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We're still here...We're just not that well

Discussion in 'Parents of Children with Type 1' started by Caynuns mom, May 1, 2008.

  1. Caynuns mom

    Caynuns mom Approved members

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    I'm hoping maybe someone on here might know whats going on. His Endo doesnt think its Diabetes related. Here goes:
    Bare with me on the lenghth but this is FREAKY

    A month ago Caynun came down with an ear infection and a congested cough on a weekend which resulted in an ER visit since his Dr.s are not in on Weekends. Spent 3 hours there and home we went with ear meds and a childs z-pack for the wet cough he had developed. All healed up feeling good until 2 Wed's ago. At about 3:00am I woke to check his Bg which was a perfect # but he was twitching a little bit in his hand, then in his foot, then in his other hand, then in his chest area, then in his other foot, then to his hand no real rhyme or reason to where he would twitch next. It went on for a couple of minutes then stopped. The next morning he woke up with a fever 101.6 (bg fine) gave him some Tylenol fever came down 4 hours later gave another dose of Tylenol and he was 99 didnt really want to eat all day gave drinks (bg still fine and no ketones all day). 2.5 hours later spiked a fever of 103.9 :eek: To the ER a quick as possible. He throws up once BG is 48 and he's hooked up to IV with sugar water then when his Bg is back up switch to saline and give a bag of antibiotics,they run every test for strep, flu, and everything else and he's negative on everything. His fever gone about 1 hour of the 5 we were there. before leaving the ER my daughter notices him twitching yep sure enough he is so I call the DR over he see's it checks him out doesnt know why he's twitching thinks its from the high fever but he didnt have a fever the fist time I noticed it :confused:
    Heres the weirdest point.
    I take him home from the ER he sleeps for about 2 hours wakes up and him and I are watching TV all of a sudden he crys out "Mom! Mom!" now his eyes are in a fixed state (like staring) I'm sitting right next to him I say "Caynun? Are you alright?" His eyes still fixed he crys out again "MOM! MOM!" I say "I'm right here!" I wave my hand in front of his face...no response....I lightly tap his cheeks...nothing. I pick him up and he comes around his eyes are OK I set him down and boom He crys out again "MOM!" then turns to me after I tell him I'm right here his eyes are fixed again then he startes moaning so I think he might have to throw up so I hand him a dish while I'm asking him if he has to throw up he takes the dish and has no Idea what it is and tryes putting it on his head and tryes putting his face down into the dish. Then all of a sudden he's fine we watch TV about 1.5 hours later he goes to sleep. While I stay awake totally freaked out!

    follow up with his Ped I get the same answers about the twitching and think the weird episode was a night tremor??? WTH he wasnt asleep when it happened!! they retest for everything and its all negative say its a virus give a script for more antibiotics he's back home all is good. Then last night I noticed him twitching when I woke for his middle of the night Bg check Bg good and no fever. Wakes up all is good for about 2 hours then fever of 101.9 back to the Dr. cause I want some answers and still dont have any. I'm thinking the twitching and the episode is seizures but the Dr.s dont think so. Now my son has been asleep since 4:30 he dosnt want to wake up but he's responsive so I'm thinking he's just worn out. his Bgs are fine. I'm FREAKED OUT and cant sleep from the worry!
     
  2. vettechmomof2

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    Oh boy, you poor guys. Lots of prayers and well wishes being sent.

    Ask for a referral to a neurologist if you are not getting answers. Has any of the docs offered other ideas to this? It could be a precursor to a fever, i guess but what about febrile seizures. Are they discounting those?

    Keep us posted when you get a chance.
    Allene
     
  3. rachabetic

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    Man...that sounds tough and really scarry! Sending you big ((((((((HUGS))))))))

    My cousin has been having night terrors that started off just at night while he was sleeping, but now he is having them durring the day as well. So it still could have been night terrors. Is there anything that he is stressing out about lately?

    I don't really have any ideas, but I am sending you good thoughts and well wishes! I hope you find some answers very soon!
     
  4. Caynuns mom

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    As of today the Ped wants me to try stopping the twitching if when I press on the part of the body thats twitching and it continues to twitch then they will send us to a neurologist or if he's doing it with a fever.
     
  5. Erin Grace's Mom

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    Is he taking any medications for his ears, etc.? My friend's daughter had similar symptoms and it turned out to be a rare side effect of a medication she was taking to help with recurrent ear infections. If you are not getting the answers you are looking for, then seek out a pedi neuro.

    Big Hugs! We are here for you!
     
  6. Caynuns mom

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    Rachel the only thing he could be stressed about is not feeling good! I didnt know one could have "night tremors" during the day I'll have to check into that!
     
  7. Caynuns mom

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    Christine he had stopped taking his ear meds about a week and a half before the freaky episode.
     
  8. sugarmonkey

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    My niece and nephew both have epilepsy. I hope you don't mind I read out your post to my sister. She said that is what her kids do. The diagnosis they were given was dormant seizures. I'd get him checked by a neurologist as soon as poss.
    Hope he feels better soon, and you can get some sleep.
     
  9. Mama Belle

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    Sounds to me like seizures. Take him to a neurologist. I don't know why your pedi would want to wait on this. This is not normal, you know it and your mom instincts are yelling at you. Listen to them!
     
  10. wilf

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    This does not sound like anything D related, but i would echo others and say it is something to have checked by a neuorologost. I wouldn't let it wait if it was me..
     
  11. jendean

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    that is acting a lot like a viral infection. Sleep disturbances are very common with high fevers. I would not worry about twitching in his sleep at all. That happens with fevers.
    Keep the fever down, and keep the sugars as good as you can.
    Good luck.
     
  12. Mistync991

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    wow that scares me just reading it much less watching my child go through it ...good luck my thoughts and prayers are with you
     
  13. StillMamamia

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    Get him checked out by a a neurologist...just in case!

    Sending you hugs...I would've been scared too...hope you can get some answers soon!
     
  14. Caynuns mom

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    I have also told the Ped that my brother had mini seizures when he was an infant and grew out of them and the Ped still wont send me to a neurologist. I am trying to find out how to go around the Ped with our Insurance since the Ped has to refer us to one. I'm also trying to look into the policy on second opinions there are some steps I'm gonna have to take to get it done but I dont mind I just want answers now! My big gripe is that I had to fight a Ped to test my son for D and now I've gotta fight to have him tested for something else when the heck are the Dr's gonna learn that a mothers instinct is the first place they should start!

    I appreciate all your responses and support keep 'em comming!
     
  15. Ellen

    Ellen Senior Member

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    Push with the insurance for any way around the referral. I agree that a pediatric neurologist should be consulted today. When you asked for the referral, what was the pediatrician's objection? I'd put the pediatriician on notice that you want an appointment for your child now and insist the pediatrician put it in writing why (s)he refuses to give you a referral as you want documentation. How far are you from Shands? Would your ped endo give you a referral?
     
    Last edited: May 2, 2008
  16. Lee

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    I am shocked that the ped is refusing - one of the MAJOR clues of a seizure is the complete exhaustion afterwards. When my oldest had seizures as a baby - she would tense her entire body - but then fall to an exhausted, dead to the world sleep for hours.

    Ask to speak to the head of the practice - or the ped's supervisor about this. I do not think you are over reacting at all - it could be an inner ear infection that makes him feel dizzy, so he 'blanks' out, but it really doesn't sound like it.

    I am saying a prayer as soon as I click submit for your little boy and that it is nothing serious!
     
  17. spring

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    Those exact symptoms used to happen to me from the age of 7 to around 19. I was diagnosed with "petit mal" seizures after I hit my head when I was seven. I had to take anti epileptic medication all throughout my childhood for it. I remember once around age 10 when I had a bowl of cereal w/milk in front of me and for a few seconds I didnt know what it was, so I ended up pouring all the milk over my head :S so what you were saying about your son reminded me a lot of myself when I was younger.

    I would HIGHLY recommend you take him to a neurologist, all he needs to have is an EEG.

    Good luck!

    ---------
    Sarah type 1 on a pump.
     
  18. selketine

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    Indeed it could be nothing but why would the pedi want to take that chance and not give the referral? I agree with others that I'd want to have a specialist take a look at this just to be on the safe side.

    Can you switch to another pedi easily? Perhaps talk to another pedi office and maybe they could help you out. I don't know if you have a waiting period, etc. This pedi sounds like too much of a "gate keeper" - I'd not want to return to them in any case.
     
  19. suzyq63

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    I hope you are able to see a pediatric neurologist. Depending on what part of the brain the seizures are in, there are all sorts of odd symptoms. Twitching is definitely a possible symptom. Trust your mom instinct! Unfortunately, it can also take a while for doctors to diagnose seizures. It took us two months and many EEGs before the doctor finally saw the seizure activity on Alison's EEG. That being said, I hope these are not seizures!
     
  20. OSUMom

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    I haven't posted because I don't know what to do about the doctor situation. :cwds: I'm so thankful we don't have a HMO - I don't have to follow what the doctor says - I take straight to a specialist when I think it's necessary and did with a pediatric urologist. What if you went to an urgent care and that doctor says he needs to see a specialist? :confused:

    My thoughts and prayers are with you as you figure out what's going on with your son. {{hugs}} :cwds::cwds:
     

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