I've been making some updates to the end of my vomit plea post.
But this deserved it's own post:
First of all THANK YOU everyone for all of your suggestions, I'm digesting them all, going to copy many of them and MAKE Kaitlyn's doctors do something!! I've read every single one of them (here and on Stacy's blog too, thank you Stacy for posting my plea on your blog:
ThePreemieExperiment
Mainly though this post is a huge sense of "relief" I'm feeling tonight. I feel like jumping for joy and elation.
I think I know can better understand why I get so depressed and can't stand feeding Kaitlyn. I mean REALLY can't stand it. I think I may have been serious mental alert-watch myself if it wasn't for my nanny doing the majority of the day-time feeds 4 days a week. There is NO way I could feed her 7 days a week. NO WAY. My husband caught me the other day bawling while sitting feeding Kaitlyn, slumped over, at my wits end. (I don't normally post about this stuff). (oh, and my heart goes out there to all of you readers who have to feed a feeding disorder child every meal every day....This is serious stress for the mother here and worth a whole post on the subject.)
We started K back on Periactin 3 nights ago (so 2 full days of feeling the effects). The first morning after the first dose (5ml) her morning feed was amazing, she ate her entire bowl (or more correctly we fed her as we always do) of oatmeal, (that we can usually hardly get down with all the chocking/coughing/pghelm) in 15 minutes!!!!. And this happened with no pghlem whatsoever! The rest of her feeds also where pghelm-free until dinner.
We went all day with no vomits until the night-time feed, when she was showing some minor (not as bad as normal) signs of pghelm/coughing/throat clearing so I stopped the feed without finishing, BUT it was too late and she emptied her stomach on a throat clear.
Today (the 2nd day) we gave her a nap-time 2nd dose of Periactin (smaller, just 2ml) in addition to the night-time dose and lo and behold it was a NO VOMIT DAY.
The drug is supposed to be sedating, but I haven't seen much of that. She still took an hour 1/2 to go to sleep tonight (after giving it to her, which can be normal for her after putting her to bed if she got a long nap in).
But what I have to say the most amazing thing was when I fed her dinner tonight was that I got her whole dinner in with no pghlem. She even wanted to eat. She asked for the spoon and took about 6 bites of her own food (then refused, so I fed her the rest). I was finished in about 15 min max. It was actually a pleasure. a PLEASURE! we had fun together and giggled and played.
The love I'm feeling for my daughter tonight is especially indescribable, being forced to eat when she feels so horribly. she is one amazing little girl.
So this is how it's supposed to be??? I can now understand a bit (or have some sympathy for myself) why I'm so depressed all the time over Kaitlyn's feeds. It's really, really, really awful especially when you work at feeding her for 30+ minutes only to have her vomit it ALL back up again. It's all I know. Every meal. 4x a day. Every meal (including prep time, and vomit clean up time takes about an hour) Can I say how extremely, horribly awful it is normally? And that's my "normal" and my living-torture hell, not to mention how poor Kaitlyn feels.
Seeing how much better/easier it can be was an eye-opening experience for me. Maybe I will really be able to parent my new baby. (I've been terrified, as it's been sooooooo hard up to this point without much improvement).
I now know Kaitlyn needs antihistamines.. Now to get her doctors on board so we can come to the bottom of why it's happening in the first place (as I hate having her on the drugs, but I'm the one who suggested the periactin in the first place). I'll probably want to explore other ones (that so many of you have suggested). I don't care as much about the "appetite stimulate" side-effects of periactin, my gut tells me that if the pghelm stops maybe she'll want to eat...
(oh as I side note, I had a bout of morning sickness the other night (bleh vomiting -took my prenatal vitamins on not enough food in my tummy), and after the heaving was done (thinking about Kaitlyn the whole time), I had all this nasty pghelm in my throat that kept coming up on it's own for about the next 20 minutes. I can't even imagine being forced to eat while this was happening. Poor, poor Kaitlyn.
Oh and a few basic comments on some of the comments you've given me:
Kaitlyn's pghlem has always seemed to be in her throat (not her lungs), she always to be an EXTREMELY noisy breather (upper respiratory) until we got her on the blended diet. The Pulmonologist was never worried about the stuff, as it was upper. But it's also always been worse in the morning, she never gave me any solutions, and breathing treatments never seemed to make a difference. She doesn't snore at night unless her neck is positioned funny.
Does she really need a motility agent???
Let's see how the next week goes....I'm also already afraid of when I'm supposed to "cycle off the drug"...
10 comments:
This is what I think: the fact that the antihistamines are working (and you nailed it--the periactin works in precisely this way) seems to suggest allergies of some sort---maybe not IgE mediated, maybe yes, but regardless, you guys are dealing with allergies. Our experience suggests that reglan doesn't help too much. Perhaps a little, but not really much to speak of. We don't have the negative side effects, but we also don't get a lot more motility from our girl, either. I am going to raise periactin with our GI to see what he thinks based on your experience, but our experience is that zyrtec (OTC antihistamine) REALLY helps a lot with the vomiting. And getting rid of the allergens makes Hallie a lot less of a noisy breather, too. So same as you guys. And seriously cuts down on vomiting as well.
I don't know if periactin is a long-term fix since I hear you have to cycle it to not build up tolerance to it, but I'd keep pushing on the allergy front if I were in your shoes (and yeah, we sort of are---not as much vomiting, but definitely daily vomiting and often as many as three to five times a day before we pulled milk from her diet).
Let me know if you want our spare allergy book. It's yours for the asking.
And good luck with this---I totally understand the feeding frustration and I hope that we're all relieved of this soon.
Woo Hoo!! What a great day for all of you!!
On a side note... watch for sinus infections while on the antihistamine. Paige was on Benedryl for many years and suffered chronic sinus infections. She was hardly ever off of antibiotic. It wasn't until we stopped the Benedryl before her tonsil surgery that we realized the sinus infections went away. A year later we put her back on the Benedryl and the sinus infections came back. Since it not only works on blocking allergies but also on thickening mucous (to stop runny noses), the snot becomes too thick to drain and the infection starts.
Hi There!
My name is Jennifer. I came across your blog when searching for blogs about preemies and twins. My twins were born in December!I have enjoyed looking at your blog pictures and learning about your experience. Please feel free to check out our blog at: http://addieandalex.blogspot.com
Take care!
Jennifer
If the antihistamine is working it may point to the problem being eosinophilia. Have you tried Singulair?
Do you live near a center where you could have that evaluated?
Have she had a gastric emptying test to see if she needs a motility agent.
Laura
If antihistamines are working, which most definitely points to allergies of some sort and she is a noisy breather, you really, really, really need to consider having her tonsils/adenoids removed. It could make a world of difference. Surgery is a scary prospect, no matter how minor and I know with a preemie the risks can be higher, but it really is something that should be considered.
It is good to hear there is a solution for now and I hope that you can get your doctors on board with further treatment.
Just emailed with Hallie's allergist. She has definitely found that kids with food allergies have done better long term on meds (zyrtec and atarax are the two she mentioned) without any known (of course this can be revisited later on..) long term side effects. Maybe you can try zyrtec on the weeks when K. is off periactin?
A couple of thoughts that has semi helped Jared. He is also on zyrtec daily and I have noticed a difference (been on for about a yr) We are also on (funny I say "WE" bc clearly him and I are in this together) singulair and flovent. The combos have helped but not made the mucous and gagging go away.
My other thoughts are has she seen an ENT regarding her tonsils and adenoids? Jared needed his adenoids out last summer due to snoring and it did make a minor difference with mucous and now he is getting his tonsils out this summer. They are huge and my feeding therapist feels this is interfering with his swallowing. Just something to check out if you havent already.
curious what you feed her orally? Is she chewing? Jared doesnt and Im running out of puree ideas. Email me if you have any thoughts on what to feed him other than applesauces, yogurts and puddings!
Abby (apparently you have to Abby friends. Im the one from Boston, mom to Jared, fellow pprom and surviving 28wk twin)
Reading your first post, I wanted to reply about my stepfather. But I thought it was so basic, and simple, there's no way that's the answer. However, it seems I may have been wrong.
My stepfather lived in the Bay Area until 10 years ago. He's been in my life for almost 20 years, so I remember very well what life in California was like for him.
His allergies were indescribable. He had breathing treatments once a week all year long at the allergist, and several times a week during pollen season. He took several daily medications, and he was still very, very phlegmy. He was constantly hacking stuff up and went through a hankie plus a day.
10 years ago, he and my mom moved to Florida. Within a MONTH of moving, he was off everything. His allergies were almost completely gone. He has one prescribed pill left he takes daily, and during pollen season, he's still a little phlegmy, but the transformation is just amazing.
If Kaitlyn has a weak gag reflex, living in an extremely allergenic area like you do is undoubtedly a big trigger. I'm not suggesting you move, just letting you know that I've lived and loved someone who had huge problems with phlegm that were caused by the area's allergens.
HTH!
I heard a story about a youngster whose allergy issues resolved after only 2 acupuncture treatments!
I am currently doing acupuncture treatments, too, for a knee injury and subsequent surgery that is slow to heal. The needles are NOT painful--in fact, I do not even feel most of them. Some feel like pressure, but none feel like a needle stick at the doctor's office or an immunization. They just don't hurt--period.
Having tried everything else to speed the healing of my knee post surgery, I began looking at "alternative" modalities. Acupuncture was recommended to me by someone with a similar injury. So I tried his acupuncturist. I have been satisfied and impressed!
Personally, I would rather try acupuncture than take a long list of meds. Even though I am in the medical profession, I have a mistrust of meds and combinations of meds, and I use them sparingly.
Chris and Vic
I was so happy (in a weird way) to see you write that you HATE feeding Kaitlyn. My girls aren't as difficult as Kaitlyn, but there are days or at least meals, that I just hate it. I hate struggling with it, worrying about it, and talking to doctors about it. I completely agree that if I had to feed the girls all the time, I'd go nuts. That and they'd starve - daddy is much better at getting them to eat. They always eat more for him. It's so frustrating. I just thought I'd let you know - you aren't the only one:-) Johelen
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