Can this be caused by reflux

[Anonymous]

Hi there. Sorry I’m getting in so late on this. I agree with the others that it does sound like it could be a breath holding attack- but given the severity of the episodes and the frequency, I think that investigations are in order to make sure that you’re not missing something more significant.

My older daughter has breath holding attacks. I know that your doc said that young children can’t have them, but Sarah has done this since she was just a few weeks old. In fact, her first serious spell was when she was 1 month old at the cardiologist’s office. She was having an ultrasound of her heart, and she got really scared by the whole environment, she started screaming so fiercely that she turned blue, her eyes rolled back, and she was about to pass out but the doc blew into her face and she took a breath. Since then, it has happened so many times that I can’t even count. Now that we know how to stop it, we try to blow in her face to prevent the passing out from happening.

Like the others, she’s not doing it to throw a tantrum or get attention. It happens when she gets really scared, or hurt… now that she’s older, it also happens when she’s really mad or in a tantrum but that wasn’t the case before. Incidentally, she also has a history of seizures, but we’ve been told that the two aren’t related.

Something about what you’re telling us doesn’t sound right though, and that’s the frequency of the episodes. I really think it’s rare for a breath holder to have so many attacks.

Like the doctor, I would think that something else might be the cause, maybe reflux. Hailey used to have a lot of episodes during the day where she was choking and then turned blue, but she never passed out, and the scream followed. At night, she still has episodes where she’s been surprised by a fast bout of reflux, screamed, choked, and turned blue until we could help her to clear it.

I personally would ask for an EEG to make sure it’s not seizures, but I assume that was probably one of the first things they’ve done. Secondly, I’d ask for a pH probe. That will allow them to confirm the reflux diagnosis right away- they’ll be able to see if she’s refluxing, and if the timing of an episode is linked to a reflux attack. Like Ann Marie said, I would also ask to see a pulmonologist and cardiologist, if you haven’t already. You might also want to look into aspiration as a possibility.

Good luck. I hope you find some answers soon.

s&h’s mum2007-2-13 10:55:10

[Anonymous]

Sorry, I just wanted to add something. You mentioned that she is already being treated for reflux but that you haven’t seen a change in the behaviour. What are they treating her with, how much are you giving, and how are you giving it? Reflux meds, especially Proton Pump Inhibitors like prilosec and prevacid, need to be given a certain way to work- on an empty stomach and followe up with a meal 30 minutes later (unless it’s immediate release, like zegerid or a properly made compound). I personally would suggest asking for a PPI- given her symptoms, I would look at http://www.marci-kids.com, and get her on a good dose. Also, if it is a PPI that she’s already on, are you having it compounded? If so then there’s a good chance that it’s not being prepared properly. Don’t want to confuse you… just want to help you find the answer. Good luck.

[Anonymous]

good luck at the hospital….when she stops breathing..does she strart on her own? that could be another clue…Audrey when she has her apnea episodes she has to be suctioned out, she gets clogged with sticky icky mucous….but hers as i said is food intolerance related…

good luck with any future testing..keep us posted…just to add if its more than panic apnea stuff the blowing on the face actuals hinders more than helps—my mom tried that with dd, cuz she thought it would work, but instead A aspirated the mucous into her lungs..not fun….

[Anonymous]

Good point Shannon. I have done it a few times with Hailey, and it’s also caused her to freak out, and choke and ultimately vomit. With Sarah, it always helps though.

[Anonymous]

Thanks again to alll of you for your ideas, advices and support…. we are still at the hospital and this time I do not intend to leave until we have a diagnostic. My lo had a major “attack” yesterday which was witnessed by a few nurses…. who thought it was seizure type evtns. However, the neurologist still doesn’t buy it…. She is on a long-term EEG… with the hope that they will catch an event while she is connected to the EEG. It started last night, and so far nothing…. for the first time, I am *hoping* for one asap. So that we can move on. She had two EEG done previously, and both were nomal.. The GI don’t buy this being related to reflux. They think seizure…. So one team needs to convince the other (and us) in one way or the other. They stopped all acid reflux medication until the next event.

This is nuts. I feel like we are going through a nightmare, and eventually we will wake up. Tonigh will be my 12th nights sleeping at the hispital in th past 4 weeks. I am tirrrreddddd….. but willing to stay here as long as it take them to figure out what’s happening.

[Anonymous]

I am so sorry you and your little one are going through this…I totally understand wanting an “event” and staying there until someone tells you something! Crossing my fingers and sending all my positive energy your way.

[Anonymous]

I really hope they can catch one of her episodes soon and you can finally get some answers! Good luck.

I know how hard it is sleeping in a hospital room night after night. Have you considered a Ronald McDonald house? For one period while Bryce was in the hospital we stayed at one and it was so nice. You get a room and all your meals & food for $10/night. I know it’s hard to be away from your baby – even over night, but it might help you get some sleep and save money on food. Just an idea.

[Anonymous]

Hello all….. after 10 days at the hospital, we have a diagnostic. Iris’ episodes are due to epileptic seizures… and not reflux ! A new – somewhat scary – adventure starts here for us. We have great hope that the seizure will be controlled by medication and eventually go away…. but we are also prepared to face the worst. Thanks for all your support, but I will check out and look for an epileptic support group. Just hope I find a group as good at this one…

[Anonymous]

Hi Virginie,
I’m so glad you were able to find an answer! I’m sorry it turned out to be epileptic seizures though, that must be scary! At least you know what it is now and hopefully you can keep it under control. Good luck with everything! I hope you can find a good epileptic support group.

[Anonymous]

Goodluck Virginie. Having a diagnosis must be a relief…even if it sends you on a scary new path. I guess you have probably been told this but todays meds are very good and more often than not control most peoples seizures. Also a lot of little ones do grow out of them. Through my work I have certainly seen this to be the case. I cross my fingers that Iris is one of those. Goodbye and Goodluck.

[Anonymous]

I’m sorry to hear the news, but glad you have an answer now. Good luck and God bless your little one. I hope you find the best treatment for her and lots of support for you.

[Author]

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