Clinic, good so far

Clinic went well on the whole. Weighing and measuring was excellent as usual; weight 12.4 kg and height 88 cm.

Next we saw Dr McKiernan (the man himself this time!) who is very pleased with how Hannah is doing. His examination found what all the others have; liver palpable about 2-3 cm below ribs, spleen not palpable. Based on this, he speculated that the most likely follow up is normal clinic in 12 months, then ultrasound and endoscopy two years from now. However, he did say this depended on the ultrasound.....

I asked some questions about Hannah's prognosis. Medium term, it is very good. In the last study (the good news is that this is soon to be updated, so I shall keep an eye out for that) done in the UK, 85% of successful Kasai patients had their own liver at age 10. The biggest obstacle to that at this time would be portal hypertension. In the long term, her liver is not likely to last all the ups and downs of a normal lifespan, but exactly how long it will last is impossible to say. They would not want to wait until she was ill before transplant, and would prefer that she would be listed when her own liver begins to cause problems.....in other words, why try and keep her going with a deteriorating liver (and risk time running out) when there is a successful therapy out there.

We also had a talk about Hannah starting playgroup after Christmas, and how much medical info to give the staff there. We decided it best not to alarm them with talk of liver transplants and GI bleeds, unless either of those things become likely. Hannah does not need any special treatment or precautions, and as for illnesses, Dr McKiernan shares the same view as I do, that she is better exposed to things now, while she is pre-transplant and good and healthy. So something along the lines of, "Hannah has a serious liver disease, but she has had successful treatment and is now stable. No particular precautions need to be taken with Hannah while she is in the pre-school setting. Like any other child, if Hannah becomes unwell at pre-school then I should be contacted. If Hannah's medical condition should change, I will inform the pre-school staff immediately in writing."

Following the clinic visit was Hannah's ultrasound. It was nice to see Rachael, my best friend's sister, who is a radiographer there and popped out to see us. The sonographer was the same lady who did Hannah's ultrasound the day before the Kasai, and she is lovely. Hannah was much more cooperative this time, not being a starving, screaming six week old baby who needed a team of people to hold her still - not a very pleasant memory. She was angel baby personified today though, so still, holding her dress up out of the way.

I got a little basic feedback from the sonographer, although obviously will have to wait to hear from Dr McKiernan for detailed analysis. Her blood flow is "OK" and I hope this means she doesn't have portal hypertension, but although her spleen has never been palpable, it is nevertheless enlarged, being 10 cm (the size it should be for a 10 year old) rather than 8 cm.
So, A- at the moment I think, and as I suspected, we await the interpretation of the ultrasound for the true picture of where we are now. If follow up is needed quickly, I will be phoned in the next few days, otherwise a couple of weeks until we get the clinic summary letter.

Of course I will update when I get the ultrasound feedback.


***I was also pleased to spot a sticker on Hannah's file during the visit, saying "This patient is a part of the biliary atresia audit". As far as I am concerned the more BA data there is the better.

***Hannah's urso has been upped to 150 mg (3 ml) twice a day, to try and combat her itching and stay in line with her growth, a move I am pleased about as it is the only thing that has made any difference! Fingers crossed......

Birmingham on Monday

On Monday Hannah has first check up for a year at Birmingham Children's Hospital. We will see Dr McKiernan (hopefully, otherwise a registrar) first, followed by an ultrasound, which will tell us how good her liver is, and whether or not she has portal hypertension.

The signs are at the moment that Hannah will be able to keep her own liver for at least the next several years. I am hoping the ultrasound shows that what is going on inside is just as positive as what we can see from the outside, and what can be gleaned from labs and basic examinations. I shall have a few nerves until the visit is over....and I am going to make the most of our annual visit and turn up with a list of questions.

I shall update with the results on Monday.

Excellent Clinic Visit!

Hannah's outpatient appointment at the local hospital on Friday went very well indeed! She now weighs 12.2 kg (around 26 lb 12 oz) from the last weight of 10.75 kg which I was worried about back in Feb....so no worries now. Her liver is still enlarged about 2-3 cm below her ribs, but has not got any bigger since November, and her spleen is not palpable. Her blood results were excellent (Bilirubin 8, ALT 25 � woo-hoo!, Alk Phos 275)

So although this was just a basic check up with a general paediatrician, it could not have gone any better, and I am VERY HAPPY! I am going to enjoy these results until we go over to Birmingham for a more detailed check up in the summer.

A good month for Hannah

Hannah has been much more lively the past month (tummy bug at beginning of March, can't remember if I mentioned it before), although she still has a perpetual runny nose. The molars she was getting are all through, so a teething respite for the moment.

I haven't had her weight rechecked yet, as the anxiety about that was laid to rest the following week when it was found that although she hadn't gained weight, she had grown 5 cm! I plan to have her weighed this week or next.

Eating wise she is still quite faddy and there are not that many things I can get her to eat. She loves bread, crackers, rice cakes, weetabix and other cereal based carbs, but won't eat potato much. Meat is difficult to get into her...I can only manage ham or processed sandwich meat. Pulses and vegetables...big no no. Fruit she does like...anything except white grapes. She is also addicted to bananas..can a child eat too many bananas? I would imagine so, although many tantrums result from the fact I will only allow her one a day. Fortunately she likes most dairy..milk, all kinds of cheese and fromage frais. Anyhow, the main thing is that she is doing pretty well on her own brand of diet :)

Healthwise, we are approaching our local clinic visit at the beginning of May, and bloods just before that, so nerves are starting to creep in. We are not over at Birmingham until the summer. Hannah's tummy looks pretty big to me (but then it always has...lol) and I can see the edge of her liver...don't really like that. I am anxious to see if her spleen has become enlarged...I hope not.

We have finally just got to start on Rifampicin for Hannah's itching last Saturday. She has started on the lowest possible dose. I think there may be a little improvement, but there are still marks on her neck. She has left her ears alone a bit more, I think...it's so difficult to tell when it is naturally fluctuating anyhow.

Otherwise, she is a mini monkey and loves to climb! She is not deterred in the least by falls and is straight back there. Her speech is progressing all the time, and she can manage to link two words together, as well as having a good vocabulary. Of course she can already say "silly mummy"!

Normal stuff, unhappy Hannah

Since about mid-January Hannah seems to have been constantly suffering from some virus or another. She had two heavy colds/coughs in quick succession and then last Thursday she had a sickness and diarrhoea bug which is still not quite 100% cleared up. She also has back teeth coming through all over the place, is pretty worn out and clingy, and in general is not a happy bunny.

In addition to this she was weighed today and hasn't gained ANY weight in the last four months :( She was on the 75th centile before (!), so this means she has only dropped down to just below the 50th, but I still feel a tad anxious about it...especially as I had been thinking she looked thinner, but I am trying to remember that babies are much fatter than toddlers....:)

I know these are all routine things, but coming all at once they have knocked her sideways somewhat, and I am looking forward to getting my usual, swinging-from-the-lampshades Hannah back