Hello from South Africa
| Posted: July 2nd 2010 | |
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Sanet |
Print Hi there, I'm the grandmother of 6 month old Max who's been diagnosed with Mitochondrial Disease Complex II & III. I didn't realise how serious Max's illness was untill my daughter Lenyka (Max's Aunt) told me about the letter that the pediatrician gave Ciska (Max's mother) in order to give other physicians the information they need should they have to treat him. I do believe the physicians simplified Max's illness by telling Ciska that Max's cells can't produce all the energy that he'll need (which is true in a way, but not the whole story??) Max had digestive problems, urinary problems and he dehidrates very quickly. Yesterday Ciska was told that Max might need tubes in his ears due to infections. At this stage I'm trying to focus on now and not on what might lay ahead. Max was very fortunate because the doctor that first treated him is an excelent paediatrician that's well informed and not to afraid to admit when she doesn't have all the knowledge. I do believe if Dr Gibson didn't treat Max and he was left to some one else, he might not be here today.
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Max was admitted to hospital
Submitted by Sanet on Tue, 07/20/2010 - 10:19am.
Max was admitted to hospital after a vomiting session and Friday Max was discharged from hospital after only one night's sleep over. The doctor decided that Max shouldn't take in any solids. Today he was admitted again with tonsillitis and an ear infection.
I am so sorry your daughter
Submitted by Tina_EvesMum on Sun, 07/25/2010 - 4:36pm.
I am so sorry your daughter and grandson are facing such a tough time.I do hope they can get the infection under control and get Max the nutrition he needs.
Does he have a Gastrostomy or NG tube to get good nutrition if eating is causing him difficulties?
Please ask questions on here there are a lot of families with a lot of experience, Unfortuately as we are alldealing with the effects of Mitochindrial disease in our children or ourselves there are times when th board gets slow, but there are people around and I know they will comeback with information.
I am sorry we dont have a Complex number for Eve's problems, she has leighs disease and I know how that i affecting her but cant say I have really got my head around the whole situation. Energy is deffinitely lacking big time. Any infection or illness effects her greatly and she becomes even more weary than normal.
Anyway, sending you loads of love and hugs and hopeing and praying there is an improvement for Max soon.
Tina
Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy.
I do not know what the future holds but I am glad I know who holds the future!