RAI for my daughter

[debbie0413]

My 17 y.o. daughter will be having her RAI on July 6th.  I am a little confused, though.  Many people on this forum say that they have gone to a hospital for a couple of days for this.  The endo clinic that is overseeing this procedure says it is just done on an outpatient basis.  The nuclear medicine dept. will be giving us more detailed instructions, but the endo just mentioned that my daughter needs to be away from crowds for a week after RAI.  I already know that she will have to totally avoid contact with pregnanct women and small children.  Does anyone have experience with RAI as an outpatient?  If so, what kind of instructions did they give you for when you got home?

[DLA]

I wish I would have sent my son to someone at the time.  I lived in the same house with a toddler and was not allowed to touch him! :(  He would scream and scream for me and the whole time I was in the other room.  I know how badly you must miss your daughter, but at least she is old enough to understand and IS having a good time.  My poor little guy was miserable!  It was sooooooooo awful!

My niece has been tested several times for thyroid problems and her levels always come back normal.  She was also in the house with me most of the time, so feel some comforted by that fact.

Hope she gets to come back to you soon.  Am still praying for you!

Dac

[redhed87]

I totally feel the same way about harming my family and pets.  Even though they told me 3 to 4 more days when I got home, I feel like will I ever get comfortable enough to let down my guard.  I have the clorox wipes out cleaning everything I may touch..........don't know if it works, but it makes me feel better.  I had 100 mc for thyca, as standard, but pretty strong dose.My daughter is at camp Aunt Sherry.  She's having fun with her cousin, but I miss her like crazy.  

[DLA]

Thank you, thank you, thank you!!!!!  I had RAI for Graves' 4 1/2 yrs ago and was at home the whole time.  For 2 wks I wasn't allowed to be near my son or anyone else really, but they had assured me that I could be at home and still be safe as long as I slept in another room, didn't hold anyone, go near my child (the hardest part, of coarse) and flushed, flushed, flushed.

This is the THANK YOU part.  Every since I found this site and have read about all of the precautions I have been TERRIFIED that I had done something wrong to my family.  Thankfully now I know I didn't. =)  You cannot believe the relief this has brought to me!!!!  As I said THANK YOU THANK YOU THANK YOU!!!!!!

I will be praying that everything goes well for your daughter and that she finds a quick end to all things thyroid.

Dac

[redhed87]

That's good news as I just had RAI and it was hard for me to be isolated at the hospital for almost 3 days and I'm a grown woman.  I had my treatment for cancer and you would think there was a nuclear spill in my room that way they had the door labeled.  Everyone was turned away- only my hubby was allowed to briefly peep his head in the door and blow me a kiss.  My daughter is staying with my sister and I briefly saw her when I got home from about 6 ft away.  It's not any fun at all........I'm glad she can be home with you.

[debbie0413]

Hey--good news for my daughter.  I called the nuclear med. clinic and found out that my daughter does NOT have to take precautions to the point of staying at a hotel after her RAI.  The nurse explained that my daughter will need to use her own cups, bedding, stay a few feet away from everyone while in the same room with them, and stay away from pregnannt women and little kids, but otherwise she can do her normal routine.  I guess the tips that sans thyroid gave me only apply when the RAI dose is for cancer--which is about 100 times greater than the dose for Graves.  Thanks again, though, becasue now I know how her aftercare will be.

[jackiec01]

oh i am glad that i found this.  i am having an uptake scan done tomorrow.  pending the results i will be having RAI treatment following soon after.  i am 29 and have been TTC for  6 months.  have either of you been in this situation before during or after your testing and treatment?

[debbie0413]

Thank you SO much for your responses!  I am so glad to have some warning about all of this.  I am printing our your comments and will be checking with the nuclear med. clinic ASAP.  I am thinking that I will stay in a hotel with my daughter for 3 days to a week.  We only have one bathroom upstairs, 2 dogs and 2 cats, and lots of bedding that would be difficult to change.  My youngest daughter is 12, so she will be OK during the day by herself, and my husband will be home at night.

My 17 y.o. does NOT have cancer.  It is definitely Graves, because they found the antibodies.  She has been on anti-thyroid meds since Feb. when she was diagnosed.  I did research on this forum and another site:

http://groups.msn.com/GRAVESDISEASEANDRAI/general.msnw?action=get_message&mview=0&ID_Message=28070&LastModified=4675628439970013886

and checked it out with my daughter's endo clinic, and they said it would be fine to have her do RAI.  The methimazole sounded like a waste of time (1 1/2 - 2 years on the pills, then only a 10-15% chance of achieving permanent remission) as well as more dangerous to the liver, immune system, and the thyroid from longer exposure to Graves.

It is SOOO nice to have discussion forums like this.  It's like being able to chat with all the people in a clinic waiting room, but in a non-intrusive way in the comfort of your home.  Thanks again.

[jumptorelease]

oh yeah, my post was titled "post-thyroidectomy" - not "grave's disease" (in case you were curious lol)

best of luck to your daughter.  

oh yeah, she'll be pretty cranky from the RAI - just love and support her and tolerate her through her misery.  it sucks that you can't be close, but my friends/family found that it was safe to hug me and cuddle me (for very short periods of time, mind you) if they fully covered their bodies (ie: jeans, socks, long sleeve shirt w/ gloves or a hoodie)

[jumptorelease]

I did a small dose of RAI before surgery, and 'sans thyroid' pretty much nailed all the details.  I did mine at home, and we were fine with just a separate set of dishes (hand washed with soap and then bleach) and using a separate bathroom.  But it's only me and one other person living in our place, so it kinda cut down on the contact thing.  I used the same blanket and pillows and like three pairs of clothes and washed them like three times afterwards, and have had no residual problems with it.

I'm only 22 and have just been through hell and back with Grave's Disease AND the treatment (I've done the anti-thyroid meds, the RAI, and just had the thyroidectomy a month ago - see my post ("Grave's Disease") for details, if interested), so if your daughter needs support (or a complaining buddy, lol), I'll be on regularly.

[sans thyroid]

I had my first RAI when I was that age and have had three since.  Where to begin... When I had my first RAI it was still done in hospitals, but since then they have determined that it can be adminsitered at the home (mostly due to HMO cut backs, bastards)  Thus, it is your responsibility to make sure everything is safe in your home, making the situation even harder. For my most recent treatment, my doctor suggested staying at a hotel (since I have room mates) She basically can not come into contact with anyone else, their food or where they sleep.  You will get full details from the Nuc Meds Dept but this is my advice/experience.

1. get a cheap matress pad and sheets, because you sweat out the Radiation and have to isolate the items before you wash them/throw them away. So do not use something that she likes/wants to use immediately after the treatment.
2. the most uncomfortable part for me was your saliva glands being affected.  The radiation attacks that area as well and they stop working properly during the treatment.  Get her her favorite sour candy.  They suggest lemon drops, but I they get old fast.
3. She can not be near prego ladies, small children and pets for about a week after this.
4. wrap surran wrap (spelling wrong, sorry) around her cell and house phone so she can talk to people.  Do the same with anything she touches so that you do not have to isolate the items afterwards.
5. Since you are doing it at home, to be safe (and required), she should be isolated from the rest of the family and household...put her in a place where she will be most comfortable.  prefreable with a TV, DVD player and anything that makes her happy.
6. everyone reacts differently.  I got nausea the first day, so when she goes in to swallow the pill, ask them to prescribe anti nausea meds then so you can have them on hand just in case.
7. make sure she is over hydrated, the more water you drink, the faster you flush the radioactive iodine out.
8. I am big on human contact, so it gets lonley, tell her to hang in there.
9. Get plastic utensils, plates and cups, have a trash can where she is for her to dispose of these items.
10. She also needs to be in a place where she has her own bathroom and shower.

I think those are the main issues.  Did she have thyroid cancer??  If she needs to chat, she can always post a question to me.  I was young when this started happening to me and it has now been 10 years and can be very frustrating.