Hi Annie...I am so glad to hear from you and yes I am doing great. I will try to post in another thread to let people know what has helped me.
How are you? I hope you are doing great and am so proud of you still helping people. You are right up there with MrsD, Anne and Cara from Glutenfree and Beyond...all angels in disguise!
Dad is planning to meet with doctor without mom and ask for all bloodwork and test results...then email to me so I can chart.
Answers to your questions:
1. Infusions are IVIG
2. B12 yes wondering what her level is and if she is absorbing. She is adding B12 2200 mcg to her feedings. Are her intestines absorbing the nutritional liquids she is tubing? She is only getting nestles tube feeding food ISO Source 1.5 CAL 3 x day and moving to 4 x day. It is Gluten Free so that is good!!
4. Also wondering about Folic acid as mom had 2 cleft palate babies. I gave dad a sheet I designed for people that think they might have Celiac Disease that has most tests that one should check for. I gave that to dad a few weeks ago but just resent and hope he gives to the doctor.
4. Reason for tube...can't swallow..lot of choking/drooling...vocal chords don't close properly...serious concern of pnemonia
5. I have been wanting mom/dad and sibs to get checked for Celiac...she has the DNA (both parents have DQ2 and Dad has DQ2 and DQ8) but mom said she did not want that disease and didn't want tested. I think they were hoping that the meds would be a quick fix. I think dad is going to ask for test finally!!
6. I would imagine she had kidney and liver checks while in hospital after the first infusion caused her BP to spike.
7. Her pain during infusion was from kidneys they said...lower back pain. I think they ran too fast so gave her benadryl and slowed infusion.
8. Adrenal..doubt it. Thymus...I think yes but until I see tests..not for sure.
9. Cardiac...Mom has always had white coat syndrome and took BP meds but had an afib attack once and put on meds.
10. Meds not sure if this is right dosage as dad read to me I am bad at note taking. Dad is not home now so will check again later tonight. This is really hard not being there
- Alprazolam 30mg but think dad might mean 3.0 and she cuts in half to 1.5 for anxiety. Takes morning and night.
- Coumadin/warafin 2.5 morning and night.
- Prolax taken with prednisone afternoon.
- Diavon 160 mill night Beta Blocker.
- Metoprolol/Toprol 25mg morning 50mg night and maybe afternoon.
- ISO Source 1.5 CAL Nestles 3x day and working to 4 x day
- Extra D3 and B12-2200mcg liquid into tube feeding
11. Ptosis..Dad is going to check but it hasn't been mentioned. I had that and now even when I feel a little MG weakness my eyes do not do that anymore...they only feel tight but when I test no drooping...yeah!
Thanks Annie for all your thoughts...you are the greatest and have missed you and our talks...
I have been the same over on GFand Beyon...so busy but will start another post on how I have fixed most of myself...well not all...never really be normal..never was...LOL!!