Think my family is cursed

[crocker]

Curtis now starting oral igg,my mum has been diagnosed with Parkinson's and they think my stepsons cancer is back.Beam me up scotty.What a week this is turning out to be.

[liz2mac]

oh sweetheart, I don't know what to say. Sometimes it feels like there's a big finger pointing down at one of us saying "it's for you".
Well, I do hope Curtis responds well to the oral IgG. Do not pass on to him Lizig's vampire thoughts! What is the Parkinson Society like? Is it worh seeing if they have any info/support they can offer? As to your stepson, oh love just my thoughts and best wishes are with you all.
Liz

[susand]

Oh dear, so sorry. Sending you warmth and hugs at this time of overwhelm.

Sue

[willo]

My thoughts are with you and your family.

[bamber]

Lots of hugs!((())).

[slf]

Lots of sympathy for the stress you and your family are under,must be pretty miserable. They are lucky to have such an upbeat person as you appear to be
Steve

[john]

lean on us when you need to feel support and friendship.
your family is truly blessed to have you there for them.
take care - john

[liziJ]

You poor, poor thing - my heart's going out to you. I can't imagine how low you must be feeling. It seems that maybe Curtis is now on the right track - even though it will be a long process. Despite my flippant "vampire" joke, I'd take oral IgG in a heartbeat if it was on offer to me, and I do so hope it proves to help Curtis.

What kind of state is your Mum in at the moment? How advanced is the Parkinsons? I think it's an excellent suggestion to contact the Parkinson's Society. My mother-in-law has Parkinsons - I think she was diagnosed about 10 years ago. She's very upbeat about it and doesn't let it get her down. I know she gets a lot of support. I am absolutely positive she would be happy to talk to your mum by email or phone if you think it might help - just as we PID people can support the newly-diagnosed, perhaps your mum would like to talk to someone who's been there? Please do PM me if you'd like to discuss arranging this.

As for your stepson, all I can do is send my love and prayers.

John's right that your family is so very lucky to have your support. I was wondering who you have? Of course you've got us, and I do hope you continue to use us in any way that might help you get through this time. Have you thought about seeing your GP to try to put some support/counselling in place for you? I know it's helped me in the past when things in my life have felt more than I could deal with.

Lizi x

[liz2mac]

Hi crocker,
I'm thinking of you all and praying that all is going as well as can be for all of your family.
Liz

[gilliem]

Hi Crocker. I'm having a mega-catch-up with everyone's news so have come very late to your thread. While you're going through a time like this there's no way of knowing how long it's going to last. I'm saying that because I recently went through a similar set of awful things that I had to deal with or suffer through and I wondered whether there was anything that could improve. Not a good place to be. Having a PID isn't the best factor in the mix, either! However, things are slowly improving here and I hope they will for you, too. I ended up never looking further ahead than the end of the day I was in. I hope Curtis is responding to his treatment and that things get better for you, too.
Best wishes,
Gillie.

[liz2mac]

Hi Crocker,
Whats the latest news of everyone?
Liz

[crocker]

Curtis is starting to gain weight and is going to be starting a Drug with igg,iga and igm's in it .It is a drug from Germany that is not yet licenced.It has been used once on a man in Dublin with norovirus but he didn't have immune problems.I have now worries about going ahead with it.He now has a kidney infection again and his nose bleeds and gum bleeds are back and they are sending him back to ent again.He has had blood tests done for platelets coag and blood count and they are all normal again.As he was sick at the weekend we had to ring the out of hours doctor when I told her about all that has been going on see said she could not help and to take him to the hospital.In children's a & e ther is usually a 6 hour wait so imagine all the germs so decided to look after him myself and took him this morning.My stepson has been given the all clear for his cancer and my mum is slowly adjusting to the Parkinson's.But my sister inlaw has been diagnosed with mastoyotisis and they are looking to see if she has any tumours in her organs.She lives in Orlando and her hubby is a doctor and she is a nursing manager with two very young children aged 3 and 2 so once we get sorted with Curtis we might have to go and help out as they have no family there.Has anyone ever used a drug that has not been licenced yet as this is worrying me now a bit but I wish they could just get rid of the norovirus

[bamber]

I was told in early late 1990's early noughties that the Subcuvia i was having (subcut) was on named patient basis.(i.e not licensed). Ironically I was told when it was licensed it became more expensive. they knew money could be made. But it was a very good drug. Still around 10 or more years later.

[s162216]

Hi,

Technically speaking so long as a doctor is willing to prescribe a medicine, licensed or not, then its fine being prescribed (obviously within reason). If something adverse or unexpected should happen though its all on their shoulders and they will have to take the flak. My mum briefly used a drug to try to control her Dermatitis herpetiformis that she has as well as ceoliac disease, after she was unable to take the standard treatment as it messed up her blood, unfortunately the unlicensed drug did the same thing so she's had to take nothing for it for the past few years.

Sam

[liziJ]

Hi Crocker,

I used an unlicensed immunoglobulin product subcutaneously for years. I had absolutely no problems whatsoever and was very confident that my immunology team would not put me at additional risk. I knew they must be happy with the safety of the product and therefore I was too.

Hopefully you can have the same faith in your own team. If not, I'd advise asking as many questions as you like and as often as it takes until you feel at ease with Curtis's treatment.

Lizi x

[liz2mac]

Hi Crocker, I am so sorry that you were unsupported by your medical team all w'e. I'm sad that there isn't an emergency number for Curtis' Immunology team. I know that over the years I have been so glad that my team has someone on call at all times. You are so right, A&E is such a bad place for us to be. I really think I'd go for it with the unlicensed IViG if I was in the same situation as Curtis is now. Yes there are risks, but your team should be able to explain exactly what these risks are. Many of us over the years have been on unlicensed immunoglobulin products. If we hadn't it would have taken much longer for them to become licensed and fewer people would have been able to benefit from them. Its much more difficult making decisions for our children than it is to make them for ourselves though, so I gues you just have to make the best informed decision you can. What does Curtis think about it all? If you have to go to Orland, do you know what will happen about Curtis' treatment? My heart goes out to you with all the things you are trying to balance in your life.
Liz