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Little boy post liver transplant

Hi, my son, now 2and half, had a liver transplant at 8 months old.

My questions are, any suggestions for helping with understanding what is happening to his little body, and why?

what we can do about it?

why be ill at birth with such a strong vital force? (silly question,i know!but there it is!)

Do you know of anyway to get his stem cells working properly and to get the major histocompatility cells to flag up in his liver and stop him rejecting it, and therefore come off immunosuppression?

His history follows....

Normal pregnancy, born at home in water, no complications at 43 weeks. Used herbs and homeopathy for birth.

Jaundice presented 24hrs old.(which i ignored, presumed to be brest milk induced.)

At 1mth, jaundice unresolved. Diagnosed through blood test with Biliary Atresia.

Kasai op at 7 weeks old.

Very high hepatic artery resistance index, led to being listed for Tx.

From time of Kasai to transplant he was treated by my homeopath to strenghten vital force, and help liver drainage, and spleen.

No livers were coming up on the list. I donated part of my liver at 8mths.(2 years ago on 18/6/06!!) I have put my liver thru its paces with alcohol and recreational drugs. Although it was thouroughly tested obviously before Tx and was physically healthy with no damage. (Perhaps damage is also held on another plane?)

Tx successful.Liver unit (Kings college Hospital, London) said he is not to have homeopathy, as they do not know the effects of remedies on liver.

Homeopath confident to take on Tx unit all above board. I wanted him to stablise b4 treatment.

He was discharged on Tacrolimus, Mycofenilate Mofitil, Prednisolone for immunosuppression.

Had a very good year. Went to nursery, all development normal. Liver function tests good.BUT didn't go for more than 2.5 - 3 weeks without having to have anti-biotics for some sinusitis, ear infection...Against liver unit advice I self-administered to him homeopathy, namely Belladonna, when indicated and found it kept us out of hospital, off anti-biotics.I was told that he must never have Chamomilla in particlar as it is synthesised in the liver.

He always had probs getting the right level of Tac, it kept getting too high.(no kidney damage tho.)

The MMF (mycofenilate) caused diahoria, so they reduced dose.I now think they should have stopped the stuff as it caused bone marrow suppression and surely the presence of the diahoria, still present on half dose, but managable, is a sign that his body could not tolerate this drug.

Sept 2005 contracted Cryptosporidium from nursery.Became extremely ill.

Admitted to hospital, tried to treat Cryptosporidium with Nitazoxide.Didn't work.

Then in and out of hosi like a yo yo.Used homeopathy. THink I may have given him 1 dose chamomilla, not too sure tho.

Dec 05 his blood count fell dramatically. HIs liver function became poor, with GGT over 500, AST 450.

Had 2 liver biopsies, with no rejection noted.Cause for poor liver function unknown.

Diagnosed with Very Severe Aplastic Anaemia.

2 weeks in isolation whilst bone marrow biopsy and trefine done, showing very little activity in the marrow and cells present that indicated allergic reaction to something. We have assumed this to be Nitazoxanide.I denied having ever used homeopathy. (The docs asked as I am always saying I want to)

Anti rejection drugs changed to Ciclosporin (currently 0.6mg BD), and still on Predinisolone (1mg OD). Also put back onto to Ursodeoxycholic Acid (3mls BD still on)to promote bile flow.Short treatment (3-4weeks) with Calcium Folinate (Folinic Acid)to stimulate marrow.

He made an unexpected and unheard of recovery without the nasty treatment for Aplastic Anaemia. He has not showed signs of Leukaemia.Every night in the liver unit I was giving him very rough and basic Reiki, and lots of 'bigging him up' and positive affirmations when he was asleep. I told him that they were his stem cells and he had to tell them to start working properly.

He was admittd for 1 week before Xmas for infection and IV anti-biotics.

Jan 06 liver function made tiny improvements. He was admitted for further tests, PTC which showed bile ducts had been inflamed, although resolving, and debris was in liver which they flushed through.

Then Feb ish Aplastic Anaemia recurred. He was whisked in for Bone marrow biopsy (think they are looking for Luekaemia) which they were pleased to see more activity in marrow than expected.

Slowly slowly things have started improving.

He had 2 weeks of normal blood results (liver and marrow-he is bled weekly) then on 15/5/06 developed strep pnuemonia, which I quickly realised and got him into Hosi for IV anit-biotics, they used Cefroxime and Amoxycilin.

He seemed better that night, ie 12 hours later. Discharged after 5 days with oral Amoxycilin 9 days.

His White cells and neutrophils went high for him as you would expect post infection.Liver function remained stable.

I was angry as Cefroxime has listed in BNF side effect of Aplastic Anaemia which they did not discuss, but my battles with them are a minor side issue and another story.

His blood count then dropped again.

Last 2 bld tests it has shown an upward trend with todays results White cells only slightly down, but on the up.

Liver function test within normal range. Yippee! I have again been doing the positive suggestion thing, and a little Reiki.

Thing is I do not know what I am doing but the intention is there.

This little boy is truly amazing. He has an incredibly strong vital force. This is noted by all who meet him. Even at his lowest, baddest blood results he is still vibrant.His physical development and speech are excellent. He has been going to his childminder regularly as you would not know he has issues.He seems to be able to draw on an innocent healing connection.Don't get me wrong, he is a proper little crazy head!A good word for him would be 'RAH', he is 'brave and fierce like a roaring lion'. He takes it all in his stride.

The ciclosporin has made him hairy, and given him swollen gums.

He has started waking at 1.45am.I know this is liver o'clock, but his liver function tests are OK.Unless its me who wakes who then wakes him...(he sleeps in my room)I drink everyday, maybe 2-3 cans of lager or half bottle red wine. Do you think that the psychic connection between our livers is still strong and if I drink too much his liver feels it?

Also remember he is a normal 2 and half year old child and wont eat anything I put in front of him, unless it is pasta or potatoes, rice cakes or brown bread, banana and yoghurt!! He has a (hopefully transient) lactose intolerance which came on after Cryptosporidium. He has recently started to tolerate goats cheese.He has rice milk)200-400mls per day, soya marg, yoghurt, etc.He has to have bottled water.

Current meds are
Anti rejection drugs Ciclosporin (currently 0.6mg BD),
Predinisolone (1mg OD)
Ursodeoxycholic Acid (3mls BD
Nutrini (medical milk for poorly kids who don't eat properly) 1-3 bottles per day at 200ml per bottle.

Complementary therapy is

Acidophilus 1 cap per day.
Cranial Osteopath once a week.

Sorry for long post. Hope it gives someone out there something to get their teeth onto. I'm exhausted with trying to understand it.
  monsta on 2006-06-20
This is just a forum. Assume posts are not from medical professionals.
Its really quite simple - as long as he is on cyclosporin -- or other immunosuppressant he will have a depleted immune system .

This means that he will get many infections and that he will be given some form of antibiotic or prednisolone .

This means that he will be cured TEMPORARILY but will gp under again and again.

If you stop orthodox medication the liver will be rejected.

You are caught in a vicious spiral , Also Prednisolone neutralises homeopathic remedies.

Keep up the Acidophilus as the antibiotics destroy the flora and fauna of the GUT .

At some time in the future he may stabilise , the liver will be tolerated by the body and he can then gradually come off the medications.

Pray and wait

Best wishes
walkin last decade

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