Re: Infection control help needed

[Guest guest]

We have this same problem. We have 9 kids and our 3 year old has Mito plus brain vasculitis. She is on steroids too so she can't fight off viruses as well. Then when she has viruses she has strokes. Now, my 3 month old is presenting with the same stroke following virus issue. We have had to try to avoid taking her to stores, nurseries, or other locations she would be likely to pick up germs. We, however, cannot prevent others from bringing things home from school. We make everyone wash their hands when coming home but this cannot prevent them from catching viruses at school and then when ill passing it on to the others in the family. Many of us on the list have the same problems and unfortunately viruses are way too easily caught by kids with Mito issues. Other than practicing safety practices you probably are already doing, there isn't much to do. We can shelter our kids but then they miss out on so many things. Really, who wants to NEVER go anywhere? We try to balance it out and try not to live in a panic over what could happen, but also be cautious and practical about where we should and should not go. It can be a hard balance. Hope this helps you some. Darla: mommy to Asenath, Zipporrah, and the gang Infection control help needed My 2-year-old has just been diagnosed with PDH Deficiency. He has autistic traits (no speech) and seems to regress after being sick. He was hospitalized for 7 days in November with an unknown virus.My question is - how do I keep him from getting sick? I have two older daughters who are in school. I have been keeping my son in the house as much as possible, avoiding stores and anywhere where we might encounter germs. How do families balance the need to keep germs away with the need do things outside the home (like grocery shop and take kids to soccer practice)? How far do we go to keep him from getting sick?Thanks,StaceyPlease contact mito-owner with any problems or questions.

[Guest guest]

We have this same problem. We have 9 kids and our 3 year old has Mito plus brain vasculitis. She is on steroids too so she can't fight off viruses as well. Then when she has viruses she has strokes. Now, my 3 month old is presenting with the same stroke following virus issue. We have had to try to avoid taking her to stores, nurseries, or other locations she would be likely to pick up germs. We, however, cannot prevent others from bringing things home from school. We make everyone wash their hands when coming home but this cannot prevent them from catching viruses at school and then when ill passing it on to the others in the family. Many of us on the list have the same problems and unfortunately viruses are way too easily caught by kids with Mito issues. Other than practicing safety practices you probably are already doing, there isn't much to do. We can shelter our kids but then they miss out on so many things. Really, who wants to NEVER go anywhere? We try to balance it out and try not to live in a panic over what could happen, but also be cautious and practical about where we should and should not go. It can be a hard balance. Hope this helps you some. Darla: mommy to Asenath, Zipporrah, and the gang Infection control help needed My 2-year-old has just been diagnosed with PDH Deficiency. He has autistic traits (no speech) and seems to regress after being sick. He was hospitalized for 7 days in November with an unknown virus.My question is - how do I keep him from getting sick? I have two older daughters who are in school. I have been keeping my son in the house as much as possible, avoiding stores and anywhere where we might encounter germs. How do families balance the need to keep germs away with the need do things outside the home (like grocery shop and take kids to soccer practice)? How far do we go to keep him from getting sick?Thanks,StaceyPlease contact mito-owner with any problems or questions.

[Guest guest]

We have this same problem. We have 9 kids and our 3 year old has Mito plus brain vasculitis. She is on steroids too so she can't fight off viruses as well. Then when she has viruses she has strokes. Now, my 3 month old is presenting with the same stroke following virus issue. We have had to try to avoid taking her to stores, nurseries, or other locations she would be likely to pick up germs. We, however, cannot prevent others from bringing things home from school. We make everyone wash their hands when coming home but this cannot prevent them from catching viruses at school and then when ill passing it on to the others in the family. Many of us on the list have the same problems and unfortunately viruses are way too easily caught by kids with Mito issues. Other than practicing safety practices you probably are already doing, there isn't much to do. We can shelter our kids but then they miss out on so many things. Really, who wants to NEVER go anywhere? We try to balance it out and try not to live in a panic over what could happen, but also be cautious and practical about where we should and should not go. It can be a hard balance. Hope this helps you some. Darla: mommy to Asenath, Zipporrah, and the gang Infection control help needed My 2-year-old has just been diagnosed with PDH Deficiency. He has autistic traits (no speech) and seems to regress after being sick. He was hospitalized for 7 days in November with an unknown virus.My question is - how do I keep him from getting sick? I have two older daughters who are in school. I have been keeping my son in the house as much as possible, avoiding stores and anywhere where we might encounter germs. How do families balance the need to keep germs away with the need do things outside the home (like grocery shop and take kids to soccer practice)? How far do we go to keep him from getting sick?Thanks,StaceyPlease contact mito-owner with any problems or questions.

[Guest guest]

Stacey,

Have you had his immune system checked? Some mito kids have immuno-

deficiencies. My daughter and I both do , and are being seen by an

immunologist for it. You doc could do a simple blood test

IGG IGM and subsets. Not many mito docs will link

hypogammaglobulinemia and mito , but my immuno doc says hypogamm.

can be caused by mitochondrial disorders. It worth checking into. If

he does have this, they can use profalactic antibiotics or even IVIG

(intravenous immunoglobulin therapy). Hope this helps and hope

everyone feels better soon.

Dawn

[Guest guest]

Stacey,

Have you had his immune system checked? Some mito kids have immuno-

deficiencies. My daughter and I both do , and are being seen by an

immunologist for it. You doc could do a simple blood test

IGG IGM and subsets. Not many mito docs will link

hypogammaglobulinemia and mito , but my immuno doc says hypogamm.

can be caused by mitochondrial disorders. It worth checking into. If

he does have this, they can use profalactic antibiotics or even IVIG

(intravenous immunoglobulin therapy). Hope this helps and hope

everyone feels better soon.

Dawn