[mandy_au]

My Rheume has dxd me with UCTD inc. Livedo Recticularis, my Dermie says Lupus and Rheynalds .. Rheume today is going to Refer me to another "specialised" Rheume for a second oppinion due to my condition/s becoming worse rather than better ... while I was with him today, I brought up my concerns for my Son as to me he seems to be showing similar symptoms to myself (in a much smaller degree fortunatly) they include the livedo recticularis, what look to me to be connective tissue sores very similar to what I get also, and there are days he complains of pins and needles or leg cramps without any apparent cause leading to it. my Rheume sees my consern & is inclined to believe my Son's health needs investigating further ..

I'm looking for any tips that can help me hold myself together and also not scare my Son while we go through this process ... and if he does have auto immune/connective tissue disorders also, how do we manage without him worrying he'll be as sick as me ..

The only thing I"ve decided yet, is to give myself and my partner the weekend to face the reality that there may really be something to deal with here (while my Son's asleep) so I can hold myself together when I take him to the Dr for a referal next week, unfortunatly my Rheume doesn't see kids

even if my Son is sick, I don't want him "feeling" sick for going through this process etc. He's 10 by the way

 

[halfpintfl]

Hi Mandy, I feel for you so deep in my heart. My sons are grown and I don't know what I would do. The only thing that really comes to my mind, considering his age, is to make a game of it. I don't mean a ha, ha game, I mean a game where you say like:" See, this is what they did to mommy last week, And"this is the same blood test I took". Let him identify with you, that you and he are going thru this together. Hugs to you both hon, let us know.

 

[Lily]

Hi mandy,

It's a daunting and somewhat process for both of you leading up to this :hug:

Your case is slightly different to my daughter in that she was a bit older (16 or 17). We were both on edge about it all.........however I could at least explain that it was best to get it sorted and get her checked out now than to leave it, like I had been left (which made me sicker and more difficult to treat in the longrun).
That seemed to work and whilst she does have livedo and raynauds she has been very well with no symptoms after a couple of years which were very 'iffy' in her early teens. Those years included bouts of pleuritis, a couple of malar rashes, some discoid lesions, mouth ulcers, joint pain etc. etc. and 1 positive ANA. Things have settled, she tested neg after that pos and my doc gave her the all clear for now. He did mention to her though that she should be checked during pregnancy and if she has any further problems to go back to him. So...... reassurance that we had her thoroughly checked out and for now she is ok. You are doing the right thing, and it's something that needs to be done unfortunately :sad:

I'm not sure about blood tests, how will your son be? DD was ok because she's had them for a few things whilst growing up. Boys don't seem to have as much exposure to that as girls (my son had never had one and ended up overbreathing because of the unknown and felt faint :wink2: ) The path lady said guys often do that - it's the unknown they fear. He is fine with them now.

Not a lot of helpful advice because really every child and every family unit is different and that in itself will affect the approach you take. But I hope it all turns out ok and wanted to wish you well.

love
Lily

 

[LolaLola]

Hi Mandy, my Daughter has lupus and I also took the position that she would be better sorted out early rather than too late like me.
She is older than your Son, 17,so I am not much help except to say we know a 10 year old with a rather nasty rare syndrome and she manages all the treatments very well and is well adjusted.

I can identify with how you are feeling,so please let me know if I can help at all. The girls here really helped me when Immi ,my Daughter, was finally diagnosed.
x Lola

 

[mandy_au]

Thanks for your feedback and well wishes Halfpint, Lily and Lolalola

After some time for it to sink in, I'm feeling more positive & building strength for all this, I've made his GP apt. for monday and I'm going to TELL her that I need referals to a Dermi and Rheume, rather than tell her his symptoms and seeing where that leads ... (due to my history with lazy Dr's leading to my late DX also) My Rheume & Dermie are the only Dr's I've been able to find some trust and confidence in in years.

I have decided also that I will tell him an earlier dx is better than a late one, for reasons we can all relate to & will be honest with him along the way, but if I can refrain or put off saying some things that may upset him I'm sure I will do too .. plus I've been a smoker since I were a teen, still making on and off efforts in giving up, I will be able to say to him that on top of an early dx, monitoring, meds (if nes) ... AND not making stupid choices like mum has by smoking etc, there's no chance that he's gonna end up anywhere near as bad as me.

My Son hates blood tests, he's had a few .. but loves talking the ladies into giving him extra lollies after them! :lol: but I've let him watch me have mine done a few times so he can see mum finds it ok ... and he thinks mums are great amusement! .. kids hey, he already thinks that part is a game, so Halfpintfl I think you're onto something there :lol:

I'm really happy Lily for you and DD that she has the all clear, it also gives me extra hope! ... many blessings being sent for continuing good health

Lola, how is Immy now? and your young friend, it's good to be reminded just how resitiant kids can be also. I hope their health is on the way up!

Thanks again for your warmth and support! I'll update soon ..
Love and best wishes
Mandy

 

[mandy_au]

update ..

I took my Son to the GP yesterday, asking for referals and bloods to be taken. She were too rushed to even hear out what the symptoms were, only spending enough time to look at his sores. The only reason I let this go is because she has at least made a referal to the same Dermi I see for my Son ... and as he's aware of my condition, I know he'll at least be willing to investigate and do bloods etc.

As far as GP's go, well my Rheume isn't fond of me changing again, but it's not the first time we've been rushed out of her office, so I'm going to ask him if he can recomend someone who's going to give us the time of day.

We are now waiting til the 15th for the Dermi apt. ... My Son knows we're looking to see if he has something similar to me now, but so far doesn't seem phaised by any of it

 

[Lily]

Hi mandy,

Well in the end you got what you set out to get so that's what matters :yes:

I get so furious with GP's who are like this. We have more things going on than the normal person yet we get little time and attention because they figure we are being looked after elsewhere or they have had a bad day, are running late etc. etc.

A GP's role is really important in the grand scheme of things and I wish they would do it properly. I hope you can find one who does give you the time of day. I've had good and really rotten ones, the one I have now is leaning towards good but mediocre sometimes :wink2:

Even good ones can disappoint! And I'm not too pleased with the new computer generated patient notes etc. I had to get another referral to my Neuro as mine had run out. That was ok, he typed the reason etc etc. but when the computer rattled off my recent visits etc. it listed some things which were incorrect. Reason being he had changed his diagnosis about something and forgot to correct it, so that stands on my record, and another doctor refilled my NSAID and put the reason for it as Osteoarthritis the real reason is Arthralgia. So I can see why some of us arent taken seriously with this sort of inaccurate reporting following us around. PS I just crossed out the inaccuracies and put in the corrected version on the referral letter, if anyone wants to question it they can ring him :lol: I figure it's my health file it should be accurate. Sorry got carried away - rant over :lol:

love
Lily

 

[Maia]

I like my GP, she quickly diagnosed lupus in my case at least. But she is very rushed for time most appointments and sometimes I have to schedule a follow up one 2 months later to finish what there wasn't time to finish. Real annoying - I hate sitting in a GP office filled with people that are sick (with the flu this time of year) so I really hate when I have to do that twice for what should have been one appointment.

I've heard other people asking to book "double" appointments to ensure they have enough time with the doctor. This seems to work for them, but I'm sure it depends on the system and each individual doctor's office as to whether they will accommodate that. Something to ask about when you pick your new GP - if they will do that when you call in.

I'm glad you were able to get your son in relatively quickly for the dermy. Each day probably feels longer than a week I know - but still less than two weeks is great!