Extreme behavior, arm flapping, weird eye movements-UPDATE

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amother

Bluebell ↓

Sun, Jul 14 2024, 6:25 pm

Hatzlacha!
Hope you get the right services easily and see lots of progress

amother

↑ OP ↓

Wed, Jul 17 2024, 9:11 pm

My precious daughter was diagnosed with Focal seizures today. Got her first dose of medication at bedtime today.
I don’t know how I feel.

amother

Peru

Wed, Jul 17 2024, 9:15 pm

amother OP wrote:

My precious daughter was diagnosed with Focal seizures today. Got her first dose of medication at bedtime today.
I don’t know how I feel.

Wanna talk it out?
You likely feel a few things.

amother

↑ Clover

Wed, Jul 17 2024, 9:18 pm

amother OP wrote:

My precious daughter was diagnosed with Focal seizures today. Got her first dose of medication at bedtime today.
I don’t know how I feel.

I’m so so sorry Sad

I have several kids with epilepsy so I can commiserate. Only positive I can think of is that there is bH medication that works very well.

amother

Brass

Wed, Jul 17 2024, 9:21 pm

amother OP wrote:

Saw a psychiatrist today who unofficially diagnosed ASD. She would like for us to get a more in depth evaluation at an ABA agency. I already made the calls, left messages.
I still feel so unsure but I know this might be the right step.

The good news is that if seizures are the cause of the lack of her skills then she's not "really" asd but is presenting as such.
Ie with enoigh treatment and therapy she may be able to test out of having asd

amother

Trillium

Wed, Jul 17 2024, 9:26 pm

amother OP wrote:

My precious daughter was diagnosed with Focal seizures today. Got her first dose of medication at bedtime today.
I don’t know how I feel.

Hugs. This is hard.

yiddishmom

Wed, Jul 17 2024, 9:27 pm

Just to give you some hope, when I was little, I think between 7-10/11, I used to have seizures. I don't know which type exactly.

At some point, it bH disappeared on its own. I was on Medication for it. But stopped taking it after 2 years without incident BH.

I am so grateful! I hope your daughter outgrows it too!

amother

↑ Bluebell

Wed, Jul 17 2024, 9:28 pm

amother OP wrote:

My precious daughter was diagnosed with Focal seizures today. Got her first dose of medication at bedtime today.
I don’t know how I feel.

Sounds like an intense hard week for you.
Many hugs ❤️
Hope you can find the right support and of course treatment.

amother

Coffee

Wed, Jul 17 2024, 9:34 pm

Op I urge you to look deeper.
This seems like a classical Pandas case to me.
I have a sister who was cured of chronic lyme. A niece who was cited is pandas/sydenham chorea and a child who's had pans.
(Autoimmune issues do run in the family)

These don't go away with treating the symptoms. Oftentimes, it gets worse over time so you need to add more and more meds to manage more and more symptoms. Better to treat the root cause.

PA Raphael Lebowitz is extremely knowledgeable. You can try reaching out to him.
Or Chai4lyme can help too.

Often there is an underlying silent infection that's weakening the immune system causing the repeat strep infection and all associated neurological and behavioral issues.
Good luck. And refuah sheleima.

https://www.linkedin.com/in/ra.....21548

amother

↑ OP ↓

Wed, Sep 04 2024, 9:35 pm

Brain MRI done today, I can’t think of anything else other than what might it show. Neurologist said she doesn’t have ASD but she’s in the neighborhood. Sending us to Neuro geneticist (there are only 3 in NY) which will take months and months for testing and results. We also started OT twice weekly. I don’t know what else we should be doing.

amother

IndianRed

Wed, Sep 04 2024, 9:43 pm

Op honestly the easiest way to start would be to put her on antibiotics for a few weeks and see if there’s any difference again…
If you do see a difference you will know it’s pans/pandas.
But go to a doc that has knowledge in pandas bec u want the right medication.
Good luck!

amother

↑ Buttercup ↓

Wed, Sep 04 2024, 9:46 pm

amother OP wrote:

If it’s seizures it explains a lot. Also sometimes the seizures make kids regress. Don’t know if that’s what you are dealing with. Why do you think you need more answers? Get her as much services as you can and get her on a dose that controls her seizures.

amother

Crimson ↓

Wed, Sep 04 2024, 10:19 pm

This says PANS all over it. My dd had absence seizures, together with a lot of weird behavioral stuff. We treated the pandas, did heavy metal detox, supported her liver, thyroid and, adrenals, and bh the seizures went away quickly.
PA Shira Verscheleiser in Lakewood knows a lot about this. So does PA David Rosenfeld in Brooklyn. Please get your child real help that will make a difference

amother

Snowdrop

Sun, Sep 08 2024, 7:27 am

amother OP wrote:

you should find an excellent neurologist. My daughter got seizures last year,it was like ton of bricks. Not much support in frum world, besides, if epileptic, there r many different types and prognosis long term. It's scary. What helped me was that my Dr is top neurologist, and bh medication #3 currently controlling seizures. Ask epilepsy questions,if you want. Mri is good, it will show if anything is there (don't take my word as guaranteed medical info, but I read any article when my daughter had seizure to find out what more I can do) MRI is valuable bc it will rule out tumor, or will show if there is anything in the brain (some people have some physical issues in cortex ,eg)causing seizures. If MRI clear , u will be probably doing eeg to see seizures type. All these tests are good, they give u knowledge how to address seizures. Call shuki berman about doctor referral. We actually did Mri in hospital before EEG, then over time we had two EEG,one 3 day EEG and two Genetic tests to figure out what causes seizures and if any genetic component. I did chromosomal microarray and epilepsy panel genetic test. My daughter did not respond to medication, at some point the dr suggested autoimmune encephalitis test, but it was around 40k, and because medication works, we never ended doing it. I used Dr segal, I think he also has ny locations, he sounded excellent and knowledgeable, involved in different clinical trials and research for epilepsy. But maybe in NY there r other excellent doctors.

Ps sorry, didn't realize earlier u were going through Long saga before. I also tried to understand eeg, but after bunch eegs and ambulatory over 3 days at home, I Left it to Dr. How is your child doing now. also, I m not experienced with pandas, but can it be that seizures and pandas are Coexisting? Wishing you right shaliAch! Refua to the kid

amother

↑ OP ↓

Wed, Nov 06 2024, 1:12 pm

Update: daughter officially got diagnosed with Autism and a language disorder. This was done by a professional and I paid out of pocket so we know it’s legit. Tomorrow we’re meeting with the school district and hopefully getting her into a special Ed preschool.

Imas, I’m looking for a top-notch speech therapist to help us figure out how to help her with speech regression. Any ideas?

imasinger

Wed, Nov 06 2024, 1:22 pm

I'm glad you got a confirmed diagnosis, do you want to share/re-share what area you're located?

amother

↑ Celeste ↓

Wed, Nov 06 2024, 1:26 pm

amother OP wrote:

I wish you the best
Speech therapist here
Likely her speech wasn’t communicative, but rather was naming/ imitative, got here what she wants through cause and effect. (How advanced was her speech?)
So you’ll want to have her start to associate that when she says a specific word it has a concrete “result” of her getting something she wants IF she exhibits eye contact which will show her there is another person involved in the communication. (This is obviously very general, this may not be where she is practically)
Strong recommendation for an ABA type program, combined with a floortime type approach.
I have my own techniques, but trying to give some pointers here.
Also get a really good OT and work on body awareness.
You can do this now that you know what you’re dealing with.

amother

↑ OP ↓

Thu, Nov 28 2024, 4:50 pm

I can’t believe we’re still absolutely nowhere.
We finally had our meeting the first week of November, and lo and behold my daughter didn’t get approved for special education preschool. I sent a lengthy email to the chairperson. What they approved her for was a SEITT who would sit into her classroom for a month and then sometime in January we would have another meeting to see how it’s going. I put my foot down and said I absolutely refuse. She’s a very bright little girl, I don’t want a shadow for her. She already might be feeling different than the other kids, no way am I going to make her stand out more. They approved her for UPK, I said a smaller school setting isn’t the answer; she’ still in pull-ups, a smaller setting just makes her more susceptible to scrutiny from the other kids.

After sending the email and arguing again by phone, the district decided to allow a letter from the school stating that she wasn’t doing well in the classroom.

Now we need a letter from the school. Still waiting. What I don’t understand is why EVERYTHING IS TAKING SO DARN LONG.

We applied for ABA according to what her neurologist says but she is still arguing that daughter does not have ASD. How do you recommend aba if someone doesn’t have asd?

Every day daughter comes home I feel like crying. She slips into baby talk, noises and grunts and I feel like my heart is just not beating anymore. It’s broken beyond. My other kids are telling me how hard it is with daughters daily meltdowns and it just breaks my heart further.

I asked my pediatrician for a script to check for PANDAS since I really do want to know if anything physical is going on. I really want to get it done asap because I’m just so lost and I can’t take it anymore.

And it feels like not a soul cares and wants to help us get the help we need.

On top of everything we applied for services and it’s taking forever also, and the amount of PAPERWORK needed for everything and I’m just one person. Literally can’t anymore.

amother

↑ OP ↓

Thu, Nov 28 2024, 4:51 pm

We’re in Monsey and need suggestions for the area. Please. And just chizzuk and kind words.

amother

Cerise

Thu, Nov 28 2024, 5:11 pm

🫂🫂🫂

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