Adhd 22q11.2 both emotional and physical ?
today I am focusing on mental health and 22q.
After some people in the 22q community decided to bicker over the care and treatment I am seeking for my daughter. Instead of showing support and comment on my blog posts they run into a chat room which I am apart of they do not know I am there but thought I would spill the beans now and say this of you have anything to say to me just tell me. Be a decent human.
end rant and back to the posts that inspired this blog posts
In the 22q community Bella and I are stared and watched like a halwk.
People wonder and have questions which I do not mind the questions but when it tossed around that when my momma bear feathers will get ruffled up. ella has both emotional and physical Adhd the medications she is on makes or breaks her day at school.
The med is not mind altering like riddlin but in the morning Bella takes a medication that helps with focus and at 5:00pm takes another pill for impulse control.
Adhd physical and emotional is much more difficult diagonse in girls we had Bella have a neurological evulation when she was 5 after it was confirmed her seizures were none epplitical.
Bella endured eeg testing after video eeg testing both awake and sleep deprive all that is inbetween.
The genetic disorder she has drs like to pass adhd symptoms as mood behavior bipolar or skitofrenia because a small number of paitents during 1 clinical trial went viral after it confirmed some of the people who had skitofrenia were diagonsed with 22q11.2 deletion as well some drs even while at the U of M attempted to start testing Bella for the skitofrenia with their biasis questioning I stopped them right there in their tracks and informed them of all we have done so far and what was already founded.
It easier for Doctors to pass the buck for this syndrom do not let them. We would not be as far as we are today if I never spoken up and have done my research. Always ask for everything to be shown in writing.
Miss diagonses are common as Dr do not still understand how this disorder effects adults without proper funding for treatments and clinical trials drs will not care.
Look at atuism for example some of adhd symptoms could be confused with autism but we did a deeper look and Bella adhd symtopms both physical and emotional fit with what the nurologist found. On top of that Bella is behind a year. Kids at school do not often understand her quirks and they sometimes get frustrated and as you can imigine Bella gets frustrated as well.
Bella had nurologlical test then nothing happen until we started seeing dr at mary free bed for follow up treatment that is key really. Bella graduated out of Ot Pt and speech
Bella had pt for the pains in her legs that come from mild form of cp which the 22q community lovea to bicker over my daughters diagonses yet they wonder why they do not hear from me of in groups any more
we did meds for physical pain as well as for emotional issues combined with weekly theraphy sessions while she misses school. Then has to go back and feels pressure from missing days she also has aniexity and panic attacks and ends up being late sometimes on test days because she refuses to leave the house.
It would help if the school did not put so much pressure on the kids to perform like robotic monkeys to increase their test scores for school fundings
I am not standing by letting things happen but instead being pro active and using what is called preventive treatments or measures in the scientifict world.
I also go by faith to keep pressing forward balance is key component to mananging the health care for those of us who have 22q. I also have 22q and adhd and have to do simular treatments.
I only wish doctors realised we are people with emotions feels and concerns.
Insurance has not been fun dealing with Bella insurance is bounced around like a yoyo between jobs and then back to medicade and jobs insurance again.
we had to take a month off right as soon as Bella had some social issues at school.
We had a few rough days in a given month but with determination and prestience we made it though and you will too.
Be brave and take courage the pre teen and teen years can become complicated and messy adding ontop of medical disgonses to just pile on even more inscurity.
ADHD both physical and emotional is never going away even when we have good days. I appreciate the good days that much more
We need to catch them doing great here is one of Bella reading with out being told.
thanks for reading