EEG?

[Anonymous]

I was just wondering if you guys would go ahead with this test under these circumstances.

I just spoke to the nurse who will do Hailey’s EEG on Friday, and she said that since Hailey can’t do oral sedation they will have to give her an IM injection. She said that this is a deeper sedation, and has increased risks of breathing problems which is why they don’t like to do it. She also said that it can often cause too much background noise to interpret the EEG properly, and can cause them to misread the results. (Then she said, but since I am CHOOSING not to do oral sedation, then this is the risk we’re CHOOSING to take. She did not understand that Hailey can’t do oral sedation because she has a severe oral aversion and won’t take oral meds. She will most certainly gag them up and vomit even if they succeed in getting them in. No one has ever done it successfully.)

I should mention that after getting her on 30mg of prevacid, while her reflux is still awful, she no longer has Sandifer’s and no more eye rolling. Occassionally when she refluxes quickly and it comes out of her nose, she’ll scream and arch, or sometimes if she chokes while taking a bottle, but other than that we don’t see it anymore.

The ped just wanted to be cautious, and I agree. He just thought that Hailey is so fussy so we may as well do anything to rule things out, especially because of Sarah’s seizures. But I really hate to do a test that is putting her at an unnecessary risk, especially when the results might not even come out right, and I’m pretty sure that she’s not seizing (though I know it’s better safe than sorry).

Would you do it under these circumstances?

[Anonymous]

Wow! I really have no idea what I’d do in your situation. Like you said, I’d like to rule out any possible problems, but that sedation sounds kind of scary, especially if it can cause problems with the EEG itself.

Kaelyn had an EEG last summer because we thought that she might be having seizures. They didn’t do any sedation at all, although I’m guessing that is due to the fact that she was older than Hailey. The tests turned out fine and I’m really glad that we did them, but we didn’t have to worry about those sedation risks. So, I’m really no help at all. I’m sorry.

[Anonymous]

I would say to them then you try to give her the oral sedative and see what happens! That is horrible! I would probably just go ahead with other sedative and see how things go. I will be praying for you and Hailey!

[Anonymous]

We had two EEG’s with Dylan and both had to be non sedation, so I had a screaming child for almost 45 minutes as they were pasting the probes to his head (why someone hasn’t invented the cap with all these things already attached, I do not know!). I think we figured whatever we had to go through to get the results we were willing to do. We were not comfortable with not doing the test if it had some information that we could use to help him.

Not sure if this helps or not, but I would let them do what they feel is necessary to get the most accurate results.

[Anonymous]

They won’t even try to put on the probes unless she is already asleep- Hailey doesn’t sleep in the hospital, hence the sedation. They find it too difficult to get accurate placement. I really don’t want to do a test that can’t be interpreted properly. It’s so frustrating. I worry about giving her the injection as well because she has been so “snory” lately and they said that children who already have breathing problems are at higher risk for breathing complications from this injection. My husband really wants to cancel it and rebook when she is a bit older. I’m so torn. Thank you for the input.

[Anonymous]

Lori,

I’m so glad to hear that Hailey is doing a little better on the 30 mg of Prevacid. I’ve been meaning to ask you about that, because I remembered that a few weeks ago you said you were able to get her a prescription for the 30 mg. That’s great that the sandifer’s and eye rolling is gone. Finally some good news!! Hopefully the eating will improve soon now that maybe she feels better with less acid backing up.

Anyway, wasn’t the EEG scheduled because of the sandifer’s and eye rolling???

I hate to give my two cents about anything so important, but I really agree with your husband. I’d put it off until, and if, you see any more worrisome symptoms. I think these doctors are far too cavalier when it comes to sedating children. The risks are there, and I wouldn’t do it unless she was showing some real concerning symptoms of a seizure problem. I especially don’t like their attitude that YOU are CHOOSING this risk. The fact that this drug can alter the results is very discouraging, too. Why take the risk of this sedative for something that’s likely to be inconclusive?

Oh, (on another topic) I was thinking of you these last few days because Myles has developed this habit of pulling my hair, yanking my lower lip, scratching my face, and otherwise grabbing and pawing at me when he is drinking his bottle. (He won’t stay swaddled anymore, so his arms are free, and he is taking advantage of it!). I remember you posted that Hailey was pulling your hair when she was bottle feeding. This morning I couldn’t take it anymore (espcially the lower lip pull – ouch!) so I gave Myles something to hold in his right hand (it was a little bottle of Mylicon that just happened to be beside me), and he was content to hold onto that while he ate. He stopped grabbing my face and actually drank more than usual. Have you tried giving Hailey something to hold onto when she’s feeding? Maybe it would help.

Anyway, about the test. I know you’ll make the right decision. You’re a great mom!

[Anonymous]

lori, what kind of results did hailey have on a ph probe and endo?

[Anonymous]

Oh my gosh, Christine, don’t even get me started!!! We saw the GI on the 28th of April after almost a 4 month wait (only GIs from this group can do the endos on babies who are less than one year or less than 22 pounds). They told us that there was a 3-4 month wait, and that we would get the test date within 2-3 weeks. Well it’s 3 weeks later, and after numerous phone calls, we finally have a scope date of July 11th. After that it will take 4-6 weeks for the results. When the results come in, the Gi will call us to book another appointment to discuss them. If at that time he feels it’s warranted, he’ll do a probe- which he doesn’t like to do on feeding aversion kids- but only on the prevacid to see if there’s breakthrough acid.

Sorry, the short answer to your question is: We haven’t had them done yet!

[Anonymous]

Lori – such a difficult decision. I am sorry they are only offering 2 types of sedation. Don’t they have some they can insert through rectum??? I am really surprised at that. Matthew had some diazepan (spelling) through a suppository for his endo (i think it was diazepan, because we got a prescription for it when we got the tube, because he cried for 12 hours straight the first night and doctor wanted him sedated the second night). They should ahve something like that… can you find out.

I would go ahead and let them sedate her orally. You never know with these kids. They are always surprising us, or at least Matthew is. She may keep the meds down long enough to become a bit sleepy and she may not throw them up? Then at that point, you can discuss with the DOCTOR, not the nurse, what you want to do?

I am so glad that Sandifer’s is gone!! YEAH!!! Hopefully Hailey is feeling better and there will be some improvement in her eating soon.

[Anonymous]

Thank you Thais! Yes, I’ve read that diazepam suppository is an option for GI procedures. For EEG it has to be a kind of sedative that causes minimal to no distortion of brainwaves. I think we might try to do it without sedation. I’m not comfortable with the injection because of the reasons above, and I REFUSE to do oral sedation. We have been trying so hard to get Hailey past her feeding aversion, and I absolutely won’t let them fight with her to get it in her mouth for no reason. We’ve had to do it before, and she screamed so much that whatever went in came right back out and they had to try again (for meds, not sedation). I really believe that a lot of her oral aversion comes from the forcing of meds down her throat- at one point losec twice daily, domperidone four times daily, mylanta once daily, and lactulose twice daily! I’m too scared to go down that road again. Hopefully she’ll fall asleep, otherwise we’ll consider the injection if we have to, or reschedule and try again. Unfortunately there is no doctor present during the test- only the nurse and the tech (but I find the nurses are usually more knowledgeable then the docs anyway). BTW, good luck with the test on Friday. Keep us posted.

[Anonymous]

Lori – we had the same issue with Andrew and oral sedation meds. The oral stuff tastes horrible – it has that strong, bitter, “alcoholy” taste, and Andrew would projectile vomit at the first drop. I’ll never forget the time he was schedule for an echo at about 8 or 9 months and they planned to give him that stuff – I warned them ahead of time that it wouldn’t work. When we got there, I told them again, and I got the “oh, you just need to know how to give it to them so they can’t spit it out.” I assured them that I had given this kid numerous meds DAILY – he wouldn’t “refuse” it or “spit it out” – the taste would make him barf. But I tried – he happily opened his mouth, I gave it to him, and he barfed across the room. Then they brought in this other nurse, who they said could get any baby to take a med – never failed. She waltzes in, with a totally condescending attitude like I was some kind of wimp – gave Andrew the stuff again – and he projectiled all over her. My husband and I couldn’t wait for her to leave the room so we could high-five each other and Andrew!

In any case, Andrew’s eeg’s were always done unsedated, and there was a time when we skipped a few echo’s because there was no easy way to sedate him and they didn’t want to have to put him under with a general since he was asymptomatic. As he got older, he could do the echo’s unsedated. Also – I have never heard of an IM (intramuscular?) sedatve – Andrew had IV sedation for CAT scan, but he was probably about 4 or 5 then. Could you ask your ped about the IM sedation? They might be making it sound more scary then it really is because they just prefer the oral (it clears the system faster so less time in recovery, which equals less work for them.) I think I agree with your husband – if you are really uncomfortable with the injection, hold off for now since she seems better on the prevacid.

[Anonymous]

Thank you Tricia. We’ve had to delay the test anyhow. They called to get her health profile to ensure it was okay, and were not happy with the fact that her stridor has been bad again lately and the snoring is back. I told them that it’s from teething and reflux, but they said that they won’t sedate if not necessary on children with a “compromised respiratory profile”. So we resceduled. I’m going to ask my doc about it. I’ve called to get his opinion.

[Anonymous]

HI Lori,

I know you posted on this somewhere else, was trying to find it. Anyway, I just have to say again that the only way to get good results are from sleep-deprived, not sedated, EEG. Until she began seizure meds, Emma had HORRIBLE sleep issues. So, I can relate. We always kept her up VERY late the night before & woke her up around 4 or 5 in the a.m. Someone sits with her in the backseat & we bring TONS of toys to occupy her & keep her awake in the car (drive to hospital is anywhere from 1 to 1 1/2 hours depending on time & traffic).

She is AWAKE while they put the leads on. I would think they would not want to place leads while the child is asleep for fear they’d wake up. Emma screams her head off & last time sweat so profusely, her hair was soaked. Leads were popping off, it was not fun. It took almost an hour before leads were on, staying on. And, by then, Emma had worn herself out. She drifted off as I lay right near her on the bed.

If you do decide to go forth with the EEG, I’d only do so without anesthesia. I can only keep stressing this because there are certain medical conditions that make anesthesia very risky (riskier than normal in kids). So, whenever we can avoid having Emma be put to sleep, we do. If there is a chance Hailey is aspirating, I would surely not do anesthesia. The risks from anesthesia are far too great in this situation, I think. What is the point of risking being put under if test results may be altered because of it?

Just my two cents, maybe 3 cents by now…but also, I’d wait until after the endo & probe (if needed) to see if reflux or other GI problems could be to blame for her fussiness. Since the Sandifer’s symptoms are not occurring, & you don’t see any othere activity that could be seizures, I’d wait. Also, with your other daughter, I thought she had febrile seizures? I’m not sure, but I thought that’s what you posted.

[Anonymous]

Thank you Lauren. It was actually your advice in your other post which prompted me to question the sedation further. I know that oral chloral hydrate can achieve a good state of conscious sedation with minimal distortion to the beta waves. I assumed the IM injection was the same, but after looking into it further it was not. It is a deeper and riskier sedation, that makes the test hard to interpret. We are going to talk to the ped today. My older daughter had hers done with chloral hydrate because she also couldn’t fall asleep.

Yes, Sarah does have febrile seizures, but one was without fever. She had six in less than a year, which is why they were concerned (for febrile seizures, most kids only have one or two at the most during the first six years of life and then tend to outgrow it). Since her EEG is normal, and five of them happened with a fever, the neurologist is assuming that they are febrile only.

Thank you again for the info. It helped me to make a more informed decision.

[Author]

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