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-> Children's Health
amother
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 Sun, Jul 14 2024, 6:25 pm
Hatzlacha!
Hope you get the right services easily and see lots of progress
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amother
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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.
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amother
Peru
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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.
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amother
Brass
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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
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amother
Trillium
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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.
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yiddishmom
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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!
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amother
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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.
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amother
Coffee
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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
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amother
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Wed, Sep 04 2024, 9:35 pm
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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.
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amother
IndianRed
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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!
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amother
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Wed, Sep 04 2024, 9:46 pm
| amother OP wrote: | | 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. |
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.
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amother
Crimson
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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
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amother
Snowdrop
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Sun, Sep 08 2024, 7:27 am
| amother OP wrote: | | 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. | 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
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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.