Our Diagnosis Story 

I have a son with this as well. Can I ask what are you doing that has improved the seizures?

Advocating for yourself is the new healthcare system for sure.

What doesn't kill you makes you stranger 😉💖

​@@SilentSlept why would you call someone strange just because their child has a chromosomal abnormality?

@@GroundhogBaby… do you have any experience with medical impairments or family with medical conditions? You seem almost troll like with your comments. These videos are helpful for people who feel all alone and those with new symptoms/diagnoses.

@@GroundhogBabyI believe she meant to write Stronger, it is a known Kelly Clarkson song.

@@LarissaLifestyle odd she hasn't corrected it 🤔 No she meant strange because these people are strange AF.

Failure to thrive is a subjective finding, not a diagnosis. It’s a starting place to get insurance companies to pay for further evaluation. That’s all. There’s no judgement associated with FTT.

My Kids both went to Sick Kids in Toronto 🇨🇦! They both had a rare type of TB in their lymph nodes. (Non communicable) we all tested negative for TB. They both had major surgeries. It started with a possible non-hodgkins lymphoma with our son. Took awhile to finally get surgery. Went well in the end. We were told that our daughter (after our son’s surgery) wouldn’t have it. There were no recorded cases of siblings getting the same thing. With our daughter we ended up driving the 3-4 hrs to the ER at Sick Kids & I had to advocate to even get her seen by the ENT. Then get past the resident ENT who thought he was going to put a needle in our daughters neck… bc it couldn’t be the same. If he had she would have been dead within a minute. Her surgery took longer than open ❤ surgery & we were told if I hadn’t pushed she would have died within days to at most a week or 2. We went through lots more afterwards, our kids now 25f & 27m are still on the registry for possible research. There have still been no other sibling cases…. Crazy life stuff. They still have no clue for sure where it came from & no other kids got it. I’m so happy your daughter had grown up & was able to have her own children. I hope each of them all grow up healthy as well!! 🇨🇦

@marciapenney2286 hi Marcia, did they do genetic testing?

I suspect she has some respect for him, but it really appears that she has none. What he has to say may not be of value to her, but it is to us.

Just look up full genetic sequencing. If your MD does not think it’s indicated, any geneticist will begin your diagnosis journey with a full-genome sequencing. Of course. CP is not genetic, but that doesn’t mean there cannot be additional concerns. You don’t have to tell me, but is your son exhibiting symptom set that leads you to think he also has a genetic anomaly?

Agreed, let alone the idea of instinct and that you know yourself and your kids better than anyone.

I am a health care provider. If the “self-diagnosis” includes enough actual indications, further testing is always provided. My field is neuro, and we never discount parents’ observations. Never.

What a horrible thing to say. I'm sure these parents have cried more than their fair share of tears. This is also their life forever, caring for their girls. Nobody needs you trying to bring them down when they have done such an amazing job of coming to terms with their children's diagnosis and doing their best to give them a wonderful life. Be a better human!

​@@travisvirgoe1310❤Well said.

So what's your point

Seriously she sounds so dumb "kiddos". They are your children. Treat them as such.

Kiddos❤❤❤❤love this husband and wife team. Hey, they love their kiddos!

​@@GroundhogBabyI would suspect she treats them better than you ever would, wow...no patience.

Really? Twelve years of intense education to be a neurologist and you “find they don’t know anything?” Maybe you should be a neurologist? Since you know so much more. Oh, have you self-diagnosed your mother, since no MD in Tennessee can diagnose her?

You just typed it, lol.

Perhaps it’s regional. Where I live, New England, “kiddos” isn’t a term I hear. I hear it only on social media, with people living in the south and southwest. If a term is used where one lives, it doesn’t sound odd to them.

​@@JaimeMesChiens she doesn't live in the South. She lives up north and I am a full fledged southerner rebel and we don't use that term down south.