[athikers]

As most of you know, we've been struggling for many months with whether we wish to be a permanency option for Teeter. Along with us, he has several relatives still being considered. Our primary concern has been his feeding and how frustrating, tiring and labor intensive it is to keep him gaining the SLIGHTEST amount of weight while he seemingly HATES food.

Well, we've been insisting for some time that his GERD remains uncontrolled and that is why he's not eating. This week we had it confirmed by his OT who watched him eat several different things and said his issues are NOT sensory related... then his ST came for the first time in months (Teeter has been too sick for the past 2 1/2 months to even bother with ST) and we told him what has been happening and he agrees that it is uncontrolled GERD.

So, hubby and I are so M-A-D. Mad we are finding this out now. Mad Teeter has suffered for months while we suspected something was very wrong. Mad that we as parents have not been taken seriously when we are the ones dealing with his issues day in and day out. We've been telling his ped for MONTHS that we think his reflux is not well controlled. Finally, we are getting a swallowing study done and we are pushing with the backing of our OT and ST to get him on a new and stronger reflux med. I am praying this makes some difference in our little man!!!

We've explained our reasons to his worker for withdrawing as a permanency option and I only hope that if we can resolve his feeding as ST and OT think we can by addressing his GERD then maybe we can reconsider his placement with us.

I feel so horrible for little T if he's been suffering with GERD all this time... I wouldn't want to eat EITHER

Thanks for listening

[Oceans]

((( Teeter )))) I am so happy they finally listened. Maybe now there's a light at the end of the tunnel? Your family is in my prayers. I hope they can address this soon and get your little man some relief....

[athikers]

YEAH!!! Swallow study is right away on Monday and a new prescription for stonger meds started today!

[SuzBerg]

ath - we have done several swallow function studies with Em, also she had GERD when she was younger and first came to us. Just to give a little hope for Teeter, she has pretty much gotten over it - I don't know if she outgrew it or what, but it is not the severe problem it was before. Unfortunatley eating is still an issue as is gaining weight. I'm glad you are finally able to get Teeter some help for this (the most frustrating part for me of having a med-fragile kiddo is getting medical people to listen and understand)! Hugs - Suz

[Withay]

Ath - if it turns out that the new meds don't control Teeter's GERD you may want to check with the drs about a Nissan Fundiplication. It can be done laproscopically so the recovery time is fairly short.

I had this done and not only did it CURE my GERD, it also cured my asthma. I know this is done on very small infants who have severe GERD quite successfully.

[athikers]

He had a nissen fundo done when he was in teh NICU. It is undone...and the gastroenterologist does not recommend redoing it unless every other alternative is exhausted. So, if meds don't work, we will be requesting he get a g-j tube, which is a continuous feed tube

[athikers]

A glimmer of hope... we had the swallow study today and one more potential issue is eliminated. He is NOT aspirating

We are on day 3.5 of his new dosage of prevacid, so far it looks quite promising... not a miracle drug, but a definitely improvement!

And... his O2 sats were low nineties today when he was dressing and had no O2 Also promising that we might be back to only nights some day!

[devildogwife]

Okay, it sounds like you had an awesome day!!! Congrats on the swallow study!

Sounds like teeter and Cameron have some things in common (except my son ever being in the low 90's ). Cam has to have a swallow study done soon due a paralyzed vocal cord and the concern of aspirating due to that. Prevacid has worked great for him too!

[Lylac]

Ath, that is great news!! Maybe with a mixture of the right meds he'll do better.

[lambeausam]

Yay for Teeter. Hope this means it is the right meds for him.

Sam

[athikers]

Thanks everyone... another good update. His appetite continues to improve (last night he ate MEATLOAF, and with enthusiasm), his mood is also improving and he was already a pretty easy going boy, but now he is giggly and just very happy AND his general body posture is different, like he's much more comfortable. I'm taking all this as VERY GOOD and hoping we will continue to see these things happening.

I do feel so sad for my baby boy if he was in pain or very uncomfortable all this time... but hindsight is 20/20 so I'm trying not to beat myself up too much.