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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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    Our Ped IS the head of this Pediatric practice so that wont work but a great idea none the less.
    I am taking everyones advise and I'm gonna try everything and see what works. The insurance is state insurance so I'll be hurdeling over and around their political labryinth of roadblocks. I'm loaded up on caffeine and ready to start the day off fighting.
     
  2. mom to a sports nut

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    It sounds like some type of subclinical seizure to me. He needs an EEG and if it is happening more and more you need to get them to refer him to get one soon. Have you asked the ped about seizures in particular? (I have a son with a seizure disorder)
     
  3. tandjjt

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    I had a spell like that last year after a sinus infection led to a steroid shot, antibiotics and decongestants - my head went to twitching so bad that I had to go to the ER twice... they had to give me big doses of benadryl and a medication that is for parkinson's disease to make it stop.

    They decided it was a "dystonic reaction" to some of the meds. Regardless, I was referred to a neurologist, just in case, because it was unusual.

    Your ped should not be hesitant in referring you - I wouldn't like that at all.

    Also, did he actually say the issue was "viral" or a "virus"? If so, giving antibiotics was the wrong call as they don't help viral infections... bacterial infections are treated with antibiotics - viral things have to run their course. If this is the case, then that is 2 big strikes against him and I would look for another ped.
     
  4. 3js

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    I hope you guys get some answers soon! How frightening:(

    take care:cwds:
     
  5. BeckyND

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    I agree with the others...your son needs to see a neurologist. Hopefully they will do an EEG. It is a painless procedure that measures the brainwaves when a person is awake and sleeping to help diagnose seizure activity. Your in my thoughts:eek:
     
  6. Mama Belle

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    To me the major issue isn't so much the twitching (which is concerning by itself), but the major episode that he had with you while completely awake (above). That sounds very scary and to me sounds exactly like a seizure. There is no way it could be a sleep disturbance because he wasn't sleeping! What did the doctor tell you when you explained to him that Caynun wasn't asleep during this episode? I just don't get it.
     
    Last edited: May 2, 2008
  7. Mama2H

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    Can you ask your endo to give the referal? I would at least try :( I am so sorry Caynun is going through this :mad:
     
  8. Jacob'sDad

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    I have a son with a seizure disorder. What you are describing sounds to me like a petty maul also known as an absence seizure. He needs to get a sleep test done where they have him sleep and do an EEG. Any seizure activity will show up.
    If he does have a seizure disorder it can be treated with seizure medication to minimize or eliminate them. It may go away over time. My son does not have seizures any more that I am aware of and does not take seizure medication any more. The neurologist says that he would STILL test abnormal with an EEG, but his brain has figured out how to work around the problem.
     
  9. Mary Lou

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    our thoughts and prayer are with you, Nikki, and your family.

    Stay strong and keep us posted.

    You are Cayman's advocate. Treat your ped with respect, but don't let him push you around. I don't understand why you wouldn't get the referral, "just in case"...
     
  10. Caynuns mom

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    I explained to the Ped that he was NOT sleeping during the episode, he did NOT have low BG, and he did NOT have a fever during it. He was fine a minute before talking with me and laughing about a commercial that was on then all of a sudden starting crying out to me. I dont get it either and its driving me crazy. I'm agressive and to the point with the Ped telling him that there IS something wrong with my son I'm the one that is experiencing the problems I'm the one who is with him 24-7 and I KNOW something is wrong.



    Someone else had asked if the Ped was saying it was Viral yes they said they beleive it is either adrenal virus or coxical (I may not be saying it right) virus. They said the reason for them prescribing the antibiotics was mostly due to him being Diabetic when a diabetic is ill their ammune system is even more comprimised and they wanted to protect him from catching anything else while dealing with this virus that needs to run its course. The other reason for the antibiotics was because he had these white pustules in the back of his throat that spread onto his gums the next day then went away the following day but yet he tested negative for strep 2x, flu 2x, and tested negative to the other bacterial tests 2x. we'll probably end up with some other infection due to the antibiotics. I'm living in a nightmare right now and I just wanna scream! not to mention what my sons dealing with!
     
  11. Flutterby

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    My first thought was seizures.. I'd take him to a neuro asap.. obviously something is going on. whether the fevers are related or if he just happens to be sick is something you need to find out..

    the episode with him on the couch and staring sounds like a seizure to me.. I'd push this situation as much as you have to.. don't let them brush you off.. something is obviously going on..

    does he remember anything that happens afterwards.. especially when he was calling out 'mom'?

    I hope you find out whats going on and its something that is an easy fix:)
     
  12. michelleissweet

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    No way would i wait on a referal to a neurologist i would insist on a referal. I thought maybe it was seizures from the fever. A friend of mine had her son at walmart in buggy when he just started seizing never had one before. They rushed him to ER and said was seizing due to fever spiking to quickly.
    You sons does not sound like that though. My goodness dont wait around on Dr.s go ahead and tell them what you want done, rather it be MRI or to see a neuro Dr. ASAP.
     
  13. Mama2H

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    Will your endo give you the referal?
     
  14. Caynuns mom

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    I'm fighting with them right now demanding a referral. I've got 2 calls into other peds in my area waiting to here back from them I gave all the information to the nurses and they are going to present it to their Peds and theyre supposed to call me back if one of them thinks its seizures then I'll switch over to them immediately and get the referral from them. I havent gotten an answer from my insurance company yet on how to get around all this and to go see a neurologist I'm waiting on a call back from them too.
     
  15. Mama2H

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    Ok, I thought it was your pediatrician that was refusing the referal not the endo. My appologies :eek:
     
  16. Caynuns mom

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    No actually Its my apologies I'm not fighting with the Endo It is the Ped I'm fighting with. I have a call into the Endo also.
     
  17. deafmack

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    Great Scott's Ghost.:eek: The kid was having seizures. Didn't the doctors notice it. Even my reading your post told me he was. Dylan does the same kind of twitching as he is heading into a full blown tonic clonic seizrure. (grand mal). It will start on one side of his body and work itself all the way up one side and down the other. You must have been so scared. I know I am when Dylan has seizures and I have been dealing with them for 16 years. Ask for a referral to a Pediatric Neurologist. It could be diabetes related and illness related but with them happening so often I would still get it checked out. Poor kid. Sending a ton of (((HUGS))) your way.
     
  18. purplewowies

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    It sounds to me that it is simple partial (actions that he's not controlling, but he mostly is aware of what's going on) and/or complex partial (actions that he's not controlling, and he mostly is not aware of what's going on) seizures.
     
  19. Caynuns mom

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    I'm glad most everyone on here is thinking the same as I am about the seziures but I swear the Ped thinks I'm out of my mind/over reacting. By the way my Peds office called me back but not on my home Phone they called and left a message on an alternative number given if they cant reach me at my home phone(i didnt get the message until 6:00pm). I have been home all day never out of ear shot of the phone! Like that wasnt on purpose. now I have to wait until Monday:mad: unless we have more problems over the weekend.
     
  20. hold48398

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    Gawd Nicki, I am just catching up. I am so sorry you are dealing with so much:(, and now you have to fight the stupid pediatrician on top of it:mad:. I hope you can get Caynun to a pediatric neuro soon. Sending you loads of hugs in the meanwhile!! ((((((((((hugs))))))))))
     

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