I've been worried about Hannah for the past few days. Although she still has plenty of energy and is eating normally, she is significantly more itchy than normal, is pale with dark circles under her eyes, and her poos are foul smelling with mucus in. I took her to the doctor yesterday, and he thinks she probably has a virus as her glands are swollen in her neck, but he sent her for bloods and we have taken a stool sample in today to check for anything yucky. Bloods should be back Thursday. This was the first time that Hannah was really negative about having her blood taken (I don't want to be brave....it made my heart ache) and that she has cried significantly. Probably because she is finally getting old enough to remember what happened last time, as we have been lucky enough for her bloods to be fairly infrequent.
On a more positive note, I meant to update back in December that Hannah excelled at her 2.5 yr development check. The health visitor could not believe that this was the same child whose file she read before the appointment. When Hannah showed she can talk in sentences and could name the colours of the blocks as well as stack them, she said we may as well move straight to the 3 year check! Hannah is 90th centile for height and 50th for weight, so physical development is going great too.
Also, Hannah is starting two mornings of pre-school at the end of February...I'm hoping she takes to it as she can be a bit clingy. I think she will enjoy it if she can get over the fact that mummy is going to leave her there.....
Will update later this week when we have some results back.
Tuesday, January 09, 2007
Saturday, November 04, 2006
Clinic and bloods fine
The check up yesterday went very well. No massive spleen (it was never that likely)and bloods normal (Bilirubin 4, ALT 20, Alk Phos 274). We successfully negotiated the new hospital, including the bus. I was very impressed that we got a bleeper at the pharmacy for when the prescription was ready (he prescribed an antibiotic ointment for a sore she has developed on her chin), and that there was somewhere decent to get a snack and a coffee.
I have been holding my girl extra close today. One of our friends (and I do consider them friends) from Liver Families lost her baby boy last night. He has been very ill for several weeks and got too sick to be transplanted.
Having a child who is ill, and knowing people whose children are even more ill, or have died, makes you see your own children in a new light. You still get cross with them, but you also appreciate the little things in a way no one who hasn't been there could understand. I will be tucking Hannah up in bed at night, and I say a prayer of thanks that it is her own bed and not a hospital bed. Today I am just thankful that my children are here for me to hold.
I have been holding my girl extra close today. One of our friends (and I do consider them friends) from Liver Families lost her baby boy last night. He has been very ill for several weeks and got too sick to be transplanted.
Having a child who is ill, and knowing people whose children are even more ill, or have died, makes you see your own children in a new light. You still get cross with them, but you also appreciate the little things in a way no one who hasn't been there could understand. I will be tucking Hannah up in bed at night, and I say a prayer of thanks that it is her own bed and not a hospital bed. Today I am just thankful that my children are here for me to hold.
Friday, October 27, 2006
Brave Girl
Hannah had her six-monthly blood test today. I was so proud of my brave girl, who despite flinching a few times did not make a sound or shed a single tear. Once it was over ("I can have my sweeties now?")the production of a lollipop and a Winnie the Pooh 'braveness' certificate was enough to make the whole thing worthwhile for her.
We shall get the results back when we go to Dr Coad's clinic in a week.
We shall get the results back when we go to Dr Coad's clinic in a week.
Wednesday, October 11, 2006
Mainly Portal Hypertension
I emailed Dr McKiernan last night to clear up the questions I had following Hannah's ultrasound. I had hoped to catch him at the CLDF Conference last Saturday but didn't get aorund to it. What I did get chance to do was to thank Professor Millar personally for the clearly excellent job he did with Hannah's Kasai, and to show him just how lively and full of beans she is.
Back to Dr McKiernan....kudos to him for emailing me back straight away first thing this morning! Sadly, Hannah's enlarged spleen does mean she has some degree of portal hypertension. The fact that the spleen cannot be felt means that it is not too severe. He doesn't think there is a need to rush to check her platelets unless she is bruising more (an enlarged spleen can cause low platelets....the spleen sort of eats them up and the bigger it is the more it eats up....and low platelets can mean easy bruising and bleeding) and an endoscopy to check for oesophageal varices is not really indicated at this point....if her spleen gets large enough to be felt then that will be the plan.
Portal hypertension is very common in patients with biliary atresia (at the CLDF conference we were given a figure of 70-80%) and not all patients with portal hypertension bleed from varices...I know of a number of people who have had portal hypertension for a long time with no complications. I had also suspected that Hannah might have it, as she has some visible veins on her abdomen. Nevertheless I still feel pretty gutted. I did hope that Hannah would be one of those who didn't develop portal hypertension.....it blemishes our illusion of normality a little.
It doesn't really change anything though...as things stand, there is not any need to change the way her condition is managed, unless things get worse....still one day at a time, and something specific to pray about. I spoke to Father Tim yesterday about whether Hannah should remain on the 'prayers for the sick' list at church, when she is climbing around everywhere of a Sunday morning (my thoughts, not his). I said that although she is doing so well, I feel strongly that the prayers of our church community are contributing towards that. So we decided to leave her on for the time being....and I'm very glad of that now.
Other stuff....Hannah has had her flu jab for this year, and is due to have her adult pneumococcal in the next few weeks. Her next bloods are due at the end of the month, and it is not long now until we see Dr Coad - our first visit to outpatients at the brand spanking new University Hospital. I am going to attempt the bus to get there....wish me luck!
The CLDF Conference by the way was excellent....watch my blog for notes on the biliary atresia talk!
Back to Dr McKiernan....kudos to him for emailing me back straight away first thing this morning! Sadly, Hannah's enlarged spleen does mean she has some degree of portal hypertension. The fact that the spleen cannot be felt means that it is not too severe. He doesn't think there is a need to rush to check her platelets unless she is bruising more (an enlarged spleen can cause low platelets....the spleen sort of eats them up and the bigger it is the more it eats up....and low platelets can mean easy bruising and bleeding) and an endoscopy to check for oesophageal varices is not really indicated at this point....if her spleen gets large enough to be felt then that will be the plan.
Portal hypertension is very common in patients with biliary atresia (at the CLDF conference we were given a figure of 70-80%) and not all patients with portal hypertension bleed from varices...I know of a number of people who have had portal hypertension for a long time with no complications. I had also suspected that Hannah might have it, as she has some visible veins on her abdomen. Nevertheless I still feel pretty gutted. I did hope that Hannah would be one of those who didn't develop portal hypertension.....it blemishes our illusion of normality a little.
It doesn't really change anything though...as things stand, there is not any need to change the way her condition is managed, unless things get worse....still one day at a time, and something specific to pray about. I spoke to Father Tim yesterday about whether Hannah should remain on the 'prayers for the sick' list at church, when she is climbing around everywhere of a Sunday morning (my thoughts, not his). I said that although she is doing so well, I feel strongly that the prayers of our church community are contributing towards that. So we decided to leave her on for the time being....and I'm very glad of that now.
Other stuff....Hannah has had her flu jab for this year, and is due to have her adult pneumococcal in the next few weeks. Her next bloods are due at the end of the month, and it is not long now until we see Dr Coad - our first visit to outpatients at the brand spanking new University Hospital. I am going to attempt the bus to get there....wish me luck!
The CLDF Conference by the way was excellent....watch my blog for notes on the biliary atresia talk!
Wednesday, September 27, 2006
A new word for hope!
http://www.timesonline.co.uk/article/0,,2087-2372358.html
The Sunday Times September 24, 2006
Drug may heal livers of chronic alcoholics
Sarah-Kate Templeton, Health Correspondent
BRITISH scientists have discovered a drug that could cure liver disease, even in alcoholics who continue drinking.
The medicine, found by a team of doctors and scientists at Newcastle University, could become a potential alternative to liver transplants.
Until now cirrhosis of the liver, caused by alcohol, obesity or the hepatitis C virus, was considered incurable in all but the rarest of cases. The only option for patients in the final stages of liver disease was to wait for a liver transplant. However, because of organ shortages many die while on the waiting list.
Clinical trials of the drug Sulphasalazine are expected to begin in Britain next year. If these prove successful, the drug could be used to treat heavy drinkers, whose plight was recently illustrated by George Best, the former Manchester United footballer who died from liver disease last year.
Sulphasalazine, which already has a licence to treat arthritis and inflammatory bowel disease, acts by preventing scarring from developing on the liver.
Tests carried out in the laboratory and on animals have shown that the medication can even reverse damage already inflicted on the liver.
The drug will initially be given to heavy drinkers who have given up alcohol, but too late for their liver to recover naturally. If this proves successful, the medicine will also be prescribed to alcoholics who continue to drink but show a determination to fight their addiction by reducing their intake.
Professor Christopher Day, who heads Britain’s biggest team of liver specialists at Newcastle University, said: “If you stop a drinker with cirrhosis of the liver from drinking, the cirrhosis will still be there. Even though we remove the cause of the liver scarring, by this stage that is not enough.
“The prospect is that you may be able to continue drinking. If the drug is not too expensive, I may say, of course we have to give these patients advice about drinking, but who are we to say, ‘Just because you are still drinking, we are not going to give you this drug’? I would be of the view that it should be tried in patients who are making an effort.
“I would not give it to someone who continues to drink heavily every day, but if someone had cut down to three pints a night and was really trying, why not give him this drug that might help his liver recover?”
Sulphasalazine may also relieve the ethical dilemmas of distributing scarce donated livers to the most needy and deserving. The decision to give Best a liver transplant was controversial because the late footballer continued drinking. Critics argued that the organ should have been given to someone whose illness was not self-inflicted.
If the drug is not prohibitively expensive, it could be given to all liver disease patients, regardless of whether the damage had been caused by a congenital disorder or years of alcohol abuse.
“This drug is not a finite resource, you are not stealing it from someone else — which is always a worry in public opinion. People are dying on the transplant list,” Day added.
After years of heavy drinking or obesity, so many scars appear on the liver that it can no longer carry out its normal tasks such as storing essential proteins and vitamins while cleaning up toxic substances.
The new use for the drug followed the discovery by Professor Derek Mann, a member of the team at Newcastle University, who identified the cells and proteins that may move the liver disease into reverse.
Mann found that when the liver is injured by a substance such as alcohol, proteins called nuclear factor kappa B encourage particular cells to multiply, which scars the organ. By switching off the nuclear factor kappa B protein, the scarring cells die and stop damaging the liver.
There are 45,000 deaths every year in Europe from cirrhosis of the liver but the number is decreasing.
In Britain, by contrast, where more than 4,000 die every year, the number of deaths from cirrhosis is increasing amid growing concern about the country’s so-called binge-drinking culture.
Doctors report that increasing numbers of young people, including women, are succumbing to liver disease caused by heavy drinking and poor diet.
Between 5% and 10% of people in the UK are unaware of having liver disease, which can be diagnosed by simple blood tests. Help is often sought when the symptoms become severe, which is too late for treatment.
Reseach spend per life lost for liver disease is amongst the lowest for all conditions — only respiratory medicine ranks lower.
Copyright 2006 Times Newspapers Ltd.
This service is provided on Times Newspapers' standard Terms and Conditions . Please read our Privacy Policy . To inquire about a licence to reproduce material from The Times, visit the Syndication website .
The Sunday Times September 24, 2006
Drug may heal livers of chronic alcoholics
Sarah-Kate Templeton, Health Correspondent
BRITISH scientists have discovered a drug that could cure liver disease, even in alcoholics who continue drinking.
The medicine, found by a team of doctors and scientists at Newcastle University, could become a potential alternative to liver transplants.
Until now cirrhosis of the liver, caused by alcohol, obesity or the hepatitis C virus, was considered incurable in all but the rarest of cases. The only option for patients in the final stages of liver disease was to wait for a liver transplant. However, because of organ shortages many die while on the waiting list.
Clinical trials of the drug Sulphasalazine are expected to begin in Britain next year. If these prove successful, the drug could be used to treat heavy drinkers, whose plight was recently illustrated by George Best, the former Manchester United footballer who died from liver disease last year.
Sulphasalazine, which already has a licence to treat arthritis and inflammatory bowel disease, acts by preventing scarring from developing on the liver.
Tests carried out in the laboratory and on animals have shown that the medication can even reverse damage already inflicted on the liver.
The drug will initially be given to heavy drinkers who have given up alcohol, but too late for their liver to recover naturally. If this proves successful, the medicine will also be prescribed to alcoholics who continue to drink but show a determination to fight their addiction by reducing their intake.
Professor Christopher Day, who heads Britain’s biggest team of liver specialists at Newcastle University, said: “If you stop a drinker with cirrhosis of the liver from drinking, the cirrhosis will still be there. Even though we remove the cause of the liver scarring, by this stage that is not enough.
“The prospect is that you may be able to continue drinking. If the drug is not too expensive, I may say, of course we have to give these patients advice about drinking, but who are we to say, ‘Just because you are still drinking, we are not going to give you this drug’? I would be of the view that it should be tried in patients who are making an effort.
“I would not give it to someone who continues to drink heavily every day, but if someone had cut down to three pints a night and was really trying, why not give him this drug that might help his liver recover?”
Sulphasalazine may also relieve the ethical dilemmas of distributing scarce donated livers to the most needy and deserving. The decision to give Best a liver transplant was controversial because the late footballer continued drinking. Critics argued that the organ should have been given to someone whose illness was not self-inflicted.
If the drug is not prohibitively expensive, it could be given to all liver disease patients, regardless of whether the damage had been caused by a congenital disorder or years of alcohol abuse.
“This drug is not a finite resource, you are not stealing it from someone else — which is always a worry in public opinion. People are dying on the transplant list,” Day added.
After years of heavy drinking or obesity, so many scars appear on the liver that it can no longer carry out its normal tasks such as storing essential proteins and vitamins while cleaning up toxic substances.
The new use for the drug followed the discovery by Professor Derek Mann, a member of the team at Newcastle University, who identified the cells and proteins that may move the liver disease into reverse.
Mann found that when the liver is injured by a substance such as alcohol, proteins called nuclear factor kappa B encourage particular cells to multiply, which scars the organ. By switching off the nuclear factor kappa B protein, the scarring cells die and stop damaging the liver.
There are 45,000 deaths every year in Europe from cirrhosis of the liver but the number is decreasing.
In Britain, by contrast, where more than 4,000 die every year, the number of deaths from cirrhosis is increasing amid growing concern about the country’s so-called binge-drinking culture.
Doctors report that increasing numbers of young people, including women, are succumbing to liver disease caused by heavy drinking and poor diet.
Between 5% and 10% of people in the UK are unaware of having liver disease, which can be diagnosed by simple blood tests. Help is often sought when the symptoms become severe, which is too late for treatment.
Reseach spend per life lost for liver disease is amongst the lowest for all conditions — only respiratory medicine ranks lower.
Copyright 2006 Times Newspapers Ltd.
This service is provided on Times Newspapers' standard Terms and Conditions . Please read our Privacy Policy . To inquire about a licence to reproduce material from The Times, visit the Syndication website .
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