[carla]

#1068631

I have a 13 year old with Graves, diagnosed on 2 June this year. Her thyroid was ablated using carbimazole 10 mg three times a day. As of last week, all her levels are normal again and she is now on 100 mg thyroxine, 7.5 mg carbimazole 3 times a day and propanolol 5 mg twice a day. At her initial diagnosis, her blood levels were at toxic level and to high to record the upper level. It has taken 2 months since the diagnosis (3 months since onset of symptoms), but we have done it and she went back to dancing this week and survived a whole 2 hour lesson. Yee ha. My daughters paediatric endocrinologist told us that he wouldn’t remove her thyroid gland until she was about 16 and that she could be fully controlled with the medication if she 100 % complies with taking it and misses no doses, which is what we have done and have the benefits. I know of another child here in Perth, same age, who has had to have hers removed because she kept missing her thyroid meds. It has been a tough 3 months for us, I honestly thought she was dying or had cancer until we finally worked it all out, I know how you feel, it is so unfair and why are all our little girls getting this anyway, it is an adults disease.. All the best and let us know how you are going.

[ASimmons]

#1019041

My daugheter 11 year old was diagnosed 4 weeks ago. She was hospitalized and placed on Methimazole 10mg three times a day and Propranolol 10mg three times a day. We had a horrible week. She developed severe joint pain where she was unable to walk. The pain has moved to different joints, jaw ,shoulder, hip, ect. She saw her pediatric endo. at Arkansas Childrens and stopped the Methimazole and recommended ablation yesterday. However, they don’t do this that often and recommened we go out of state. Where do we go?? Some places where suggested Texas Childrens in Houston, Dallas Childrens or Kansas City Kansas. We are willing to go ANYWHERE! Does anyone have any suggestions? Please help. Thanks Mom! Angela

[npatterson]

#1068632

I copied and pasted your post and sent it to three doctors. They are going to need more information, like TSH levels, etc.

Are you from Arkansas How flexible are you with traveling? Did the endo really talk to you? Send me an e-mail at "nancyngdf@bellsouth.net" and Iwill send you a really good bulletin about students and Graves’. It won’t answer THIS question, but will be really useful to you in many other ways.

We will have a pediatric endo at the conference in Charlotte, NC Oct 16-18th. If there is ANY WAY…COME and bring your daughter.

[ASimmons]

#1068633

Thanks Nancy!! Yes the ped. endo MD admitted her 7-15 and we had a follow up appointment yesterday at Arkansas Childrens Hospital. We are willing to travel anywhere. I am concerned now that she is coming off the Methimazole and waiting on where we are referred to. Her initial TSH 0 and T4 I think 28. Thanks for taking the time to respond. It is overwhelming to know where my 11 year old daughter needs to be treated.
Angela

[WorriedMum]

#1068634

Hi Angela
I am very sorry to hear about your daughter’s suffering and I wish you all the best in her treatment, I empathise completely.
I don’t know what ablation is, could someone explain to me?
Thanks,
Dawn

[npatterson]

#1068635

One doctor got right back with me. He says all you have listed are good, and adds: Univ Iowa (closest), Yale, Mass General, and here at Johns Hopkins.

[carla]

#1068636

Hi Nancy, can you please send me the students and Graves disease bulletin to please (I have a 13 year old with the disease). valbest@westnet.com.au

[Ski]

#1068637

Hi WorriedMum,

Ablation is total removal of the gland, either through RAI or thyroidectomy. The post earlier referring to "ablation through carbimazole" is a bit misleading, because carbimazole (U.S. tapazole) is a medication used to control thyroid hormone levels through a hyperthyroid episode ~ it doesn’t actually destroy or remove the gland, just gets the patient back to normal levels, in most cases, given compliance with taking meds and good response to the medication.

I feel for those of you making these types of decisions for your youngsters ~ it’s hard enough when we’re making the decision for ourselves! Luckily, your children are old enough to understand what’s going on and what the future consequences are, so I would recommend letting them in on EVERYTHING and giving them the power to choose. It can make a world of difference in recovery, having a patient who is fully "on board" with the decisions that are being made.

Hope that helps!

[WorriedMum]

#1068638

Thanks Ski, that does help. I also appreciate what you say about being completely up front with our children and I quite agree, although one of the doctors has talked to me in private about the necessity for certain tests because of the risks of cancer and to be quite honest, I am actually hestitant to bring this up with my daughter. In general, the doctors are fantastic about explaining everything to Emily in ways that she can understand (probably better than I can understand, since it’s all in Spanish!) But it is very hard on her because although she can understand what is going on, at 13 years, she really wants to be fitting in with her friends and she doesn’t appreciate being made to feel different in any way. She finds her attacks especially embarrassing, particularly when they occur at school. At this point in time, I think Emily would probably agree to any treatment that would stop her feeling ill, although I don’t think she has really appreciated the full implications of an operation. I must say that the scarring worries me, although I realise that that is superficial in relation to other considerations.
Thanks once again,
Dawn

[Ski]

#1068639

Fitting in is SO important at 13 ~ we can forget how critical that seems to one so young, but it can truly feel like the world is crashing down when there’s no control, and she feels "different." I wish we could wave a magic wand and help her avoid all of these symptoms. I would agree with your hesitation to break the news about what exactly the doctor is testing for ~ the "what if" element can be really frightening, and it would make sense to just tell her the doctor needs more information, and cross the bridge of "what IS" if it really IS.

ATDs can be extremely tough to use to manage levels, and it takes an incredible vigilance over lifestyle habits, as well as compliance with the meds, and fairly regular blood tests. While it may seem "extreme" to remove the gland, it is a perfectly viable option and *MAY* return your daughter’s health faster, just because it requires less action on her part. Typically the scarring is VERY minimal with surgery, and the surgeon aims for a "natural fold" in the neck to minimize the appearance even more.

You sound as if you have a very good idea of where your daughter stands with this, so I would recommend that heart-to-heart discussion, pointing out CLEARLY that you feel she may be grasping for something just because SHE thinks it’s the fastest, without having thought through everything. Everything takes a little while, nothing is instantaneous, and all treatments require SOME action on her part, so try to calm her and get a real discussion going. Hopefully you’ll come away with a decision you both like.

[WorriedMum]

#1068640

Thank you Ski, sorry I haven’t replied before. Yes, I think you’re right, we need to do some more talking. We have been trying to deal with the here and now in the last few days rather than thinking about the long term as Emily has started having hyperventilation attacks again and seems to be having quite severe chest pain, despite the fact that we increased her beta blockers back to the original levels that worked previously. When we have got over this hurdle, we need to think about the whole picture. Could you just tell me what ATDs are?
Many thanks again,
Dawn

[Ski]

#1068641

Sure ~ ATDs are the anti-thyroid drugs, in the U.S. either methimazole (which is generic for Tapazole) or PTU (which is short for Propylthiouracil). These both act to reduce thyroid hormone, in slightly different ways. Both carry some risk of side effects, which you should take a look at, and PTU has recently been removed from the "preferred" list for children, so that would be something to talk with the doctor about.

[smnm96]

#1068642

Hi,
This is my first time doing this so I am not sure if I am doing this properly. My 8 year old daughter was diagnosed with Graves in Oct of this year. She has been on Tapazole since then. She did go very hypo but with med adjustments in July her numbers were ok. She is only on 5 mg daily. Her behavior is so erratic. She has constant mood swings, yelling outbursts, constantly yelling out the same phrase"My name is Alex", always complains how hot she is and has a big appetite. Even though her tsh is in range her behaviors are still not in good control. I am having a hard time to know if this is from the Graves or if it is just due to poor behavior. I do not know how to discipline her. I try to talk to her but she starts screaming and covering her ears. Does anyoneone know any specialists that could help me out. Her behavior is disruptive to the entire family and I want to help her in the best way possible. Help please!
Nicole

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