Thyroidectomy

[edenpark]

Hello - I';m new to this forum and am seeking some advice as my daughter is scheduled for a Thyroidectomy and I'm worried.


My daughter Alessandra is 4 1/2 and is a rare case of a child with DS that has hyper, rather than hypothyroidism - also referred to as Graves disease. With hyperthyroidism the TSH is low and the T4 and T3 levels are elevated.

She has been on medication (Methimozole) for over two years and it's was unsuccesful in regulating her thyroid and surgery has been presented as the only real option. (Radioactive Iodine is not an option as she is too young, has DS and is still not potty trained)

She'll have hypothyroidism after the surgery and then will take the T4 replacement (synthroid) afterwards for the rest of her life.

Does anyone have any experience with this situation? I'm concerned about her post-surgery state as I have read some troubling accounts of post surgery issues.

Thanks
Rob

[SimplyStar]

Plan to stay with her at the hospital at all times. Have them put a cot in her room so that someone can be there for her at all times. You know your daughter better than they do and will be able to interput her needs to them.  Make sure the surgeon is very competent in this type of surgery.  I am a retired nurse and I know how frustrating hospitals can be.  My son had surgery years ago for a necrotic bowel, I stayed with him the entire time with relief by his brothers and sister. He was on life support for 11 days, I was the one that had to interput for the nurses.  Make them understand that a diaper is necessary, do not let them ignore you and your daughter. Since most DS have a very high pain threshold, make them understand that just because she is not crying in pain, does not mean that she does not feel it.  This will be very traumatic for her, her throat will hurt, swallowing will be difficult.  She will need to be restrained to keep her from pulling IV's, bandages etc off.  this is not cruel, it is necessary.  My son is also on meds for life, Cumadin, a blood thinner.  Since a DS also are very remarkable in the memory department, her meds will just become a part of her life.  I hope you know that the first 48 hours will be a constant watch for you, children heal fast, if she has good comprehesion, explain to her what is going to happen , and then along the way talk to her about what is happening.  If there is a TV in the room, with maybe a VCR, get some of her favorite tapes, bring along some books to read to her. Keep her occupied and let her rest. Everything will be very frightening to her, calm,  steady and positive conversation around her will help ease that tension.  I wish you luck and I know it will all work out fine for her.   Marty

[SimplyStar]

did a little research on this and found a web site about a natural remedy.   gravesremedy.com  My daughter is fighting Ovarian cancer and I use that forum a lot and since I research for her I became quite interested in natural things that most doctors will not use.  Many of these natural things actually do what they are supposed to, some are scams, yes, but this site made sense to me.  My daughter is thriving because of some of the natural suppliments she is using.  Plus the diet change reccomended  by him, makes sense to me.  Please read it and see what you think.