# Hi--My 11yr old is newly diagnosed...



## AngeInBoston

Hi All,

After a year of confusing symptoms and missing most of her school since September started, my 11yr old daughter has finally just been diagnosed with _"All Indications Are"_ Graves Disease. I'm Hypothyroid myself, but this is so totally different I'm blown away. I've been trying to learn all I can, but it's so overwhelming. I'm happy I found this Board, because boards have helped me so much in the past with other things. Unfortunately, I don't see anyone on here talking about Pediatric Graves? Any parents out there? From what I read there can be alot of differences in symptoms and treatment, but then again I don't really know anything!

When I see the list of like 50 symptoms of GD, I can check off SO many, and I wonder WHY it took so long for it to be diagnosed....I tried to keep telling so many of them to each Dr. and Nurse I saw over the year, but she never had blood tested til last week. When Thyroid came back WAY elevated (sorry I don't know the #'s), they immediately sent me to see an Endo at Boston Children's Hospital, so I'm confident she's in good hands. She's been put on Atenolol for racing heart, and Methimizole for Anti-Thyroid, and we'll go back in 4 weeks for another blood test. The medicine is making her very light headed.

Her Middle School kept pressuring me to send her back, but the Endo's Nurse told me to demand a tutor and have the Principal call her. She is in so much pain with stomach cramps, diarrhea, headache she can't go to school. She used to be a nationally ranked competitive rock climber, and when she gave it up in December I knew something was really wrong. All her muscles are gone and she has no energy...and I've read they might never come back?? I'm also scared about the possibility of infertility and even cancer...I know I should ask the Dr. but since you are here I thought I'd see what you say?

Also, she's having very high anxiety, and swears she has seen a boy ghost dressed in colonial clothing standing in the bathtub watching her sometimes when she goes. (I never should have let her and her big sis get that Ouija Board!!) Anyone else have hallucinations with their anxiety?

Thank you for any advice!
~Ange


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## Debbie from Milwaukee

Ange:
Wow, I can feel the pain you are going through for and with your daughter! I also am a parent of a daughter who was diagnosed with Grave's disease. The diagnosis came 3 years ago when my middle daughter was 17. Here is the brief synopsis: took her to a psychiatrist (a very ineffective one) when she was hit with social anxiety so bad that she couldn't attend school. We got the diagnosis because I pushed for our family doc to test for thyroid (because oldest daughter, her dad, and I are all hypothyroid). My daughter was treated with irradiated iodine & 1 year later she was declared to have a balanced thyroid with thyroid replacement (levothyroxine). About 6 months ago my daughter started having mental health problems and spent time in 4 psychiatric hospitals over 3 months time. Some of these problems may be related to her thyroid, but the physical picture is not clear to me because of interruptions in care and my daughter now wanting to take care of her care on her own. If you want to read more background on all of this, you can click on my name and read some of my posts.

This is a lot for both you and your daughter to absorb all at once. It is extremely important that both your daughter and you feel comfortable with her doctor and can ask lots of questions. One REALLY important thing: get your daughter's doctor to write a prescription for NO GYM class if the doc feels this would be dangerous for your daughter's heart. Grave's disease can stress the heart so much that even a young person can have heart problems with it. Also, there is a way to ask the school to come up with a Section 504 plan for her schooling. You can private message me and I can explain more about it (since I worked for 15 years as a middle & elementary school counselor).

There is LOTS to this disorder, but hopefully your daughter IS in good hands with an endo doc at a children's hospital in a major city. People on this forum can point you toward links to read up on the basics of this disorder, all of the definitive diagnostic tests, and the options for treatment. Folks in this group are TERRIFIC with emotional support, which is more than half of the battle with this condition. Kudos to you for fighting for your daughter...we'll hope and pray that she is on her way to improved health!


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## AngeInBoston

Dear Debbie,

Thank you so much for replying so quickly! Her Endo DID write her a note excusing her from Phys Ed, and told us she shouldn't be exerting herself (which she naturally hasn't been doing anyway, but I didn't understand how dangerous it was and let her go scootering with a friend because she felt pressured to over the weekend...no more!) She was such an amazing athlete before it breaks my heart this could permanently change that, but I want her to get as healthy as possible...I have so much to learn!

I had a meeting with the Principal and the Nurse, and they had mentioned the 504 but I didn't know what it meant...also the Principal keeps wanting documentation from Drs so she doesn't have to file a CHINS report with the state...like I'm a neglectful mom just not sending her child to school. Luckily that morning I'd spoken with the Endo Nurse so I told the Principal that the Nurse told me she needed a Tutor, and that got them jumping. She should have had one weeks ago, she's missed so much, but we didn't have the diagnosis til this Monday. All of September we thought it was a really bad case of constipation that then turned into a bad case of the Big D. Even the Pediatrician (not her real one) who saw her for the constipation and kept telling me to send her back to school (she hated him because she knew he didn't believe how much pain she was in!) called to apologize when the blood test came back showing the extreme Hyperthyroid.

She's always been an emotional girl, never really grew out of tantrums completely, but around January she started throwing off the wall tantrums, getting violent, her bedroom door frame is broken from all the slamming! I finally took her to an ER one night even though I felt stupid for bringing a tantruming kid to the ER, but they did a Psych workup on her and told me to bring her to a child Psychiatrist and Therapy, so we have been doing that all year too. Now I've discovered that "Graves Rages" are what I've had the pleasure of experiencing! Why didn't the nice grandfatherly child Psychiatrist (who did help, I think), have an inkling of this?? Aaaaaaarrrrrrgh, it's so frustrating!

Question for you...sorry to be naive, but when you do the Radioactive medicine, does that completely kill the Thyroid? Is it similar to Cancer Radiation, with side effects? I don't really want to think about doing either that or the surgery to remove, but I guess I'm just in naive denial right now....the Dr. didn't want to overwhelm me so she just gave me the two meds and said that was aggressive treatment to try to get her Thyroid under control and into remission..............???

Oh I have so much to learn, and I also really relate to the other poster's thread about friends and family not relating and not taking it like it's any big deal.....it's a HUGE DEAL to me, yet I don't want to scare my daughter either.

Anyway, thank you, I'm sure we'll talk again 
~Ange


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## Guest

Just wanted to say Hi! And to let you kow that I am so sorry to hear about your daughter! I am hypo, etc., etc. so I do not know alot about Graves, except for what I read here. I just know that any type of thyroid problem can really mess with your whole system (mind&body).

My thoughts and prayers are with you, your daughter and family. Hope that things improve for you all soon.

Hugs & Blessings to You All!


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## midgetmaid

Debbie, I'm so sorry for what you and your daughter are going through. While I don't have a child with Grave's, two of my sons have hemophilia, and one of those was diagnosed with type I diabetes at the age of 11, so I understand what it's like to have children with serious health issues. It's normal to grieve for what your daughter has lost. Allow yourself to go through that process, but also look to the future with hope. My son is 24, was married last Saturday, and is in Fiji on his honeymoon right now.

I'll be praying for you both!

Renee


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## Andros

AngeInBoston said:


> Hi All,
> 
> After a year of confusing symptoms and missing most of her school since September started, my 11yr old daughter has finally just been diagnosed with _"All Indications Are"_ Graves Disease. I'm Hypothyroid myself, but this is so totally different I'm blown away. I've been trying to learn all I can, but it's so overwhelming. I'm happy I found this Board, because boards have helped me so much in the past with other things. Unfortunately, I don't see anyone on here talking about Pediatric Graves? Any parents out there? From what I read there can be alot of differences in symptoms and treatment, but then again I don't really know anything!
> 
> When I see the list of like 50 symptoms of GD, I can check off SO many, and I wonder WHY it took so long for it to be diagnosed....I tried to keep telling so many of them to each Dr. and Nurse I saw over the year, but she never had blood tested til last week. When Thyroid came back WAY elevated (sorry I don't know the #'s), they immediately sent me to see an Endo at Boston Children's Hospital, so I'm confident she's in good hands. She's been put on Atenolol for racing heart, and Methimizole for Anti-Thyroid, and we'll go back in 4 weeks for another blood test. The medicine is making her very light headed.
> 
> Her Middle School kept pressuring me to send her back, but the Endo's Nurse told me to demand a tutor and have the Principal call her. She is in so much pain with stomach cramps, diarrhea, headache she can't go to school. She used to be a nationally ranked competitive rock climber, and when she gave it up in December I knew something was really wrong. All her muscles are gone and she has no energy...and I've read they might never come back?? I'm also scared about the possibility of infertility and even cancer...I know I should ask the Dr. but since you are here I thought I'd see what you say?
> 
> Also, she's having very high anxiety, and swears she has seen a boy ghost dressed in colonial clothing standing in the bathtub watching her sometimes when she goes. (I never should have let her and her big sis get that Ouija Board!!) Anyone else have hallucinations with their anxiety?
> 
> Thank you for any advice!
> ~Ange


Hi Ange!!! Welcome to the board. No one could do better than Debbie re answering your post and offering help. She has been through it w/her own daughter.

So, I just want to welcome you and offer you this site which may be helpful.

This is a pediatric chapter and the site is credible.

http://www.thyroidmanager.org/Chapter15/15-frame.htm


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## greatdanes

Sorry to hear this. My son was dx with type 1 diabetes when he was just 3 yro. He is now 8, so trust me, I know how you feel!! I'd suggest getting a blood pressure monitor with her being on a beta blocker. If she is dizzy afer taking her meds, you want to rule how low blood pressure. I responded to the meds in 3 weeks and had to stop taking both meds due to low blood pressure. However you are dealing with a teen who is already hormonal, for this reason teens always seem harder to predict. From the stories I've read it sounds that their symptoms are more extreme as well! There are some success stories out there. I recently read one from a 21 yro who had symptoms worse than your daughter. He had RAI and says he feels like a much different person. There's a lot of contoversy surrounding Rai but it works for some people. There have been several reports of people having to get it done 2-3 times bc the first dosages weren't enough or the cells regenerate. If her labs don't stabilize over a years time you may have to make a decision that she have a TT (surgically removed) or RAI. If it were my child I'd personally go with surgery. Let's think positive though and hope that the meds can kick her into remission!


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## Debbie from Milwaukee

Ange:

It's great that you are there for your daughter now. Even though she is still suffering symptoms, I hope it is some consolation for both of you that she DOES have a real, physical disorder that creates somatic and psychological havoc . Again, kudos to you for continuing to fight for doctors to recognize that something serious was amiss. There is also a lot of hope that in time your daughter's thyroid will be either tamed (with anti-thyroid meds) or killed (RAI or surgery) and she can live a full and normal life again.

Keep in mind that Grave's disease is an autoimmune disorder, which means that physical and/or stress events (i.e., minor surgery, immunizations, sickness from a virus, major female hormone activity, etc.) can kick-start severe symptoms. I firmly believe that although my daughter probably suffered from a low level of Grave's her entire life, having adenoid surgery in the summer before her junior year of high school likely accelerated her Grave's. Many people on this forum point out that they or others they know suffer from other autoimmune conditions such as celiac disease, arthritis, diabetes, etc.. Since your daughter has fairly severe GI complaints, I would ask your daughter's pediatric endo doc to be on the alert for co-existing conditions such as celiac disease or Crohn's disease.

RE: your question about RAI, it is my understanding that RAI is different from radiation for cancer because radiation is delivered in an iodine pill/solution, so it goes directly to the thyroid. Although you can gather info. about this and the 2 other main treatments (anti-thyroid meds and surgery), I think the most helpful advice I can give you NOW is to focus on asking docs for a very thorough diagnosis (or diagnoses) as well as educate yourself and your daughter on the basics of Grave's disease. I now understand that my daughter SHOULD have been given a radiation uptake scan as part of the diagnostic procedure, but that was skipped. I think she still has some significant thyroid tissue left, and perhaps she was not given a large enough dose of RAI.

Also, when you communicate with your daughter's doc's office, ask for a paper copy of the blood test results and post them here for comments from folks. Other people can chime in about the importance of the radiation uptake scan for difinitive diagnosis. As long as they are looking at antibodies for Grave's, ask the doc to test for Hashimoto's as well (Grave's antibodies cause the thyroid to overproduce thyroid hormone, and Hashimoto's destroys the thyroid). Some people can have both conditions going on at the same time, and some people (like I suspect with my daughter) can have Grave's active at one point and have Hashimoto's causing problems later.

My best to you and your daughter as you navigate these very stormy waters. Thyroid disease is EXTREMELY complex, and many ordinary docs are simply ignorant of all the implications of the disorders. After all, medical students study just about every medical rotation EXCEPT endocrinology...


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## paysmom

Ange:

My daughter is 13yrs.old and was diagnosed last week. I took her to the doctor for a severe sore throat, no strep. Thats when the doctor decided to do a blood test. The doctor told us she suspected Graves'. She called me that night and confirmed, the next day she had us at Endo's office. She is on the same meds. I know that blown away feeling, still there and doing a lot of reading. My daughter also has exophthalmos in her right eye and has become extremely self conscious. She wishes she had someone her own age to talk to about this who understands. How is your daughter handling this?


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## AngeInBoston

Thank you everyone for all the support and advice! I will continue to research and post here now that I feel like I have people who understand!

Thank you!!
Ange


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## AngeInBoston

Hi PaysMom,

Thanks for writing to me, I'm sorry about your daughter too! I don't know how much detail to go into with my daughter, she knows some, but then I haven't gotten into too many of the 'maybes' about what could happen in the future, so right now we're just concentrating on the 'NOW' and how she's feeling on a moment to moment basis. I don't want to scare her like I'm scared about so many things, so I guess I'm taking a wait and see attitude and telling her things on a need-to-know basis.

Good Luck, it's good to have another friend here! 
~Ange


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## MyLilButterfly

I am sooo glad to have found this website! My 10 year old daughter was just diagnosed with hyper thyroid - Graves disease this March! It took a scooter accident and trip to ER for a doctor to diagnose her. We'd noticed she'd been having some bulginess in her eyes, but weren't sure what to make of it. The dr. in the ER noticed it and requested blood tests. Sure enough, she was right and I got a phone call that evening about my daughter needing to get in to see an Endocrinologist ASAP. We had our first appointment not even 2 weeks later. She had both arms broken, so poor baby went through ALOT those first couple months.
I homeschool all my 3 kids. My oldest being autistic had major problems in public school, stress just mounting and there was no end to the drama. So, we took our time to make this decision and it turns out, my daughter is MORE than glad to be able to take it easy and do her school work at home.  She's on Tapazole right now. 5 mg, once a day. She was on Propanol for the first month and has since been off of it. She's improved in so many ways! Last winter she rarely kept her sweater on. It gets cold here in Canada! She'd always say she's too warm. And constantly clearing her throat! She'd also beat her brothers in racing across the yard. She practically flew, effortlessly. When we went for walks, she was waaaay up ahead the rest of us. Since she's been on the meds, she's slowed down, cooled down and doesn't seem quite so scatterbrained. She's thinking before she's doing. For a while I almost wondered if she was ADHD. Nope, just turns out it's Graves disease. She's still emotional and sensitive to moods and such. Her brothers picked on her and boy, did she get mad!

As far as I know, my thyroid is normal, but my mom and my older sister have low-functioning thyroids. My husband's thyroid is normal, but not clear at all about history in his family.

It's been quite a journey! A very interesting one and we're still learning as we go. Had a blood test earlier this month and due for another test in a couple weeks, then another Endo appointment the end of next month. We're hoping for GOOD numbers!

I'm also very happy to see other moms here! It's been tough trying to find people who have an idea as to what you might be going through. Mom talks about low thyroid, but I keep telling her my daughter is the exact opposite! lol

Looking forward to reading more posts here!


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## Andros

MyLilButterfly said:


> I am sooo glad to have found this website! My 10 year old daughter was just diagnosed with hyper thyroid - Graves disease this March! It took a scooter accident and trip to ER for a doctor to diagnose her. We'd noticed she'd been having some bulginess in her eyes, but weren't sure what to make of it. The dr. in the ER noticed it and requested blood tests. Sure enough, she was right and I got a phone call that evening about my daughter needing to get in to see an Endocrinologist ASAP. We had our first appointment not even 2 weeks later. She had both arms broken, so poor baby went through ALOT those first couple months.
> I homeschool all my 3 kids. My oldest being autistic had major problems in public school, stress just mounting and there was no end to the drama. So, we took our time to make this decision and it turns out, my daughter is MORE than glad to be able to take it easy and do her school work at home.  She's on Tapazole right now. 5 mg, once a day. She was on Propanol for the first month and has since been off of it. She's improved in so many ways! Last winter she rarely kept her sweater on. It gets cold here in Canada! She'd always say she's too warm. And constantly clearing her throat! She'd also beat her brothers in racing across the yard. She practically flew, effortlessly. When we went for walks, she was waaaay up ahead the rest of us. Since she's been on the meds, she's slowed down, cooled down and doesn't seem quite so scatterbrained. She's thinking before she's doing. For a while I almost wondered if she was ADHD. Nope, just turns out it's Graves disease. She's still emotional and sensitive to moods and such. Her brothers picked on her and boy, did she get mad!
> 
> As far as I know, my thyroid is normal, but my mom and my older sister have low-functioning thyroids. My husband's thyroid is normal, but not clear at all about history in his family.
> 
> It's been quite a journey! A very interesting one and we're still learning as we go. Had a blood test earlier this month and due for another test in a couple weeks, then another Endo appointment the end of next month. We're hoping for GOOD numbers!
> 
> I'm also very happy to see other moms here! It's been tough trying to find people who have an idea as to what you might be going through. Mom talks about low thyroid, but I keep telling her my daughter is the exact opposite! lol
> 
> Looking forward to reading more posts here!


Welcome and thank you for your lovely post. It will help other moms, dads and their children.................... a lot.


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## AngeInBoston

Hi Butterfly!

I'm so glad your daughter is feeling better, it gives me hope that there is light at the end of this tunnel! I took my daughter in to the pediatrician for an Urgent Care appt today because her stomach cramps and headaches are getting so bad, along with the constant diarrhea. They sent me home with a test to get a sample and retun..... Big fun, my daughter is totally refusing to participate! The Dr also suggested we stop dairy products for two weeks, in case her lactase has been burned off the lining of her pipes, to give it time to grow back (???).

She also prescribed Pro-biotics saying they might help her digestion, but for some reason my gut instinct is really leery (maybe because the term probiotics sounds like quackery made up for makeup commercials) so I haven't filled it yet. Has anyone else used them?

Talk soon, and good luck!
~Ange


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## MyLilButterfly

Hey Ange,
Sorry to hear your daughter's not feeling so well. The probiotics should help with digestion and ease up on stomach pains and diarrhea. Does your daughter eat yogurt? You can probably mix the probiotics in with her yogurt.

Hope she feels better soon! Hang in there!


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## AngeInBoston

Thanks Butterfly, I guess I'll have to break down and get the Probiotics! They're not covered by insurance because they're over the counter, and our budget has been totally blown by all of the unexpected Dr. appts and ER visits for my husband, who's had a 6 week Migraine, between the two of them we've had to get SO many prescriptions and such....but I want my Baby out of pain so I'll heed your advice. None of us can bear eating yogurt, so I'll have to figure something else out.

Talk soon,
~Ange


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## Debbie from Milwaukee

Ange:
I think either your daughter's pediatrician or the endo doc should refer her for a workup with a pediatric GI physician. These GI and headache complaints sound like they may be caused by something other than the Grave's disease. Has any doctor suggested looking for some environmental cause, since both your husband and daughter have recent headaches?

There are some people who have found good success for autimmune symptoms as well as GI problems from avoiding gluten in their diet. Perhaps some other people who have experience with this could chime in on this idea. I think there are ways to do it so it doesn't run into huge extra bills or inconvenience.

Hope all these family illness start slowing down SOON. Be sure to watch out for yourself, as well. Recently I started feeling something like "Grave's rage" when I was stressed. Sure enough, my doctor tells me that she sees some early evidence of thyroid antibodies forming and wants to check me every 3 months or so.


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## MyLilButterfly

Debbie from Milwaukee said:


> Hope all these family illness start slowing down SOON. Be sure to watch out for yourself, as well. Recently I started feeling something like "Grave's rage" when I was stressed. Sure enough, my doctor tells me that she sees some early evidence of thyroid antibodies forming and wants to check me every 3 months or so.


It's funny you should say that! Just yesterday I was saying to my husband that I must be having "sympathy symptoms" for my daughter because I keep reading about Graves disease and trying to absorb as much information that I almost feel like I'm reading about MYSELF! My daughter and I do have a lot of similarities and I'm thinking of getting myself in for a blood check early next month. You never know what it might reveal! I'm hoping it's just a mind over matter issue, though.

BTW: I've never seen a thyroid smilie before! LOL! explode


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## Laura Malley

Hi my 9-yr old just got diagnosed last week. We are starting Methimazole tonight and she has been on Atenalol for the past 5 days, while we were decideing on the medication route or RAI treatment. I, too, was frustrated that I have been complaining about all of these symptoms to the pediatrician for the past 6 months, but she never put it together, until 2 weeks ago when she noticed the weakness in her muscles. My daughter has a HUGe appetite, but has thinned down a lot in the past year, she was having ADD symptoms in class all of last year, to the point that I was considering holding her back this year, her muscle tone is horrible, and despite being in gymnastics for 3 years, never seemed to progress much. She also had some bed wetting incidents and has also been very emotional.

I am enjoying this forum and reading about other moms going through the same thing. I am hoping to be able to come here for support from moms going through the same thing. Everyone seems so knowledgeable and helpful.

Thank you for posting. It looks like we have a long road ahead of us. Part of my distress is I feel so guilty. There were days I would become so frustrated with her regarding homework or her clumsiness or her seemingly lack of effort in every area of her life. I now know there is a medical reason for all of this and I feel so guilty.

Well thanks for listening. Hope all is getting better with your daughter.
Laura


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## Andros

Laura Malley said:


> Hi my 9-yr old just got diagnosed last week. We are starting Methimazole tonight and she has been on Atenalol for the past 5 days, while we were decideing on the medication route or RAI treatment. I, too, was frustrated that I have been complaining about all of these symptoms to the pediatrician for the past 6 months, but she never put it together, until 2 weeks ago when she noticed the weakness in her muscles. My daughter has a HUGe appetite, but has thinned down a lot in the past year, she was having ADD symptoms in class all of last year, to the point that I was considering holding her back this year, her muscle tone is horrible, and despite being in gymnastics for 3 years, never seemed to progress much. She also had some bed wetting incidents and has also been very emotional.
> 
> I am enjoying this forum and reading about other moms going through the same thing. I am hoping to be able to come here for support from moms going through the same thing. Everyone seems so knowledgeable and helpful.
> 
> Thank you for posting. It looks like we have a long road ahead of us. Part of my distress is I feel so guilty. There were days I would become so frustrated with her regarding homework or her clumsiness or her seemingly lack of effort in every area of her life. I now know there is a medical reason for all of this and I feel so guilty.
> 
> Well thanks for listening. Hope all is getting better with your daughter.
> Laura


Laura; welcome and sorry to hear about your daughter. I hope you will find as I do........................; that we have a lovely, very supportive and informed group here.


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## AngeInBoston

Hi Laura! Welcome to the Board!

I'm sorry to hear about your daughter, but you've found the right place to talk to others in the same boat, I'm sure glad I have found it, even though it's mostly adults. You and I share very similar experiences, and you put the pieces of the puzzle together faster.

I've told my therapist how guilty I felt over things like being angry at her for her raging tantrums, losing all interest in exercising and letting her beautiful muscles go, and her trouble with memorizing math skills, when it turns out they were all symptoms of Graves. She assured me NOT to feel guilty but instead to feel proud that I knew something was wrong and kept taking her to the Dr. for all the mystery stomach aches, and that I would tell everyone I came across all the other things I could think of too. I feel guilty I didn't demand a blood test, but I didn't know I should, and I try not to be too angry at everyone I saw who didn't think to order a blood test either. Just be happy that it was finally ordered, and now we can work on getting her better.

My daughter is still out of school, but has a tutor coming to the house now (paid for by the town), so she's caught up in schoolwork. I don't know how much longer she'll be out. Is your daughter in or out of school?

Also, you mentioned that you're deciding between medication and RAI, so your Dr. is already suggesting this? I asked the Endocrinologist about it at our first visit a few weeks ago, but she didn't want to talk about it yet...wanted to see how a month on the Meth and Atenolol worked. We go back next week for next visit, I will ask then. A blood test last week showed her levels were heading in the right direction. I'm still waiting to find out if they found anything in her stool sample as to why her stomach is in constant agony, now changed from diahhrea to almost constipation again.

I'm also wondering if she can get a Flu Shot? It seems like she should because her immune system is compromised?

Talk soon,
Ange


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