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Mother of special needs children losing her mind

Mental Health | Last Active: Dec 20, 2017 | Replies (17)

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@lisapraska

Hi my name is Lisa, my son us 5 years old and has been diagnosed with cerebellar atrophy, by an MRI we have been to the Mayo Clinic in the (USA), there we proceeded to geonomics (genetic testing) they did a small panel test and that came back good, so they moved on to a large panel test, got a call last week and we have to go back to the Mayo Clinic for the results in November, they just seems like a long wait for wanting answers for the last 5 1/2 years. This is a very stressful time for my husband and I. I was told before the large panel was done the if the news was good we wouldn't have to go back to the Mayo Clinic for the results and if they were not good we would have to return for the results, which is giving me this feeling my son's diagnosis is some sort of genetic disease. I'll be happy for the answers yet I am also very scared. I suffer from depression and anxiety, I often get overconsumed with my son and trying to research on what types of genetic diseases are curable, again he is only 5 years old and just started kindergarten.

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Replies to "Hi my name is Lisa, my son us 5 years old and has been diagnosed with..."

Hi, @lisapraska. I am sorry to hear about the stressful time you and your husband are having waiting for news on your son. Waiting can be really challenging. My own son was born with a sacral dimple, and we had to wait three months to finally get an MRI done, till he was old enough. The waiting time was concerning.

I see that you've connected with our Brain and Nervous System Group, which is great. I also wanted to encourage you to take a look at the About Kids and Teens Group, moderated by @kanaazpereira, here: https://connect.mayoclinic.org/group/childrens-and-teens-health/. Also, I thought you might be interested in looking into our Caregivers group, moderated by @IndianaScott, here:https://connect.mayoclinic.org/group/caregivers/.

Lisa, what kind of emotional support system outside your immediate family would you say you have at this time?