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Anyone have young kids with Seizures?

Discussion in 'RD's Lounge' started by WildHorses24, Sep 9, 2019.

  1. WildHorses24

    WildHorses24 Well-Known Member

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    Shot in the dark, seems we have all kinds in this community!

    My 7yr old starting having Petite Mal seizures over the summer during Allstar Baseball, we just assumed he was over tired or the heat. It wasn’t until an episode at the beach during Jr Guards (in the water) that we started to realize this was something more and come to find out... Absence Seizures!! Wife and I felt like a pair of jackasses for not acting sooner. After a visit to the pediatrician we are noticing them much more often, more intense and lasting longer. It’s hard to watch your son go through these as a parent and feel helpless. He crashed on his bicycle and razor while having them, we can’t help but be helicopter parents now.

    CHOC is saying 4 months for an appointment and Miller’s can maybe get us in sometime in October if we go get the EEG. Anyone gone through this have any advice? Any natural remedies we could try in the meantime? It’s killing us being in the dark right now with school and fall sports.

    Thanks for the vent.


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  2. rivermobster

    rivermobster Club Banned

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    Oh fuck bro...

    :(

    My son has Lyme. We have Kaiser.

    We switched insurance companies to try and get him what he needed, but ended up going back to Kaiser.

    Getting the help you need has a Lot to do with the medical insurance you have (as if You didn't know this).

    I hope you find the help that you need.

    :(:(
     
  3. TPC

    TPC Wrenching Dad

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    We went though it when we had custody of our Niece Nicole.
    So Cal Children's Hospitals are booked months out.
    CH kept telling us it was epilepsy and NFW was it epilepsy.

    Finally, we took her to UCLA Mattel and they pinpointed the reason with a proper diagnosis and treatment. Her rare condition was named after the very UCLA Doctor that diagnosed it in Nicole.
    Her condition only appears in young girls so I can't give you any help with that, but try UCLA:

    https://www.uclahealth.org/mattel/pediatric-neurosurgery/

    Maynard has been going through severe health issues for the past 6 years. Again, Children's hospital appts booked 3 to 4 months out and they kept going down the same paths of treatments with no results.
    We turned to UCLA and they are helping and we are still at it but much better results and answers and no months-out appts.

    St Judes has an amazing Children's Neurology Research program and treatment. Consider that if you hit more dead ends. It's free and they are on their game. Don't let the distance discourage you. The kids and families there are from all over.
    All I can advise is keep at it.
     
    Last edited: Sep 9, 2019
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  4. rrrr

    rrrr Well-Known Member

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    I hope both of you can find help and successful treatment of your kids. It must be a huge worry.
     
  5. Havasu blue label

    Havasu blue label Well-Known Member

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    My son Kevin had them up to 5 yrs he is 27 now what we did was go to emergency tell them at check in he just had one the will see him and admit hopefully children’s hospital Los angels great hospital you might have lie a bit but that hospital has tons of illegals getting service good luck
     
  6. WildHorses24

    WildHorses24 Well-Known Member

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    Our general did say he “most likely” will grow out of them by his early 20s. Funny my wife said the same thing yesterday about the ER. We have a PPO high deductible so that would be an expensive way to get an appointment but sadly that’s how the system works.


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  7. WildHorses24

    WildHorses24 Well-Known Member

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    @TPC
    Thank you. We are finding that out, keeping on them daily gets you in. I’m sure all wives here are just like mine when it comes to mama bear’s cubs!!
    I hadn’t thought of StJudes. A buddy’s daughter had a liver transplant at UCLA, luckily they didn’t wait around for CHOC as she almost died from it!


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  8. sirbob

    sirbob Well-Known Member

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    For what is worth our PPO - Blue Shield, made me sign a document this year that says if you go to the ER and it turns our not to be an emergency, I will be responsible for all billing.

    Good luck with your son - health problems are no fun.
     
  9. Xtrmwakeboarder

    Xtrmwakeboarder Well-Known Member

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    Sorry to hear about this, I couldn't imagine the stress....

    Above is what I would do, especially if it's starting to be more frequent. I'd risk the $ if it meant a better chance at getting my child treated. I've had to do it with my wife, and I'd do it again in a second. We were insanely nice to the RN and Dr. once she was admitted "buttered them up", and still had to push very hard for MRIs. One afternoon in the ER and the issue was diagnosed, which would have taken months to get an appointment and diagnosis. That just wasn't an option for me when loved ones are involved.
     
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  10. BajaMike

    BajaMike Well-Known Member

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    So sorry.....he probably will grow out of it. Maybe a child psychologist because sometimes its stress, not caused by you but just life in general for teen age kids. Good luck.
     
  11. WildHorses24

    WildHorses24 Well-Known Member

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    Agree, it’s hard to watch him while he’s having one. We’re trying to just go direct and get the EEG ourselves, I’d rather spend the $2k on a test with results than having my 7yr old poked and prodded in an ER. It all just sucks when you spend $15k a year for insurance and still put up with this bullshit.


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  12. Kbach

    Kbach Well-Known Member

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    I feel your pain. Seeing your child having a seizure is something that you’ll never forget.

    Our daughter had febrile seizures (7 that we know of) starting when she was a little over 2 with the last one just after she turned 6. She had them mainly at night about an hour after going to bed. After the first two, any time we would hear her make the slightest noise in her bedroom we would immediately get up and check on her. 99.9% of the time it was nothing but the times she did have a seizure were extremely scary. My wife was amazing - solid as a rock under that pressure - calling 911, giving the operator info, dealing with the paramedics, etc. and meanwhile I was a mess that couldn’t even think straight.

    She hasn’t had one since Dec of 2016 (again, that we know of) and has hopefully outgrown them but the human body can throw curve you a ball any time.

    She’s had a few ambulance rides, numerous Dr visits and tests and all of the “experts” say that they were febrile and that there should be no long term effects. Fingers crossed that we never have to deal with one again.

    I sincerely hope you get the medical care your kiddo needs as soon as possible. I wish I had a magic number for you to call to get seen by a Dr but I don’t.
     
  13. TPC

    TPC Wrenching Dad

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    Diagnosis is an outstanding program on Netflix. Check this out:

     
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  14. Lumpy

    Lumpy Well-Known Member

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    This is my niece....go here!!! Start with the resourses. Contact my brother and sister in-law if you need more help.

    https://www.calliescause.org
     
    Last edited: Sep 10, 2019
  15. WildHorses24

    WildHorses24 Well-Known Member

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    Wow, as hard as it is for me to watch my son I can’t imagine what you went through. I pray she’s out grown them. The silver lining if diagnosed as Petite Mal is he’ll grow out of them. In the meantime watching him turn into a statue basically paralyzed for 20seconds at a time is tough to watch. Thank god these aren’t painful physically for him. My “man child”is a tough kid but takes other kids making fun of him pretty hard.
    IMG_3987.jpg


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  16. Cole Trickle

    Cole Trickle Member

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    Sorry to hear this :(

    My 55 year old co worker started having seizures 2 years ago. She has Kaiser and they have been pretty good. Seizures came from no where and I think the thing she struggles with the most is that there is no "why" it started happening. She has been poked and prodded 6 ways to Sunday looking for a answer or cure and unfortunately regardless of how much she spends on tests or random medical treatments it kind of is what it is....sucks

    stress,diet and sleep seem to be big triggers for her.
     
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  17. gqchris

    gqchris Well-Known Member

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    Hearing things like this really gets me so infuriated on how our Medical system works here. Is this what we have come to? A healthy, young boy has incapacitating seizures, and we have to think of ways to get our kids in for tests and make people listen by being the squeaky wheel or lying about our income?!

    What the hell is going on with our country! Why are the middle class being punished and health care is being yanked away from us?

    My wife has been having palpitations. Not your average a few a day type. We are talking back to back, multiple rhythms etc. in the hundreds a day category. I know because A: I have them also and B: because I worked on an ambulance in my first career. I have a portable EKG, and BRING IN the actual rhythm strips when she is having it to her appointments so they can see exactly. They act like I'm committing a crime! Just to get to a specialist, they have to work with the Med Group, get Authorizations, then you make an Appt. months out. Then you fill out all the same bullshit paperwork every visit. Then you pay out the ass. Its the biggest scam I can think of.

    Sorry just ranting. But it really pisses me off that our kids are being affected by this fuckery now as well.
     
  18. Havasu blue label

    Havasu blue label Well-Known Member

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    Just talking to my wife about your son said she just read a article about diets and keto came up about seizures
     
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  19. overtime

    overtime Boobs we all love um

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    Look up articles on CBD OIL. I have seen it work wonders on kids that have really bad seizure disorders.


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  20. stephenkatsea

    stephenkatsea Well-Known Member

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    Our wonderful 15 year old extremely athletic daughter was diagnosed with MS. We immediately turned to the USC and UCLA Medical Centers. They were both outstanding. She received very early medication via USC and UCLA Pilot Research Programs. She is now a healthy 37 yr old mother of 4. But, her MS remains the Elephant in the Room.
     
  21. HNL2LHC

    HNL2LHC Well-Known Member

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    I did read all the post yet but will go back and do so when I have time. Just wanted to post up so maybe you will have some direction ASAP. I am so sorry to hear of the challenges your family is faced with. Please know that you are not alone and if you are in a place and don’t feel right find another hospital.

    Don’t allow the healthcare system to give you a date so far out. You don’t want any damage to occur from the seizures. Try another place that specializes in this.

    They are out there!!!!!

    My wife is currently going through treatment for a tumor that was the size of a lime. no one in Hawaii could operate on it so we went to the mainland. We are so please that we found UCSF. They are incredible. They have pushed appointments to fit with our needs. To have everything under one roof is so helpful as well. We don’t have to tell our story each time we moved through the process.

    I came in contact with several families that have been so helpful to guide me through the process. There is hope out there for you and your son. You just have to push your way through the process. Keep you head up and before you know it you will be looking back and enjoying life once more.

    My mother, wife and I worked as a team. We would meet before each appointment and after to hone the path that we were navigating. It took a lot of time. I suggest that you find someone that could help you in that capacity. Your family could become exhausted and it is nice to not have to bear the burden alone.

    Also if you have any questions please do not hesitate to reach out.

    Best of luck to you and your family!!!!
     
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  22. HNL2LHC

    HNL2LHC Well-Known Member

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    This is what you need to do as well. Find out the issue and go to the person who know most about it. My wife found the guy that started brain mapping and that was needed to remove her tumor without loosing speech or being paralyzed.

    You got this. Whatever you do don’t let just anyone tell you they can do it without 100% certainty. I have met a couple of people that have had issues because they were not at the best doctor and they have complications.
     
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  23. ToMorrow44

    ToMorrow44 27 Advantage TCM 800efi

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    My 1.5 year old son had a febrile seizure back in May while out on the boat. We were about 40 miles away from where we launched at. Luckily a good sam stopped and showed us the nearest marina, got him on an ambulance. Luckily it just seems to be a freak thing for him, hasn't happened since. But I know how you feel, scary as hell, and pains you to see them going thru it.
     
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  24. WildHorses24

    WildHorses24 Well-Known Member

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    Just wanted to say thank you to all who responded on and off the boards. There’s even a couple who I haven’t had a chance to reach out to that left numbers! It was great to hear everyone’s experience and know we’re not alone on the emotional roller coaster! CHOC still hasn’t returned a call for an appointment but we’ve already seen a neurologist and he went for the 1hr EEG today through Millers. I’m still blown away by all this, the tech today said he highly recommends a 24hr EEG to better diagnose SUDEP risk, (my biggest worry). My big guy had 6 seizures in the 1 hr appointment today.
    I have a feeling desert season will be put on hold this year or at least no riding alone... along with travel ball and football until we get this under control. He’s already crashed a bunch of times on his bmx, razor and skateboard while having one. I can’t keep this kid still.... but I’m okay with that! Thanks again RDP.


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  25. HNL2LHC

    HNL2LHC Well-Known Member

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    Good to hear that you are making progress.

    We went through some of the challenges with my wife. There are good places out there that will help you family. If you are some place that that doesn’t feel right than move on to another. We ad to do that a couple of times.

    Once we got to UCSF after the EEG and they knew what they were dealing with the wife was on meds that day with the seizures behind us. There was not doubt in their mind of the issue at hand.

    We are now traveling to UCSF on a regular basis to be in a place that puts us first. It is worth the piece of mind. It also allows continuity of care. The flow from one area to another is so easy. No more waiting 3 weeks to get an appointment in the new providers system.

    We also have come onto contact with many that have moved on from other medical facilities to UCSF and the horror stories are so sad.

    Best of luck to your family and I pray that your son gets the help that is needed.
     
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  26. Tireman

    Tireman Well-Known Member

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    THIS ..TRY IT
     
  27. oldschool

    oldschool Well-Known Member

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    I watched an interesting documentary called FAT:A Documentary. It starts with Jim Abrahams talking about his son who has epilepsy and how the ketogenic eliminated his seizures completely. He stumbled on the information and was amazed and pissed that none of the doctors knew anything about it. Seems that with the development of new drugs($$$$$) the diet option faded away. Check out the doc, it’s very interesting.
     

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