Good news but still no answers

[Anonymous]

Noah had his stomach emptying test done yesterday. We had the nuclear medicine scan and he had to drink as much as he could in a 10 minute time frame. This part of the test was a chore since Noah refused to drink the formula with the nuc. med. in it, so we ended up syringing the majority of it. Half of that he spit out! We managed to get almost 3 oz in him. They wanted his belly as full as possible, but that was the best we could do. They took a 3 minute picture right away, and then we had a 2 hour break, and then another 3 minute picture, and then we were done. They wanted to see a 50% emptying rate after 2 hours. We got the results back today and he had emptied at 95% at 2 hours. So he passed with flying colors. He doesnt have an emptying delay (atleast with liquids). That’s great news, but at the same time, we still dont have an answer for his unwillingness to eat. We have a head MRI scheduled for next month and that is the last of the tests we are going to do. If it is normal (which i suspect it is), there is no obvious physiological reason for his eating issues. So its back to square one!

[Anonymous]

Lisa

Glad he does not have a problem with his stomach…. but i know it has to be frustrating to not know what is going on with his little head. I hope that he starts eating better soon!

[Anonymous]

Lisa, glad to hear that he doesn’t have DGE. Now at least you don’t have to worry about the meds to treat it. I know it still doesn’t solve the problem of “why”, but good news is always better than bad news. Hope the other tests turn out fine.

[Anonymous]

Yeah for the stomach empyting fine but hopefully you will get some answers soon!

[Anonymous]

Wow, that’s really interesting. I would have guessed from your posts and descriptions of Noah’s problems that he did have a DGE problem. Did they say there could be an issue with solids and not liquids? He’s not taking a lot of solids anyway though, right so I suppose it doesn’t really matter.

I wonder if it’s just a no appetite issue then? There are medicines that can help with that too.

Keep us posted on the MRI results. I hope everything goes ok. I had my first MRI a couple of weeks ago and I can see why they have to sedate kids in order to do the MRI. It was really freaky. The machine makes a lot of noise and of course your body goes into this tunnel. The man before me left because he couldn’t do it. I was able to do it but they had to pull me out once because I started freaking out. Once I saw how close my head was to the end I was ok. It took quite awhile too. I had a lumbar MRI (back) and it took about 45 minutes, they did several scans. Good luck.

[Anonymous]

I’m glad to hear that he doesn’t have DGE but know it must be so frustrating for you to still not have any answers.

Good luck with the MRI – will look for an update from you.

[Anonymous]

stacey – I was wondering myself if he might have problems with solids and not liquids. I now wish I had taken solids to feed him instead. I had the option of giving him either one. I could kick myself for not giving him the solids. That might have been a more accurate look at how his stomach is emptying.

I can definitely see why they need to sedate little ones for MRI’s. I had one done of my head several years back and it was pretty tough because my head was literally enclosed. I had to close my eyes, and I took an herbal “valium” before the test to help me relax.

[Anonymous]

Lisa

I don´t know if the solids make a difference. I am praying that you find something (easily fixable, of course) because the appetite roller coaster is so tough, as you know.

Good luck with MRI… seems like we all had one done” i was about 8 years old when i had one done… i remember being in the machine — it was for my head… and it was long!! I remember that my parents were really worried at the time… but they found nothing and i know that Noah´s will come back just fine! (they did an ultrasound on matthew´s head too to check for abnormalities, mainly my ped said that sometimes pressure on the brain b/c it is growing faster than the skull can cause reflux-like symptoms).

I was just talking about Matthew and my mom reminded me that since i was about 6 until i was about 12 years old i was always sick, having migraines, throwing up, with fever … until one doctor realised that i had a terrible calcium deficiency – that simple! Maybe our answer is also that simple…? Who knows.

BTW– i am going to meet my ped at 11am on Monday and we are going to go together to the psychologist and then all have lunch together… i am really hoping she will give me good tips and maybe she can also share some experiences so that we can all be certain this will be over soon!

[Anonymous]

Whenever my son had a barium x-ray (esophogram) they would pump the barium into his stomach with a skinny little tube that went down his nose and into his stomach (NG tube?). Has he had an endoscopy done where they test the tissue of the esophagus to see if its inflamed? Maybe if his esophagus is swollen and irritated, that’s why he doesn’t want to eat? I also wanted to add that my massive refluxer did not start eating table foods or #3 baby foods until he was 13months old. I believe that his stomach wasn’t ready to digest foods yet before that age and that’s why he refused food all the time, Becasue when he turned 13 months, he’d shovel the food down!

[Anonymous]

Lisa, It’s so hard to know what the right decision is, but I think you did the right thing choosing the bottle over solids. If i remember right, you mentioned that he never seemed hungry and didn’t want to nurse or bottle feed early on. In my mind, this seems that whatever the reason for him not wanting to eat, it exists with both- started with bottle/breast and has continued with solids. If he eagerly took the bottle but refused solids then I might be more inclined to think that maybe it’s related to the solids only. I hope the MRI goes well and will be thinking of you. BTW, have you been continuing with the feeding team? What do they say about things?

Thais, that’s interesting what your ped said about the brain growing faster than the skull. Hailey’s head is a very wierd shape, especially at the back- it’s very broad and seems asymmetrical at the bottom. Maybe i’ll ask the ped about it tomorrow. Please keep us posted with the psych appointment…it’s nice that youre meeting over lunch. It’s funny b/c when we met the psychiatrist for Hailey, they had a break in between where we had snacks- coffee and doughnuts etc- and I kept thinking that it was part of their assessment and that they were trying to see my attitudes/behaviour toward food so I was so uncomfortable to eat…my husband thought I was so paranoid and shoveled in the doughnuts!). Good luck. Hope it helps and gives some hope that there will be an end to this soon.

[Anonymous]

Thais – Good luck with your appt. tomorrow. Let us know how it goes with the psychologist. I hope you have better luck than I did with the psych we saw. His answer to a feeding aversion is to starve the baby until he learns what hunger is, then he will want to eat. Not sure if that would work for Noah though. I think he’d enjoy NOT being fed. Please keep us updated with any info or helpful tips she gives you.

Marsha- We had the esoph. scope done about 4 months ago. It came back normal. Everything looked great. We’ve also done the upper gi and the swallow study. He does have issues with his swallow, and the OT’s are focusing on that as being the cause of his aversion. I doubt it though, since he doesnt delay his swallow when he WANTS to eat. – What did you do to help get Logan to eat stage 3 or table food? I cant get Noah to eat anything that has any sort of texture at all. He immediately spits it out, or gags really bad.

Lori – Yes, Noah did have a lack of interest since birth, whether it was breast or bottle. Youre right, I guess it really didnt matter if I gave him solids or liquid for the emptying test. His issues started with w/ nursing and just continued on with the solids. – And yes, we are still going to the feeding team. It seems to be a waste of my time though. They havent done a single thing to help Noah. I’m thinking of changing OT’s and using an SLP instead. Our next appt. is next week. I cant wait to tell them that their suggestions of increasing solids to 16 oz a day and decreasing formula to 17 oz a day isnt working. If I cant get any help from this team, I will drive 2 hours south to Cincinnati and work w/ the feeding clinic there. They have been around for many years, whereas the team here was just started a year or so ago. How have things been going with your OT? Have you had anymore appts?

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