[bentoboy]

in reply to: RAI for a 10-year old girl? #1072951

Hi Amy, I think I may have given some misleading information. Lily is not in remission, she is stable on two tablets of neomecazole a day (one morning, one at night). So the advice you are giving supports what our doc is saying, but she is not actually in remission as such. I am very interested in side effects of RAI, both physical and emotional. Ski mentioned that ferility is not an issue. These are all the things we have too weigh up and depression is a huge one. We are reading alot of interesting information about childhoods Graves taking several years to stabilize. I just dont want to jump the gun and go through RAI, if it is not completely necessary. That said, the sooner we can take her off medication, the better. Cheers, Irene.

[bentoboy]

in reply to: RAI for a 10-year old girl? #1072948

Thnakyou for your replies and your interest, Ski. Amy and I have now had some emails. This seems to be a very active site! And also very helpful. The angle that I am coming from is that I was grossly overactive with Graves and finally diagnosed when I was brestfeeding my second child. I had 24 hours to wean her and was put on a dose of 6 neomercazole a day. I was able to moniter how I felt and eventually reduced the dosage to nil and remained at normal levels. My aim was to have third and last child:- Lily. I was monitored during pregnancy and all was good, but she presented as over active at birth. That soon stabilized and it was only when she was five years old that the signs of overactivity in her were manifest ie heart rate of 120 at rest etc. So she began with medication, which was swapped to PTU when she was admitted to hospital with a susspected thyroid storm incident. She has just turned ten years and is in remission again. Back on Neomercazole at a dosage of one tablet morning and night. She has been stable since september last year. So in her present state it seems htat she needs these meds to stay relatively normal. This is her third timein remission, if you include her incident at birth.
So the reason for my trying to make contact with others who have been through this is that I know how revolting the medication is. We have been advised that RAI is the most sensible way to go. In Australia, with children, they would irradiate the entire gland so as to avoid cancerous growths. Also, I am not comfortable with surgery as there is risk of nicking para-thyroid glands etc. Taking a tablet is a far less invasive method. So we have come to the cross roads of whether to once again try to reduce the medication to see if she goes into remission again and hopefully stays that way forever. I realise that we would run the risk of it recurring at an inopportune time:- pregnancy, times of stress etc.
I have been told that she will become under active and have to take synthetic thyroxine for life. That is of course better than what she is taking now.
You mentioned that there are no issues with fertility. Are there any other events that may result from RAI? These are the concerns that my husband and I have. Will she be under more physical strain, normal growth etc.
Our endocronologist, who is sensational, is advising we have RAI now, while she is very stable and easier to treat. I suppose I have felt a bit cornered as he has advised that he is on sabbatical for a year as of 1st July 2009. I would definately prefer him to moniter her reactions and be there on hand to give advice. Thankyou for your time, it is much appreciated. Also we have discussed with her and she is ready and willing to have RAI. I am hoping that it is not only the novelty value of being isolated. She does understand the implications of lifelong thyroxine and blood testing. Just wondering if there is anything else we should know? Irene

[bentoboy]

in reply to: RAI VS Surgery #1073040

Hi, I have just joined and want to post a new topic regarding radioactive iodine treatment of my daughter, to this effect:- We are at the stage of needing to make the decision to irradiate our daughters thyroid gland. She has had the condition since the age of five and has been in remission three times. As she has an aggressive presentation of Graves disease, the specialist is recommending irradiation now, before she enters puberty, and all the other issues associated with it.
My plea and mission is to find other parents who have found themselves in this situation. Thoughts? Results? Ideas? Recommendations? It is a crying shame to have to take such a major and irreversible decision, but I am not happy for her to go on taking the neomercazle (Australian brand name for Carb..) I would very much appreciate some feedback. Thanks.
How do I create a new topic?
Or might this just kick things off.
Many thanks from sunny Australia…

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