Vicki, Sorry about that !! Here it is http://www.acor.org/ped-onc/resources/airlineflights.html Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7...
Hi all, Im not sure what to do. I have been having a lot of problems with my free insulin levels lately and the endo. has said I am now prediabetic. Im on...
Hi all, Im not sure what to do. I have been having a lot of problems with my free insulin levels lately and the endo. has said I am now prediabetic. Im on...
Kelly- I have severe osteo and am going to be recieving a once a year IV infusion next week while at the Cleveland Clinic. It's a drug used for bone cancer ...
David, I have been following your posts and I do not really post too often, as my daughter Kayley died of Leigh's disease or mitochondrial encephalopathy in...
I am so sorry to hear you had a rough night. I don't have much advice other than if you are feeling that bad and can't keep anything or very little down with...
Hi, We too use robinul daily. We love it and have had no bad side effects. Once in a while they will build up a resistance to it and you must stop it for a day...
-Darla, Sorry to here about Zipporrah illness. It is so hard to see their regressions-----again. The "funny flip side" (for me at least) was I always found...
Hello All, I am new to these groups. I have a son 20months diagnosed with Leigh's. I came here because of my son's caring bridge site. Vicki signed my Elijah's...
Hi Thanks for the reply. I have heared that damage to the basal ganglia can cause the movement problems that I have observed. I'm sure its all related ie...
Darla, Hopefully Zipporrah is just weak from the virus and this will pass. I know about the regression with illness, Audrey goes through the same thing. We...
Hi The hearing indeed could be inherited from the mom, which is one of the reasons Mito is presumed. Her 2 sisters also have hearing problems but as far as I...
Hi Ann! I'm glad you found the group. I mostly lurk, but they people here are very supportive and kind and have a wealth of knowledge. I have read a lot...
Kimberly, ... Thanks for sharing this! Emilie's doctor has told us we could try doing that, but we had doubts about whether it would really work and haven't ...
Kellye, My 7 yr old son receives Pamidronate infusions. he gets a low dose one time/month. WE started very slowly and our nephrologist is unwilling to use a...
Julia, Yeah this works great! Much better than taking him off it... no way would we do that. Also there is a new drug out there.. not sure of the name though....
hi ann and welcome. my daughter, dx with leighs also, is now turning 5 on the 20th! please feel free to write me directly if you wish. bethany mom to brennan...
We looked into using Pamidronate on Gaby a few years ago for her osteoporosis. Gaby has PDH and is on the ketogenic diet. Pamidronate interferes with fat...
Hi Anne! My son is the same age as yours (well 21 months.... close enough!) While he doesnt have Leighs disease, he has been tentatively diagnosed with a...
So good to here from you. I often think about you and wonder how you are doing. When you get a chance be sure and let us know what all is going on with you...
Sweaty feet and hands can be an issue of gastro dumping syndrome. My daughter has had this issue and her issue is not absorbing her nutrients but dumping it...
Hello, We need some help and/or advice. Our daughter, Ellie, will be 3 next week. She has mito complex IV with multiple brain lesions, no balance and has...
Cod liver oil & Omega 3 fish oil can help with her eyes. Melatonin or 5-HTP will help with sleep. She sounds overstimulated, which will make it harder for her...
Hi Darla, Thank you so much for your comments. Things improved and I finally got some much needed sleep today. I feel so many times that I just don't know...
well i was just informed that anna graces left hip is "out of socket" and she will need surgery. i do not have much info at this time, as we were at our...
Hi Bethany, Did the doctors say Anna Grace has hip dysplasia? Both my boys do. It's where the hip socket is too shallow and the femur head eventually works ...
You may want to consider seeing a chiropractor first before doing surgery. When our daughter Leah was a baby the docs talked about doing surgery for hers and...
Glad to hear you are feeling somewhat better. Keep trying to get rest and pushing liquids. You will be in our thoughts and prayers. :) Darla: mommy to ...
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