[karen.w.]

Hello everyone

I thought it best I start a new thread to update you on how the appointment went to prevent this getting lost in my last thread?

My rheumy had a look at my DD blood tests results,he thought they were mine at first & then explained that she IS carrying the same autoantibody gene as me which means she could develop lupus but theres also the possibility she might not,it's something that you can't predict.....he said that my children were a high risk for this anyway due to me having lupus & my sister having APS.


He said that it's good sign that the other results were negative however he is concerned about the symptoms she's having so it would be wise for her to be referred to a rheumatologist at the childrens hospital :worried: apparently he can't see her personally because she is under 16.


I will have to try not to worry for now & just wait for her appointment...I am usually optimistic..but I can't help feeling devasted & negative at the moment :sad:
knowing that my children were ok is the main reason I have stayed sane! now I need to figure out what exactly I am going to tell her?.....not at the moment though as I am too fragile & will get upset,I can't do that to her!



oh & on top of that..I was introduced to a new rheumy who examined my hands etc & he told me that due to my deformaties I have an RA overlap with the lupus..I explained that I had been treated for it in the past but then they decided I didn't have it?.....but he was adamant that I do have an RA overlap because he has never seen my deformities on a patient with 'just' lupus.

I want to thank you all for your kind support through this..it means a lot to me...I will update after my daughters appointment.please keep your fingers crossed for us
:grhug: luv karen x :love2:

 

[LoopyLoo]

((((((Karen))))))

It must be hard to hear any kind of news like that about your children but there are positives to be taken from it. It really sounds like your rheumy has been very thorough and is keen to make sure your daughter is monitored.

That is half the battle and now she is being referred to someone that will specialise in her age group.

Take your time with this Karen for your own health also. Is there someone that you can speak to about the best way to tell your daughter? Again, I would focus on the positives and tell her that she will be looked after.

Sending you great big hugs :hug:

Lots'a'luv,

Pam xxx

 

[Katharine]

Hi Karen,

I'm really glad that your rheumy took those blood tests seriously and sais that your daughter needs a referral.

I think you are right in waiting until you feel clamer to explain to your daughter but I think that you will also find that she has thought of such a possibiltiy herself and that she will accept it more easily than you may think. I believe that the main thing to say here is that as she obviously has certain symptoms that need watching, and as she has this possibilty in her blood, she needs to be followed up on a regular basis but that it doesn't necessarily mean that she will turn out to have lupus or that she will be affected in the same way as you. Also, you can stress that treatment is generally improving and that, if she did turn out to have lupus, treating her early on would obviously be better.

Of course, none of that removes the potential seriousness of what's going on but I think a measure of honesty toned down with a non panic attiitude is the best way to explain to her.

sending lots of hugs to both of you, I will keep you both in my thoughts,
:grouphug2:

Katharine

 

[mysharonna]

Karen,

I think you are really handling this with a level head , courage and strength...even though you are probably screaming on the inside.........I agree with your decision to wait until you have figured it out in YOUR head, before explaining it to your daughter.

It's good that she will be able to be seen by a doctor who specializes in kids her age, and that she will be monitored very closely from this point on.

I am crossing my fingers, toes and everything else I can get to cross that you will get an appointment quickly and hear some positive news. Either way, we are all here for you.

Keeping you both in my prayers,
Sharon

 

[Joandublin]

(((((((Karen)))))))

I dont know what to say to comfort you. I can only imagine how distraught you must be feeling right now. :sad:

Im glad you are able to post about it and let us know whats going on. Its very important that you keep positive for your daughters sake and I know you are trying very hard but dont forget that you need support as well to come to terms with the possible implications of what your Rheumy is saying. I hope you have someone you can talk to about this but we are always here for you anyway. Be careful that the stresses of handling all of this doesnt bring on a flare. Keep a good eye on your symptoms and make sure you get some time for yourself to chill and de-stress.

Lets just all hope and pray that with regular monitoring and minimal interventions things can remain stable for her:hug:

Im really sorry to hear about your hand deformities:sad: What a lot for you to take on board all at one time:hugbetter:

Much love and strength to you
Joan:rose:

 

[Maia]

Just a quick note to let you know I'm thinking of you and hoping with all my might things turn out OK for your daughter. Hope the wait time for the ped rheumy isn't too long too!

There are some hand deformities in "just lupus" too. It can be called "lupus hand" or Jaccoud's arthropathy. I don't know what your hand deformity looks like, but you may want to Google those terms and see if it fits what you have... Really treatment is what matters though, you just want to make sure you don't get put on RA meds if you don't have RA unless they may help lupus too. Some RA meds are not desireable for certain lupus only patients.

 

[karen.w.]

Thank you so much ladies :grhug: what would I do without you!

I am trying to be more positive now,even though as you described perfectly sharon I am screaming on the inside!.....I am feeling a bit flared now,you were right joan the stress has induced a flare already..therefore I have decided to put my worries on hold (if possible) until our appointment & we know exactly what we are dealing with.
I don't mean to come across as selfish,I am just concerned that if I continue to stress as much as I have done the last few days then I will end up ill & no good to my daughter!and obviously she is my priority!


my husband & I think it best we don't tell chelsea about her having the lupus gene as I don't feel that a child should be led to believe she could develop lupus?regarding being referred I will probably tell her that another dr needs to check her over because shes having some problems & it's just routine....I just hope the consultant doesn't divulge too much at the appt?

If there are any problems then as you said katharine it's best to deal with it in a positive,non panic attitude.or as you suggested pam seek advice on how best to talk to her...however fingers crossed it wont come to that!


maia thats a good idea regarding googling some pictures..to be honest I am not worried about what he said about the RA at the moment will learn more next visit...I was treated for RA for years until they changed their mind,now to change it back?....confusing ha! ..I only have swan neck deformities on my fingers,bit of ulnar drift in both hands & not much movement in my wrist..also some twisted toes..but I don't have any other deformed joints?.....so could possibly be from the lupus,not an RA overlap?

oops sorry this is another long post I do try my best to be brief!!

I can't thank you all enough :thanx: & I sincerely appreciate all your hug's & good wishes...I have taken on board all your advice & comment's etc & it truly helps!

lot's of love & hugs to you all :grouphug2: karen x

 

[cispence98]

Karen heres thinking of youosy: I pray for you and your daughter and family, its hard having answers that create more questions:worried:
Make sure to take care of yourself, my dad always told me there is a reason why the airline says put the oxygen mask on you first then your children its because if you weren't able to take care of yourself than you aren't able to take care of your children in the best way possible so....take care of yourself too, it sounds like you have alot on your plate too, I am definately sending prayers and good wishes :there:

 

[greenhaggis]

Karen,
I can empathise completely with you! It is really a horrible feeling when you think you have passed on the Lupus or other auto-immune gene to your kids! I think about that all the time and feel so guilty! I have 4 boys and I know it is less common to pass the gene to males, but I have so much recently discovered family history that it does make it more likely that they will have problems! They all do shows auto-immune signs already that have been noted by my GP or their own specialists!

I would like to pass on my best wishes and love and hope the specialist appointment goes very well!

Love and hugs!

Lelsey

 

[karen.w.]

Hi laura and lesley thank you both so much :grhug:

wise words laura,it is so easy to neglect our own health without realising that we need to be healthy for our children!I will try to take care of myself,I know how stress effects us :worried:

lesley what an awful worry for you,I thought it was less likely with boys :worried:
I hope they are all ok & it turns out that they don't have any auto immune problems ..yesterday I was actually considering having my other daughter tested too for curiosity but have changed my mind today....ignorance is bliss I feel..unless she had any problems in the future I feel it's not worth going down that road!

thank you again for all your support through this.
love & hugs to you both :grouphug2: karen x :love2:

 

[greenhaggis]

Karen,

Yes it is less likely with boys, but that had not stopped my 4th boys paediatrition suggesting that testing should be considered at some point for all of them.

My thoughts presently are not to bother yet, if ever! It all depends on how there health stays- if if ever got bad then yes of course they would get tested. I feel that its important that they have the opportunity to lead a busy happy life doing kids stuff - and boy they do that to the extreme sometimes!!

As I have only just been recently diagnosed, I decided that its is in mine and my familys best interest to concentrate of getting my health on an even keal - if possible! Obviously that would change immediately if something major crops up with the kids!!

I agree with Laura, your health is extremely important! Take care of your health so that you are able to take care of your kids!

Have you any idea when the appointment is for your daughter? Let us know and how she gets on!

Love Lesley

PS - testing would not be specifically for Lupus, but for things like Raynauds, Thyroid, RA, diabetes, dry eyes etc, probably ANA. My youngest has already had a blood test for thyroid which had a negative result. All four kids have very different things going on with them!

 

[Clare.T]

Hi Karen

It must be very hard to put one's own fears and upset to one side so as to help the child as much as possible. As we all know lupus differs so much from person to person so the first thing is to find out exactly how it is affecting her by making sure she has had all the right tests and then make sure she is getting the best possible treatment.
I hope you can deal quickly with the guilt aspect. I have only had one brush with the notion that I have given my daughter my lupus. Luckily all went well but I hope I would have reasoned that there was no way I could have avoided it if that was on the cards, if we were so unlucky.
I have however got plenty of possible reason to blame myself for misfortunes that arguably I could have avoided. My guilt train has many carriages. We need to be very kind to ourselves, knowing we have always done our best and their is no recipe no way anybody can possibly guarantee trouble free 'perfect' lives for our children.

I am sure your daughter has inherited your fine qualities and character and has learnt how to deal with life's ups and downs by your example. Don't underestimate their ability to cope ! They are far more resilient, matter of fact and accepting than we think. The youngsters with who fare best are those with the support and understanding of their parents.

By the way my mother didn't have lupus or anything similar but she was a great one for somebody to blame for whatever went 'wrong' and if she couldn't find anybody else it would be herself. I really resented her moaning and attempts to self incriminate, " I should have done this or that" " Do you think it was caused by my whatever " and worse still, unforgivably if I choose to think that way, " You used to have such a pretty skin " or
" Everybody's looking at you all covered up on such a fine day " Gee, thanks ma !
I am quite sure that your daughter is aware of your distress and really you can't hide the facts ( whatever they actually are) from her. Even very small children know when something is up and it is so important to allay their anxieties. For them too, nothing is worse than the unknown. She knows she is unwell after all, so who knows what she is imagining - cancer? It has to be de demonised by simple matter of fact explanations of what's going on plus reassurance.

I don't know what all this talk about the "lupus gene " means because I have never heard of just one. Lupus is not an inherited disease in the strict sense of the word when for example there's a one in four chance of each child having the disease. There maybe an HLA type as there is for some diseases but having the HLA type doesn't necessarily mean the disease will develop and not having it doesn't mean the disease won't develop. It is very unusual to be type tested especially in the UK because it is very expensive. It's only done as far as I know when there is a real difficulty diagnosing because other symptoms aren't sufficient. Not even both of identical twins will necessarily develop lupus.

It is generally agreed that there is no point testing children who are not showing any symptoms. The presence of antibodies alone does not constitute disease. Of course we need to keep a close eye on our children for repeated signs of poor ill health : joint aches and pains, lethargy and fatigue, poor appetite, school performance deteriorating. I think it would be wise for our daughters to be tested for anti -Ro antibodies if we ourselves have them but it is not easy to arrange this, in the UK anyway.

We can also make sure they avoid excessive sun, that they eat fresh and wholesome, and avoid animal fats and those transfatty acids and processed sugars.
Why raise fears that might be quite unfounded.

All the best

Clare

 

[karen.w.]

Hi clare & lesley!

Thank you both so much for your kind replies :grhug:

Lesley I am glad that your pediatrician is supportive & would be happy to test your boys if the need did arise..I think I have probably been rather naive myself assuming that my children would be ok when I suppose there is always quite a risk with autoimmune diseases :worried:
however saying that hopefully our children will be fine :fingers:

I forgot to ask my rheumy how long I would wait for the appointment lesley but due to it being my rheumy referring her I hope it wont be too long.


clare you are so right about guilt..I think it comes as part of the 'motherhood package' I sometimes think it's such a pointless emotion too..well obviously it proves we care but as you said we can't change things & we should take solace in the fact that we have done our best!I do believe our lives are planned,fate etc & there are things that are unfortunately out of our control :sad:

clare I hope my daughter has inherited my 'good' characteristics,thank you for being so kind!..speaking to a good friend of mine yesterday she said my daughter was the most cheerful,optimistic & level headed child she has come across..it was a joy to hear & helped me feel more confident in her.
I am glad you mentioned about hiding things from our children that's something I was thinking about last night,chelsea has always been very much in tune with my feelings from as early as when she was a baby so I will bear that in mind.


To be honest clare I still don't understand the 'gene' thing I don't understand anything about blood tests etc (I know I should!)..the gene she has inherited from me that could develop into lupus is the same gene that I have..he also mentioned anti-ro antibodies but that was mine?...he said my other daughter might not necessarily have the same lupus gene (or is it autoimmune gene?)..it was Nuclei HEp-ANA..positive (homogenous pattern,speckled pattern)..ANA titre 1:640
have other children of lupus parents had this test done I wonder?

Let's just hope it all turns out to a false alarm,that her symptoms are not related..& regarding the 'gene' situation we can't live in fear of lupus being triggered because I can't always protect her from stress right through her life ...It's funny you should mention diet clare I do take comfort in knowing that my DD has always had a good healthy diet from when she was a baby..I think a happy stable childhood also helps too.
plus my hubby has said that if there is a problem there we will inquire about her being treated privately I feel better about that too.


I will definitely update when we receive the appointment.
Thank you again for your support ladies,It means so much to me :grouphug2:

lot's of love & hugs karen x :love2:

P.s my goodness!!sorry for the long post!!!

 

[Katharine]

Hey Karen

No worries about long posts. I think we can all feel for you and imagine ourselves in that situation.

As for the guilt. As a daughter I am extremely glad that my mother doesn't feel at all guilty for having given me this predisposition (I am a fourth generation - direct line - lupus or other sufferer). I don't think I could have coped with her doing that. I can take anything so long as I've got straight facts.

When she was first diagnosed with dermatomyositis (later lupus too) she was told she would die. Of course, the doc was wildly wrong but as I was eleven at the time, you do tend to remember.

Over the years after, I did ask if her disease could be hereditary and she honestly answered me that, no, normally it isn't. Obviously, we can now see that there is a genetic predisposition in our family but at that time she didn't know and hadn't made the link between her Mum's lupus and her dermatomyositis.

I also feel that just because I have the same type of disease doesn't mean I will be affected in the same way and I belive that I am getting better treatment and I was certainly diagnosed sooner.

I'm reassured too, to see that Mum is now seventy and doing very well, whereas her Mum died very young.

hahaha, now it's me going babbling on, we'll put it down to it being rather late!

Katharine

 

[karen.w.]

Hi katharine

you didn't babble at all I always enjoy reading your wise words!

I am so pleased your mum is keeping well & proved the doctors wrong!

you are right about the guilt,I need to deal with that & get past it fast!It was good to hear it from your perspective as a daughter,thanks that helped a lot!..
thinking about it the only other alternative would have been not to have had any children at all & that would have been very sad indeed :sad:

thanks again katharine for all your support!
hope you are feeling well yourself
lot's of luv & hugs karen x