Anybody Had Problems Weaning BA Kids Off Phenobarbital???

Sophie is 13 months old and had her Kasai aged 7 weeks. She is doing really well and we are currently weaning her off Phenobarbital but its playing havoc with her sleep patterns! She finds it more difficult to drop off at night and wakes up shouting during the night. I guess its something we will have to ride out but would be interested to hear about other people's experiences.

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14 Replies

  • I hope it settles down quickly. Something I'd like to know too, my son had his Kasai at 19 days, has just turned 10 weeks, and hates taking his phenobarbital!

  • I hope it settles quickly for you, my son also had Kasai at 7 weeks, he is mow 8 months and was on 2mls of phenobarbital it was then reduced to 1ml after 6 weeks and he was taken off it completely about 5 weeks ago. It hasn't changed his sleep pattern but we were told to look out for him scratching more and if I found he was itching to start giving it again. Thankfully he seems to be doing well without it. How much phenobarbital was Sophie taking?

  • Sophie was on 45mg. She's down to 15 & stops completely next week.She didn't have the syrup form. Apparently its just as vile. Sophie hated it! But things improved with weaning because we could mix crushed tablet with fruit puree. It is really bitter.

    Glad your little ones are doing so well :-)

  • Hi, my daughter had a Kasai aged 6 weeks and is now 2.5 yrs, doing really well. I'm afraid I don't have an answer to your question but I've posted because I was quite surprised by the topic: that is, weaning off Phenobarbital. My daughter has been on 45mg/day since shorty after the operation over 2 years ago and we have been told that she will be on it for the foreseeable future and probably into adulthood, just as a precaution. I'm really surprised to read that other children who were also doing well have been advised to wean off it altogether. Is there any particular reason for this? Perhaps a difference in drug regimes at different hospitals? (My daughter is treated at Kings College London). I would be interested to know why others' children who are also doing well post-Kasai have been taken off Phenobarbital.

  • Hi Brenna, My son is at Kings and starting to be 'weaned' off it now. Was on 45 mg but reduced it to 30 mg for one month then 15 mg next month. i queried why he was still on it as the dose had not changed since he was 11 weeks old! So they said he could come off it! Perhpas you just need to ask?

  • Thanks, I will ask about it again. (Of course we always ask about our daughter's drug regime at each follow up visit and we are always told it will stay the same.) I'm concerned about some of the possible long-term effects of phenobarbital that I've read about but we assumed it was a 'necessary evil' as the optimal treatment for her liver. Now I'm hearing that other children are coming off I am going to ask more questions about why she still has to be on it.

  • Hi Brenna, Sophie also under King's. I'm not sure what criteria the team uses to decide which kids are weaned off Phenobarbital. They want to see Sophie in 6 months to see how she is doing being off it.

    Its great hearing kids are doing well on Kasai!

  • Hello. My little BA boy was on pheno from Kasai until he was nearly 4. He didn't mind it (tablets disolved in water) and it seemed to make no difference to whether he was on or off it. He's never had itching with or without pheno. It didn't make him sleepy whatever time I gave it to him like some kids experience! He came off it when it was decided to put him on the transplant list. He went from 45mg to none in about a week. I think I read somewhere about the possibility it can cause behaviour or concentration issues in some children but I don't know how accepted or accurate that is. It was nice not having to remember to prepare it though!

  • Oh, should have said... we go to King's, too.

  • We're at Leeds. He's on 4ml a night of the liquid phenobarbital. The sneaky bugger usually keeps it at the back of his mouth until I have a lapse of concentration and then spits it out!!

  • My daughter needed phenobarbitone for a couple of years,when she was aged between 3 and 7, she had the liquid form. I think I weaned her off over a couple of months, she had no problems sleeping or behaviour wise {apart from being totally spoilt ! :) } I appreciate things have changed since my daughter was a small child and treatments may vary. We were well supported with a fantastic LIver unit team and I would always turn to them for advice and reassurance. My daughter is now 21 and just graduated from university. She had a Kasai aged 10 weeks at BCH. Take a day at a time , hope Sophie does well

  • Sophie still unsettled at night but appears to have upset tummy so could be nothing to do with pheno. From what you guys have said they generally come off it without a problem. Like McSousa's little boy, Sophie has never seemed particularly drowsy on it. I always feel a little apprehensive when she stops a drug because i don't want to rock the boat when she is doing so well. She stops altogether next Thursday so I'll keep you posted! !

  • Hiya, I used to be on 3 phenobarbital tablers a day until I was about 15 then the hospital suggested that I come off the phenobarbital. The best way to do it is to give her 2 1/2 for a few weeks then 2 theb 1 1/2 then 1 then half then none but keep a close eye on her when shes stopped talking them hope this helps

  • I came off my phenobarbital at 17 i found it hard sleeping i use to wake up all suddenly but i would be sweating alot i only had it for a few weeks thou i use to relax when i smelt lavender

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