Wednesday, March 1, 2017

From liver toxicity to muscle spasticity

Artist: Edward Siebold (1829)
Onwards and upwards. I'm now post surgery and slowly recovering with the emphasis on slowly.

I finally had that gynecological procedure I've been mentioning on and off for one and half years. I'll leave it at that to avoid TMI.

The crux of it is I can't lift for a while, can't even turn C. over while she's in bed, have been awfully weak and have even had a low grade fever for the past few days. Today was the first day of semi normality, thank heavens.

So parents of children like C.: Beware! All that lifting and carrying isn't only dangerous for your back. Your pelvic organs could be victims too. Nobody ever shared that secret with me until surgery was my only option.

Our Australian darling of a caregiver has left us to resume the life of a recent university graduate in her late twenties with a boyfriend from these parts. We wish her much happiness but already miss her terribly.

Her replacement as a carer for C., a kind, experienced woman of 53, is stressing me out despite her good intentions. There seems to be a communication gap since English is her second language and we don't speak a word of her first. She also seems eager to take charge even when I'm around -- but is caring and sensitive towards C. so we'll just need to iron out the kinks.

Enough grumbling. We would never manage without her.

This week she and the Hubby brought C. to the gastro guy who specializes in liver diseases and who gave us some good news. "The first good news we've had about C. in twenty years" as the Hubby put it.

For starters, the gastro's report states that the "probable diagnosis" for her liver is Valproic Acid-Induced Liver Injury, although elsewhere he qualifies that by writing Valproic Acid is, in his view, the "DD (=Differential Diagnosis) with a fair suspicion of Autoimmune or Idiopathic".

So, a warning for any of you with kids on Valproic Acid: Be scrupulous about follow-ups and insist that the neurologist address any anomalies in blood test results. Also insist on tests for Ascites (there's an ultrasound to confirm and quantify that symptom) and any other fluid retention. Our neurologist had been dismissive of blood results that were red flags for our pediatrician. And she (the neurologist) never bothered to ask us about fluid retention, let alone examine C. for signs of it.

I would question one point that the gastro made in his report: "C. commenced a low salt diet and Aldectone 50 and Fusid 50 with excellent results". That's inaccurate in two ways:
  • One, C. already was, and always has been, on a very-low-salt diet when her liver problems were first noticed. 
  • Second, the results of all that Aldectone and Fusid (both forms of diuretic) were not as he described them. Unless you call rendering C. gaunt, seriously dehydrated and requiring IV fluids in the ER "excellent results".
The gastro guy also recommended a drug to remedy C.'s spasticity (I mentioned that here: "My daughter thinks she's a surfboard"): Baclofen, which he obviously doesn't prescribe since that's outside his field. He suggested we consult with our neurologist about it.

We did that, and she expressed surprise at the gastro's advice because this drug is known to pose liver risk. That, along with the info my daughter in law the clinical pharmacologist gave us, that Baclofen can exacerbate seizures - has left us in a quandary.

If any of you have ever given your children Baclofen,  I'd appreciate hearing what results you saw.


Bohemian said...

Well, for different reasons {Serious Mental Illness} our Grandson was on that first med you mentioned and his liver began to crap out significantly, along with kidneys and thus recently they have taken him off all Psyche Meds completely and we're coping 'cold turkey', which isn't going as badly as we expected, tho' every day is a new adventure. Alas, becoz he can no longer be medicated and Therapy never works for him we're losing all Services since there is 'nothing they can do' for him now... so I'm Appealing that decision as we speak. So I can relate to the quandry of choosing between the lesser of two evils when it comes to severe side effects from meds that can alleviate symptoms or stabilize one condition only to create yet another serious one. I am so Glad you have found another Caregiver to assist and since she takes over in your presence, and due to her age, I would think she's trying to be very Grandmotherly and treating your Loved one as if she is Family and that can indeed be a real Blessing actually once you adjust to it. As a Grandparent and Great-Grandparent I know my best intentions sometimes get carried away with all the Grands and not just the two Special Needs ones we're raising! *winks* I'm glad my Adult Children are long suffering about any overkill I might have about helping. *smiles* I do hope you will take it easy as much as you are able after your own procedure, had a similar one while being a full time Caregiver and that is a very difficult thing to balance both your needs and theirs while recovering from it. Virtual Hugs... and Blessings from the Arizona Desert... Dawn... The Bohemian

The Sound of the Silent said...

Hi Dawn,

Thank you so much for sharing your grandson's experiences with Baclofen. We have factored that in with the rest of the information we have gathered and, for now, are delaying experimenting with it.

You sound like a very involved and caring grand and great grandparent - something that surely eases the burden for your children who are parenting their children with special needs.

Wishing you continued strength and health to be there for everyone who needs you.

Elizabeth said...

I have friends who've used Baclofen for their kids with cerebral palsy, but I didn't know about the contraindication for seizures part. I will ask around!

Elizabeth said...

I have friends who've used Baclofen for their kids with cerebral palsy, but I didn't know about the contraindication for seizures part. I will ask around!

The Sound of the Silent said...

Thanks, Elizabeth. I'd also love to learn the precise concentration of the THC oil that you give Sophie every night.
Ours is:
THC 3% (33 mg/g THC) and
CBD 0.15% (1.5 mg/g CBD)