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Post by goldenbird on Jan 16, 2021 13:25:11 GMT -6
Another little update in OP
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Post by canteverremember on Jan 16, 2021 13:54:05 GMT -6
Oh goodness. Poor little guy but I’m glad he’s off ventilator. Many healing through for him and 💜 to you.
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joy
Global Moderator
TTC, Pg, B&C
Posts: 9,182 Likes: 41,632
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Post by joy on Jan 16, 2021 15:22:53 GMT -6
Ohmygosh. I hope this little boy is okay.
And his parents vaccinate him.
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Post by goldenbird on Jan 16, 2021 15:43:40 GMT -6
Ohmygosh. I hope this little boy is okay. And his parents vaccinate him. His dad is a MD. I just...actual medical professionals who don't believe in vaccination just kills me.
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jt2378
Sapphire
Posts: 3,520 Likes: 6,733
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Post by jt2378 on Jan 16, 2021 17:24:33 GMT -6
That’s so awful goldenbird, I hope he starts to recover and they can figure this out with the seizures, how horrible. Also ugh to the antivaxx parents.
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thatgolfb
Unicorn
Posts: 55,018 Likes: 234,896
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Post by thatgolfb on Jan 19, 2021 13:54:32 GMT -6
goldenbird, has there been any update on this poor kid?
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STP
Diamond
Posts: 43,314 Likes: 314,708
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Post by STP on Jan 19, 2021 14:05:09 GMT -6
I have been praying for him and his family every night, goldenbird. How are they all doing?
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Post by goldenbird on Jan 19, 2021 16:53:41 GMT -6
STP and thatgolfb they still don't know why he's having seizures and if it's connected to the bug bite they found on him. My mom said something about 'the things they're looking for take time to show up'. So I don't know if that means show up on lab work or imaging or what. He is still having the seizures. He's breathing on his own but is still sedated. They put in a feeding tube and the sedation is keeping him from trying to pull it out and also lowering the seizure risk. Thank you all for thinking of him. I'm going to call my mom tomorrow when I have more time to talk. This latest news was as of Sunday.
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STP
Diamond
Posts: 43,314 Likes: 314,708
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Post by STP on Jan 20, 2021 8:49:04 GMT -6
goldenbird, I will continue to hold him and all of you close in my thoughts. This is a nightmare. His poor parents.
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Post by goldenbird on Jan 21, 2021 14:16:29 GMT -6
My mom said this morning that he's still having seizures. They've done brain scans and found nothing, no masses or reasons to explain it there. I'm very unfamiliar with epilepsy but I'm wondering if this is some kind of sudden onset, severe epilepsy. I think the plan is to continue to take blood daily and keep running every imaginable test on it.
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sweptaway
Ruby
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Member is Online
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Post by sweptaway on Jan 21, 2021 14:19:51 GMT -6
goldenbird I'm so sorry they still don't have answers. How scary. Holding them and you in my heart ❤
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Post by goldenbird on Jan 21, 2021 14:28:04 GMT -6
It sucks since I am not close with his parents. It's my aunt by marriage's son's son. We're not exactly close and I strongly judge them for not vaccinating their kids, but this situation is heart wrenching. As a parent it makes me feel ill thinking about going through that with my kid. And especially a week later to have no answers. If this were one of my cousins I'd known all my life I'd be in direct communication with them and be able to offer support.
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teraiin
Amethyst
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Post by teraiin on Jan 21, 2021 14:54:40 GMT -6
My mom said this morning that he's still having seizures. They've done brain scans and found nothing, no masses or reasons to explain it there. I'm very unfamiliar with epilepsy but I'm wondering if this is some kind of sudden onset, severe epilepsy. I think the plan is to continue to take blood daily and keep running every imaginable test on it. Anecdotal but my brother had sudden onset severe epilepsy develop (though he was older, around 18 at the time). Without medication he would just keep having seizures. It was a frustrating and scary experience. He used to to end up having to go to the ER any time he had any type of issue where he couldn’t keep his meds down (stomach bug, migraine etc) because a missed dose meant a seizure and it was hard to get things back under control once they started up. The ER would give him an iv with his meds. Over the years newer medications were developed and now he is on one that lasts in his system longer so there isn’t as much of a fear of a missed or late dose. But he has had no lasting impacts from the seizures, drives etc. I know this isn’t necessarily helpful but maybe gives a little hope that if it is a form of epilepsy then hopefully it can be treated well with appropriate meds. ❤️
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jt2378
Sapphire
Posts: 3,520 Likes: 6,733
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Post by jt2378 on Jan 21, 2021 17:07:53 GMT -6
I’m so sorry they are still going through this, that poor little boy. Keeping him and you all in my thoughts.
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Post by goldenbird on Jan 24, 2021 16:23:39 GMT -6
I have a good update! He hasn't had any seizures since Thursday which is great. He can't walk or eat right now so they are doing PT and OT to get him being able to do that. They think just since it's been over a week, nothing permanent. He will be moved out of PICU within a couple days. Unfortunately still no explanation for the seizures.
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hawkward
Global Moderator
Loss, Infertility
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Post by hawkward on Jan 24, 2021 16:25:01 GMT -6
That’s so strange, goldenbird, but I’m glad he’s doing better!
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Post by goldenbird on Jan 25, 2021 7:25:57 GMT -6
That’s so strange, goldenbird, but I’m glad he’s doing better! I forgot to ask my mom if they were giving him meds to try to stop the seizures or if they just stopped. But yeah. It's bizarre.
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Post by goldenbird on Feb 1, 2021 18:29:02 GMT -6
I have a final update on my little cousin. He is home and doing well. He is still on anti seizure meds and a little 'dopey' from them, but overall doing well. The doctors aren't saying he has epilepsy; they still believe the seizures were in response to a virus but never figured out what virus. Thank you all for the positive thoughts and prayers!
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STP
Diamond
Posts: 43,314 Likes: 314,708
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Post by STP on Feb 1, 2021 20:03:06 GMT -6
I have a final update on my little cousin. He is home and doing well. He is still on anti seizure meds and a little 'dopey' from them, but overall doing well. The doctors aren't saying he has epilepsy; they still believe the seizures were in response to a virus but never figured out what virus. Thank you all for the positive thoughts and prayers! Continuing to think of him and just send lots of positive energy his way.
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Post by goldenbird on Mar 5, 2021 3:56:53 GMT -6
Update in OP
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Lormor
Platinum
Sometimes I can gif and sometimes I can't.
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Post by Lormor on Mar 5, 2021 4:35:05 GMT -6
I’m so glad there is a diagnosis, which means a plan. Love to your family as you process the news and learn about Lyme.
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Pizzaslut
Ruby
*it’s a joke. get some hobbies.
Posts: 22,727 Likes: 131,010
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Post by Pizzaslut on Mar 5, 2021 5:18:58 GMT -6
I’m glad they finally have a diagnosis. I hope the treatment is successful.
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cnf
Ruby
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Post by cnf on Mar 5, 2021 5:36:07 GMT -6
I'm glad he has a diagnosis. Hopefully the treatment is smooth and effective.
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sweptaway
Ruby
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Post by sweptaway on Mar 5, 2021 6:51:37 GMT -6
What an ordeal. I hope he responds well and has a full recovery. My understanding is Lyme is tricky to test for but I'm so sorry they didn't catch this sooner. I'll me keeping your family in my thoughts.
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Eagles
Opal
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Post by Eagles on Mar 5, 2021 6:54:52 GMT -6
Oh goodness. I'm glad there's finally a clear diagnosis.
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kaimee
Bronze
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Post by kaimee on Mar 5, 2021 7:31:38 GMT -6
What a tough journey, bit I'm glad they finally have a diagnosis that they can treat!
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STP
Diamond
Posts: 43,314 Likes: 314,708
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Post by STP on Mar 5, 2021 7:40:21 GMT -6
He's been in my prayers nightly. I'm so glad there is an answer.
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Post by goldenbird on Mar 5, 2021 8:57:40 GMT -6
What an ordeal. I hope he responds well and has a full recovery. My understanding is Lyme is tricky to test for but I'm so sorry they didn't catch this sooner. I'll me keeping your family in my thoughts. He apparently didn't have any symptoms beyond the seizures. So crazy. And to test negative for it twice.
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Post by goldenbird on Mar 5, 2021 9:00:45 GMT -6
Thank you all for the prayers and good thoughts!
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Post by goldenbird on Apr 16, 2021 14:38:58 GMT -6
Sweet kiddo is back in the hospital today after 7 seizures yesterday. He's had a month of strong antibiotics for the Lyme disease. Meeting with a top neurologist soon to see if there's anything else that can be done. It's been just over 3 months since this all started and it just sucks.
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