Of course, the fact that we were seeing GI probably had a lot to do with it :p Even though Baby W sees GI for reflux and aspirations, we still talk about poop an awful lot. Pretty sure GIs are just hardwired to talk about it LOL Baby W has a different GI than Iz so we spent some time with Dr A this time around.
Baby W is officially off Prilosec! WooHoo! Dr. A lowered his dose last time we were in (Dec 1) and I asked her about doing a trial completely off to see how he did since even on days when he fought and spit and didn't get a dose, he wasn't really spitting up. She said no problem, see how he does so he hasn't taken any in months :) At first, we had some minor spit up, maybe once or twice a week but its been a few weeks since he's spit up so he has officially outgrown his reflux and the meds are removed from his "currently taking" list. His reflux was so very severe that we didn't expect him to have such a sudden turnaround.
Scheduling didn't work to get his swallow study before our visit so she can't change his thickening consistency or decide if he needs more NMES therapy. Swallow Study is March 27th so a couple weeks to go and then she'll either call or email after she gets the results with the game plan. We go back to see her in 4 months.
Oh, and he was a bit over 22 pounds today and moved up several percentiles on the growth chart :) He's still below 15th percentile but this time last year he wasn't even on the chart so yay for progress, eh?
Showing posts with label prilosec. Show all posts
Showing posts with label prilosec. Show all posts
Wednesday, March 15, 2017
Saturday, February 4, 2017
Much has happened!
I am shamefully behind (again) on updating so of course there is much to share!
Baby W had another swallow study done in the beginning of December. We were hoping for improvement, perhaps even an end to thickening his liquids but, alas, this was not meant to be. He had gotten worse in some areas, enough that technically he should have moved back to honey thick liquids instead of the nectar he had been on. However, his GI decided to leave him on nectar because she was putting him back into the NMES feeding therapy and he responded so well the last time she felt he could stay on nectar since he improved on NMES last time. So back to three times a week for three months! We just started on month three so the end is (sort of) in sight.
I asked about possibly trying to go off Prilosec since Baby W's reflux seemed to have improved--she said we could do a trial and see how it went and he has been doing fantastic :) We get some minor spit up maybe once or twice a week and even that is becoming less common. I am cautiously optimistic in saying I think maybe we might be done with reflux meds.
The other big thing is GI ordered a sedated MRI for W--between the swallowing issues and developmental delays, she wants to get a look at his brain and nerves and all that to rule out some possible causes. She said if I really wanted to, we could wait to see how he does with this round of feeding therapy because chances are the MRI would be perfectly normal. My reply was that "chances are" is not our friend because our family tends to fall into the "somebody has to be the statistic" category ;-) I told her about Izzy's MRI (neurologist wanted one to rule out things but told us chances are it would be normal--nope, not normal) and that settled it for her--she wanted to get it now rather than wait for it. With Mr. Piper living in another state for work, it was a bit of a job getting a time set up that he could be here for so I wasn't juggling all the other kids but we finally got it set up.....only to have to cancel because W has been sick for a couple months now. He has had the neverending ear and sinus infection. Because of his swallowing issues, I was told he has to be under full anesthesia instead of just sedation like my Busy Little B and Izzy so he absolutely cannot be ill. Three rounds of antibiotics later and he got the all clear this morning to keep his second MRI date on Tuesday. Again, it took some maneuvering to get Mr. Piper here for this so *fingers crossed* that he remains well and we can get this done.
My Busy Little B had another overnight EEG and oh, my, was this one so much harder than the one he did just before W was born a year and a half ago. In some ways it was easier--he understood more and so was trying to cooperate and stay in camera and so we were playing board games and built with Lego and did puzzles and watched a movie (Ratchet and Clank--he chose it specifically because his older brother really wanted to see it and B figured he'd be jealous LOL). He ate his weight in food, I think--they told him he could order a meal whenever he was hungry, not just at meal times, plus they had a family pantry where I could go get him snacks and drinks and he took the "eat as much as you want" to heart. I'm not sure where he put it all but he's been eating everything in sight at home as well. I've started calling him the dinner vacuum because once everyone is finished, he polishes off any food left on sibling plates :p Sorry, went off on a food tangent. Anyway, the hard part of the EEG was the gauze that held the leads in place--it made a sort of helmet with a strap and he could not stand it. During the day, reminders not to touch, pull, or tug on it were enough--he was fussy and grumpy about it but was easily distracted and redirected but when night came? He cried and screamed for such a long time--Mr. Piper took the overnight shift because Baby W still needs mommy cuddles to sleep and he said B was inconsolable. He even called me so I could talk to B to try to calm him down but I'm pretty sure it just made B even more angry. They survived, though, and B was so relieved when the EEG ladies came to take it all off. No results yet, though :\
Poor Iz has been really struggling with her anxiety the last few months and just about her entire team is scrambling trying to figure out why and how to help her. It seems as though every few years the manifestation of her anxiety shifts a bit and we have to learn new strategies to deal with it. Right after her heart surgery, it was panic attacks so severe she'd hyperventilate and pass out. Then came severe separation anxiety. Then came selective mutism. Now we seem to be entering an aggressive phase. Thankfully everyone is very committed to helping her so her school team and medical team are all trying hard to bring her back to a more even keel. I really appreciate how the school not only asks about what helps at home but they work to incorporate those things at school and also share what works at school so I can incorporate at home--that consistency has been helping and we are again having more good days than bad :)
Baby W had another swallow study done in the beginning of December. We were hoping for improvement, perhaps even an end to thickening his liquids but, alas, this was not meant to be. He had gotten worse in some areas, enough that technically he should have moved back to honey thick liquids instead of the nectar he had been on. However, his GI decided to leave him on nectar because she was putting him back into the NMES feeding therapy and he responded so well the last time she felt he could stay on nectar since he improved on NMES last time. So back to three times a week for three months! We just started on month three so the end is (sort of) in sight.
I asked about possibly trying to go off Prilosec since Baby W's reflux seemed to have improved--she said we could do a trial and see how it went and he has been doing fantastic :) We get some minor spit up maybe once or twice a week and even that is becoming less common. I am cautiously optimistic in saying I think maybe we might be done with reflux meds.
The other big thing is GI ordered a sedated MRI for W--between the swallowing issues and developmental delays, she wants to get a look at his brain and nerves and all that to rule out some possible causes. She said if I really wanted to, we could wait to see how he does with this round of feeding therapy because chances are the MRI would be perfectly normal. My reply was that "chances are" is not our friend because our family tends to fall into the "somebody has to be the statistic" category ;-) I told her about Izzy's MRI (neurologist wanted one to rule out things but told us chances are it would be normal--nope, not normal) and that settled it for her--she wanted to get it now rather than wait for it. With Mr. Piper living in another state for work, it was a bit of a job getting a time set up that he could be here for so I wasn't juggling all the other kids but we finally got it set up.....only to have to cancel because W has been sick for a couple months now. He has had the neverending ear and sinus infection. Because of his swallowing issues, I was told he has to be under full anesthesia instead of just sedation like my Busy Little B and Izzy so he absolutely cannot be ill. Three rounds of antibiotics later and he got the all clear this morning to keep his second MRI date on Tuesday. Again, it took some maneuvering to get Mr. Piper here for this so *fingers crossed* that he remains well and we can get this done.
My Busy Little B had another overnight EEG and oh, my, was this one so much harder than the one he did just before W was born a year and a half ago. In some ways it was easier--he understood more and so was trying to cooperate and stay in camera and so we were playing board games and built with Lego and did puzzles and watched a movie (Ratchet and Clank--he chose it specifically because his older brother really wanted to see it and B figured he'd be jealous LOL). He ate his weight in food, I think--they told him he could order a meal whenever he was hungry, not just at meal times, plus they had a family pantry where I could go get him snacks and drinks and he took the "eat as much as you want" to heart. I'm not sure where he put it all but he's been eating everything in sight at home as well. I've started calling him the dinner vacuum because once everyone is finished, he polishes off any food left on sibling plates :p Sorry, went off on a food tangent. Anyway, the hard part of the EEG was the gauze that held the leads in place--it made a sort of helmet with a strap and he could not stand it. During the day, reminders not to touch, pull, or tug on it were enough--he was fussy and grumpy about it but was easily distracted and redirected but when night came? He cried and screamed for such a long time--Mr. Piper took the overnight shift because Baby W still needs mommy cuddles to sleep and he said B was inconsolable. He even called me so I could talk to B to try to calm him down but I'm pretty sure it just made B even more angry. They survived, though, and B was so relieved when the EEG ladies came to take it all off. No results yet, though :\
Poor Iz has been really struggling with her anxiety the last few months and just about her entire team is scrambling trying to figure out why and how to help her. It seems as though every few years the manifestation of her anxiety shifts a bit and we have to learn new strategies to deal with it. Right after her heart surgery, it was panic attacks so severe she'd hyperventilate and pass out. Then came severe separation anxiety. Then came selective mutism. Now we seem to be entering an aggressive phase. Thankfully everyone is very committed to helping her so her school team and medical team are all trying hard to bring her back to a more even keel. I really appreciate how the school not only asks about what helps at home but they work to incorporate those things at school and also share what works at school so I can incorporate at home--that consistency has been helping and we are again having more good days than bad :)
Saturday, March 12, 2016
Lots of testing :/
So our littlest guy has been struggling to gain weight--he has pretty bad reflux and was constantly spitting up. We tried a couple different meds and prilosec seems to work ok. He still spits up but not nearly as much and he has started gaining again but ssssllllloooooowwwwwwlllllllllyyyyyyy. Because the older kids all have "stuff" going on, our current pediatrician ordered a bunch of tests to see if there are any of the "common" genetic causes going on, including the oh-so-fun sweat test (three and a half hours in the hospital for that one. He was cooperative but his sweat glands were not so we had to do the test twice on one arm. Fun times). So far, nothing much has turned up. He has a few slightly off results on the blood work but not so far out of range they are really worried. He has been voracious in his appetite lately, both for nursing and actual food so perhaps by his next appointment his weight will have caught up on its own :p
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