Dr. Issues

[Anonymous]

I wanted to get your opinions on my issues with our GI doctor.

My son has issues with seizures and acid reflux. He has been extremely moody and miserable for most of his 8 months of life so far. We are in the process of trying to control his seizures. When he gets upset (which is very often) he starts to instantly reswallow, which makes him upset till he starts screaming, and he reswallows more and more until he is so upset he has a seizure. It seems to be a vicious cycle.

Hunter also seems very uncomfortable to be held and carried, like the pressure on his tummy hurts, then he starts to reswallow. He HATES sitting up, and will throw himself backwards or lock his legs so he cannot bend. The point is he reswallows SOOOO much, and he is so miserable.

Anyways, after our various hospital visits this past month, we kept calling the GI doc and expressing concerns about the reswallowing and the reflux. He kept dragging his feet about getting a PH probe and endoscopy, and now he tells us that with Hunter’s new anti-seizure meds, its too risky. The doc does not seem like he is concerned about the reflux and even got so frusterated with me he said “he’s got reflux, OK? its not going to go away for awhile.”

We really wanted to get those tests run so we could have some peace of mind that nothing else was wrong, or to check if his reflux was bad enough to require surgery. Now, we dont have that information and here I sit watching my son reswallow and scream. The doc says the reswallowing isnt hurting him (I beg to differ).

Anyways I guess what I am getting at is that I feel that the GI doc does not seem concerned about Hunter’s problems and is quick to point all the blame at his seizures. I agree the seizures may have a lot to do with all his problems as a whole, but the fact is, the reflux has been there since day one, and the seizures started at 5 months old.

So, what I need to know is, should I ditch this doc and get a second opinion, or do you think that the points he makes are valid, and that theres not much we can do for him at this point. I find it hard to believe at this day and age, that they cannot at least explore what is going on with my poor child.

thanks!

[Anonymous]

I think that if you are concerned enough to need to ask, you should get a second opinion.

[Anonymous]

I second the second opinion… We also have been told nonstop that Hailey’s reflux is only mild and not severe enough to cause issues (How they know that is beyond me as we’ve had no testing and she wet burps all day long, and arches several times during each feed, after, and during the night).

Anyhow, we too are waiting for yet another opinion, because I too think it causes pain.

My ped also doesn’t think that Hailey’s reflux is bad (and I love the guy), but today he told me that many children have reflux and most of them do not go on to develop feeding aversions. He thinks that the feeding issues and aversion is all part of her personality (which is very anxious and stressed out) and her inability to cope with the reflux or anything else that she finds stressful. I do believe that to be true on some level, because of course, we all cope with pain differently, but that doesn’t solve anything for me.

I wanted to ask you, how does Hunter’s reswallowing and/or getting upset trigger a seizure? I hope you don’t mind me asking, it’s just that my doc is sending us for an EEG to rule out seizures/epilepsy as Hailey still has Sandifer’s. Given her irritability, he is concerned that maybe she has seizures…sigh… since my two year old has them.

Back on topic now… I hope your second opinion takes you seriously.

[Anonymous]

Dawn

I think that you should get a second opinion… how do they know there is no reflux if they have not tested him for it?? I think you said that he was starting prevacid… that should help a bit. IF you see any type of improvement in the meantime, you can be sure that it is reflux related…

Why does he think an endo is dangerous… did he give you specific reasons… has he considered having him off teh meds for a few days before.

Sorry you are going through this… so hard.

[Anonymous]

I agree with everyone else. I would definitely go for a second opinion. I had issues with my GI not taking me seriously and dismissing us. I sought a second opinion and now we are finally getting the testing done that our initial doc wouldnt do.

I’m curious too, why is it dangerous to do a probe or scope?

[Anonymous]

When Hunter reswallows, he gets very angry. He gets very hyped up and keeps reswallowing, sometimes as many as 5 times a minute. After he gets all this aggression and emotion, he upsets himself so much he has a seizure. Its amazing because when he sleeps, he is sooooooooo peaceful. The doc said getting too emotional, fatigue, pain, hunger….pretty much anything can cause a seizure.

Hunter is on steroid meds for his seizures. The GI doc claims that putting him under will be dangerous since hes on those types of meds. He said the anesthesiologist (cant spell sorry!) will be very hesitant to do it. He cannot just get off the steroids for a couple days….you have to taper him off drugs like that or else he will go right back to seizures.

This is why I want to get a second opinion. I just feel he has been dragging his feet and treating our issues like they arent that important. He actually said to me when my eyes were teared up at the hospital, “I guess you guys wont have any more kids”. I was so upset I couldnt even look in his general direction. Nice bedside manner, doc.

[Anonymous]

What an a** Dawn! These docs can be so rude and patronizing! Definitely get another opinion ASAP, if for no other reason that to have a doc who is kind and sympathetic. It is too hard having to go through such things, and on top of it have to deal with that kind of arrogance. I’m so sorry that you are having to go through this.

[Anonymous]

I would find another doc ASAP. You may not get different answers
but at least you would know you are doing all you can for Hunter.
And…you won’t have to deal with his arrogance anymore. As if
things aren’t tough enough for you right now…..What a !!!

[Anonymous]

dawn, are the steroids stopping the seizures? are they sure that it is not sandifer’s from uncontrolled reflux—which is often mistaken for seizures. alot of babies have had to move on to prevacid, which seems to be a better med for reflux more often than not. if reflux is not controlled, it will burn on the way up, and then on the way back down when they swallow. also, sometimes even if the reflux isn’t burning, you still can have an uncomfortable sensation, which can cause babies to be fussy. it would be extremely difficult to work with a doctor with so little respect for you that he would make such comments. i’d be looking for a new doc. if the seizures are not considered dangerous, then why not taper off the meds so the tests can be done. why medicate your child with steroids (yucky stuff!!), if figuring out why he is getting so upset by his reflux in the first place might be able to eliminate the seizures all together? hope that rambling sentence made sence!! kevieb2006-3-9 21:8:24

[Anonymous]

Do they have to put him under or can they just sedate him with something… you may want to check. I know that Matthew was a little younger when they did his endo, but they do not put children under for endos at the hospital he goes to until they are much older…

For babies that are really quiet, they do it with nothing! For babies like Matthew, who are just so nervous, they sedate him with some diapezam (not sure how you spell this)… it is some type of enema that really leaves them groggy but lasts a short time and they are always conscious, just sedated…

Again, i think you are starting prevacid… i hope that with that you see an improvement and then you can tell your GI that he has no idea what he is talking about!

[Anonymous]

I think I answered another of your posts. It totally sounds like sandifer’s syndrome (which LOOKS like seizures, but isn’t). Seizure meds can make it worse! Please read this link:

This is from a hospital that are experts in the field of pediatric GERD.

http://www.marci-kids.com/rigidbodyposturing.html

My son had Sandifer’s that showed up at about 2 weeks old (he was on zantac at the time). His “seziures” stopped around 3.5-4 months of age when I took matters into my own hands and upped the dose higher than the docs said. (I didn’t have the internet at that time – wish I would have!) With prevacid, less acid is produced – so less acid comes up for them to swallow. My son was “swallowing” every couple of seconds and wrythed around and screamed all day long until I got his meds high enough.

Sandifer’s is when the acid is burning the esophagus so bad that it triggers the brain to tell the body to do “seizure-type” movements. Don’t be fooled that it didn’t show up until 5 months of age, that just means it didn’t get “bad enough” until then. My son had ea/tef so he has massive reflux becuase his LES doesn’t close completely, so his seizures presented at 2-3 weeks old.

I totally know what your’re going through, I have been there, and I WOULD seek a second opinion and get off the sezuire meds and get on a high dose of prevacid/prilosec (1-1.5 mg/kg per day). Also note that erythromiacin is an anti-biotic and can make reflux worse by killing the good bacteria in the digestive system and throwing the system off wack.

p.s. my son’s middle name is Hunter!

lansima2006-3-10 14:50:24

[Anonymous]

I really agree that you need a second opinion! My nephew is going through a similar thing right now. He was on steroids for his seizures and stuff and refused to eat for a while. They went to many different dr’s before someone really knew what was going on! I was wondering what happened to you and Hunter-I am still praying for you!

[Anonymous]

We are seeing a neurologist and she did an EEG on him and found his brain waves were abnormal and consistant with the Infantile Spasm definition. His seizures were also forward thrusting ones where he had clusters of them and his head and limbs thrust forward and his stomach goes backwards (like hes being punched). Those types of seizures also match the definition of the spasms. I am just going by what the docs tell me, thats why I want a second opinion about the reflux because if thats his problem, then I want to get that taken care of and maybe the spasms will stop.

One thing that I have noticed a lot lately is that when Hunter is put in an upright position or when I hold him while carrying him, he starts to reswallow and sometimes sounds like he is gasping for air. He HATES being in an upright position and will throw himself backwards. Anyone experience any of this?

He is soooooooo gassy all the time too. He chugs his bottles and swallows tons of air, not to mention the air he swallows when he screams. Then burping makes him reswallow. Vicious cycles!

It just kills me to see this poor kid suffering every day. I just want him to smile, and I dont even get that much nowadays. I just want him to want to enjoy being a baby and play and be happy….hopefully soon. <sigh>

[Anonymous]

Marsha, we are going to see a neurologist to have Hailey’s Sandifer’s evaluated. They are going to do an EEG, and I was told that they can differentiate true seizures from Sandifer’s because with Sandifer’s the EEG will be normal. The last sentence of that article you sent in your other reply states that an EEG should be used to differentiate Sandifer’s from infantile spasms which require intervention to control. (My doc does not believe that Hailey’s Sandifer’s are infantile spasms, but said that it could be other kinds of seizures. Infantile spasms have a certain pattern on an EEG that have to do with the amplitude of the observed waves, or something like that.) It is possible to have both GERD and other conditions, including seizures, and not controlling the seizures properly can cause delays or neurological impairment. I know that we are all just trying to help one another, and that no one wants their child to be on meds, but I do believe that sometimes meds are needed to control seizures. My older daughter takes meds when needed so that she won’t seize, and she takes a high dose of ativan to control things. Giving prevacid will help with reflux, but will not control seizures that are true seizures. Repeated seizures can cause damage to the brain for some seizure types. That is why meds are needed. I would hope that a neurologist would know the difference when evaluating an EEG. (I don’t mean to sound harsh, I just wanted to communicate some info.)

I do agree that giving the right dose of prevacid is needed to control the reflux, and being more comfortable can only help the seizures.

Dawn, I really hope that you find a doctor who will look at Hunter’s reflux and help to control his pain. I know how frustrating it is to be ignored, and I can imagine how frustrating it must be to have his GERD ignored now that he’s been diagnosed with spasms. I hope that he gets some relief soon.

s&h’s mum2006-3-10 17:4:49

[Anonymous]

lori, you’re not being harsh harsh—-i think everyone was just making comments without knowing all the facts—-that’s why i had asked if they were sure it was seizures and not sandifer’s. i guess part of what i am wondering, is that if the seizures are not causing damage (i think you said that dawn?) and the reflux seems to be setting the seizures in motion, then maybe the lesser of 2 evils would be to taper off the meds so that the tests could be done without the danger your doctor is talking about. then you would know if the reflux is worse than the doc thinks, or if there is a complicating factor, such as a hiatal hernia—-and if that is the case, then treating the reflux better would make reflux much less of an agravating factor in his seizures. hope that made some sort of sence!

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