The boy in the bubble at 12

[bubblemum]

Hello Everyone

The sarcoid thread is now a bit long so I thought I would start a new one on the day that Christopher turns 12 (Rollerworld again yesterday John with three of his friends. I fell flat on my back and glutimous maximous avoiding a fellow faller ahead- ouch!!!!) I wish I could post a picture so you could all see how he is getting on.

To update, Christopher remains with a half full bottle of immune system and leads a full and active life alongside his daily medication and IG infusions, which have stayed at 10 daily intervals for a number of years now. This includes seeing his beloved Derby County play at home matches. We raided the Derby County shop for his birthday. To his absolute delight he won a signed shirt and had his photograph taken with some of the players and Nigel Clough at the disabled club Christmas Party (have I put this on elsewhere ? -sorry if I have ;D).

We seem to be visiting GOSH every month at the moment as some of his counts have been abnormal and with a slight downward trend in his IG levels. Thus many discussions are taken place currently as to how they can now boost his immune system and make it stronger with the teenage years looming and ultimately adulthood. Adrian believes the skin problem indicates some weakness and instability. They are keen to try and sort it out a bit more while he is still young and well.

We now have all the results from the operations in August following clinic a week ago. All the skin tests results are normal which means there is nothing seriously long, while still not explaining the problem. They now wish to perform a liver biopsy next week again at GOSH (Derby is now being cut out of the picture after the sarcoidosis fiasco) to see if there is any infection in there and if there is, if that might expalin the rash. Coincidently this is clearing up nicely now thanks to a different cream, but is leaving some scaring. His bone marrow is as expected which is essentailly x-scid still but with the corrected gene in some of his stem cells. A week ago they also did a full ultra-sound of his abdomen. All was normal but no sign of a thymus which I undertand plays an essential part in the production of an immune system.

So quite a mixture of things going on at the moment. All the trips are a massive drain on us financially (two this month and the birthday) but at the same time we are so relieved that GOSH have taken total control of the skin problem and are being extremely thorough in everything they do with Christopher.

Take Care
Rachel x

[glowing]

Good to read your more positive update.
Happy birthday to Christopher. It's great for him to have a photo to treasure.
Sounds like you all had a great time and I hope your 'ouch' area is not too sore. ;D

Best wishes
Gloria

[mali42]

Hi Rachel
Sorry to hear you had a fall, your a lot braver than me :-)

I have suffered with skin problems and just beforei was diagnosed i had 5 presciptions for creams ointments etc for various parts of my body, i find what does help is to keep moisterising or i would end up in lots of blotches and sores everywhere and especially when its freezing outside. i itch all over most of the time and would be scratching but i have got used to it. hope that helps

Malcolm

[john]

Hi Rachel,
12 eh? Doesn't time fly, it must be 10 years ago or so that I first heard about Chris when I was at PiA! Dunno about you guys but it makes me feel pretty old myself!!!
It's wonderful to hear that Chris has a happy and active life, that's what it's all about isn't it, and what a lucky lad he is to have a Mum and Dad as supportive as you.
GOSH is such a great hospital for youngsters that I'm sure you feel the effort and expense is worthwhile. We did a small study on transition care at PiA, and GOSH was the best hospital to "graduate" from according to the patients we had access to, but that of course won't happen for Christopher for a long while yet!
Roller skating doesn't seem to be your sport Rachel!! Why not try something more appropriate such as snow-boarding or BMX, or even skate-boarding!!! Just kidding, you deserve 10/10 for enthusiasm!
I agree with Malcolm about the moisturising to stop the itching. I use the E45 lotion from Boots, no perfume, no shine, and it's not a big deal, but it works!
Give the pre-teenager a big hug from all of us, and take a big pat on the back yourself!!

[bubblemum]

Your posts always make me smile John We have a date now for the liver biopsy. I travel to London with Christopher on Tuesday for pre-op. He is on the morning list for the Wednesday. It should be just a one night stay in hospital so hopefully back home to Derby on Thursday. I have been otimistic and booked a super off peak open return ticket which has saved me a fortune.

It has indeed been 10 years this July since we told Christopher's story. I was heavily pregnant with my daughter Victoria at the time.

It is really reassuring to know about the transition care at GOSH but my guess is they will hold onto him for as long as they possibly can.

Now BMX, skate- boarding ...now there's a thought for my next challenge. Think the cake option might be a safer bet though. This month is sorted - I am off to have a go at salsa at the end of the month. At least I can't do a backwards flip doing that ...or can I? LOL

John you are such a great support. Thank you. Thank you Malcolm too and Gloria for your comments. I feel so much more able to chat on this forum and try to get on and make postings as often as possible.

Hugs
Rachel

[john]

Rachel.....Never underestimate the dangers of the dance!!!
Sue and I like to tango ( now stop laughing please!!), and have been known to fall on top of each other when she thinks she should "ocho", and I think she should "gancho"!!!!
Last time we fell we both thought we'd really done some damage, luckily it was only our pride that was dented!!
Yeh... make a nice SAFE gooey cake!!

[bubblemum]

Hi
So much going on down at GOSH at the moment. We were due to return last Friday but this has been postponed until April 12th. The reason being Chris has to go into Derby Hospital first thing tomorrow morning for a huge amount of bloods, which are then to be couriered straight down to GOSH. As far as we know nothing that they would worry about has shown up in his recent liver biopsy and the next visit is to regroup and discuss the blood tests. Some infection is showing in his liver and another elsewhere but nothing they can pinpoint at the moment.

On from the sarcoid thread, a quote from the consultant dermatologist to Derby " on the basis of the slides sent to us, we felt that the features did not support a diagnosis of sarcoid ..non specific and very similar to the findings from our skin biopsy, it is important that we keep the situation under review" - 3 year mis- diagnosis from this end?

Keep warm and safe everyone (words hibernate and emigrate very apt)

Rachel

[john]

Hi Rachel,
The Derby dermotologist's view seems encouraging to me, and to you too I think. That's very good news.
The liver stuff I can empathise with, as you probably know. It seems to me that the function and biology of the liver is not best understood, but I think the guys at GOSH are the best in that field and you are in good hands.
My own liver problems have just flared up again, another stay in hospital and another load of confusing opinions. Looks like its a cross I just have to bear!!
As for the weather... what can you say that's encouraging there? It's not so much the snow down here, it's just freezing cold!! Hate it!!

[bubblemum]

Hi John
I have just got back from the hospital - 30ml taken. I did warn Chris if they were paying for a courier it would be more than just 5ml! I am glad that GOSH are now in control of everything, especially the skin and liver problems. Whilst sarcoid is now ruled out (good) they are still rather mystified as to what is going on. It is likely to be an everyone there meeting on the 12th again but I am getting worried now about all this courier business and frequent trips. I think I need to get my elder sons birthday out of the way then face it. Sam is 21 on the 6th - scary to think that I will be mum to a 21 year old.

I am so sorry to hear that you have been in hospital again. You are right when you say a lot of human biology is still not fully understood but each year that goes by brings more advancement. Look at what has happened in the field of gene therapy in just 12 years!

It is absolutely freezing up here too. Derby is usually sheltered by the peaks and Welsh mountains but we have got the brunt of it here with several inches of snow which has now turned to ice beneath. It is treacherous underfoot.

Try to keep warm and safe
Rachel

[john]

21 !!!!!
I don't believe it, Rachel you are FAR too young!!
Tell Chris I am in awe of him giving up that much blood - he's a brave fellow!
Still very cold here too, although looking at the telly it is much much worse up north.
I've now found I have a hospital acquired chest infection, bring on the antibiotics, so depressing!

[bubblemum]

John, you flatterer I am definitely too young to have a 21 year old though. Must have been a miraculous conception when I wasn't looking LOL
Give me a call if you fancy a chat - do you still have my number? or I can private message you.

[john]

Hi Rachel,
Thanks for cheering me up! I am feeling much better now thanks to some good home comfort and amoxycillin!
I hope you are being let off the medical treadmill to enjoy Easter, and I hope your family have overloaded their brilliant Mum with chocolate!
I will be taking it easy myself, but today the sun is shining and I think a drive out to somewhere pretty would be in order!

[bubblemum]

Hi
We went back to GOSH last Friday. All the blood tests looked fine and Adrian dosn't wish to see us now for another 6 months. So a bit of respite from all these journeys down to London. We will then have another chat at the next clinic and possibly some lung function tests. Inflammation is still showing in Chris' liver but not to the extent for them to worry unduly.

In the meantime Christopher has volunteered me to go into his school to teach genetics and about his condition to his class. Yikes! I am used to primary but two classes of secondary age pupils next Thursday afternoon!!!! Thankfully I have some presentations I have used before and I have found some good stuff online from jeans 4 genes that I can adapt.

Keep well and enjoy the sunshine now it has finally arrived

Rachel

[john]

Ah Rachel,
This is good news for Christopher and for all of you, I'm so happy for you.
What a good idea to go into school and tell Chris's fellow pupils about his condition. He will be so proud of you (if he isn't already!!!), and it will be good for his pals to know and understand this aspect of his life.
Good luck with the teaching, you don't need me to tell you where to find the info you don't already have, and keep all your notes, I have a feeling you'll be asked to do this again ( and again!)
Have a good weekend....