Dr says dc’s blue lips might be a sign of seizures

amother

Thu, Apr 27 2023, 9:49 pm

Dc gets random blue lips. Saw cardiologist today for a previous issue and she said it’s not related and suspects that it may be seizures.
I have a neurologist appointment in a half year.
What to do until then?
Pediatrician so far suggested I get a pulse ox device to check respiratory during episodes of blue lips.
Should I be worried if there could be cognitive issues in case these are seizures?

amother

Molasses

Thu, Apr 27 2023, 10:09 pm

You have an appointment with a neurologist in 6 months???? That's insane. If your child has seizures he/she needs to be medicated to prevent them. You absolutely need to be seen sooner. Much sooner. Is there a person or organization in your community that has connections and can help expedite the appointment?

amother

Thu, Apr 27 2023, 10:09 pm

amother Chicory wrote:

I once had blue lips randomly as a kid. Turns out it was strep.
Did you check for strep recently?

This isn’t a one off thing, it happens every now and then.
Dc had strep a few months ago, I didn’t recheck. I should ask dr.

amother

Brass

Thu, Apr 27 2023, 10:12 pm

How old is your child? Pulse ox is very difficult to use on kids under 2.
How long are the blue lips lasting for? Can you have hatzalah bring you in to a children's hospital the next time and hopefully they can help you reach a diagnosis.

amother

Opal

Thu, Apr 27 2023, 10:18 pm

How old is your child? Is it only blue lips or anything else when your dc gets blue lips?
My son was an infant when I noticed he would get blue lips every so often.
Went to the cardiologist also and all was fine there.
Took him to the hospital and there in front of the nurse his lips turned blue and she said he was having a seizure.
Turned out he had reflux but not typical reflux because he never cried and never spat up.
Blue lips could be many things but this is what was with my son

amother

Thu, Apr 27 2023, 10:45 pm

amother Brass wrote:

They don’t last very long. I haven’t timed them but not long.

amother

Thu, Apr 27 2023, 10:47 pm

amother Opal wrote:

Reflux? Wow interesting. How did you find that out? Could regular pediatrician check?

amother

Opal

Fri, Apr 28 2023, 12:57 am

amother OP wrote:

Reflux? Wow interesting. How did you find that out? Could regular pediatrician check?

I honestly don't remember it's been so long ago.
But he was in the hospital for a week with lots of tests done.
The thing is maybe a pediatrician could dx but they might want to run tests.
My son went through an EEG for 24 hours a heart monitor even though he already was seen by a cardiologist can't remember what else was done.
He was sent home with reflux medicine and they told me to sit him up for 20 min after feeding.

Just One

Fri, Apr 28 2023, 1:22 am

If there is legitimate concern that this might be a seizure you should not wait six months to be seen by a neurologist. Do you live in the US? Can you get someone to advocate on your behalf or use someone else for meanwhile?

amother

Fri, Apr 28 2023, 3:43 pm

Just One wrote:

I spoke with Chaim medical. If over shabbos I see another episode then I’m heading to ER after shabbos. If not then I’ll probably head in sometime next week. I don’t want to delay testing in case it is seizures.

Ema of 5

Fri, Apr 28 2023, 3:49 pm

amother OP wrote:

Get the cardiologist to get you pushed in earlier. Is your neuro visit in 6 months for possible seizures, or something (so far) unrelated?

bs6208

Fri, Apr 28 2023, 4:02 pm

amother OP wrote:

One of my siblings actually suffer from absence seizures and a few cousins of mine have epilepsy. I’m hoping this is not the case for dc..

Hugs
May your DC always be in good health.
My DD also suffers from absence seizures. It is considered epilepsy.
I hope im not derailing the thread with this: May I just ask if you know of any organizations or support groups for this? Or even a whatsapp group? Just somewhere to ask for practical real time questions and advice.
I've been searching for over a year and unfortunately, seems for every kind of medical issue there are organizations or groups, except epilepsy. In my search I ended up speaking to a woman who tried opening a phone support group for seizures many years ago, she told me people are embarrassed that other people should know that their child has seizures.
I was like- are you serious? I have no intention of hiding this from anyone. And I'm not looking for emotional support or anything. All I want is someone in the same situation to discuss side effects of the meds or finding out how to get a health Para for the pool etc.

amother

Fri, Apr 28 2023, 4:02 pm

Ema of 5 wrote:

Get the cardiologist to get you pushed in earlier. Is your neuro visit in 6 months for possible seizures, or something (so far) unrelated?

Something so far unrelated but I had my suspicions about this as well.
Even with a pushed up appointment it would still take a couple of weeks to get testing done.

amother

Fri, Apr 28 2023, 4:05 pm

bs6208 wrote:

I fully agree with you. I’ll ask around. No one should go through any hardship alone, there should be zero shame and stigma attached to this.

amother

Sat, Apr 29 2023, 10:59 pm

I'm puzzled about something. Dc has been getting pt (and other forms of therapy) for over a year. Last week while walking, dc kept stumbling again and again within a few minutes of each other. It happens sometimes since dc's mid-section is still weak, but this time it was super weird since it was happening a few times in a short time. I was puzzled since dc was wearing supportive shoes. Pt keeps saying that when she does therapy with dc, gait is good and she didn't notice any stumbling.
they keep mentioning it might be due to a specific behaviour issue. Could this be related to other symptoms mentioned in this op?

Stars

Sat, Apr 29 2023, 11:14 pm

What do you mean a specific behavior issue? Ugh I hate it when OTs and PTs call “behavioral issue” without digging into why the behavior is happening. Kids don’t want to be bad. There’s always a reason.