[bhouse]

#1019476

My 10-year old daughter went in for a physical a couple weeks ago and next thing I know we were running around to get tests done. Yesterday I get a call from the doctors office it’s final she has Graves disease and to pick up a prescription. No one has explained anything to me. I’ve done some web searches and have figured out that little things I thought were normal for my daughter are actually symptoms, but then one page contradicts another in small ways and so on and so forth. Basically I feel lost and scared – I don’t know what to expect, what to do, or exactly how to answer all the questions my daughter has. Any suggestions. :” title=”Question” />
Thanks,
Becky

[catsmum]

#1071894

Hi Becky,

I know exactly how you feel, my daughter is 17 and was diagnosed a couple of months ago after routine blood tests. I too can now look back & see that things I thought were just ‘normal teenage’ things were actually signs of the disease, such as mood swings, fatigue, excess sweating etc. It is really scary at first, but once you get over the initial shock & begin to learn more about the disease you calm down a bit.
We recieved a phone call on Christmas eve from our doctor saying they’d recieved her blood test results and we had to ‘drop everything & get up here now!’ By that evening Cat was taking 18 pills a day! She went onto high dose beta-blockers initially, along with carbimazole to ‘switch off’ her thyroid. We were told to be observant & contact her doctor imediately if she had any difficulty breathing, cough, sore throat, chest pain…. the list went on & really panicked me! I felt like I had to watch her day & night She, however just got on with things. It’s amazing how resiliant our kids are.
Now she is on block & replace (still taking carbimazole to keep her thyroid switched off, but also taking levothyroxine to replace the thyroid hormone she’s not making naturally). Some days are better than others.
The main thing is that you have a diagnosis, so you can both now deal with & control this illness. I am eternally grateful to the doctor who picked up Cat’s condition. Without her we would have just dismissed things as ‘teenage hormones’ & my daughter could have had major health problems. Now we know what it is WE are controlling the disease.
I have found this forum invaluable when either Cat or I have questions we type them in & know that someone will be there to give us advice. Never feel embarrased or silly for asking a question on here, we have all been were you are right now and know how scary & confusing this is. There will always be someone here to offer advice & support to you both when you need it.
Take care of yourselves,
W x

[DianneW]

#1071895

Becky,

It’s completely understandable that her symptoms would creep up and seem to be part of what was normal FOR HER. You had no way of knowing what was part of her changing into a young woman and what was abnormal. I went through the same thing with myself, not knowing what was an illness and what was part of becoming older–and of course your daughter would have no way of knowing either. The important thing is that it’s diagnosed now and being treated.

What questions does your daughter have? We’d be glad to help answer those the best that we can, and help you figure out which ones only her doctor should answer. It’s really good to make a list of questions before each appointment so that your questions don’t get lost in the short time available. It’s a good idea for both parents to be at the appointment as well, since in the anxiety of the appointment it’s easy to forget the answer or not hear the entire answer. One parent can make it the job to try to listen carefully to the answers. (Sometimes the other parent is busy paying attention to the worries of the child or other details.)

I think when you have more answers you will feel more comfortable about your daughter’s treatment plan and what the future holds.

Best wishes,

[bhouse]

#1071896

Thank you both so much for your words. I don’t even know where to turn for information really, aside from forums at this point, because our family doc has never dealt with it in someone so young. He sent us an e-mail not about Graves Disease, but about her thyroid. I know the Thyroid is the biggest part of this, but i am so confused. I’ve tried doing so research myself, but one web page says it can be fatal, the next says it’s not. One says her immune system is low so if she barely gets sick to take her to the doctor immediately, the next says shes normal. One says she might need hormone shots, the next still says she completely normal. I’m so confused, I apologize if I sound crazy going on like that, i really am not, it’s just the way I feel since I don’t know what to look for, or what the risks are.
So far, I took her to get her eyes checked because she’s always been able to scare people with them, by making them look like they are really huge and bulging. Eye Doc said that is normal for her, there are no issues with her eyes, but to get them checked routinely.
Our Family doc put her on Tapazole 5mg three times a day, Which scared me in itself because according to the pharmacy and online that is the adult dosage,, but both the pharmacy and I called the doc to verify and were told her TSI levels are so high it is needed and he came to this decision after consulting with other doctors.
With my daughter I’ve only gotten as far as telling her she has Graves disease, comforting her when she immediately started crying thinking she was going to die and explaining she will be taking meds for a very long time. She went to school and told her teacher she’s got Graves Disease and apparently he does too, so I think that helped calm her some because she seems calmer and hasn’t asked me a lot of questions yet (thankfully since i still don’t really get it).
I guess my biggest questions right now are 1. Is it fatal? 2. What are the major things I need to watch for? 3. Does she need a specialist?
Thanks for listening to me and for your help.

[catsmum]

#1071897

Becky,
I know exactly how you feel. When my daughter was diagnosed a couple of months ago I had so many questions and concerns and no definitive answers.
Firstly – good news! Your daughter is diagnosed and the doctors are onto this disease. That means you are able to manage it. It’s when it is left unidentified/unmanaged that it causes serious problems. My daughter was also put on what seemed an incredibly high dose of beta blockers to begin with. The idea of these is slow down her metabolism, including her heart rate. Her body is producing too much of the thyroid hormone which is sending her organs into overdrive. This is the dangerous bit. If the heart is going too fast, well you can imagine what might happen. BUT… the doctor identified this & your daughter is now on meds to bring her heart rate etc down to a safe level. She’ll need these drugs until the doctors get her thyroid hormome levels down to ‘normal’. They can do this several ways. Often, here in the UK anyway, they begin with ATD’s (anti-thyroid drugs) which stop the thyroid producing the hormone. Another approach is the use of Radio-active iodine (RAI) which ‘kills’ thyroid cells thus reducing the amount of thyoid hormone produced. The third method is surgical removal of part or all of the thyroid.
Whichever method you choose, as the thyroid hormone levels in her body fall then heart rate etc will also settle & eventually she’ll be able to stop the beta blockers. My daughter took 3 months to cut these out.
Next, if she isn’t producing thyoid hormone because of the treatment above, she’ll be given it artificially through meds. It is likely to take a while for the doctors to get her levels of hormone correct, so you’ll both have to bear with it. It may go too low & she’ll become hypothyroid which in itself has problems, however it is not as dangerous as hyperthyroid.
I was told that my daughter might get immunosuppressed, basically the drugs could stop her immune system working properly & she could become very ill. I pannicked & watched her for any signs of cough, cold etc. However, I’m told this is very rare and does not happen overnight, so as long as she is having regular blood work done it should be picked up. (ask for her White Blood Cell count). We now know that we don’t panic, we just watch out for viruses, sore throats etc (stuff all kids get) that doesn’t clear up in a couple of days as we would expect, or if she runs a fever, has a rash or difficulty breathing. Then we get her checked out.
As for her eyes, I believe not all Graves patients get problems with these, however I am not an expert. I had my daughter checked out by her optician but she’s complaining of watery, gritty eyes so I’m going to get her to an opthamologist for a check. ASk you doctor about referring you to someone with experience with Graves or Thyroid Eye disease (TED).
You must be really confused and scared right now, I was too (and still am at times) but there are people here who will be happy to answer any questions no matter how silly you think they may be (chances are one of us has asked the same thing at some time!). My daughter is older than yours,at 17, but we explain her illness to other youngsters by telling them that they have good cells in their body, called white blood cells. It’s their job to fight off anything that gets into the body that might make you ill, a bit like an army. However, some of these cells have gotton a bit confused & think that some of her own cells (thyroid) are invaders so they are attacking them. This is stopping the thyroid cells doing ther job which is to keep all her organs running properly, such as her heart. The medication she is taking is to do the thyoid’s job for it. Maybe this isn’t completely scientifically correct, but it can help kids understand a little of what’s happening.
Hope this helps answer some questions. I’m sure others will give you more advice.
Try not to worry, now you know what’s happening you can deal with it. This is much safer for your daughter than if you didn’t know.
Take care,
W x

[mamabear]

#1071898

Hello and welcome to the forums. I’d like to say thank you so much for getting as much information as you can on this disease. My mom always thought that I didn’t act as I should yet all tests always came back just fine. I’m hyper by nature and can talk your ear off for hours. Turns out I’m just that way to begin with ROFL!!! I wasn’t diagnosed with Graves’ disease till after I had the flu and 3 months later it finally showed up on blood work. I was 27 and trying for child #2. I had to hold off on trying for #2 since it would not have been a good idea to get pregnant and then I had trouble getting pregnant so I had help from both my Endocrinologist and a Reproductive Endocrinologist. (i have a total of 4 children now(14,6,4,2))

It Graves’ disease goes untreated or undetected and therefore untreated yes i guess it could be fatal if your heart is working overtime and there is nothing stopping it and it gets weak with so much stress on it.

It is very scary as an adult to get this disease
It is very scary as a parent to have a child with this disease
AND it is very scary for any child to have this disease.

One thing I have learned having kids and training dogs is that kids and dogs are in one way the same. <—-I put it this way so that parents and clients understand better.
Dogs and kids need their alpha/parent to teach and tell them what to do. A dog needs its owner to give it commands and teach it to do the right things AND to not be afraid of things. That is why we have dogs out there that fear thunderstorms. See at a young puppy age dogs can be taught that thunder and lightening are nothing. as long as the alpha doesn’t fear it then the pup wont fear it. You walk around like you have no care in the world about it and they learn to have the same attitude about it. (I have two german shepherd dogs that sleep through a storm, it’s so awesome!)
As far as kids go it’s the same thing, I taught my kids the same thing about storms. since we had the dogs already trained I decided to do the same with the kids. We call it big booms and thunderstorm parties when we have a storm. The kids love it. Someone asked me why in the world I did that, I said well I didn’t want little kids being scared of something so natural and something so great for our earth. THe kids know that water is great for the earth and know that big booms are everyone in heaven having a great time with bowling. (this is how we explained it).

The moral to this story is, you are scared to death and rightfully so. But dogs and kids are identical in the fact that they KNOW when there is something wrong. They sense it, they smell it in our body odor. Kids know when we have a cold, they know when we are scared or angry just by our scent. Your daughter can sense your fears and she will know it is about her. Be as honest as you can be with her and make her a part of this as well. Her being 10 means that she will have to learn at a young age what her symptoms can be. Keep a log/excel spreadsheet of her lab work so you always have it and don’t have to depend on the dr. to fax it to another dr. if you need to go somewhere else. She can be as involved as you want her to be. TEACH her that you and your husband are strong and that you are going to help her and she will learn that that is what she has to do. She will learn to be a responsible young child and therefore a responsible young adult and then finally a responsible adult when it comes to this disease.

If you read 100 articles you will 100 different things. Many people go out after having something happen to them and write about it, it doesn’t mean they know everything. It also doesn’t mean that just because the person has an MD at the end of their name knows more. Dr’s are still learning about this disease as well and go with what they know, they learn as well when something new comes up. A specialist, someone who is a Pediatric Endocrinologist is someone that would have more knowledge about Graves’ disease in children. Just because an Endocrinologist will see your daughter doesn’t mean that he is a specialist in pediatric patients. I took my son(14) to a Rheumatologist and found out that he saw kids but wasn’t a kid specialist. I was mad but learned an important lesson.(always ask if they see adults and kids or just kids to make it clear what they do).

Your Pediatrician said that he doesn’t know this disease in children so KUDOS to him for being honest and doing the right things for her till you find a specialist for her. He will be able to monitor her levels and give her medicine so she starts to feel better. Remember that even if you find a specialist for her, she should still be seen by her regular dr. for her regular visits and shots (make sure any new Endo has your ped’s information so that he always gets a copy of anything they do for her.) Take the pediatricians phone, address and fax number whenever you go to an appt. for any new Specialist.

This is a time in her life that is only going to get worse…I mean that she will start acting like a little girl that is going to be making a change in her hormones and eventually getting her period and acting like she hates the world. Don’t confuse our normal complainy selves ( ” title=”Very Happy” /> ” title=”Very Happy” /> ) with her Graves’ disease. It’s a fact, we are cranky, PMS’ing girls from the time we are born. Men think that we "get" like that or "become" that way ….wow are they mistaken!!! We are born that way and we just get worse with age ROFL!!! Do your daughter a favor and when she needs to be yelled at, yell at her. Just because she has Graves’ disease doesn’t mean that she wont continue to grow and act like a nasty teenager (at times) and the annoying girlie girl that nature intended. You will learn her symptoms for Graves’ disease and know when she seems "off". You don’t think you will know it right now but you will, your intuition will trigger and you’ll have that moment of Eureka.

My dh and I are very close, we have become best friends throughout our time together. Once we knew I had Graves’ and how I acted (we call it "the crazies") he knew when I went my levels were off. So you being her mom will have no problem eventually get fixed to her symptoms and needs.

I agree that your DH should be there with you for appt’s but more for the fact that he is a man taking the time to be there. Yes I said it just the way you read it. As with school, when a man takes the time to go to a meeting or an appointment people tend to not try to screw around with the wife. Yes it happens, I know this from experience. When I walk into an appt. with my dh I get everything answered and he does too. No one gives me a run around at all. Same when I go into a meeting at school for my oldest son. No one fools around at all which is awesome!
It’s like going to buy a car alone as opposed to going with a man or a man going by himself. It is just the way it is even if we don’t want to admit that people treat women and men differently. So we might as well use that to our advantage.

I was with the very first Endo who said I HAD TO have RAI and there was no way around it. We went to see the radiologist and he said get a 2nd opinion. I saw the Endo and asked him about why I couldn’t try oral medication and he came up with some crap, so i went home with that info. I went with dh the following week and he asked him the same question and the dr. gave us a whole different answer and naturally dh had looked up other info and asked him those questions and the dr. was floored. I was giggling since I was thinking "this husband of mine is my hero" !!! It goes to show that having someone there will help you be strong and he might here something you don’t or he might hear it differently than you do. Team effort means your daughter sees YOU & YOUR DH fighting for her. As a girl she will need to see that in a man. So try to get an appt for dr’s when dh can get to them to.

If you can, can you tell us what her levels are and the ranges that come with it?
have her eyes always looked buldgy, can you get her in to see an eye specialist not just the regular eye dr., this would be just for a future information. Getting a base line eye exam for having Graves’ disease is important and getting it from a specialist would be best. If you trust your eye dr. and they took all the important information than you can stick with that for now. I have an Optometrist and I trust him with my eyes. I have seen him for 9 years and he has known dh much longer than that. He has referred me to a specialist from time to time. He is strict with my eyes and what I do with them(i wear glasses he wont let me wear contacts), and if I have anything weird like itchiness or a scratch I see him asap. He is so trustworthy that I would pay for him out of pocket if he wasn’t in my ins. plan.

Surrounding yourself with dr’s you trust is important. I have taken time to do that and have found good dr.s and stay with them. THey know me and know it is important for me to know results immediately and to be able to get an appt within a days times. (yes I am a pain,but my dr’s know this and respect that).

Your dd’s teacher that has this disease, i would ask to speak to him and find out what he knows and make sure you know where he is coming from so he doesn’t say something that he shouldn’t to your dd. Not saying he would, since he is a teacher I would like to hope that he is cautious about what he says but make a point to see him face to face and talk about this. NOT with your daughter around though.

Your dd’s hair and skin can be effected by this so please ask any questions you wish even if you think they are not related.

More importantly, take a breath and relax. You took her to the dr. and CAUGHT this before it got worse!!! That is something that is so important and knowing what it is, is going to help you fight this the best way you can. You can beat anything as long as you know what you are up against. Knowledge will help you stay strong for your daughter. When you feel like breaking down and crying just come on here and we’ll support you and your dh.

((((((((((((((((((bhouse & family)))))))))))))))))))))

[hyperm]

#1071899

Hi,

I can imagine as a mother myself when you hear anything is wrong with your kids you go into overdrive – its only natural. I was diagnosed at 24 but my sister was diagnosed at 13 and it was worrying for my parents and then when she when in for the op they were worried too. However, she has had a better prognosis than me in all her years of treatment compared to my 4 years.

So deep breath! The internet is a very dangerous thing….the information is very conflicting and also not always written by the professionals. As everyone has pointed out the main issue is that she has been diagnosed and will now have regular blood checks etc.. The endos are aware of all the dangers and know the signs to look out for.

If you look at Emily’s post a while back- we are both similar in nature when it comes to anxiety. So yes when I was first diagnosed (even though my sis had this disease for years) I cried with fear and when I was given a piece of paper with Thyroid storm warning signs I sobbed! Then I read up on the meds and sobbed more! its very frightening and as a mother I can imagine how you are feeling.

You know your daughter so you will be aware when you think things are just not looking right. I had a thyroid storm and for weeks before it I felt awful. My mum repeatedly said to my hubby and my dad "Something is just not right… I don’t like what I am seeing" Even before I was diagnosed 4 years ago she was saying something similar to my aunt. I am 28 but I am still her little girl and her instincts were spot on.

My little boy is 4 and very intuitive he was present when I collapsed at my parents home and it deeply upset him so the best way we could explain how mummy was unwell was that her throat was sick then he stunned us all by saying "is it your thyroid playing up mummy?" I asked my mum how they explained to my sister and basically they just kept it simple and didn’t mention any of the threatening things… They basically explained that was why she was as tired. anxious and wow was she moody with a terrible temper. she is a twin and her twin was excelling at school whereas she was really struggling and my parents had to get extra tuition for her etc.. they were then able to explain that the GD was probably contributing to her lack of concentration and also poor eyesight.

After speaking to my mum and explaining your situation that was her advice, keep it simple and you and your husband can be informed and look out for any complications – baring in mind that it is a low percentage of people who experience any of the threatening complications. Most patients are symptomatic and feel lowsy but eventually the meds kick in and all that settles down.

Hang in there!

M x ” title=”Wink” />

[graves_mom]

#1071900

Hi Becky,

My daughter was diagnoised at age 14. The doctor had been watching her enlarged thyroid for two years. After she was diagnois I read up on the disease and realized all the bad behavior we had been dealing with was actually symptoms. I would often have to re-read the information. It is easy to forget that she is dealing with a hormone/chemical imbalance because she looks fine.

There were a lot of ups and downs and we kept hoping she would get better by the next appointment. In retrospect, I wish we had looked for a more aggressive treatment early on. But we relied on the doctor who didn’t pursue more treatment. We are heading for surgery now (5 years later) and have our fingers crossed. One specialist we consulted stated that practice never has a patient on meds for more than two years. Doctors, like everyone else, have opinions based on their experience, but not necessarily based on all experiences. If things aren’t going well, get a second opinion.

My advice would be to have your daughter see a therapist that is familiar with Grave’s Disease. I once read (it was probably on this site) that if you go to see a psychiatrict because you think your crazy, the first thing they check is your thyroid, because it mimics mental heath disease. It will help her deal with some of her uncontrolled emotions (if she has them). I don’t think everyone gets the psychological issues, but a little therapy never hurt anyone. We are currently seeing a family therapist because my daughter has developed anger and depression. If we had caught it earlier, I’m sure it would have been better.

I’ll keep my fingers crossed for you.
Diane

[hyperm]

#1071901

"My advice would be to have your daughter see a therapist that is familiar with Grave’s Disease. I once read (it was probably on this site) that if you go to see a psychiatrict because you think your crazy, the first thing they check is your thyroid, because it mimics mental heath disease."

I would have to agree strongly with this. My endo actually told me that his secretary (who was a hardy woman) got signed of by her GP as having a complete mental breakdown. He called her at home and said nope don’t accept that diagnosis just yet come in and get your bloods done- he was right!

After my TS as many of you know I really thought I was going off my head my health visitor (as just after a baby) was trying to put it down to PND and I knew it wasn’t. My endo agreed that yes I was going off my flipping head. I know posted this before too but he also told me that my levels were so crazy that if I had committed murder I would have gotten away with it.

Many people don’t know the effect this condition has on your mental health. I am having such bad panic attacks at the moment and can barely get out the house.

From past experience it does start to settle though once the meds kick in. ” title=”Wink” />

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