated or at the very least, fully diagnosed and amount of damage to her liver needs to be documented.  I know the biopsy is scary but it isn't that bad.  Others have posted about their biopsies and yes, sometimes, they aren't the greatest but for the majority, it's slight discomfort.  I had a transjugular biopsy as my liver was in poor shape and the risk of bleeding with the percutaneous route was too high.  I am actually really happy I had the transjugular one :-)    Yes, the treatment for AIH has its issues but not treating AIH can be fatal.  Each relapse is supposedly harder to get stable.  It's harder on kids as well so I would urge you to push the biopsy.

I also know a really inspiring kid story.  There's a girl who was diagnosed at 10.  She was so sick the doctors told mom she needed a transplant ASAP.  Mom said try the medication first knowing it's best to keep your own organ for as long as possible.  So they did.  She's 17 or 18 now and doing fantastic with her own liver.  She hardly had any viable cells on her initial biopsy but now has some lobular areas they believe are regeneration.

Posted 8/11/2011 9:43 PM (GMT 0)
hi there!

so, the lab tests aren't all back yet. the cbc and metabolic came back but the AIH panel was sent out and is only run on saturdays...of course, they didn't run it last saturday for some reason!! ugh! so, now that panel won't be back until next week sometime.

her liver enzymes are much lower...only her ALT and GGT are still elevated and just slightly. ALT 10-30 is 64, GGT 17-28 is 35. she was at ten times the upper norms when this all started. everything else is still all whacked! her rbc's are elevated, lymphocytes are elevated, mcv's elevated, etc...

i am glad liver stuff is coming down but not glad that we don't know the cause of this. i did speak to the doctor yesterday who agreed to refer her to a pediatric surgeon to discuss HIDA scan and possible liver biopsy. she didn't think, however, that a liver biopsy was necessary if her enzymes were normal by then, etc...plus, she didn't think insurance would pay for it unless she is still really sick with symptoms and the supporting labs. also, she told me that it was risky and had a patient die...from bleeding to death...so, i really need to consider whether it is absolutely necessary!!

i just want to know what is going on with my daughter and i don't want to wait until the next flare up that could be worse!!
Posted 8/11/2011 10:03 PM (GMT 0)

Bella,

I understand your fear but I'm pretty sure that the one death is very rare and quite possibly, they didn't test the persons clotting factors prior to the biopsy...as they should have.  You have all the supporting documentation you need.  She had physical symptoms and her enzyme levels are abnormal along with a host of other levels.  Because my clotting was off when I was first ill, they did a transjugular biopsy...no risk of hemorrage as the bleeding is contained in the liver and vena cava.  I was given 4 bags of plasma prior to the biopsy and didn't have any complications.  I was also seen at Scripps which is a very large hospital here in San Diego.

Is the doctor you have been seeing the gastro you saw or her pediatrician?  I think you need to speak with the pediatric surgeon (although I don't know why you'd need to speak to a surgeon for the HIDA scan...).  I know it's hard to see a hepatologist for a child but you may want to see about getting a 2nd opinion.  Not all gastros are familiar with AIH...let alone AIH in a child.

Posted 8/11/2011 10:30 PM (GMT 0)
hi dany,

i'm VERY familiar with scripp's hospital. my oldest son and my twin boys were born there. my daughter was born at mary birch. i am from san diego. these forums can be a small world!! i'm glad you were able to have your biopsy done at scripp's...that is one of the best hospitals!

i live i northern nv/ca right now and am very frustrated with medical care. it is hard to find a decent GP let alone specialists...

we saw the GP yesterday. i haven't seen the gastro again..yet (he is out of town). the HIDA scan showed an ejection fraction of 20 percent of her gallbladder. the gastro just dismissed it because he was so certain that she was going to have mono and that everything was going to be related to that. he also felt that the HIDA scan result may not have been accurate because she had no pain when the cck was injected. i had a HIDA scan and mine was 16 percent and i felt nothing. i told the doctor that but he acted like i was lying. i just want another opinion and the GP said this surgeon is the best and will investigate it further. there isn't another gastro that sees kiids in this area. the closest would be las vegas which is 8 hours away.

i hope that made sense..i'm having a bad brain day!! lol
Posted 8/12/2011 1:42 AM (GMT 0)
Bella!

Don't apologize for your brain!  I understood smilewinkgrin

My GP tried to dismiss mine as being false negative Hep A and said I shouldn't worry.  Meanwhile, my bili went from 9 to 23 in less than 2 weeks.  My AST was 748 and ALT was 848.  I was a cool shade of light orange.  Luckily, there's a hepatologist in the family...he treated Crosby (From Crosby, Stills and Nash) and Farrah Fawcett up at UCLA so he's a good hep!  I sent him my initial bloods from UCSD ER when my bili was only at 9.  I had only met him once before but he called me up and scared the begeebers out of me and insisted I see a hepatologist.  So the next day I went back to my GP who wanted to run a CMV as that causes jaundice (like the EBV)...which ende dup being negative back then.  He said, do you still want to see a specialist?  I said, heck ya!  So he set me up with a clinic in North County and I said...oh no, you'll send me to Scripps!  Two weeks later I had my diagnosis and was started on treatment.  The rest is history!  I haven't, knock on wood, had a flare and responded well to both the steroids (all the side effects aside) and azathioprine.  I weaned off the roids 22 months later and am only on the aza.

I had a HIDA but don't know the results, only that it was normal...and I didn't have any pain either.  Is the doc saying that if there is a problem, then the dye causes pain?  That would sound like baloney to me!

It sure is a small world, isn't it wink

 

Posted 8/12/2011 5:26 AM (GMT 0)
Don't you love GPs who think they know it all...when they obviously don't? rolleyes

Hugs,
Connie
Posted 8/17/2011 3:39 AM (GMT 0)
hi,

so, i got the rest of her lab tests this afternoon.  her lkm-1 was positive at 34.7. negative is less than 20, equivocal is 20.1 to 24.9 and greater than 25 is positive.  everything else was negative except her ANA which is always positive but it was a little lower than usual at 15.

what i have read about that tells me that she has type 2 AIH...i am going to call the pediatrician who ordered the tests tomorrow and see what his take is on this but he had wanted to run the mono tests again so he is kind of on my "LIST." LOL!!  i don't think either of those docs can say she has mono now...but i really wish she did :(

Posted 8/17/2011 4:09 AM (GMT 0)
Well, maybe with having the LKM-1 result, he may give up the mono diagnosis wink    I think they really like to push the mono, CMV, Hep A diagnoses because they seem better then AIH or other more involved diseases...however, those can all be bad in their own right!

Also, and I know you don't really want to bring it up, you should ask about the biopsy as that is the definitive diagnostic tool and it will also show what type of inflammation and how much damage has occured.  How is she feeling? 

Posted 8/17/2011 4:26 AM (GMT 0)
hi dany!

i would give anything to not have this dx for my little girl...if only they really knew! unfortunately, i just had that feeling of knowing this was much more than what the pediatric gi was thinking. ive been around the autoimmune block far too long....and she has been having sx for more than three years (just that this is the worst thing yet to happen). as a mom, you just know some things too...

actually, we have an appt with the pediatric surgeon next week regarding her gallbladder and i'm going to talk to her about a liver biopsy esp now that i have these results. the GP was thinking it wasn't really necessary to do the biopsy is she is feeling better and her lft's are coming down but i think it is totally necessary now. like you said, we need to find out what kind of damage has been/is being done....who knows how long this has been going on. this makes me more worried than ever! we also see the rheumatologist next week so i have been fighting really hard to get her seen by everyone as soon as possible.


e
Posted 8/17/2011 4:30 AM (GMT 0)
oh, she has been having some stomach pain the past 4 days esp at night....hurting to lie on her side. her urine is pretty clear though still small amount of bili...did liver panel today so we'll see what that shows tomorrow. thank you for asking :)
Posted 8/17/2011 2:42 PM (GMT 0)

Bella,

Her spleen may be enlarged too...kinda goes hand in hand with hepatomegaly.  Mine is, in general, enlarged and since it hasn't changed they don't worry.  Based on my ultrasounds, I have a small liver but I think the splenomegaly started when I first got ill.

I have a daughter, so I understand.  I have AIH, my 2 sisters have MS and my ex-sister in law has MS as well!  So she is sadly prime target for AI disease!  So I watch her!

Luckily, the liver is a regenerating organ.  And while her values are getting better, there might still be damage worth noting and you'll have a definitive diagnosis with a biopsy....LKM-1 can still show positive with PBC so you'd need to distinguish between the diseases.

In some respects, it's great that you are so familiar with AI diseases so you are proactive with her care.  AIH is usually more aggressive in kids so it's best to stay on top of it.  But since kids are so resilient, I've heard many positive cases!!

Posted 8/19/2011 8:13 PM (GMT 0)

hi dany,

her pediatrician is out of town until next week but the doctor filling in looked at her labs and had the nurse call back and tell me that she definitely has AIH but to see her pediatrician when he gets back.  she also said that she wants my daughter to continue weekly monitoring of her liver but feels good that her values are continuing to come down.  she did, however, say that there is more concern for relapse seeing the AIH panel come back positive (they didn't have those results before she called the first time...i actually had the aih panel before them so they had to get it and call me back).  i know she still needs the biopsy and i am going to push for it...absolutely.

i understand what you said about type 2 being more aggressive in children...i have read a lot about it and it scares me to death :(  sometimes i process it very matter of factly and other times i am all emotion...i can't fathom the possibility of losing my daughter to this disease.  i just can't even believe that she can be this sick...i feel like a lupus dx is much easier to deal with (like i can control that...i know that may not make sense but i have it so i feel like i know how to live with it and i can keep her safe and well but AIH i can't control...)  i just feel helpless confused

Posted 8/19/2011 8:41 PM (GMT 0)
Bella, I'm sorry that your daughter has a definite diagnosis of AIH. However, I think it can be controlled to a large extent, with proper medications and care. I think the challenge might be in her early teens, when she wants to be "normal" like her peers and starts to rebel. I know that happens with juvenile diabetes.

It's totally understandable that you would be emotional about your daughter's illness. After all, it is your child...and we want to protect our children. But I also know that you will do the very best you can for her.

Hugs,
Connie
Posted 8/20/2011 6:16 AM (GMT 0)
thank you, connie...i am just scared esp not knowing where we are exactly with her disease.  i'm not a patient person...i want all the answers yesterday.

thank you again for your support

e

Posted 8/20/2011 3:12 PM (GMT 0)
Bella/e

Ditto on what Connie said!  I completely understand how you're feeling.  With having Lupus, you understand the autoimmune side which is all you really need to understand.  Getting her immune system in check is what's important and will provide her with a full life (sans alcohol).  AIH is probably a far better autoimmune disease for her to have than Lupus as it only targets the liver and, as you know, Lupus has no boundaries.  So try seeing it from that light...she only has a percentage of the possible issues you've already had to deal with.  Of course, having one autoimmune disorder more often than not, opens the door to others so you and she need to be aware of changes in her symptoms.

On the very big plus side, her levels are coming down on their own.  So maybe she can avoid the steroid treatments for now which are traditionally the first treatments to get the inflammation under control and get the LFTs decreased.  Maybe they'll only start her on an immunosuppressant which has far fewer side effects.  They treat children differently than adults but that may be a possibility.  I know a teenager that you'd probably be happy getting info from and her mother as well.  Please shoot me an email and I'll let you know how to contact them. 

Posted 8/25/2011 9:01 PM (GMT 0)
hi there!

we saw the pediatric surgeon yesterday.  she didn't think her gallbladder needs to come out just yet because she wants to see what a biopsy shows of her liver.  she hopes that it is all just related to that because she hates to have to remove a gallbladder on someone so young if it isn't entirely necessary.  anyway, she was wondering why i had so many doctors involved and why it didn't appear the right hand knew what the left hand was doing...LOL!!  because the pediatric GI didnt know about the AIH panel results...she called him and told him that my daughter needed a biopsy asap!!  she told me that they were going to set that up and call me yesterday afternoon or this morning but so far...NOTHING!!  i am getting ready to call them.  i can't help but think that his ego is pissed that i went over his head ( he was the one who was convinced she had mono in the first place)...i explained to her that i had so many doctors because i was just trying to get answers as quickly as possible and everyone seemed to have a different idea so i just kept going with it and pushing for an answer.  she said she totally understood and would do the same thing just that we needed to get everyone on the same page now...

dany, i am going to email you later for that info...thank you! 

Posted 8/25/2011 10:49 PM (GMT 0)
Even though I haven't met her, I sure like this pediatric surgeon!!  Sounds like you've found someone with not only knowledge but less ego who is willing to work with you and your daughter for what's in her best interests!

I am happy they aren't just pulling her gallbladder.  I noticed a few AIHers comment on gall bladders being removed just prior to AIH diagnosis and I'm betting the docs hadn't fully investigated and just assumed it was gallbladder related...they (not all of them), sadly, jump to what they think might be the easiest route and end up causing far more problems.  Hence the fixation with it being mono nono

You should pat yourself on the back.  You did good Mom!! yeah

If you don't hear back from them today, call first thing in the morning.  Sounds like you're all getting on the same page.  I'm so happy to hear this latest news!

Posted 8/25/2011 11:14 PM (GMT 0)

If I were in your place, Bella, I'd probably be looking for a different pediatrician.  wink

Hugs,

Connie

✚ New Topic ✚ Reply
12