update on my daughter

[alisha1234]

It's been a while since my last entry. We've had our ups and our downs. I have a feeling this is going to be a long road for us but I know we'll pull through.

I think I said before that they couldn't find anything revelant on my daughter being HFI so we stopped that diet about 1 month ago. She doesnt seem to have any issues with her tummy or any reactions being on a normal diet. 2 weeks ago her liver enzymes were almost normal. We had so much hope. Our liver Dr even said we wouldn't have to see her until August. We were still running weekly labs when we found that her liver enzymes jumped up to 1400 again. My daughter had to have her 2nd liver biopsy. Her first was in April and they couldn't find anything. The results are the same as the 1st. Our Dr has met with the top 5 liver specialists in the Nation. They have never had a patient like my daughter and they sympathized with our dr but they were not able to help our dr either. They said she's ran all the tests that they would have done and the liver biopsy would be the one to tell us what could be wrong with our daughter, if that couldnt tell us anything than they didnt know what to tell her either.

I dont know if I'm happy about that or sad. I think I'm going to let it be for now. My daughter looks so normal. Currently, she's happy, cheerful, playful and doing well. Even when her liver enzymes jump up to the thousands, she was never once jaundiced, lethargic, pale, unable to eat or drink. She's my mystery baby girl...the love and joy of my life. I hope that this is just a fluke and we can move on with our lives....take care everyone..

Alisha

[nicoleh]

Hi Alisha,
I'm glad to hear that your DD is happy on a normal diet and it doesn't seem to have made her worse. I'm sorry though that you still don't have any answers and seem to have hit a dead end.

I can tell you what I would do - in case it might help?

Seeing she shows no outward symptoms, it's possible that there's something genetic that your boys also have (not showing any symptoms either), so I would get her siblings' blood tested for liver enzymes. if they are also elevated, that is a clue to probably being a genetic disorder, although it could also mean a response to a common environmental agent (think a poison in the water or something).

Being the liver, toxins are always a possibility. I would have her blood tested for any toxins that they can test for but I would also have a hair mineral analysis done for heavy metals etc. this will almost certainly have to be done at a private lab and arranged by an environmental specialist or naturopath.

and I would take her to a really good doctor who specialises in holistic healing - Thomas Cowan is someone I think in CA that I would try, and his office could probably recommend someone closer. The reason I would do this is that the doctors are out of ideas, but there's a chance that someone who thinks outside the box may be able to come up with some different possibilities. they also may be able to recommend some general liver remedies (which you should, of course, run by her other doctors before trying) that may help her out even if you don't get a diagnosis.

I would also consult a kinesiologist who is registered with the ICPKP (google) and find out if they can use muscle testing to help work out what is wrong with her. you do not want the kind that involves 'test kits', or holding substances on the body, but someone that can ask any 'yes or no' question about the body. you'll have to ask around probably - the average kinesiologist would be a waste of time, but a good one can be a lifesaver (as we have found out with DD). You probably have no idea what I'm talking about, but if you found the right practitioner, they would. a holistic doctor could also probably advise you on this.

anyway, those are the steps that I would take if she was my DD. maybe you might like the sound of some of them, but feel free to ignore as well!

Good luck, I really hope that things go well for you.
Nicole

[alisha1234]

Nicoleh,

I really appreciate the information you gave me. Toxins crossed my mind early on but I thought that it would cross the Dr's minds too and I guess not. I'm definitetly going to look into finding a naturopath/holistic Dr. I'm also looking into getting a hair mineral analysis done. Our Dr's are all out of options but I have to keep fighting for my daughter. Thanks for all the great info.


Alisha