Hug, please.

[Munchkin]

OK Pscopers, I need moral support.

My soon to be 10 month old is in the midst of apparently (yet another) reflux peak. This poor kid has already been admitted twice in his life for reflux and is riding so far below the 3rd percentile that he has earned the oh-so-reassuring "failure to thrive" moniker. He is medicated (most recently he was stabilized with Prevacid solutabs after we were able to wean him from joint therapy of Prevacid and Pepcid) and spits an average of 10-20 times a day. Thickening feeds was such a disaster it led to his second admission. He has substantial feeding aversions which dramatically limit our ability to get solids into him. Further, he wakes 2-4 times every night to feed bottles and another 2-4 times every time just to scream out hysterically, burp and spit up.

Side note, I'm actually in Peds, but my kid is unlike anything I've ever seen. Some of the stuff that has arisen even his GI specialist has not seen in a "healthy" child. They've already tested him for inborn and acquired immunodeficiency, scoped him, biopsied him, barium swallowed him, ultrasounded him and sweat tested him.

At this exact moment, he has woken 5 times since 7pm just to spit and cry. I'm downstairs while my husband is up trying to get him back to sleep. I almost always handle every over night wake, and tonight I just needed a break. I'm crying, the baby is crying and I need a pscope hug.

I really need a parent of a bad refluxer to tell me when it got better or give me a miraculous suggestion as to how to help with the sleep situation. When he was younger he slept in a vibrating chair, but he's long since developmentally outgrown that.

Thanks in advance.

 

[Echidna]

Munchkin, I'm not a PS mommy (and I know they will be along shortly with all of their fabulous advice) but I wanted to give you a huge hug anyway (((((((hug)))))))

I'm so sorry you're having a tough night. You, your husband and your little man sound like a great team who will prevail in the end! Just wanted to let you know that someone out there was thinking of you all.

 

[geri]

Sending you another huge hug. You are obviously an amazing mum who is doing everything she can to help her poor little man. I really hope things improve for you soon.

 

[Loves Vintage]

Aww, Munchkin, I'm so sorry to hear that your son is experiencing these issues. I wish I had some good advice for you. Sending you a huge hug and hoping he feels better soon. HUGS!!!

 

[missy]

Munchkin, another big ((((hug)))) from me. I am so sorry you and your dh and the little one are dealing with this. I am sending good thoughts and healing dust your way. Hope you and the little one find relief very soon!! ((((hugs))))

 

[mary poppins]

Munchkin, I'm not a mom either, but want to give you a hug. So sorry you, DH and your son are in distress. Such a challenging situation. I hope a PS mom stops in and gives you some helpful advice.

 

[Puppmom]

Oh, Munchkin. I'm so sorry and I hope you get some answers soon. Watching your child suffer is terrible.

How's your little guy doing otherwise? Does he play and engage when he's feeling well?

 

[Munchkin]

When he isn't eating, going to sleep or ill with a respiratory bug, he is very happy. He's amazing developmentally. He babbles, waves, cruises crawls up stairs, hunts for lost people and objects, turns board book, s and has even taken independent steps. He is just exhausting because he's constantly overtired and and we're always so worried about his intake. More than anything he needs food and sleep and refuses both.

 

[Skippy123]

My heart goes out to you and your little one; it is so hard to see them in pain. Sending you a giant hug and prayers that your little one out grows this or you find answers.

 

[movie zombie]

can the doctors and/or hospital put you in touch with parents or a group that have also gone through this?

i'm so very sorry your little one is going through this....and you as well. please take care and know that good thoughts from many places are with you.

 

[missy]

Munchkin I just thought of something that might be a long shot but just thought I would mention it in case...my youngest niece also was like in the bottom 3% weight wise and also categorized as "failure to thrive" in the first year plus. She wouldn't eat/spit up etc and it turned out she had a swallowing problem that a special speech pathologist was able to help and now she is doing great. Still having speech therapy but she is eating well and a very smart cookie! As far as the sleep situation she slept in the bed with her parents for the first 2 years and that really worked like a charm. I know not everyone likes to have their kids sleep with them though but just throwing that out there if it might help in any way.

 

[PetitiePoire]

I don't have any advice, but I wanted you to know you and your baby are in my thoughts. Hugs.

 

[Puppmom]

Munchkin, from a medical perspective, I don't have any advice but I think it's great that your little guy is thriving otherwise. Are you in a position financially that would allow you to get help? Waking every night for months on end with a sick baby is more than one person can handle IMO. Maybe DH can take on a little more of the load? I'm sure you're at your wit's end and a little help could go a long way.

Sending you a huge hug!

 

[Bella_mezzo]

Munchkin, i have no advice but wanted to send you a (((((((((((HUGE HUG))))))))))

 

[swimmer]

Huge hugs, sleep deprivation is killer all around. Hope you can get stuff in him and it stays soon!

 

[sugarpie honeybun]

Sending you a big comforting ((( hug ))).

 

[Laila619]

Oh, I'm so sorry Munchkin! How awful.

My son also had bad reflux, but it stopped once he was able to sit up/crawl. I hope your little guy will outgrow it soon.

 

[lliang_chi]

Munchkin, HUGS for you my dear! I have no advice, but I can only imagine how helpless you feel while your LO is crying. I hope he starts feeling better. I agree with Pupp, it's encouraging that he's doing so well and happy while awake. I hope the reflux gets better.

~LC

 

[Munchkin]

Thank you all for the kind words and hugs!
He ate solids fairly well today, but drank poorly and we're already on wake up #3. I know we shouldn't encourage regression, but we found a low vibrating seat with a 5 point harness and bought it. He's in our room, on the floor next to our bed. We'll see how this goes tonight.

 

[geri]

Munckin - fingers crossed that the vibrating seat works. And please do not give "regression" another thought - do what you need to do to give all of you some very well earned sleep. Good luck!

 

[Skippy123]

Munckin - fingers crossed that the vibrating seat works. And please do not give "regression" another thought - do what you need to do to give all of you some very well earned sleep. Good luck!

I agree with this. Hugs and please keep us posted.

 

[lulu]

Sending you a hug-it's so distressing to not be able to comfort a baby. One of our grandaughters had indigestion issues as an infant and I'd let her sleep all night in the vibrating chair. It was a lifesaver.

 

[blushingbride]

((((HUG))))....ugh, it's so hard when you don't know how to help your little one in their time of need! Elevation at night for sleeping is key (our daughter had mild reflux). Our Dr. told us to elevate her the some towels under her head or put her in a baby bjorn bouncer or even her car seat for sleep. We were also told to put rice cereal in a bottle for her...we just mixed a few tablespoons in for each feed and got one of those Y cut nipples (we used Dr. Brown's bottles as well which helped with the reflux). She was on Gerber Gentle Start formula (the one with the organge label). Have you tried switching formual as well?

 

[Munchkin]

Thanks again for all the support. We put him in the vibrating chair for the first few hours the past few nights. He only woke 3 times last night! Fingers crossed it wasn't a fluke!

He originally nursed for the first few months until they encouraged me to stop. There were concerns that he was adversely reacting to something in my milk and they worried that my milk just didn't have enough calories as he is a terrible gainer. Since then he was put on Alimentum (1st diagnosis was milk/soy protein allergy), then Nutramigen, and my personal favorite, Neocate (blech!). During his second admission they determined that the previous specialist was incorrect in the allergy diagnosis and he was changed to Good Start. It's funny, I have political issues with the company so I often didn't recommend it to my patients - and it's the only kind he has done fairly well on...

Currently he's been asleep for two straight hours and hasn't screamed in his sleep once!

 

[Puppmom]

Yay! ...and I agree with the others - regression is non-issue. He's a baby who needs to be comfortable. And so what if that means he needs to sleep elevated. I'm so glad to hear you're getting longer stretches over the past few days.

Quick question - how do docs make the failure to thrive diagnosis? Is it just his height and weight percentiles?

 

[Munchkin]

FTT is very much a weight/height diagnosis. Despite its negative sounding connotation, it really isn't reflective of development. In my guy's case he weighed 15lbs 3oz at his 9 mos check. That places him well below the curve. He also failed to regain bw by 2 weeks, failed to double by 6 mos and certainly isn't on track to triple by a year. Multiple times in his little life he's actually lost wt between wt checks. He is always weighed naked and on the same digital scale to preserve controls.

 

[Munchkin]

Update:
We've had a pretty good week. He has significantly increased his solid intake and I won a fight with his insurance company for prevacid coverage. (The generic is on terrible backorder and BCBS didn't want to cover the brand name.) Last night he woke twice to cry and once to eat! That's a HUGE improvement. He spends the first several hours in the vibrating seat and then we transition him to a crib or pnp. Today he napped for 2 hours straight in the chair! He's never done that! Also, I brought home a baby scale from work and he weighed 16lbs, 4 oz on his 10 month birthday! That's a whole pound increase in 3 weeks.

Thank you all so, so much for the support.

 

[mary poppins]

Wow, that's great improvement, Munchkin! I hope the troublesome days (and nights!) are over for the Munchkin family.

 

[Puppmom]

Munchkin, how exciting! I hope his progress continues!

 

[drk]

That's great news that he's doing so much better. Before I got that far in the thread, I was wondering if they'd ever considered a J tube to get feeds into him? I know a Gtube/Jtube isn't ideal, but it's got to be better than TPN, if he's having that much trouble eating and keeping stuff down. I hope the sleeping in the seat does the trick and he can start to pack on some pounds now.
Hugs!