[carla]

in reply to: Depressed 13 year old #1068592

Thanks Amber lyn, I should have said in my post, that Carla has Graves disease, she was diagnosed on 5 June this year. Hence asking for help from the forum. Thanks for your reply, it is good to know that you understand.

[carla]

in reply to: Gardasil Vaccine and Graves Disease #1069570

On the news on tv last night there was a story about Gardisal vaccine. It came from the states and said that there were 5 deaths from the vaccine in 08, 700 autoimmune diseases diagnosed and 12000 cases of dizziness and fainting and headaches after the vaccine. In West Australia however, they have said not to be concerned. Yeah right. I am sitting right here with a child with an auto immune disease.

[carla]

in reply to: At a crossroad, want your opinion, please. #1068620

Hi Ciona,
Well this is what I was told today…..if your levels cannot be stabilized on medication that is when you need a thyroidectomy because your antibody levels are not sorting themselves out enough for you to come off it. After the amount of time that you have been on the treatment, I would be thinking that you have done the best you can and need some other option now. But, of course, I am just a lay person, it just seems that by all that I have learned about this disease of late, this is the next step for you. We were told 2 – 3 years on the meds is enough time to sort out the levels for good and if by then they are still all over the place, then it is thyroidectomy. All doctors are different and all situations are different, yours will be unique to you, all you learn from this is just fuel for thought really, the final decision is yours and your doctors.

[carla]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070645

Yes, we are very, very lucky, although the 5 weeks wait before a diagnosis seemed like years at the time. I think that the fact that her levels were toxic and I was rung up and told to get her to the hospital in the next town asap because the lab staff and her local doctor were in such a state helped!!!! We then had to wait 2 weeks to see an ophthalmologist and a paediatric endorcinologist. Luckily, very luckily for us, the local paed confers with the endo. guy at every single visit (phone call). My daughter also has weekly blood levels done which include the antibodies and hromaone levels and also liver function tests (because of the high dose steroids she is on). One of the best things that happened for us was that the principal of our school spoke to all the year 8 children in my daughers year group and told them all about Graves disease, Thyroid eye disease and the effect of steroids (weight gain, mood swings, etc.), everyone has been so supportive since then and the horrible comments about big eyes and a fat face all stopped. In fact, we even had some text messages with apologies for some comments that had been a bit harsh before this. Now it is all out in the open, we are learning together and her fellow students don’t hesitate to come and speak to her or I about her condition which is great.

[carla]

in reply to: My 11 year old daughter just diagnosed! #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

[carla]

in reply to: My 11 year old daughter just diagnosed! #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.

[carla]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070642

Hi Worried mum,
my daughter sees a paediactric ophthalmologist once a week, a paediatrician once a week and a paediatric endocrinologist once a month. She has been having all this care since her diagnosis on 2 June 2009. This for us is a huge performance as we don’t even live in the same town as these doctors, but after 2 months, the journey is getting better. She misses every Friday of school now for her Intravenous medication (500 mg Methylprednisolone soon to be 250 mg for the next 6 weeks) and occasional other days when she needs to. Lucky for us, I work at the same school (I teach secondary school maths and science), so I am always there for her, otherwise she would have missed a lot more. What betablocker is your daughter on? My daughter is now on 5 mg propanolol in the morning and 5 mg in the evening, but that is a trial since last week and with todays panic attack during a maths test, I think we will go back to at least the 10 mg in the morning to get her through the day.

[carla]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070640

Hi worried mum,
I to am the mother of a 13 year old daughter who was diagnosed with Graves disease on 3 June this year. My daughter to was having panic attacks, palpitations, rapid heart beat of up to 160 beats and around 130 when asleep. Along with all the thyroid medication, she to was put on a beta blocker which she is still on 2 months later. She was taking 10 mg twice a day, but as of 3 days ago is taking half a tablet twice a day and so far so good. We did try to take her off the betablockers a few weeks ago, but she became very anxious and emotional and descibed it as a feeling of being outside of her body. Isn’t it amazing that our poor daughters have to go through this at such a young age, it is so unfair, I wish it were me and not her, but we are getting there, 3 months in to it now. Keep in contact and let us know how you go. Carla and Val Best

[carla]

in reply to: Intravenous Glucocorticosteroids #1069645

Hi Sue, no way, that is so unfair. Shingles is an awful thing to have. My daughter has had chicken pox and also been vaccinated against it supposedly to stop her from getting shingles, not that it has been proven that that actually will happen mind you. Today I discovered that 155 children from her school were off sick today (out of 700 children), she told me there were only 10 students in her english class of normally 30. The last thing I need is for her to get swine flu. Things are hard enough for her already. She has now had 3 500mg Methyl Prednisone IV treatments, 9 to go. She is also seeing an occulo plastic surgeon on the 19th for a second opinion (as advised by her ophthalmologist). And so the saga continues…………..

[carla]

in reply to: Gardasil Vaccine and Graves Disease #1069564

And you know what the worst thing is, we will never know. We can only surmise and wonder how our beautiful perfect daughters literally woke up one day and their lives were completely different, why why why at such young ages. This is not a disease for teenagers, so why our families. It is so unfair. Everyday my 13 year old looks at her bulging eyes in the mirror, her puffy face from all the steroids, her daily headaches and inability to dance and play sport anymore and says, my life just sucks, I hate my life, why did this have to happen to me, what have I every done to anyone. And you know what, you have to look at her and wonder all that yourself. I wish I had a reason why she has got this, more than anything, I wish I knew why.

[carla]

in reply to: Gardasil Vaccine and Graves Disease #1069561

Hi Kristen,
Yes, I have raised my concern with her paediatrician who basically said what you said, in that it should be reported even if just as a "nice to know" for them. The reason for this is if people keep having epidoses of things happen after the vaccine and they don’t report it, a database will never be formulated for possible connections. As I said before, I am not anti vaccinations, but I do think it suspicious that my daughter has become ill 6 weeks post vaccination. It could have been anything I know, but you know what it is like, we strive for answers and being only 13, there has to be more to this.

[carla]

in reply to: Intravenous Glucocorticosteroids #1069643

My daughter saw her ophthalomogist today, she is in her 3rd week out of 12 weeks of IV Methylprednisolone this week. (still 500g). The ophthalmologist now wants her to see an occuloplastic surgeon for a second opinion on her treatment. She is not a candidate for radiation because of her age, so if the methylpred. treatment doesn’t work, she will have to have an orbital decompression. This (going by this forum), seems quite common place in the states, but here in Australia, treatment is as per the UK, who use the 12 week steroid plan. It will be interesting to see what the surgeon suggests. I myself would like my daughter to finish the full course of IV steroids she was put on and then make an assessment on how things are after that. It makes more sense to me rather than intervening a bit into the course. Meanwhile, get this, my husband was talking to a RN the other day and she said that Graves disease is a simple disease and she can’t understand why such fuss and bother is being made out of our 13 year old having it. OMG I am going to find a doll with her name on it to stick needles into. GRRRRRRRRRRRR

[carla]

in reply to: Intravenous Glucocorticosteroids #1069642

Hi Sue,
OMG that is exactly what happened to my daughter. She to had the bright red face the day after her first 1 gram of Methylpred. She had visitors in the hospital that day and they all thought she was sunburnt. Wierd isn’t it. I told her about the tea, and she said "but I hate tea", typical. If it were me, I would be doing everything and anything, but young girls are a kind unto their own.!!! Apparently the weight gain and puffy face is actually fluid retention. Make sure you drink lots of water, I know it sounds weird, but did you see someones mail that they got a kidney stone and someone else said it flushes out the sodium, so I am making sure she does that at least. The other thing is that you can get a steroid high with this, so feel really happy and have lots of energy and then about 2 days later, you go to a low and get all down and emotional, have you had that to?

[carla]

in reply to: I can’t do this any more – sorry :( #1069254

Maybe you need to take a betablocker if you aren’t on one. My daughter is on carbimazole and thyroxine together and came off the propanolol (beta blocker) for 4 days but had to be put back on it because she got really upset and depressed at school, described the feeling as her body was going into shut down and that she wasn’t herself anymore but a different person in her body, couldn’t concentrate, feeling dizzy. She wouldn’t stop crying. Back on the propanolol and within a day, she was back to her happy, cheerful self. That was 5 days ago and we have had not one "down" day and no tears. How is your pulse going?

[carla]

in reply to: Intravenous Glucocorticosteroids #1069640

Hi Sue, oh you poor thing having to have more iv steroids. My daughter had her second dose of 500mg Methylprenisolone IV yesterday, 10 more weeks/treatment to go. It is very interesting to hear that you are really tired as she has been saying all afternoon that she is so tired, I read her your email and finally she has decided to have a sleep. Just hearing that you were feeling like she is made her feel ok to rest. Thanks for being there, albeit on the other side of the world. (we are in Australia). We are back to the paediatric ophthalmologist on Monday and I am so scared already. It seems that every time we go there it is bad news.
Oh and Rhonda, weight issue, wow, she is so paranoid about her weight anyway, you know what 13 year old girls are like. Now she is freaking that she will get fat (her words) with all these steroids. It feels like this is all about one step forward and 2 steps back all the time, isn’t it.

[Author]

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