Friday, 12 March 2010

More good news

For one reason or another (appointments clashing or his holidays) a couple of months have lapsed since we last saw dr ch. He's Hope's main man in my view. It's now coming on 4 months since Hope's seizures miraculously vanished, and she's really developed a lot!
As is norm, the first ten minutes of the appointment was spent with dr ch holding hope and admiring her. Honestly, the way he is with her, you'd think he was a proud grandparent rather than a doctor. Anyway, he was sooooo pleased with her and how she's doing. He said it's beautiful to see her so well and alert and attentive- even though hope was being a bit of a diva :0)

The recommended dose of vigabatrin (epilepsy meds) is between 30-150 mg per kg of body weight. Though higher doses can be given. At one point (Under instruction of course) I was giving hope 180mg per kg of her weight to try to keep the nasty seizures at bay. However, since the seizures have vanished (touch wood) I've not needed to increAse her meds, yet her weight has continued to increase, in effect bringing down her dosage to about 140mg per kg. However, this is still a high dose, and being aware that her kidneys are having to work very hard to process this drug, I asked dr ch if he would agree to me dropping them. I half expected to get a telling off for even suggesting such a thing..something along the lines of 'if it's not broken...'
Anyway, he did agree. And thought it the right course of action. His recommedations on the drop were greater than I feel comfortable with, so I'll probably do it a lot more gradually. In fact this particular appointment was last week and I still haven't even began to reduce them; I'm waiting for hope to be in 'tip top' health; and at the moment she has a cough, Is getting over a suspected case of hand, foot and mouth disease and being treated for oral thrush :0/

Her physical examination was positive; they are happy with her growth, but more noteworthy is her reflexes are now 'normal' (previously reffered to as 'brisk') and her tone is now 'normal' (instead of 'floppy').

And, I've ....(struggling for the right word here)...given in/ changed my mind (neither of those really fit; I haven't given in because I haven't been pressured in the slightest, and changed my mind isn't true either, because I really don't want them done still, but I know it's the right thing to do ) about the whole skin and muscle biopsies. After 6ish months, I've decided we need to get them done. all the other tests have been inconclusive, but show markers (lactic acidosis) for mitichodrial myopathy. There's a chance that by knowing more, Hope could be given vitamins/supplements to balance things out. Dr Ch now thinks that there's a fairly good (75%) chance that we still won't get a firm
Diagnosis. That suits me just fine! I don't really want to know. Would anybody want to know how long they have? Really spoils things I think.


  1. I hope Honkie is getting in tip top health and that the gradual dropping down of the medication goes smoothly and uneventfully for her.
    Keep us posted on the biopsies. Sounds frightening and I hope you get the results you want from them.
    Lots of love to all of you
    Rachel B XXXX

  2. Checking in on Hope...Thanks for the update. Keeping you in my prayers.