Home › Forums › Infant Reflux Information › Pediatricians/Specialists › Neuro referral
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August 21, 2006 at 2:08 pm #11792AnonymousInactive
I took Sebastian to the ped today. He has been doing his head thing (putting his shoulder to his ear and kind of twitching) a lot this weekend and then he was doing it every few minutes this morning.
He has always done this just usually only a couple times a week. He had one episode where he was doing it really bad so the dr took him of Reglan incase it was a side effect. When I talked to the GI about it she said it was probably Sandifer’s (which is what I have always thought) Well after having the ph probe come back normal I was worried that he was still doing it. I thought it might be that his ear was bothering him or something.
My ped took a quick look at his ears and said they were fine and said that he wanted the neurologist to have a look at him. Of course I am happy that he is taking it seriously, but it is just really scary to have to go to the “brain” dr. It is much less scary thinking there is something wrong with his tummy then his brain. I was also surprised because they got him an apt for next Monday. It usually takes forever to get into a specialist so now I am worrying that he thinks it could be something serious.
I am still pretty sure it is a Sandifer’s type thing. He did it during the probe and the ph said 2.1. Also he has been hiccupping a lot and not sleeping as well and just being fussier in general. I am sure it is just that his prevacid is not working well enough. It is just still really scary though.
Thanks for letting me vent my worries. Dose anyone know what I should expect from the neuro apt.?
August 21, 2006 at 3:03 pm #11802AnonymousInactiveKatey:
No idea of what to expect but just wanted to offer support. I am sure things will work out OK. Anytime a little one gets sent to a specialist, you naturally assume the worst – I can understand how you must be scared. At least you are lucky to have a doctor that is willing to rule things out. It will be a long week but I am sure things will come back ok Hang in there!!
Robin
August 21, 2006 at 3:58 pm #11814AnonymousInactiveKatey, we have seen a ped neurologist for Sarah, and we also had an EEG for Hailey to rule out seizures. So I can tell you a bit about what to expect. I also wanted to assure you that while it typically does take a while to get into most pediatric specialists, due to the potential severity of the reason for referrals, most pediatric neuro’s keep a slot open each week for new referrals. That way a child who may have a severe issue doesn’t have to wait months and months. Sarah was having seizures, and our doc suggested the referral and I went nuts with worry, assuming that maybe she had epilepsy or worse a brain lesion as the cause of her seizures (when prior we were just assuming them to be febrile). We got in within 3 days, and I was also thinking the same thing like you… like wow, this must be serious to get in so fast. In the end, everything turned out fine, and going to the neuro was so great for us, because it put our mind at ease about things that we were worrying about anyhow. If you are concerned enough about Sebastian’s “sandifer’s” to worry about it or to mention it to your doc, then it’s really a good thing to see the neurologist. He might say it’s nothing, or he might say, it’s likely nothing, but best to check it out with an EEG or other testing. Either way, you’ll be better off knowing for sure.
As for what to expect, here’s what we’ve experienced with our neuro appointments: The doctor does a quick developmental check (mostly asking you questions but also getting him to do a few things) to make sure that his development has been on track. He asks you about your pregnancy and your delivery and any past pregnancies. He asks about the child’s behaviour and temperament and about any problems that the child has had during his life to date. He’ll ask you about the behaviour in question, how often it’s happened, when, how Sebastian acts when it happens etc. It would be helpful if you could catch it on video and bring in a video tape of an episode so that he can see exactly what your talking about. From there, the doctor will decide how to proceed (ie. monitor, follow-up appointment, or any follow-up testing).
I think when it comes to neurological issues, they tend to take things as a better safe than sorry approach. I know it’s hard not to get worried about that, but really I think it’s a good thing. For both my kids, thankfully, things turned out all right. I hope the same for Sebastian. Good luck.
s&h’s mum2006-8-21 16:0:13
August 21, 2006 at 4:19 pm #11825AnonymousInactiveI just wanted to offer support and hugs as well. We’ll be thinking of you and
looking for an update.
August 21, 2006 at 4:40 pm #11829AnonymousInactiveKatey
Just wanted to send some hugs your way. I will be praying that all goes well with teh appointment. I understand how scared you are – but it is great that you are getting an appointment so quickly. Hopefully they can rule out everything and attribute the behavior to Sandifers… keep us updated please
August 21, 2006 at 5:02 pm #11830AnonymousInactiveThanks so much everyone. It really helps to have people who understand.
Lori, Thanks for all the info. I really am glad that we are getting it checked out. He has done it off and on for so long, it has always been a worry in the back of my mind. It makes me feel better to know what to expect at the apt. I was able to get a little bit of the head thing on tape. It is so hard because he only does it for a few seconds at a time. By the time I get the camera on and warmed up it has usually passed. It was a miracle that he actually did it at the drs today. He did it about five times while I was talking to the nurse. Of course he did not do it for the dr but the nurse was able to explain it to him.
Thanks again for all the support! We are going to visit my parents this weekend so it will be a nice distraction. I will let you all know how it goes on Monday.
August 21, 2006 at 8:22 pm #11847AnonymousInactiveKatey,
Sending my hugs and prayers.
I bet he just needs a higher Prevacid dose and it’s Sandifer’s, but the neuro check up is a good idea to ease your mind and rule out anything else.
Good luck and please let us know how it goes.
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