Sarcoidosis

[bubblemum]

Hi all
I wonder if anyone has any experience of sarcoidosis in children. Christopher has had it now for 2 1/2 years and while it is not causing him any discomfort, Great Ormond Street are getting twitchy as indeed we are. Recent blood tests show an unexplained rise in his liver enzymes with a further drop in his platelet count. All this combined with a start to secondary school in September they wish to see him again in the Autumn term with a repeat of his blood tests in the next two weeks. For the first time in years they have not said we are happy with him. All rather disconcerting but not unduly worried at the moment, just feeling rather uncomfortable with it all.

In the past we had less than a handful of appointments locally with a dermatologist who had only ever seen one case. Her opinion was that it would die out and it is not that serious in children (this is Christopher we are talking about : She warned us not to look online as there are alot of scare stories out there which concern adults. Having now attempted to find some more information there seems to be very little info available anyhow which is leaving us all rather perplexed. Upshot now is that GOSH have wrote a letter or referral to QMC, Nottingham (pleading ignorant of the lady at our local hospital) to get him looked at.

Looking for answers myself is kind of turning me around in circles - such as wondering if the elevated liver enzymes are to do with his lymphs attacking his liver - in sarcoid the lymphs I believe attack his internal organs causing internal infalmation which manifests itself in a rash.

I do appreciate that we are not doctors and specialists on here but if anyone can help re advice I would be very grateful

Thanks for reading my post
Rachel

[slf]

Hi Rachel
Can understand how worried you must be. I was just wondering how sure of the diagnosis they are. I say this because before I was diagnosed with CVID it was suggested that I had it,my gut reaction was to tell them not to be silly,and I was proved correct. Obviously I have no idea how you get a firm diagnosis but perhaps a second opinion might be worthwhile.
Steve

[liz2mac]

Hi Rachael,
I'm so sorry that you have this worry. I don't have any expereince or knowledge of this at all, but do have enormous faith in the folk at GOS to know the best way forward for you. Sam has knowledge of QMC and speaks very highly of them, so hopefully they will have the knowledge and experience that you need.
Let uis know how you get on?
Liz

[bubblemum]

Hi
Thank you both for your comments. It is definately sarcoid. Christopher had a skin biopsy from an affected patch a couple of years ago which confirmed it. We know QMC are terrific which is why we asked for a referral to there. Christopher had emergency life saving surgery there just after his first birthday - he was bleeding to death and they operated into the early hours. He was seriously ill in the aftermath but the fact that he is stil here is testomony to thier skill and that of GOSH. I will let you know when I have an appointment for him and the outcome.
Thanks again
Rachel

[liz2mac]

Hi Rachel,
How are things going now?
Liz

[bubblemum]

Hi Liz
Still waiting to hear from Nottingham! In the meantime we are going to see the dermatologist at the local hospital on the 11th July but not hopeful of a good response there as she has always been rather dismissive, hence the referal to Notts. Blood tests remain unchanged which the consultant has reported back to GOSH. As it stands we go back to LOndon on November 3rd.

Otherwise Christopher is okay and has just been away on his own for the first time just returning home last night from PGL with school (aka Parents Get Lost Week He is still fast asleep in bed! Don't think it helped dragging him straight to see the Olmpic Torch which was in Derby last night.

Thanks for asking

Rachel x

[liz2mac]

;-) The Olympic torch is coming to Evesham tomorrow. I have to admit to being completly ambivalent where the olimpics are concerned but I'll be there on the high street watching those poor fools running in the cold and the rain. Lol.
So gald that you've been indulging in PGL week, even after more years than I care to admit, I remember that week. If I tell you that my son is not far away from experiencing it with his son you'll understand what an impression it made on me!!
I'm glad Christopher is ok, but am worried that your local hospital doesn't seem to understand the urgency of it all. If you feel I can help in any way, don't hesitate to ask me. Crocker will give you an idea of the type of thing UKPIPS can do to help.
Liz

[bubblemum]

Update, we saw the dermatologis in Derby on Wednesday. It was as expected with no concern expressed and another open appointment. This is kind of understandable as currently Christiopher's lungs, chests and eyes are all clear. Apparantly these are the three areas that can be damaged by sarcoid. Nothing at all from Nottingham still so have e-mailed GOSH to see if is worth chasing up as sometimes letters are lost and end up in the wrong place especially within large hospitals and internal mail systems.

Just on another matter, something I have been screaming from the rooftops of Allestree (a friend even heard me in Scotland Christopher's year 6 SATS results this week showed a clean sweep of level 5's across literacy, numeracy and science. SO PROUD! and feeling so emotional. Think Adrain and Bobby must have snuck in an extra gene 10 years ago, the gene genious.
Rachel

[john]

hey, excellent results christopher!!
confirms what i always thought, we pids are a clever bunch!!
good luck with the hospitals rachel, have a good weekend
take care - john

[liz2mac]

Well done Christopher!!! Excellent results and Well Done Mum too for all the support you've given to enable him to reach this level of ability!
You're so right about things getting lost in big organisations. On a personla level I've often founf the consultant secretarys to be so helpful and efficient when problems are raised with them. It is always worth reminding people or enquiring if things like appointments seem to have taken a long time, let us know what happens?
Liz

[gilliem]

Hi Rachel. As an ex-teacher I really appreciate what Christopher's achieved. Congratulations to him, and to you for encouraging him.
Best wishes.
Gillie.

[bubblemum]

Big update - had a call from GOSH this afternoon. Christopher is going in as a day case in August for a couple of minor ops - a skin biopsy for their own analysis and to meet with dermatology there and secondly to aspirate some bone marrow due to the concern over his platelets and recent blood tests. We are singing from the same hymn sheet, always useful when it comes to hospitals. It also explains why we hadn't heard from Nottingham - conversations have been ongoing between Notts and Gosh culminating on a big discussion on Christopher between doctors at GOSH and this decision to get him in for a day to have a really good look at him rather than trying to do it and make decisions in clinic time. All good but arranging transport into central London will be a bit of a pain.

On that note hope everyone is enjoying the Olympics - the children and I certainly are but poor hubby is working 16 hour shifts as a medic. Also meant he was away for our wedding anniversary yesterday. After thirteen years I have told him he will soon be let out for good behaviour LOL

[john]

hi rachel,
good news in that something will be happening and in the right place!
sue and i are loving the olympics and thought of all you pid mums when we watched the amazing opening ceremony and the wonderful tribute to GOSH, and those wonderful dancing nurses, doctors and health workers - what a bunch of heroes!
happy anniversary for yesterday, you have a long long way to go to catch up me and sue, and she's not letting me out yet!!
take care - john

[gilliem]

Great news, Rachel. You must all be so relieved. Like John, I really enjoyed the opening ceremony, especially the tribute to GOSH. Haven't time to see much else with a complete house re-wiring under way. Tommy asked me last night how long we'd been married. I was relieved he was pleased with the answer. No request for remission for good behaviour either!
Best wishes,
Gillie

[bubblemum]

We have a date. Christopher is second into theatre on Weds 22nd Aug. We need to be there on the 2lst for pre-op tests and bloods. A slight change of plan in that we wont be seeing dermatology on this date but need to return later on when the skin biopsy results are in. A friend will have my daughter Victoria for us so it is just a matter of Steve getting the time off work and arranging the trains. I had a nasty shock yesterday when I discovered it will be £125 for us using specified trains with midland mainline - ouch.

Now how is this for a quote from the clinic letter from the dermatologist in Derby "As this is purely cutaneous sarcoid and is asymptomatic, and not disfiguring, then I suggest we adopt a 'wait and see' policy" Mmmmmm three years on and his body is covered in scar tissue!

On a better note we saw his Derby consultant yesterday and there has been a slightly better result in his liver enzymes so they are heading in the right direction, but another small decrease in his platelet count. Clotting however was in the normal range.

Thanks for your support everyone.
Rachel

[john]

wait and see eh???
how i don't get that! if most of us had waited, we'd probably not be here to see today.
the train fares are crippling. if you can prebook a month ahead online you save a fortune. we went to norwich on monday for £10 each return, and they told us we'd saved £108 on the usual fare! and the train was almost empty both ways!!!
i know we'll hear from you before the 22nd, but if not GOOD LUCK for christopher from us!!
take care - john

[gilliem]

Good luck, Rachel. I'm always dismayed in this day and age when clinicians show a lack of empathy, and that's what you're describing. "Wait and see" indeed. I don't think so. I hope all goes well on 22nd.
Best wishes,
Gillie.

[slf]

Hi
Gillie you're absolutely right my ex GP would have said 'give it time' even though time would have proved nothing more than action today. Rachel I do hope that it goes well now.
Steve

[bubblemum]

Hi
Just to let you know that Christopher had his bone marrow aspirate and skin biopsy on Wednesday. All went well and we shall return to GOSH to see the dermatolgy consultant (no less) as soon as the results are available. At the same time it is likely that one of the immunolgy team will pop over to see us to discuss his aspirate reults. He is rather sore at the moment with mild discomfort which is to be expected. He handled it all really well on the day despite having a nightmare journey home on the m1 due to a jack-knifed lorry and standstill travel for over two hours - poor lad. Still made it home (eventually!) safe and sound.
Rachel

[gilliem]

Thanks for the update, Rachel. Give Christopher a gentle hug from me [as long as he's not too grown-up now for that to be acceptable!]. I'm glad that you're getting to see the right specialists. Good luck.
Best wishes,
Gillie