Home
Log in / Sign Up
    Private Messages   Advanced Search   Rules   New User Guide   FAQ   Advertise   Contact Us  
Forum -> Children's Health
Extreme behavior, arm flapping, weird eye movements
Previous  1  2  3  4  Next



Post new topic   Reply to topic View latest: 24h 48h 72h

amother
OP


 

Post Wed, May 08 2024, 5:02 pm
amother NeonGreen wrote:
Get her evaluated for ASD in order to get services ASAP
Rule out seizures
Might be Pandas
Regardless there’s so much overlap that you might not get to the exact root cause

Try to speak with a dietitian from the Charlie Foundation - the quicker you get her off gluten and casein the better she’ll be. There is more to it than just gluten and casein, that’s why you need a dietitian that is from the Charlie Foundation


I don’t know where to go for an evaluation; if I’m shelling out a ton of money I really need someone very very good. How do I know who to go to?
Back to top

amother
NeonGreen


 

Post Wed, May 08 2024, 5:07 pm
amother OP wrote:
I don’t know where to go for an evaluation; if I’m shelling out a ton of money I really need someone very very good. How do I know who to go to?

I would start with a pediatric neurologist that should be covered by insurance
First rule out all medical causes, especially if there’s seizures involved
Back to top

amother
OP


 

Post Fri, May 10 2024, 12:33 pm
Pediatrician rechecked for strep today, came back negative. Said her throat was red, and he put a bag to collect urine (she refused to go at the Drs office), since she’s been having accidents twice or more per day. But I knew it wouldn’t be a UTI; her accidents aren’t new at all. Guess what? Urine culture came back negative. Now he’s bh determined to figure this out.

I told the Dr right away I knew it wasn’t a UTI. Up until now he’s been telling me that it was still normal for her to have accidents daily. I disagree strongly. Especially when I am shlepping her to the toilet and while she’s peeing she’s screaming that she doesn’t need to go.

Getting more convinced this might be Pandas. But I’m so scared. I don’t want her taking so much medication.

I also don’t know what I want the alternative to be. Can't Believe It
Back to top

amother
OP


 

Post Fri, May 10 2024, 12:34 pm
amother NeonGreen wrote:
I would start with a pediatric neurologist that should be covered by insurance
First rule out all medical causes, especially if there’s seizures involved


Seeing one the following week, be”H. The thing is I suspect absence seizures if she is having them, and I was told sometimes they can’t diagnose before the child turns four years old.
Back to top

amother
Crystal


 

Post Fri, May 10 2024, 12:53 pm
amother OP wrote:
Pediatrician rechecked for strep today, came back negative. Said her throat was red, and he put a bag to collect urine (she refused to go at the Drs office), since she’s been having accidents twice or more per day. But I knew it wouldn’t be a UTI; her accidents aren’t new at all. Guess what? Urine culture came back negative. Now he’s bh determined to figure this out.

I told the Dr right away I knew it wasn’t a UTI. Up until now he’s been telling me that it was still normal for her to have accidents daily. I disagree strongly. Especially when I am shlepping her to the toilet and while she’s peeing she’s screaming that she doesn’t need to go.

Getting more convinced this might be Pandas. But I’m so scared. I don’t want her taking so much medication.

I also don’t know what I want the alternative to be. Can't Believe It
Did you ask for a throat culture to be sent out? With my pandas kids when they flare, the rapids are always negative but the cultures come back positive.
Back to top

amother
OP


 

Post Fri, May 10 2024, 1:07 pm
amother Crystal wrote:
Did you ask for a throat culture to be sent out? With my pandas kids when they flare, the rapids are always negative but the cultures come back positive.


I think they sent it out
Back to top

amother
OP


 

Post Tue, May 14 2024, 4:46 pm
Saw Dr Bluvstein, daughter had an eye-rolling episode during the visit. She’s scheduling a 48-hour EEG at the hospital.
She was so knowledgeable and sweet, explaining everything. Now we wait for the appointment. I feel relieved a bit but also so anxious.
Back to top

amother
Aster


 

Post Tue, May 14 2024, 5:10 pm
amother Crystal wrote:
Did you ask for a throat culture to be sent out? With my pandas kids when they flare, the rapids are always negative but the cultures come back positive.


Pandas is the body's way of fighting strep antibodies, not necessarily strep per se. My daughter with Pandas did not have recurring strep- tested negative every time, but bloodwork showed very high levels. Ask for bloodwork and take it from there.
Back to top

amother
Buttercup


 

Post Tue, May 14 2024, 5:12 pm
This sounds more serious than pandas. Let the specialists take it from here.
Back to top

amother
OP


 

Post Tue, May 14 2024, 5:19 pm
amother Buttercup wrote:
This sounds more serious than pandas. Let the specialists take it from here.


Agree.
I’m scared Crying Sad
Back to top

amother
OP


 

Post Mon, May 20 2024, 6:17 pm
Hi imas. We went to the neurologist and my child had an episode during the visit. Dr thinks it’s seizures and we now have a 48 hour EEG scheduled. However, it’s in two months from now and I’m very scared to wait that long. How much damage could happen in that time Sad Sad

Do we think she could safely wait? I’m on a waitlist but I wonder who cancels these tests. What else could I do meanwhile to cross things off my list? I feel like I’m driving the pediatrician crazy and it’s not fair that I feel that way. I need the guidance and support.
Back to top

amother
Buttercup


 

Post Mon, May 20 2024, 6:20 pm
amother OP wrote:
Hi imas. We went to the neurologist and my child had an episode during the visit. Dr thinks it’s seizures and we now have a 48 hour EEG scheduled. However, it’s in two months from now and I’m very scared to wait that long. How much damage could happen in that time Sad Sad

Do we think she could safely wait? I’m on a waitlist but I wonder who cancels these tests. What else could I do meanwhile to cross things off my list? I feel like I’m driving the pediatrician crazy and it’s not fair that I feel that way. I need the guidance and support.


I can't believe they are making you wait that long. We were pushed in sooner with suspected seizures. And she really needs it under control if it's seizures, 2 months is insane. I'd push really hard to get you in sooner. Please drive your pediatrician crazy it's his job to help you navigate this.
Back to top

amother
OP


 

Post Mon, May 20 2024, 6:26 pm
amother Buttercup wrote:
I can't believe they are making you wait that long. We were pushed in sooner with suspected seizures. And she really needs it under control if it's seizures, 2 months is insane. I'd push really hard to get you in sooner. Please drive your pediatrician crazy it's his job to help you navigate this.


I feel like such a nudge since I’m the one whose been making him crazy since we started using his practice. I know the wait is insane but I really want this Dr to do it.
Back to top

amother
Pink


 

Post Mon, May 20 2024, 6:43 pm
amother OP wrote:
Hi imas. We went to the neurologist and my child had an episode during the visit. Dr thinks it’s seizures and we now have a 48 hour EEG scheduled. However, it’s in two months from now and I’m very scared to wait that long. How much damage could happen in that time Sad Sad

Do we think she could safely wait? I’m on a waitlist but I wonder who cancels these tests. What else could I do meanwhile to cross things off my list? I feel like I’m driving the pediatrician crazy and it’s not fair that I feel that way. I need the guidance and support.

I had this and was too nervous to wait. I'm in nj and I just walked into CHOP emergency room (which does not take my insurance) and they admitted us and immediately did the 48 hour eeg. bh came out clear, and insurance cover it bec was emergency room.
Back to top

amother
OP


 

Post Sun, Jun 02 2024, 6:33 pm
We’re still not closer to answers:( and things are just so wacky. DD used to take 3 hour naps and we had to wake her, now she stopped napping cold turkey and it’s very hard on all of us. Means no Shabbos nap for me, needs constant supervision. Taking her forever to fall asleep at bedtime, and usually mid-screaming.

Pediatrician said to just wait for the EEG next month since he really wants this specific Dr to do it. I can see what I suspect to be episodes sometimes multiple times per day.
Pediatrician also told me to get her into a special Ed preschool for next winter, but the school I want reviewed her CPSE case and they won’t approve her. I just don’t want her to feel different at school, and she needs on-site therapy. Feel like all this fighting is just a lot.

I know if I take her for an evaluation locally she will most likely get an ASD diagnosis, but I really really want to know for sure what’s going on.
Neurologist wants to do an MRI under anesthesia after the EEG, what else could they possibly find out via MRI?
Back to top

amother
Buttercup


 

Post Sun, Jun 02 2024, 6:34 pm
amother OP wrote:
We’re still not closer to answers:( and things are just so wacky. DD used to take 3 hour naps and we had to wake her, now she stopped napping cold turkey and it’s very hard on all of us. Means no Shabbos nap for me, needs constant supervision. Taking her forever to fall asleep at bedtime, and usually mid-screaming.

Pediatrician said to just wait for the EEG next month since he really wants this specific Dr to do it. I can see what I suspect to be episodes sometimes multiple times per day.
Pediatrician also told me to get her into a special Ed preschool for next winter, but the school I want reviewed her CPSE case and they won’t approve her. I just don’t want her to feel different at school, and she needs on-site therapy. Feel like all this fighting is just a lot.

I know if I take her for an evaluation locally she will most likely get an ASD diagnosis, but I really really want to know for sure what’s going on.
Neurologist wants to do an MRI under anesthesia after the EEG, what else could they possibly find out via MRI?


Growths and brain abnormalities
Back to top

amother
Burlywood


 

Post Sun, Jun 02 2024, 6:49 pm
amother OP wrote:
We’re still not closer to answers:( and things are just so wacky. DD used to take 3 hour naps and we had to wake her, now she stopped napping cold turkey and it’s very hard on all of us. Means no Shabbos nap for me, needs constant supervision. Taking her forever to fall asleep at bedtime, and usually mid-screaming.

Pediatrician said to just wait for the EEG next month since he really wants this specific Dr to do it. I can see what I suspect to be episodes sometimes multiple times per day.
Pediatrician also told me to get her into a special Ed preschool for next winter, but the school I want reviewed her CPSE case and they won’t approve her. I just don’t want her to feel different at school, and she needs on-site therapy. Feel like all this fighting is just a lot.

I know if I take her for an evaluation locally she will most likely get an ASD diagnosis, but I really really want to know for sure what’s going on.
Neurologist wants to do an MRI under anesthesia after the EEG, what else could they possibly find out via MRI?


Hugs. If you get the ASD diagnosis CPSE will take her and you will get free services so it might be worthwhile?
Back to top

amother
Midnight


 

Post Sun, Jun 02 2024, 7:01 pm
See a developmental pediatrician who can be comprehensive and also look into things like seizures, inflammation, asd at once.
Back to top

amother
Celeste


 

Post Sun, Jun 02 2024, 7:05 pm
Call a frum medical referral agency, say this is an emergency and ask them to get you in sooner.
I would not wait.
Don’t worry about being a nudge, this is where you advocate for your child.
If necessary go into an emergency room.
Back to top

amother
OP


 

Post Sun, Jun 02 2024, 7:29 pm
amother Midnight wrote:
See a developmental pediatrician who can be comprehensive and also look into things like seizures, inflammation, asd at once.


I applied to a waitlist in September, was told it could take a year to be seen.
Back to top
Page 3 of 4 Previous  1  2  3  4  Next Recent Topics




Post new topic   Reply to topic    Forum -> Children's Health

Related Topics Replies Last Post
Examples of extreme frugality!
by amother
133 Today at 5:52 am View last post
Is it weird to send a baby gift when baby is 6 months old?
by amother
4 Fri, Jun 14 2024, 8:31 am View last post
Weird Tiros question - please help
by amother
23 Sun, Jun 09 2024, 10:39 pm View last post
Eye doctor in or around Lakewood
by amother
1 Tue, Jun 04 2024, 9:49 am View last post
Good eye dr
by amother
0 Mon, Jun 03 2024, 8:18 am View last post