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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)))))))))))))))))))))
WONDERFUL!!!!!!!!!!!!
Now take it easy and try try try to relax a little bit, take your medicine and laugh as much as you can!! I’ll write that on a prescription pad if ya need it
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