[carla]

#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]

#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

[Sue_Conard]

#1069644

Carla: Just wanted to update you on the side effects I experienced from the IV Solumedrol this go around…I now have the SHINGLES. OH YEAH!! Thought you’d like to know how it’s lowered my immune system…hope your daughter is doing well with her treatment. Let me know when you find the doll so I can stick a few pins in the thyroid area for that RN…whoever your husband was talking to about this disease doesn’t have enough experience for good judgement…those of us that have GD have more first hand experience than she’ll ever endure…ignorance is bliss (just my theory) HA!!

[carla]

#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…………..

[Sue_Conard]

#1069646

Yep Carla…does seem unfair, doesn’t it? Life isn’t fair and so we keep muddling through what we need to do, that’s for sure…the IV Glucocorticosteroids may lower your daughter’s immune system so I hope she doesn’t pick up another illness from the other children. Remind her to wash, wash, wash her hands!! Please let me know how she does…

[Author]

Posts