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View Full Version : Hi... and needing some advice for 10 year old daughter



Hquest
07-04-2011, 11:55 AM
Hi~ (sorry if this is the wrong place to post this message!)
I'm new here (just registered).
I'm needing some advice regarding my 10 year old daughter who has been having a lot of lupus/connective tissue disease symptoms for the past few months and joint pains and chronice diarrhea before this. At first she developed petechia, so she was examined by a paediatrician who ordered a FBC and did autoimmune blood tests because I was insistent. The ANA came back positive (1:640)- I only found this out because I rang the ward as she was having a really bad headache and nothing was helping. I was told by another doctor that if I was really worried about her headache that I should bring her in to Accident and Emergency. I did and she was referred to paediatrics later that day. The doctor took a history and said he would ring me the following morning to let me know about a follow-up appointment with a consultant. I was told in the morning that it would be 2-4 weeks wait.
However, last Saturday my daughter developed a classic malar rash. I took her to the out of hours GP who referred her to the same ward. They are now taking it a lot more seriously and are fitting her in tomorrow... but I'm concerned that I will be told to bring her back for tests, or some other reason will be given which will delay a diagnoses and consequent treatment further. I'm worried about what all this is doing to her internally; she really isn't well and has spent all day today in bed. She finds it hard to breathe in deeply without it hurting her.
Any advice input you could give would be greatly appreciated.
Thank you and God bless~
Joy

tgal
07-04-2011, 12:09 PM
Hi Joy,

I hate that you are in need of us but I am glad that you found us. Sadly your story is one we hear way too often. So many people go months or years without diagnoses because of what you are going though. Your daughter is very lucky to have you as an advocate.

The first thing that I would do is put together a history of symptoms and what she has gone through. If you do not have copies of all of her blood results then I would get them. For future reference you need to get everything that your doctor has on her. Once you have the list of tests I suggest that you put a page together of all of the results that are not normal (not just the number of hers results but the range of normal as well because ever lab uses different criteria). These two papers, the one page history and the blood results you need to make several copies of and take them with you whenever you go to a doctor. Don't give that to the nurse. If you do it just gets lost in the file. Hold on to them and hand them directly to the doctor when he/she comes in.

Keep doing what you are doing! You are being an advocate for your daughter and that is exactly what she needs! Just remember that we are here for you as you travel down this difficult road. I hop

Peridot20_Gem
07-04-2011, 12:23 PM
LUPUS SYMPTOMS

What is lupus?

Lupus is a chronic disease that can have a serious and widespread effect on the body including the skin, joints, muscles, and other organs. However, in many cases, lupus is a mild disease that can be successfully controlled with regular medical care. About 1.5 million Americans have lupus, and about 90 percent of people with lupus are women, according to the Lupus Foundation of America (Source: LFA).

Lupus is an autoimmune disease. Normally, your immune system can tell the difference between your own tissues and foreign invaders, such as bacteria or viruses. The immune system produces antibodies that target bacteria, viruses, and other abnormal substances for destruction. But in an autoimmune disease, the body’s immune system mistakes healthy tissues and organs as dangerous invaders in the body and attacks them. This results in chronic inflammation that can eventually damage and destroy the affected tissues and organs.

There are four types of lupus. They include:

•Discoid lupus erythematosus affects the skin. Discoid lupus is also known as cutaneous lupus.

•Drug-induced lupus erythematosus occurs as a side effect of some drugs, such as beta blockers, which are commonly used to treat heart disease and hypertension.

•Neonatal lupus erythematosus is a rare form of lupus in newborn babies whose mothers have lupus, which can cause problems at birth or a serious heart defect in rare cases.

•Systemic lupus erythematosus causes inflammation in multiple organs and body systems.

The onset of lupus often occurs in young adulthood through middle age. Common lupus symptoms include joint pain; extreme fatigue; headaches; swelling of the legs, feet, hands and face; hair loss; and a butterfly-shaped rash across the bridge of the nose. However, in many cases, lupus is a mild disease characterized by periodic episodes of some of these symptoms. Seeking regular medical care and following your treatment plan may help reduce the risk of serious complications of lupus.

www.bettermedicine.com/article/lupus

Hquest
07-04-2011, 01:30 PM
Hi Terry and Tgal,

Thanks so much for your advice and support. Thanks, also, for the reminder about writing the list of symptoms. As it takes so long for a diagnoses, the much needed treatment is delayed and this is my main concern with my daughter.
It's encouraging to know that there is a supportive online community, though, and I'm glad I've found you!

Joy

Peridot20_Gem
07-04-2011, 04:20 PM
Hello Joy,

I'm glad me and tgal was able to help and keeping records like tgal (Mari) said goes a long way besides.

I just hope that when blood tests are done that something shows to what's causing your daughter to feel so ill and you've come to the right place for support and venturing through the threads you'll learn so much from member's.

Any time you need to chat or vent just come on as there's always someone on 24/7.

Hugs Terry xxx

Elo
07-04-2011, 05:20 PM
Welcome to the forums :) Unfortunately, i'm undiagnosed as well, so I can't really help too much with the medical stuff, but I would also really recommend writing down any questions or concerns that you have. Don't hesitate to make sure that the doctor knows that this is serious and you need to get something done about it. I know that when dealing with doctors, i've been too timid and let one of my doctors give up and just tell me it was stress and not a big deal - when I was too sick to even function very well.
Fortunately, you don't seem like you'll have that problem, since you did insist to check for autoimmune, which was very smart of you.
Also, try to be as straightforward and insistent as possible. I know that this sounds bad, but sometimes it's like if you give them any leeway or any chance to misunderstand you or shrug you off, they'll take it.

On top of keeping a record of symptoms or a list, try to pick out which symptoms are the worst or affecting her the most. Sometimes keeping a list of all the symptoms she's ever had, even barely, can be a hindrance and lead some people to think that you're complaining instead of trying to give an accurate account.

Sorry I can't help much, I'm sorry to hear about your daughter, but it's a good thing she's got someone like you to be there with her and make sure everything goes smoothly.

steve.b
07-04-2011, 08:20 PM
hello joy,
i hurts us as parents to see our children suffer.
i have 2 children who also have health issues.

the people before me have given some good advice.
keep your lists, and photos (of the problems).

please remember that a doctor has trained for years to be where he is.
sometimes a little diplomacy goes a long way.

be assertive though, youare there to make sure your daughter gets the care she needs.

i will be thinking of you, and waiting to hear how things progress.

Hquest
07-05-2011, 11:36 AM
Hi,
Thanks again! Terry, it's good that there is a place like this where people can come and vent anytime.
Elo, it must be hard to be undiagnosed and still feel as awful as I'm sure you must at times.
I was sorry to hear that you had 2 of yours not well, Steve.

Today wasn't that bad; they have done further blood test such as anti dsDNA and anti sm and some others specific for Lupus. I will know the results in about a week's time.
My daughter has been given an appt for 2 weeks' time to see a consultant, it will be brought forward if any of the results are positive. Including the repeat of the ANA.
I think it's fair enough as I want to be double sure myself before starting her on lifetime treatment of steroids etc... I just see her so unwell and wish they would get to the bottom of it soon...
Hope you're not having too bad a day today... there really needs to be a lot more acknowlegement and awareness of this disease... not many people seem to know what it is... even my mum (who's an SRN) has asked a work collegue for advice as her knowledge was fairly limited!

Peridot20_Gem
07-05-2011, 03:36 PM
Hello Joy,

I've vented away loads of times mate while tears have been falling and the love and support is unbelieveable, you'll find that out more in time to come.

I am pleased they've done furthur tests on your daughter to see what's showing and if she is Lupus related the right meds and amounts can help her and your right this disease is'nt recognised enough and what makes we all so angry we can suffer badly but to outsiders who have'nt got a clue we look ok and healthy...this issue as been disgussed so many times.

I'm just pleased your daughter's day and your own as been abit better.

Love Terry xxx

steve.b
07-05-2011, 08:54 PM
hello joy,
the best possible outcome for your daughter, is full remmission without steroids.
it is possible.

the next best is where i am at now, lupus being controlled by drugs (not steroids).
i need my drugs every day, or i will go backwards really fast.

a lot of people survive very well without steroids.
i know this is a fear for a young developing body.
steroids may be needed only when her lupus is flaring, or it may be a daily requirement.
lupus treats us all as inderviduals, we are all effected differently, and react differently to the same medication.

i hope the tests come back in your favour. and the lupus is easily controlled.

Gizmo
07-06-2011, 09:24 PM
Welcome Joy! I also have a daughter (now 19) who dealt with autoimmune symptoms throughout her childhood. She finally was given the label of "undifferentiated connective tissue disease" and started on treatment. I can't tell you how many battles I have fought and how many specialists I have taken her to (dozens). She has multiple medical issues, so her experience will hopefully be very different than your daughters. The point is, you have to keep fighting, no matter how discouraged you get. It sounds like things are actually moving along quite well for your daughter in terms of tests and appointments. If you reach what seems like a dead end, stay strong. Doctors REALLY want kids in school, so we found that with some docs it helped to emphasize how much our daughter loved school and how hard it was for her to miss class. Unfortunately, a few docs assumed that she had school anxiety and that was where her symptoms were coming from. When that happened, I looked for another doc. As a mom, you walk a fine line. You have to be a strong advocate for your child, but you also run the risk of being labeled overprotective or enabling, or just a plain pain in the a$$. I've found that being straight forward, keeping good records and leaving my emotions at the door is helpful. Coaching my daughter to speak up for herself has also been important. A plea from her for help has changed the attitude of more than one doctor.

Please keep us up to date on what is happening. I know I get emotionally invested in people's stories and it is sad when they never come back to tell us what happened.

Hquest
07-07-2011, 02:32 AM
Gizmo,
I cannot stress enough my heartfelt thanks for your post. (I have read quite a few posts on this site and they're so full of understanding, warmth and a lot of good advice inbetween~!)
I think I have already been labled as a little overprotective, especially that my daughter is also home-schooled!) I have stressed how much she normally loves riding, and swimming and jumping on the trampoline with her friends, but she doesn't feel well enough for these things she once enjoyed.
Your story, although different in some ways, brings back a resounding yes... I also have to encourage my daughter to speak for herself, I've kept a diary, I've done my very best to sound more factual rather than overly anxious.
I have been told that my daughter's appointment should be brought forward if her results are positive... however, as we haven't actually seen a specialist yet since it all began 3 and a half months ago, I'm wrtiting to him to make sure.
Thanks, once again, all of you who have so kindly taken time to answer my query. I can't tell you what it meant to know that people from local and wide were thinking of us!
Joy

Gizmo
07-08-2011, 03:49 AM
Joy, in both of your posts it sounds like you are doing a great job with your daughter. We have hit many walls with our daughter, and I know that's when you really have to pull out those mama juices and keep fighting. One thing my daughter has said on multiple occasions is that she appreciates that I keep looking for answers, even when she has lost hope. She even says that when I irritate the docs!

You are on the right track with comparing how active she used to be to what she is able to do now. Docs seem to hold athletic kids in higher esteem. I think the same is true of adults. I've often wondered if I were thin and a runner/skier/dancer, would the docs take my complaints more seriously? Why is it more important to get a runner back in their next marathon than it is to get me to be able to walk a mile? Whoa, I just went way off topic. Sorry.

Hquest
07-13-2011, 04:21 AM
Hi,

My daughter's appointment has been brought forward due to her tests results. I didn't even ask what the results were... I was kind of in shock I suppose. She's seeing a consultant Rhuematologist today to see about treatment. I must admit I am feeling ... I don't know exactly what to feel right now, but I'm unsure about the treatments out there as she's so young, but if she needs them then....

I suppose I just needed to share with you all as I'm so concerned. I'll need to take time to look into it all a bit more...

I know you all understand... whether you're going through this awful disease yourself or you're caring for someone who is...
Thanks for 'being there'!
Joy

P.S. If there's any advice, I would really appreciate it!

steve.b
07-13-2011, 05:12 AM
be her advocate.
tell it like it is.

make sure they do not dismiss anything as unimportant.

i hope all goes well.......... she gets the meds she needs!

Elo
07-13-2011, 09:45 AM
Hi,

My daughter's appointment has been brought forward due to her tests results. I didn't even ask what the results were... I was kind of in shock I suppose. She's seeing a consultant Rhuematologist today to see about treatment. I must admit I am feeling ... I don't know exactly what to feel right now, but I'm unsure about the treatments out there as she's so young, but if she needs them then....

I suppose I just needed to share with you all as I'm so concerned. I'll need to take time to look into it all a bit more...

I know you all understand... whether you're going through this awful disease yourself or you're caring for someone who is...
Thanks for 'being there'!
Joy

P.S. If there's any advice, I would really appreciate it!

I've got my fingers crossed for you both. Here's hoping it goes well and they're understanding.

Keep us posted on the results!! We're pulling for you here

Peridot20_Gem
07-13-2011, 12:19 PM
Hi,

My daughter's appointment has been brought forward due to her tests results. I didn't even ask what the results were... I was kind of in shock I suppose. She's seeing a consultant Rhuematologist today to see about treatment. I must admit I am feeling ... I don't know exactly what to feel right now, but I'm unsure about the treatments out there as she's so young, but if she needs them then....

I suppose I just needed to share with you all as I'm so concerned. I'll need to take time to look into it all a bit more...

I know you all understand... whether you're going through this awful disease yourself or you're caring for someone who is...
Thanks for 'being there'!
Joy

P.S. If there's any advice, I would really appreciate it!Hi Joy,

I'm wishing you and your daughter all the very best refering the Rheumo appointment...if they're able to treat your daughter, ask what affects the drugs may have etc so it helps you besides your daugther knowing what's going on.

Please keep we updated if you don't mind and also on her bloods.

Terry xxxx

Hquest
07-13-2011, 12:35 PM
Hi,

Thanks Steve and Elo!

My daughter has now been given a diagnosis of SLE and has been put on Quinoric (Hydroxychloroquine) to begin with. She's to have further test such as ECG, MRI and a blood dye test. So that's as far as I know right now. The reality of it all is slowly sinking in.

It meant a lot to know that there was support on here.

Joy

Hquest
07-13-2011, 12:46 PM
Hi Terry,

I've just noticed your message... I'll fill you in soon... just about to put my daughter to bed.

Thanks for your best wishes!

Joy

CWARD
07-13-2011, 05:58 PM
Hi my daughter is now 22 but your story brings back haunting memories..........i was told time and time again it was anxiety when her chest hurt and it was hard to breathe at about 10 11 years old....she complained of fatigue joints hurting.....then vitiligo.....ill cut to the chase.....even though i have lupus and ra....my mom ....an aunt they meaning my daughters pedi wouldnt listen......so my daughter did internilize it...scared her felt lousy no answers.......let your daughter know there are solutions for her.....that dr.s sometimes need more pices to be put together dont let her feel she is imagining it but dont let her feel theres no answer. My daughter is now 22.......withdrew from college 2x hospitilizations......kidney biopsies because her kidneys affected...she kept getting utis her pdei just gave her antibiotics one a sulfur druf landed her in the hospital.....when u have luous u dont give this drug......ok no need to hear my story.....go with your gut......insist......test.......push......and let your daughter know there is an answer....and she can feel better.....this is very hard on you...good lord i know..........god bless you......have lupus panel.....kidney work up..everything

tgal
07-13-2011, 06:17 PM
I am terribly sorry that your daughter has been given this diagnosis but I am glad they are starting treatment. It will take Plaquenil (the med she is on) several months to get in her system and really work. Some of us have absolutely no trouble taking it and and some do. It is the first line drug for Lupus Treatment but you don't see it quickly.

A word of advice to you about doctors appointment. Write all questions down and take the paper with you. Once you get in there you get bombarded with things and forget. I would also suggest getting a copy of all your daughters tests and doctors note and keep them in a folder. Too often I go to doctors appointments and they say "We will have to discuss that next time because I didn't get the results". If you have them with you that can't happen. The other thing that I found helpful was to type up a single sheet, very brief history of the disease and its affects on your daughter. Don't give it to the nurse when you have them the test results to copy. Keep this one and give it to the doctor when he comes in. If you do this he HAS to read it and not just toss it in a file.

I hope this helps and I am so glad to have you with us. It sounds like you are doing a fabulous job with your daughter and she is very lucky

tgal
07-13-2011, 06:19 PM
I have no idea why or how this thread got closed but I am re-opening. I am sure it was operator error (me) due to the shaky hands

steve.b
07-13-2011, 08:36 PM
i am glad she now has a name for her problems.

with a name..... medication can begin.

please read again what tgal has written.
she has written some very good ideas.
it can save months of heartache.

Elo
07-13-2011, 09:15 PM
Congratulations on finally getting somewhere (: I know it really sucks, and i'm sure it will take a while for it to really set in, and even more time for you to adjust... but for now let's be happy with the small victory of getting her diagnosed and on a treatment plan. I know that's easier for me to say, but i'm a believer that celebrating the small victories helps you get through the hard times.

Stick around here so that when it does set in - you have somewhere to really let it all out and whine or rant on here. It's hard to do that in front of the people close to you sometimes, but all of us here will understand and support you through everything.
Blessings...say strong, take it one day at a time. You can get through this, and help your daughter through it as well.

Hquest
07-14-2011, 04:35 AM
Hi,
I have finally noticed the "Thanks" part of posts! A very big Thank you to you all for your advice.
Tgal, I think getting a copy of blood tests etc is a really good idea... just unsure about the system here in comparison to the US. Your post is full of good advice. I will certainly ask as I know how issues can arise and complicate things later on, already I feel that it was dealt with wrongly from the start, especially considering her GP put her joint pains down to 'growing pains' two years ago and didn't even look into the causes even though I was saying she's crying with the pain at times.

However, it was very different yesterday. There was a consultant and registrar rheumatologist and a consultant in general paediatrics. They took it all so very seriously and we were there for about 1 and a half hours. I suppose it's restored my faith in the medical profession and the way they explained to my daughter how this disease affects her was good and they didn't mess around with explaining possible side effects either... this was after I asked my daughter to go and get a drink with her god-mother.

Elo, thanks for your post... I'm sure I might need to vent sometimes. In some ways I felt relieved by the diagnosis, but it was still a shock, even though I strongly suspected Lupus. To hear the doctor say that this is what she's got wasstill hard to accept. Wierd, eh? I'm still finding it hard to face the reality of it and what it all means. I suppose it's just taking one day at a time for us right now. I know you mentioned that you have yet to be diagnosed, are you on any treatment at all?

Steve, I looked back on this site before I set off for the appointment and saw your post... it was so encouraging, thank you! I had it in mind to be her advocate, and she was so good at explaining how it all affects her. I was, and am, so proud of her!

CWARD, it really sounds as if you had such a hard time getting the doctors to accept what was happening. One of the things I have found out is that children often have it worse because of the delayed diagnosis and subsequent treatment. I'm so sorry that you and your daughter had to go through all that before you got the right help. It really is appalling! More needs to be done to educate the health profession, to find better meds and a cure.

Joy

Elo
07-14-2011, 05:17 AM
I'm so glad you found someone who actually listened and took it seriously. It amazes me sometimes, that doctors brush off people who are legitimately sick, especially who are so young.
I know what you mean about the diagnosis. I was sick for every day for about 6 months - nothing, compared to so many others, but from day one I knew something was wrong. I assumed it was just a bad "feel like crap" day, but after a few weeks, I knew it wasn't normal. I spent a long time finding a doctor who would actually listen to me, and not just write it off as stress or whining. Went through four of them... finally found a doctor who ordered the right tests, but she told me that seeing a specialist would probably be too expensive for me and not worth the cost.
Long story short, the only things I'm taking are fish oil, vitamin D because I don't get out in the sun much, and antianxiety/antidepressant medication because I started having panic attacks when the pain got too bad.
Man, I got off track there...my point was, for months I knew something was horribly wrong, and I finally got diagnosed with having an autoimmune disease, but nothing else. That afternoon when I found out, I was in shock. Ecstatic, at first - Finally! I'm not crazy! Or a whiner, or making myself sick- it's an actual condition! And they've found it! Hurrah!!! - but after a day or so, more in shock. I wasn't really grasping the full meaning, and in a lot of ways, i'm not even there yet. It's very hard to accept, you're right about that. It's been about a month and a half, and i'm still waiting for the moment when it hits me.

Still, this forum has been crazy helpful to me, and i'm sure it will be for you as well - you can come back here and just spout off when you have those moments- the ones you'd rather your daughter not see.

I'm so glad your daughter has you to advocate for her, and I really truly hope she starts improving soon.

steve.b
07-14-2011, 05:49 AM
joy,
1 1/2 hour appointment is good.
that was plenty of time for them to check out lots of things.
i am glad it went well.

Peridot20_Gem
07-16-2011, 01:53 AM
Hello Joy,

It sounds like you came across to good specialist's who explained alot to you and the amount of time you was there was good plus it helps you on taking things in and questions you need to know.

Hows your daughter feeling now and i hope it's a better day for her...please keep we updated.

Terry xxxx

Hquest
07-16-2011, 04:40 PM
Hi Terry,

Thanks for your message and encouragements!
My daughter's resting on the sofa most days and seems to have more energy towards the end of the evening. She's asking a lot of questions about it all and we're learning a lot together. Obviously I'm shielding her from the few and far between worse case scenarios that we all know about. Remaining positive is the key. Did you know that there is a support group in the West Midlands? It's part of the LupusUK charity.

Hope you're able to take it easy!

Joy

Peridot20_Gem
07-16-2011, 04:54 PM
Hello Joy,

We like to hear updates on member's and how they're keeping healthwise.
Alot of us lupus members are well drained out till after dinner and the rest will do her body good...most days i don't get dressed until 1 or just after in the afternoon through the Lupus and meds i take besides.

Learning together is excellent and keeping the worst parts from her is even better till your daughter knows what she's really got besides and that's when you face things together more, if anything else shows.

Joy actually i did'nt know there was a support group in the west midlands because when i was in the day unit up the hospital for my kidneys, the sister was chatting with 2 nurses and told them patients usually get councilling if needed as alot find it hard to deal with but thanks again for mentioning it.

Love to you both Terry xxxx