EEG update- they want to sedate my baby, I can't do it since I think this is nothing

[jubilee]

First, let me say the EEG test is horrible, and I hope your babies never have to go through that! (In summary, the test is to read brain waves to detect epilepsy. They attach 26 wires to the baby's head- which gets him upset. Then they want him to calm down for 20 minutes to get the scan.) After almost *2 hours* of trying to hook him up and administer the test, we all decided it was a failure... he simply wouldn't calm down enough to do the test. It was a nightmare. I felt so bad for Logan. There is no way he'll be able to be calm for the test.

Now the ped wants to try again and this time have Logan be sedated for the test! I don't want him sedated, and in fact don't want to have him do the test anymore!! The tech administering the test has been doing it for 14 years, and he thought Logan wasn't even a canidate for the test because he is sure Logan doesn't have epilepsy. (I know he's not a doc, but he has seen babies with epilepsy for 14 years, and my ped sure hasn't!!) Logan is having the test because of a minor tremor that has happened only a handful of times.

My gut instinct is that it's NOTHING, just a minor nervous system development issue. I am now just sure this is nothing! How much do you believe your instinct? I want to just take a "wait and see" approach and not have the test. My husband is torn, he doesn't want Logan to have sedation but also does think we have to follow what the doctor says. I'm not sure what we will do. I've never "not followed" medical advice, but SEDATION simply to rule out something for a minor issue seems a bit over the top. At this point the next EEG is scheduled for Dec 19th, but I am considering cancelling it.

Anyway,thanks for listening...

[C99]

Hi, I haven't been reading the past few weeks so I apologize if this is a repeat, but have you considered getting a second opinion from a different pediatrician?

I'm sorry that you (and Logan) had to go through that -- it sounds dreadful.

[twins r fun]

Did they actually imagine they were going to get an 8 month old to be calm for 20 minutes after sticking 26 electrodes on his head!?

I agree with you that sedation isn't something to be taken lightly. In September I was sedated for the first time for a routine procedure and had a horrible reaction that nobody expected or understands. I'm sure it's rare, but the point is that some doctors seem to think that sedation is no big deal, when it really can be. They don't know how an individual person will react to drugs and to do it without a well justified reason is crazy. Jacob will have to be sedated for an MRI if we get one done and that is one of the reasons we want a second opinion before going ahead with the testing. Can you get a second opinion? If not, I think I would talk to your ped. about your concerns and stand your ground on your instincts. If something serious is going on with Logan the symptoms will occur again or get worse. If they don't then there was probably no reason to get the test. Obviously just my opinion! But I can say without a doubt that after my experience with sedation I think the risks and benefits need to be really considered.

[cara1]

Actually, sedation with Chloral Hydrate is not that big a deal, and the risks are minimal. However, your description of his "tremors" are not the most classic description for a seizure. Why not take him to a pediatric neurologist to see if they think an EEG is even necessary?

[amp]

I would also recommend the second opinion at this point. I think you have to trust your gut about not rushing into this EEG and sedation, but I think you shouldn't ignore your initial concern about seizures because you are scared (which I totally understand and sympathize with!). Talk to another doc or to a specialist and see what they have to say before you go any further. If nothing else, perhaps it will ease your mind if you do have to pub Logan through the procedure in the end. Hugs to both of you!

[nigele]

Julie,

Hi Julie,

I just read your post about having to possible sedate Logan for the EEG. I have gone through some issues with both myself and my son, Thomas that I wanted to share. First of all, I have had several EEGs. I can totally understand that an eight month old would be freaked out with all of the wires stuck on his head but just so you know, I never found the tests painful or even uncomfortable (just wanted you to know he was probably more annoyed than uncomfortable!)

My son Tom had a PH probe done when he was five months old in which they stuck a tube down his throat into his esophagus. The probe was left there overnight so he could be tested for reflux. You wouldn't think they would do such an "invasive" test on an infant for something as small as reflux, would you? His reflux symptoms were so atypical and we could not find any other diagnosis so the test was necessary. It turned out he DID have reflux after all, as well as sleep apnea. Even though Tom (but especially I) had a really rough time with the test, I was so relieved to finally have a diagnosis and be able to start treating him. Just wanted to add that I was so upset during the test as Tom cried and pawed at the tube that the hospital nurse gently suggested that Tom could tell I was freaking out and it was making things more upsetting for him.

Another thing I wanted to share, in case you are not familiar with me and with Tom, is that he has had two eye surgeries in which he had general anesthesia. After having gone through it twice with no problems, I am less anxious about the thought of having to sedate him for something (he almost had to have a CT scan at one point.) I think when something is new and unknown it is more scary.

Anyway, I don't know if you have seen a Pediatric Neurologist but, if not, you really should. They will know for sure whether the EEG is necessary at this point.

[jojo2324]

Julie, how terrible!!

I definitely think you need to see a pediatric neurologist. After all, they are trained in this specialty, and an MRI and sedation is not something to take lightly, especially with a little one.

And, I'm not trying to be trite or critical in regards to your ped, but I think epilepsy is a serious diagnosis to be making without the input of a specialist. Our ped didn't take it upon herself to diagnose Gannon with *asthma*...We went to a pediatric pulminologist first...And I think that epilepsy is far more serious than asthma!

Talk to your ped about your discomfort with sedation, and what the tech said...And if there is still some niggling fear on the ped's part, ask for a referral. This way you can get a solid opinion on what's really happening.

I'm so sorry you have to go through this. Keep us updated please!

[starrynight]

Is there anyway they could do it while he is sleeping or napping? Then he would be calm and quiet but not sedated. Or is there anyway they would let you wear him in a sling or something in hopes that might calm him some? Good luck!

The second opinion might not be a bad idea either. At least if another doc says do it too you might feel more comfy with going through with it.