Genetic conditions that affect mental health?

Genetic condition that Affect mental health?

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 I am 35 I have my 11 year old I have been doing a lot of self-reflecting and kims questions couldn’t have come at a better time in my life. .22q is a total body disorder. It effects from head to toes.
Life can be a lonely place for a mother too, no one really knows what you are going through, until, that is, when you meet someone else in the same boat. It’s a huge relief to connect with other families, other mothers who have had the same experience in my case there is no boat for me. I don’t have many others who are adults with 22q and have children with 22q.
I don’t really fit in. I had to make peace with the fact I was born to stand out. Bella and I are struggling with the same daily concerns as you are but we don’t get that sense of a ‘new’ family when we join support groups. I had to create my own.
 A few years ago a friend and I started a rare genetics support group that met up locally in a Mcdonalds  
I shared how I passed out once at a children’s birthday party. Where my daughter saw me curled up. I ended up in the hospital  few times having my stomach pumped in what I now look back and see was my cry for attention and help because I didn’t understand at the time what was happening to me why I was throwing up and passing out when the world became overwhelming.
Stress and panic did a number on me. Being a new mom is fighting but being a mom to a child who has the same genetic disorder that I have was down right scary. What kept playing in my mind was would she be just like my siblings who have 22q and much more sever conditions from 22q would my child pass away like my brother did while he was a sleep. I had so many questions none of the so called experts could answer and I had to become my own expert.
 It put me in the position I am now with a understanding that not many others have from all perspectives mom adult sibling of someone with 22q I seen the belly of the beast sort to speak but I’ve also seen hope and others living with it and not even knowing about it like myself until I was 21. Sure I appear fine now as does my child but that came with a lot of hard soul searching, group and individual therapy sessions that included exposure therapy, eft tapping and cbt as well as dbt skills. writing journals and dumping out old thoughts for new ones and new truths and discovering my worth in God
 only now looking back that I can see the huge emotional and psychological toll that loving and caring for a child with special needs can have on a family.
 I had to learn my limits. learn it was okay to not be okay ]Mental health is part genetics the other part is choices we make and the effects those actions have on others.

How to handle doctors visits with special needs kids like a boss! or our trip to U of M

 Hello everyone,

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I am going to dive right into this one as I am excited to share the news.

 The reason for the doctors visit is Bella has 80% hypers-nasal speech means when she speaks air goes up her nose is what the test showed at the last doctors visit.  

In Aug, in fact, we were scheduled to go ahead and correct this issue she has with air by fat graphing which involves fat from some part of Bella (I wasn't sure where they were going to find any fat on her)  I was wondering if we should wait it out until she passes puberty or just go ahead and do it now and get it over with.

The speech doctor at the clinic had to perform her speech test on Bella by asking Bella to say funny sounding sentences. Bella had to say words while pinching her nose, followed by the breath o her breathing on(magic mirror thing a ma jigger) I am not sure what it was called but it goes under Bellas' nose and you can tell if there is air in the mirror if it clouds up or not. Bella had no air on the mirror this time.  Last time the mirror was all cloudy.

Bella then had to sit with a fun looking space helmet on her head and speak into a sensor while she said the same funny worded sentences. Bella scored a perfect normal on the test. 4 times. Normal from 80% is something only short of a Miracle.

I don't even think it sunk in yet. Bella was thrilled and thankful that Bella did not have to have a camera go down her nose into the back of her throat.   It was a shock to both of us no surgery needed  Bella will go back for a team visit soon as they can fit us in to talk to the team about our next treatment plans.

Below is some info on what Velopharyngeal or for short Vpi is

 

 

 

 

 

Bella playing in the play area on the 8th floor after to burn off her energy before we headed home

 

I know I asked all of you to visit my website to hear about this trip because it is such great news it was difficult to talk to 100 different people and I can not keep up with that many questions. If you do have any questions feel free to leave a comment on the blog in the comment section below. 

Thank you for reading. Bella looks forward to seeing your likes, comments, and shares and she said she is super excited she does not have to have surgery.  Bella is a 10-year-old girl with 22q and cerebral palsy. I am a mom who also has 22q. This is our journey and I am sharing to help others out there not feel so alone.   Don't forget if you like it subscribe (Purple button top right of the homepage)

Until next time take one second at a time.