Coping DURING choking episodes

[Anonymous]

Shauna, I am so sorry that you have to go through this…it sounds terrifying. I can’t say that I ever have experienced this, so I can’t give you any great advice on the basis of experience. I am also no expert on this kind of thing. But I wanted to post because it sounded like you really needed someone to talk to.

Firstly, I am sure that your panic and distress is absolutely normal for someone in your situation…I can only imagine how terrifying it is for you. But…it has happened a few times now and he and you and your hubby have been able to work your way through it! You are so much stronger than you think…you know what to do and you do it. Of course sometimes you need a break…that is also normal.

Secondly, I would get back to your Dr right away…phone, turn up, continue to hassle until they are prepared to see you and talk about this with you. They are not just there to prescribe meds, a good Dr should be trained to talk to you as the mum and help you through this. Have you got a family Dr that you can talk to??? Also if your Dr knows your bub has severe reflux then it is up to him/her to do something now…really waiting to see a GI just seems a cop out to me.

I am not really familiar with compounded meds but from what i have read this sounds like a low dose…I would hassle the Dr until I at least got the marci-kids reccomended dose. These choking episodes need to be reduced…for your little one and for your sanity.

Shauna, this is tough and it is OK to fall apart sometimes…you have been through a lot and this is not the perfect (or even OK) first wonderful few weeks that we all expect. But it will get better, I am sure it does. You know after reading all these posts that things often are up and down, but in general things look up.

Honestly, if you are really worried do not hesitate to go to the ER. With babies you can never second guess. In my experience all Drs say if in doubt bring them in.

I hope someone who has been through this sees the post soon and can give you some more practicle advice based on their experience.

Hang in there and keep us posted.

[Anonymous]

Therese said it all and said it so well. Sending you best wishes and hope things get better soon. Take care of yourself too and it’s ok to feel like you do. We have all been there and understand where you are at. Feel free to ask questions anytime – we are here for you!!

Robin

[Anonymous]

Hi Shauna and welcome.

I can feel your anxiety in your post and understand those scared feelings for different reasons, but I feel for you in this! I wish I had magic answers, but I am not sure. I would tell you that if you are alone and this happens and you are not sure what to do, call 911. It is there for a reason, so you need to feel like you can call for help if you need it. Hopefully, then, in the ER you will get to see a ped GI immediately and either be admitted to figure out what to do, or at least go home with a good immediate plan. The emergency room is there for these issues and you are not doing anything wrong by going there. Even if Avery recovers by the time you get there, it doesn’t exclude the fact that you are very worried and want someone to take charge in helping you figure out how to help him.

I wish I had something better to say, but I will pray for you and your family to get a plan soon to help Avery.

Hang in there and vent any time you need to!

Ann Marie

[Anonymous]

Hi Shauna, and welcome,
I’m so sorry for all you’ve been going through. That must be so scary!

The only thing I have to add is that we are using the same compounded Prevacid and we give Bryce 2ml 3xday. He did so much better with that third dose. He’s been on that dose since he was pretty little.

Good luck with everything! I hope you can find out what will help Avery and things will start to improve soon. Hang in there!

[hellbennt]

Hi & welcome!

I’m not one to write a lot, I’m known for posting links

but I’d FAX FAX the doctor to get that prevacid where it should be

no baby should be scared like that or her/his parents/caregivers either!!!

I would CALL marci-kids somehow and get dr philips to talk w/ your doctor

I would demand a monitor? thinking aloud as I type- it wouldn’t help you to stop the attackes but you would know what was happening in the middle of the night, but this could cause you even more stress…hmm…

reglan seems to be the first meds prescribed by peds, “Just Because.” It’s probably just what they were taught and that’s that. Jonah was even prescribed reglan in the nicu and they had DONE testing and they pretty much knew he didn’t have DGE. Personally, in retrospect, I think they gave it to him to cover their butts legally- he was having apnea episodes (stopped breathing) and rather than have a dead newborn on their hands, they figured the possible risks of reglan, and the help it MIGHT provide, sure outweighed the apnea episodes.

anyway, there’s a lot of bad hype about reglan, but it has worked wonders for some babies, with diagnosed/VERIFIED DGE, in small doses. there ARE other motility drugs out there such as bethanecol (sp?) and erythromyacin (sp?)…I feel that if a baby has been given the stomach emptying scan (this is not just an Upper GI- it’s a specific test looking for DGE) and doesn’t respond well to other drugs, then by all means trying reglan is worth it…

in the meantime, I would also demand some zantac & dose at 10mgs per kilo….

HTH

laura

[Anonymous]

i am sorry i dont have much advice on the choking episodes, but from what i can remember of shane when he was that age… he did choke or more like a choke cough at night when he was trying to sleep. the car seat didnt help.. the only thing that did was having him sleep on my chest.. i know it was miserable, but i felt safe that way. thats grea that he hasnt done it while sleeping.. that is very scary.. but i personally would just keep an eye on him and have him close.. where does he sleep now? also do you think he is MSPI? why is he on alimentum? from our experience the alimentum did tend to make him reflux a bit more when he was younger because of how thin the consistency was. i know we started thickening shanes alimentum when he was around 2 months old.. i dont know how you would feel with that?

i hope another mom that has dealt with this more can help.. and i sincerely hope that it improves! and you get the peace and pacience you diserve through all of the episodes.

and if you havnt seen a ped. GI specialist yet, i would HOUND your doctor to get you in ASAP.. & hopefully the GI would have more advice for you!

[Anonymous]

I totally relate to the choking episodes, although many of ours were at night, (even with her sleeping on my chest). Hers we know now are food related so she hasnt had one in a week (we were trialing food again since shes 7 months now)….but I get scared and shakey and teary, and often Im home with just me and my 2 year old (dh is at work)….its okay to fall apart…its very scary…I usually grab the bulb syringe (we have one in every room and in the diaper bag) and suction her out and try to talk to her in a calming voice to calm her and me (and her brother down)….Really all I can tell you is how we coped….and still cope. The monitor at night helps a ton! (Your dr. should get you one, we rent ours from the hospital) And really you should bug your dr or your gi to get in ASAP….yeah your child most likely will clear the airway, but there are secondary issues to worry about (aspiration pneumia (sp?)…they need to take it seriously…..although my ped didnt until we did have an abulance ride cuz she kept choking (we suction get her clear and it would happen again) and she did aspirate a ton….

Its so not fun, and it is scary to watch, and usually once the episode passes I just sit with her and take a ton of deep breathes and try get calm….these started at birth and shes 7 months now, so it does get better….

Does your child choke up fluid or mucous? just curious…ours is a thick mucous substance

[Anonymous]

I have had some experience with the choking episodes. The one time that it was really bad was after I found out that my sister was smoking cigarettes in her bedroom while my mom was babysitting. That nicotine really makes the reflux worse, which made Adriana reflux repeatedly for an entire night and choke alot.

I would make sure that nobody is smoking anywhere near your child. I don’t know if they are, but its just a thought.

My doc always said they are okay as long as they do not turn blue. So it seems that your PED needs to do something different for you.

Good Luck!!

[Anonymous]

When Kaelyn was hospitalized for her choking episodes they told us that the best thing to do when she had one was to lay her face down against my arm with her head resting in my palm. Then you bend your arm so she is upright and supported by your arm. Then you can pat her back with your other arm. Our initial instinct was always to angle her down so she could spit up whatever was choking her, but they said it’s actually easier for them to swallow it back down than it is to get it to come up.

Oh, and the monitor was an absolute lifesaver for us. She was on it whenever we put her down to sleep and it gave us so much peace of mind.

[Anonymous]

I understand what you are going through. My baby had choking episodes too that caused her to turn blue. She was rushed to the ER because of them, we stayed because we found out that she had pneumonia, probably due to aspiration. We stayed for two weeks dealing with a “blue” baby and a week in intensive care. They sent us home on an apnea monitor. But the episodes didn’t end there. She choked a whole lot and each time I can remember the pain that you described… how I just wanted them to end and where my sanity was going? I used to blow in Quinn’s face to get her to take a breath… sometimes that worked, sometimes it didn’t . What Kim described would work best I think… but it ‘s hard just to try and get through them. I remember each time it happened having to hold myself back from calling 911 each time too. It’s heartbreaking to have to watch your child struggle to take a breath. Quinn still to this day has choking episodes… she rarely turns blue from them anymore and they hardly happen, but each time an immediate flashback comes of our first ambulance ride. That’s scary. My heart pounds out of my chest too.

Quinn’s prevacid dose was never high enough. The doctors wouldn’t prescribe it high enough… but I took it upon myself and went to marci-kids.com and saw that she was only taking half of what she could have for her weight. I switched her prevacid to the highest dose and that worked wonders. Also, I’ve never had much luck with the liquid form of prevacid. After two months of a screaming baby, we switched her to the solu tab and that helped tremendously. I would recommend the solu tab over the liquid form any day.

If your child is having that many choking episodes, I would demand that they give you an apnea monitor. I would push to see GI quickly and switch your pedi if he is of no help in that matter. And if you still can’t get anyone to listen, then babies r us sells something called an angel care monitor. That will alarm if it does not detect any movement (including breathing) in 20 seconds. I’ve heard that they work great for keeping a scared mother sane at night.

I do wish you luck!

-Sarah

[Author]

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