TOPIC:

I was told panadol was fine Cindi, plenty of water as well. Hopefully he will come good soon were all batting for him here.

Cheers

Hi Enkel,
Did you mean me or J?
I had lots of bad symptons, but I got cured 2 years ago eventually.( but I'd had the virus for probably 30 years)

J had some sides from the hep I reckon, tiredness, headaches , aches etc.

x

Oh hi Paul,
Thank you!! I was just going to call you, glad you saw my post
It must be even hotter out where you are.
How are you?
x

Wow, Cindi reading your story gave me chills. I have had HCV for 34 yrs, i too had tried and tried for a child, many years ago. After losing 2, I finally got my awesome miracle boy, 13 weeks prem., now a healthy 10 yr old (with ASD). I always dreaded I may have passed it on to him but when he was born I was told he was tested and didn't have it. Was your son tested at birth?
I can't get over your CJ - we use that too, I'm 'C' and he's 'J'!
Wishing him all the best in his treatment

Hi Chejai,

It all sounds similar doesn't it!! I as well lost some pregnancies before I had J. He had some language proplems , didn't talk till 4 years old & had to see a speech therapist for many years.
No my son wasn't tested for he hep virus till he was about 3.
If yours was tested, he must be ok.
How old is he now?
My J was 3 weeks premi, they waited till then before getting him out. I had Cholestasis of pregnancy because of the hep and it was horrible.
I was so worried he'd be still born, and the rashes was unbearable, but nothing helped,I was too scared to have any meds in fear it may harm him, just had to wait till he was advanced enough for them to get him out. They monitored him constantly till the 37th week.

Did you get the Cholestasis? The HCV can cause this in the 3rd semester.

I read your story post & was so horrified at the treatment you got from your old specialist.
Glad you found Dr freeman, he's a good kind Dr.

Hope your tx goes well, and also your brother.

Love Cindi x

Hi everyone,

I just received J's next batch of meds as we only got 12 days of Twinvir to start with.

In the package is the Sof & Led bottles. NOT the Twinvir tabs!

Should he have them now after having the Twinvir?

I thought he was just having the Twinvir, now we got the other, a bit confused.
I think they're all the same though?

Is that right? anyone know?

Also do you take them together?

Thanks.

Hi Cindi, Yes, our stories are 'spooky' similar! My son is 10 yrs now and he was non-verbal until around 3 1/2 yrs, had speech and occupational therapies. I homeschool him now. I didn't make the 3rd trimester, my waters broke at 25 weeks and I was hospitalised to be given drugs to keep him inside me as long as they could with him stuck in breech position in around 10% fluid. But he was impatient and came out at 27 weeks!
So sorry to hear your son is going through this. I really hope his tx is successful.
Just read you got a delivery of different drugs - hope this is part of his regime and not a terrible mistake.
Best wishes.

Cherie

CJ wrote: Hi everyone,

I just received J's next batch of meds as we only got 12 days of Twinvir to start with.

In the package is the Sof & Led bottles. NOT the Twinvir tabs!

Should he have them now after having the Twinvir?

I thought he was just having the Twinvir, now we got the other, a bit confused.
I think they're all the same though?

Is that right? anyone know?

Also do you take them together?

Thanks.

Hi Cindi


That sounds slightly unusual if you've previously been sent Twinvir, however I can't imagine it would be a problem as long as the dosages are Sofosbuvir - 400 mg and Ledipasvir - 90 mg. And yep take them both together.

Thanks Zhuk,

I texted Dr James & he got back to me pretty quickly explaining things, all ok.
They are the same drugs just in different form.
Still find it hard to believe how quick Dr James replies, he is an amazing Doctor!! Never known a doctor who responds like that.
He's a real caring one.
Aren't we all lucky
x

Hi Cherie,

Yes, spooky!!
I wonder if the virus caused your premature birth?
My son also had to have the occupational therapy , bad coordination.

He's ok now.

They are lovely at 10 years of age.
Enjoy him

By the way, J feels good again now, ( after a few hours) I do think it had something to do with the extreme heat here in Sydney & he wasn't drinking enough water.
Learned from that now.

Thanks, I was worried too, but yes the drugs are the right ones.
Everything good.
x

Great to hear the drugs were fine and yes, how lucky for you to have Dr Freeman contact you so quickly. Glad to hear J is feeling better, I'm constantly reminding my J to drink water - he wonders why he has a headache and is dizzy :ohms: Yes, 10 yo I will make the most of it before the dreaded teens, he's so sweet and affectionate and talkative now

J had his first bloods a few days back (end week one) and Dr James told me his LFT's back to normal range already !
Hope for VL end net week.

J has been finding things a bit harder lately, I think from the extreme heat here ( headaches )
Also his Urea up a bit so trying to encourage him to drink more water.

Another hot one here in Sydney today, 40 degrees
x

Day 12,
All going well here,
J on the Sof capsules & Led caps now, (same as Twinvir only in capsules) now,
he feels good, no headaches, lots of energy.

Great!

Why you changed the twinvir?

CJ wrote: Day 12,
All going well here,
J on the Sof capsules & Led caps now, (same as Twinvir only in capsules) now,
he feels good, no headaches, lots of energy.

Let young J know that he has plenty of people on here closely following his story and wishing him well Cindi.

cheers