Hello, Im new here. Just found this board. Im hoping to get another opinion about my 4.5 yr old son.

Where do I start! Jack has many issues. He's dev. delayed due to his Hypotonia (lowtone) he's had many tests over the years and still getting therapy. We recently had a muscle biopsy that revealed he had an unspecified congenital myopathy (muscle disorder) He also has SID, very oral defensive and never took to solid food. He is also 99.9% G-Tube fed. He suffers from slow motlity and many bowel problems. He has silent Reflux and takes Prilosec. We discontinued the Reglan because of the adverse side effects we were seeing. Jack doesnt do well with bolus feedings during the day because he gags too much and the food doesnt go in well so we do most all his feeding while he sleep via pump.

We recently had a sleep study done because of his breathing during the night. He gasps and holds his breath, it turns out as long as 43 secs., bringing his sats as low as 82 during the night. He has obstructive sleep apnea and were told he needs to have his tonsils and adnoids removed.

My question was about aspiration. Jack has never has a swallow study done because he isnt able to take a small amount of food for the test. His GI has always said if we forced him to take a bite during the swallow study, he would likely cry and the test wouldnt give us an accurate picture on whether he aspirates.

Jacks GI doesnt believe he aspirates because he isnt sick enough. He's only had 3 bouts of pnuemonia the pass couple of years. BUT Jack chokes during the night (he's tube fed via pump) and the pass few weeks he's had a cough that he cant shake. He swallows a lot during the day and clears his throat many times too. He seems miserable. I brought this up to his GI again but she's not concerned it could be a sign of aspiration.

Could this be a sign of aspiration? OR is this just his Reflux getting worse? How can we know if he's aspirating? Would he be sicker? Is there such a thing as micro-aspirating?

Im just worried Im not doing enough to be sure he's not damaging his lungs. Does he need to be referred to a Pulmo? His PED doesnt think he needs one, despite his issues and new diagnoses. I know kids with a Myopathy can have respiratory issues.

Jack is going in for another endoscopy/biopsy next week to see if his reflux is worsening. Theyll take more blood too.

Any advice, experience to share?

The poor kid has gone through so much...

Thanks for listening, hugs to your kiddos-

Heidi, wife to one great guy
and SAHM to
*Senna, 13 - Hypotonia, SID, Reflux
*Easton, 10 - OCD/anxiety and drives me a bit crazy!
*Logan, 7 (keeping our fingers crossed on this one!)
*Jack, 4 yrs, Unspecified Congenital Myopathy, 35wkr, Hypotonia, SID, Food Aversion/Texture Sensitivity, Hypermobile, Fine/Gross-Motor Delays, Fatigue, FTT, Reflux, Slow Motility, 99.9% G-TUBE FED, Breastfeeding and also happens to give the biggest hugs and the sweetest kisses!

Wow, you have so much to deal with. I'm sorry. I'm also sorry that your medical team is making light of your concerns. That is so frustrating to deal with, and unfortunately, happens more often than it should.

As for aspiration, yes, he could be aspirating. G-tube does not rule that out entirely, although, he could still be refluxing enough to aspirate. He could also be aspirating saliva, gastric fluid, etc. And yes, there can be microaspiration.

On the other hand, the coughing and throat clearing could simply be the reflux worsening. It's such a catch-22. Aspirating something as sweet as tube feeding, will generally cause pneumonia, so it's encouraging that Jack isn't sick more than he has been, respiratory wise. Personally, I think the Pulmo is not a bad idea, especially with the cough. A consult certainly couldn't hurt, and if he feels it's the reflux, no harm no foul, you don't have to go back.

I hope you find the answers you are looking for. I am so glad that you find the bright side of Jack. Enjoy those sweet hugs and kisses.:hug:

Lori,

Thanks for your quick response. Maybe we'll get more information with the Endoscopy this week to see if Jacks Reflux is worsening. I really never thought he was at risk for aspiration but lately with this cough and all the swallowing at night makes me wonder if its possible. Im not thrilled with the idea of adding another specialist to the list but maybe I need to push for this one just to be sure he's OK.

I just dont ever see him eating with all the issues he has, sigh....

Anyways, I really appreciate your input. Your little girl is adorable! You gotta love those pumpkin pictures!

Thanks again, biggest hugs to Brenna-

Please keep us updated on the endoscopy. It is possible that they might actually see some aspiration during the endo.

I'm glad you found us. Unfortunately we have several kiddos like Jack here at IRD. You should really get to know Mary and Lindsay (Avasmommy). They are in very similar situations to yours.