[Stacielee1967]

My daughter has always been the kind of kid that gets ill all the time. She has always suffered from intense growing pains and I remember the nights I have stayed up rubbing her legs for hours on end. She reminds me so much of myself as a child with the growing pains and always ill. I have SLE and my grandmother had scleroderma and lived to the ripe old age of 83 and was diagnosed in the 70’s. She may have lived much, much longer then expected but her quality of life was poor.

Anyway, this past April she got ill with what seemed to be a virus. It has taken months to get over it and still it tends to flare up, her glands in her neck and just generally unwell. A week ago she complained of really bad achy pains in her hips and back. She stayed in bed then I noticed these hives on her face. She is 16 and when I saw these hives I was absolutely devastated. These hives reminded me of the chronic flare ups I would get for years until I was diagnosed. I still lived with them because I didn’t want to take any medications and just put them down to some allergy (denial). They are unsightly and itchy but not so much so as to needing treatment. Once things got out of control and I had a severe flare I was put on Plaquenil and Methotrexate and I have not had any more flare ups up the hives.

As I was saying, I look at my little girls and just pray that she is not following in my foot steps and that of my grandmother. I will be taking her to see the doctor on Tuesday and I am so thankful that my GP has a sister who has a connective tissue disease and understands these medical problems as not many GP’s understand them. My daughter has lost over 15 ponds in the last few months. She is already very tiny and petite but how she is so thin. She weighs about 90 ponds just under 6 stone and is 5 feet tall.

If she is suffering from one of these conditions or diseases how do I as a parent deal with the guilt and feelings? She keeps asking me if she has Lupus too. I tell her I don’t know but we will get it checked on Tuesday. She wants to know if she does will she end up like me. My flare a year ago caused irreversible damage to my feet joints, tendons and ligaments and I have had to stop working because I can’t walk or stand very well anymore. I know she is scared to death when she watched her great grandmother suffer all these years and how bad I am. How do you put them at ease? How do you tell them everything is OK and I am probably over reacting when she sees the same symptoms on her that I have had in the past? I can’t sit back and say she is over reacting because she isn’t. These are general and true concerns. I hope she doesn’t have Lupus or another form off autoimmune disease. For years now both my daughters have asked me how will they know if they have these diseases or not. I have always told them not to worry because there is a slight chance they could although I know that wasn’t the absolute truth and it would be when they are much older.

Thanks Stacie

 

[Maia]

I guess I would stress to her that she will be getting checked for any possible autoimmune disease early, and early treatment could very well make a big difference in her health and hopefully stopping the disease from progressing to a more serious state. I'm sure the doctor will take you and her symptoms seriously, and run the appropriate tests.

I really feel for you, and have had the same worries for my own daughter as you have for yours. The truth is that there is a pretty low risk of a child getting autoimmune disease if the parent has it (about 5% for girls) but it doesn't make one feel any better if you happen to be in that 5%.

If she does end up with an autoimmune disease of some sort.... I would also emphasize that life with lupus is still worthwhile, and is enjoyable still too! Hard times come to everyone, and she will have the love and support of her family and friends and early treatment that she needs.

(((hugs to you both)))

 

[KitKat]

Hi Stacie,

I do hope the visit to the GP goes well and that you and your daughter get some answers and some help really swiftly.

I dont know what it is like to be a parent but I do know what it is like to be a daughter. Neither of my parents have an rheumtalogical diseases but both of their mothers do - My Nan had Lupus and my Gran has Rheumatoid Arthritus and now I have Lupus and my sister has RA.

One day when I was doing particularly badly my dad suddenly started to cry and said he was so sorry that it was his fault that I had Lupus. I was so shocked! Obviously I realised that there was a genetic link but it never occured to me that he would feel it was his fault. This is just a disease. He didnt plan for me to have it or maliciously infect me with it. It might not be anything to do with him anyway.
Also coming from a family that has Chronic disease comes with great bonuses. Firstly they know you are not going to get better so they are not disapointed when you stay sick. Secondly they understand that your health fluctuates, the regular question I get asked is how are your spoons today? Thirdly they understand some of the extra pressues and frustrations that come when you body doesnt do what it is supposed to or when your plans are spoilt because you are in hospital. All of that is so very valuable.

I would be honest with your daughter and talk through with her that you wonder if she has an auto immune disease because you recognise some of the symptoms. Explain that mum's are known to fuss but you would rather get it checked sooner so that if the small chance that it is an auto immune disease is right then she can get the right medication and start to feel better. Talk to her about what her thoughts are about the Dr and what she wants to tell them when you go.

If she does get diagnosed with an auto immune disease try and get her some counselling. It sounds like she is very afraid about what the disease might mean for her and having a safe person outside of the situation to share those fears with would probably be very helpful. There might be counselling linked with her school/college or she should be able to access some free help through a local connexions service.

I hope that helps. Personally I wish my dad would feel bad about giving me his short fat legs. People see them, only people I choose see that I am sick.

K

 

[helloos]

I am sorry that you have more stress by the worrying about your child. It is just that we want to protect our children from any harm or wrong doing and when you have an illness it is out of our parental control which I think makes us go mad that we can't "fix" things for them.

I also think that by you alrealdy being very educated about Lupus and other autoimmune disease that you already are a step ahead of the game. Just by you telling her all the things you already said that she will get checked out, she may or may not have it, other advice that the others have given you about Lupus can be well controlled and if detected early. New treatments now, etc. etc... will comfort her. Just for her to talk about her fears to you is a good thing rather than keep it all bottled up. First step is to see what the doctor says and what the results say, then take it from there.

You are a very strong, caring person and I am sure that your daughter sees your strenght and courage and that alone will do the world of wonders for her.

Let us know how you make out and I will pray for your daughter and you as well for a great outcome.

 

[cemc]

I'm so sorry to hear that your daughter is having problems. Please hold onto the thought that things change from generation to generation. My mum had rheumatoid arthritis from age 13, and later SLE as well, and she feels guilty that I am having problems now at the age of 50 plus! But, when I think of what she went through in terms of symptoms and treatment, things have changed a lot. Mum had plaquenil in the earliest days of it being used, when they used much higher doses than now. She ended up having to stop it because of macular degeneration (something that happens much less often now than it used to on the high doses). This is one treatment they have refined so it works much better. In the next generation of people with lupus there will be other refinements, and better treatments as well as better early intervention. Even if your daughter has lupus, it won't follow exactly the same course as yours for any number of reasons. Even if she is having quite severe symptoms now, it doesn't mean it will always be like that for her. (((((((((((((((hugs to you both))))))))))))))

 

[LolaLola]

Dear Stacie,
I am a Lupus patient with a Lupus Daughter aged 17.
Imogen (Immi) became steadily worse leading up to diagnosis in January. She also has a heart murmur and a deformed renal tract. Like your Daughter Immi lost a huge amount of weight. She saw Doctors locally who were very dismissive. She now goes to St. Thomas' like me and sees Dr. D'Cruz. He is very good with her and despite her previous bad experiences she feels perfectly at ease with him.
Immi says you must tell your Daughter that Lupus is not that bad. She copes well really although she cannot manage College and had to be Home Educated rather than School.

Obviously, I don't like her being ill and can imagine your feelings. I got a lot of support here when Immi was diagnosed and I am sure you will too. If there is anything I can do for you I will.
x Lola

 

[Douglas]

Lots of folks have odd hobbies. Many opt for worry but a good few pick guilt. Neurotic guilt is really quite useless and for a parent to feel guilty about the defective genes passed on to a child is about as normal as my feeling guilty for the Boer War!
My daughter, who has a form of MS, jokes about having received all her good genes from her Mother and all her bad ones from me. Fortunately it is a joke.
One can take another tack: our daughter can blame me; I can blame my Mother; she can blame her Mother who can blame.... A near infinite regress comes to pass. In the long run I guess we can all blame Adam and Eve.
Genes are just part of the hand everyone is dealt; not every hand is a Royal flush. It doesn;t matter what hand one is dealt; it's how one plays it that counts.
I would turf the guilt and get on with the joy of living. But we are all free to hold on to our hobbies.
Douglas+

 

[LindaMo]

Hi honey - you know guilt is such a destructive emotion, and what you need now is to be building stronger links with your lovely girl!

I have a close friend, who's first child was diagnosed with Cystic Fibrosis - both of them were carriers, so him & his wife decided that when they had another child, they would use a sperm donor.

This second child now "blames" his father for not wanting him, claims he is treated differently to his sister etc.... So my friend feels that he really couldn't do right for doing wrong - when all along, he had the best interests of his child at heart.

However, his daughter, who has CF, has never once said to either parent "it's your fault".

I think my message here is that if your child is going to blame you for "something", they will find that "something" regardless of what you do, and this will be due to the relationship you have!

Sorry if that's a bit preachy - but I think you sound like you have a good relationship with your daughter, and that will see you through!

Good luck
Lxx

 

[Katharine]

Hi Stacie,

I am the daughter of a mother who has dermatomyositis and lupus. I have to say that it has never entered my head to blame her for having lupus and I would agree with someone else who said that if a child wants to blame you they will always find a reason without needing one such as lupus.

My mother never even suspected that I could possibly get lupus but throughout my life has dealt with it very factually.

Unfortunately many of us are of generations where guilt was probably the "subject" best taught. I know that certain people did a very good on me (not my mother) but with time I have come to realise that not only is it highly overrated but it is also harmful.

There are so may other things in life to be getting on with and at the end of the day, if one wanted to be harsh with oneself, we could eve say that guilt is rather self-indulging. I don't mean to say that you are being selfish by feeling guilty. It is quite natural to feel guilty but I think that that has to be very much seen in perspective and controlled. It musn't get in the way of being the wonderful mother that you are. Of course, having said all that, I'm sure I would have all the feelings you have if I were in the same situation and I would have to work on myself not to let it take control.

I really hope that any tests turn out to be negative but if they don't at least your daughter will have the advantage of a knowledgeable, understanding and loveable mother. She will also have someone fighting her corner who won't tell her things are in her head. And, above all, if her disease is caught early and with today's treatment, she has every chance of having a very good life.

hugs to you

 

[flutterbye]

(((hugs)))

I can understand just where you are coming from, and have the same worries and concerns, and have been where you are.

I hope that things went well with the GP, it's good that she sounds understanding.

Have faith in yourself, whatever happens its not your 'fault' and I think as mums we step up to whatever is thrown at us, and do the best we can for our kids, but how you feel now is totally understandable. For me the unknown and worrying is the hardest to coipe with.

 

[onetay]

I have found that it is always good to be honest about everything. Let them know you are there and understand their fears. You can't stop it if they do have lupus but together you can handle whatever is going on. You sound like a close family and you have a wonderful support in each other. If it was not for my daughter I would not of been able to work as long as I have. I have never hid anything from my children they need to know and they need to know I am here for them if they ever get told they have lupus. Comfort her as much as you can and talk openly about your fears and concerns together and with the doctor.Best wishes to both of you.
onetay