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

[Caynuns mom]

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!

[vettechmomof2]

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

[rachabetic]

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!

[Caynuns mom]

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.

[Erin Grace's Mom]

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!

[Caynuns mom]

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!

[Caynuns mom]

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

[sugarmonkey]

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.

[Mama Belle]

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!

[wilf]

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..

[jendean]

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.

[Mistync991]

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

[StillMamamia]

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!

[Caynuns mom]

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!

[Ellen]

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?

[Lee]

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!

[spring]

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.

[selketine]

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.

[suzyq63]

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!

[OSUMom]

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:

[Caynuns mom]

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!

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.

[mom to a sports nut]

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)

[tandjjt]

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.

[3js]

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

take care:cwds:

[BeckyND]

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:o

[Mama Belle]

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!

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.

[Mama2H]

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

[Jacob'sDad]

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.

[Mary Lou]

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"...

[Caynuns mom]

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.

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!

[Kaylee's Mommy]

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:)

[michelleissweet]

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.

[Mama2H]

Will your endo give you the referal?

[Caynuns mom]

Will your endo give you the referal?
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.

[Mama2H]

Ok, I thought it was your pediatrician that was refusing the referal not the endo. My appologies :o

[Caynuns mom]

Ok, I thought it was your pediatrician that was refusing the referal not the endo. My appologies :o
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.

[deafmack]

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.

[purplewowies]

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.

[Caynuns mom]

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.

[hold48398]

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))))))))))