how confidant are you in you child's doctor

[momofevan]

well i will start off with how my son was diagnosed with E in the first place....my husband had told me toward the end of november that he was noticing these "twitches" of my son's arm at night..(i work as a waitress so i was not home during these events) I did not believe my husband....i had even said something along the lines at maybe he was over reacting or maybe our son was just chilly.....

well low and behold i happened to be off on a friday night and had noticed the "twitches" they were in clusters...and it lasted about maybe 5 minutes..then he immediately went to sleep afterwards.....then the next day he did it again in the afternoon(again crashed out for about 2 hours afterwards) then again in the evening..and the middle of the night and then again on that sunday morning....i was starting to get really scared at this point so we called the doctor and she advised us to go into the e.r. because it sounded like seizures.... so we get there and they ask us a million questions..(to be honest the actual e.r. doctors were bone heads and one of them even had the balls to say.."you can put a gun to my head and i would tell you they are not seizures"....well anyway he decided to call nuerology down anyway...they did their exam and asked a million questions and then had witnessed a seizure in front of them.....they immediately ordered a CT scan and admitted him...the CT scan came back clear...but they ordered an eeg..which unfortunatly cam back abnormal.....

i will say i absolutely love his nuero team...and everytime i call and leave a message for the doctor she get back to me no later than an hour...has taken her time into explaining the meds and the next step in treatment... i guess we just got luckey.....

 

[Meetz1064]

There are

some docs who are just total TWITS.....and that ER doc proved it.

I'm sorry. But at least the neuro team made up for it!:bigsmile:

 

[RobinN]

It took us 4 tries before we found a neurologist that was worth the time, and willing to listen to alternative ideas. I had to learn quite a lot about this disorder so that I could communicate what I was living with. There still is a breakdown in the amount of knowledge that this doctor has in how the whole body is causing the symptoms. They still need to learn not to just treat the symptoms.

Such as in your post you say the EEG was abnormal. Doubt you will be told that certain food sensitivities will cause abnormal tests. Easier to play pass-the-next-med-please.

 

[momofevan]

It took us 4 tries before we found a neurologist that was worth the time, and willing to listen to alternative ideas. I had to learn quite a lot about this disorder so that I could communicate what I was living with. There still is a breakdown in the amount of knowledge that this doctor has in how the whole body is causing the symptoms. They still need to learn not to just treat the symptoms.

Such as in your post you say the EEG was abnormal. Doubt you will be told that certain food sensitivities will cause abnormal tests. Easier to play pass-the-next-med-please.

thanks robin..i will be asking the doctor this...although my son has no food sensitivities and had 2 eegs...one during the day...and one in the Ep lab overnight in the hospital...and there have been no drastic changes in his diet....he is scheduled for another eeg at the end of jan...

 

[RobinN]

What I have learned is that it doesn't have to be an immediate reaction to a particular food. It can be a sensitivity to gluten or a sensitivity to dairy protein as an example. This can lay hidden for a lifetime. Strange symptoms can occur over time that seem totally unrelated. I have seen asthma cleared up just from eliminating dairy. There are some folks that are sensitive to eggs. But it really goes deeper than that.

Do some research before asking your doctor. I have had a gastroenterologist that told me there is no connection between gut and the brain. Go figure...

 

[DanaC]

I will have to back up Robin, some things are very difficult to prove. And sometimes there is no will. I am very happy for you to find so fast a doctor that you can trust, I don't want to tell you not to trust him, because I know how important that is. It is however, our duty as parents, to do our own research. They are still humans, they do mistakes, and moreover, they are biased. I didn't find any conventional doctor ever interested in my daughter's well being as a whole, all types of interventions lead to other problems and never this things were explained and thought through. I hope you have a better experience. Good luck and may all things go only for the better.

 

[Meetz1064]

I am

also one of those for whom a diet change has made all the difference in the world. TRULY.

I went on the GARD diet, specifically a couple of years ago, and saw such a vast improvement, it was amazing. There were still some intestinal issues though and, as it turns out, I am a true celiac. YIPPEE. So going on the GARD diet was a blessing in disguise for me. Staying on the celiac diet is not as hard, and my seizures, are under control. When I do not eat right or miss some supplements, well.......my nocturnal focal and electrographic seizures show up, but the nocturnal myoclonic and nocturnal tonic clonics are still under total control.

So YES. Nutrition makes ALL the difference in the world. Feel free to PM me if you'd like.