Hi, I've just posted a whole catalogue of updates, but specifically wanted to get some information on swallowing:
http://reubenjackdodd.blogspot.com/2007/11/november-medical-news.html
Going to chat to MK later as Lucas is at the same stage, but I've been browsing your blogs for information on swallow studies and oral feeding and was particularly interested in Max's saltine crackers and peanut butter experiences and Eva's KFC! Reu appears to have all the kit to make it work, but needs to learn to coordinate swallowing.
So the decision as to what to do re oral feeding was referred by the OT to Dr Charlie our paediatrician, which is interesting, as I would have thought that would be OT's domain solely, especially since OT witnessed the squash puree. We've therefore walked away from Dr Charlie's with it's ok to try a bit, but I recently bumped into a British speech therapist here in LA and she mentioned a CHARGE kid who died from aspiration pneumonia brought about by oral feeding. He had a Gtube but I understand his parents believed he was swallowing and insisted on oral feeding. Thus, this leaves us a little in the dark re specific objectives and quantities.
It's certainly more difficult to detect swallowing with the trach collar in the way, so the OT showed us how to feel it and I believe we hear it too.
So... any ideas how we should go about this? I tried a teaspoon of the said puree again this morning, just before his 1st feed. Is that about right and should I do the same with each feed?
http://reubenjackdodd.blogspot.com/2007/11/november-medical-news.html
Going to chat to MK later as Lucas is at the same stage, but I've been browsing your blogs for information on swallow studies and oral feeding and was particularly interested in Max's saltine crackers and peanut butter experiences and Eva's KFC! Reu appears to have all the kit to make it work, but needs to learn to coordinate swallowing.
So the decision as to what to do re oral feeding was referred by the OT to Dr Charlie our paediatrician, which is interesting, as I would have thought that would be OT's domain solely, especially since OT witnessed the squash puree. We've therefore walked away from Dr Charlie's with it's ok to try a bit, but I recently bumped into a British speech therapist here in LA and she mentioned a CHARGE kid who died from aspiration pneumonia brought about by oral feeding. He had a Gtube but I understand his parents believed he was swallowing and insisted on oral feeding. Thus, this leaves us a little in the dark re specific objectives and quantities.
It's certainly more difficult to detect swallowing with the trach collar in the way, so the OT showed us how to feel it and I believe we hear it too.
So... any ideas how we should go about this? I tried a teaspoon of the said puree again this morning, just before his 1st feed. Is that about right and should I do the same with each feed?
5 comments:
Eva is eatting a purees also she does not have the chewing down so if she find anything solid in her food she spits it out.
Has Reuben had a swallow study done? If so did he pass? Eva passed hers at about 7 months old and even before then we gave her tastes and I think you as the mom will know if he is having any problems with the tastes. What I have learned over the years is profressionals do not know it all. ALSO so many of them say one thing and others say anther. I say if you feel he can handle it then tastes right now will not hurt him. They didn't with Eva and it also helps them learn and know that food goes in your mouth and not just in a tube in your belly. Kids who do not get at least some tastes have a hard time with the transition.
You are doing great and I know its very hard. Hang in there as soon as he is a year old you will be looking back and be shocked at all you went through and telling yourself "Wow I did it"
Hugs,
Crystal and Eva
Luke is 9 months old and also has a trach. He is exclusively an oral eater - formula and baby food with cereal mixed in to thicken it. We know that he aspirates a tiny amount of food sometimes because occasionally we can see a change of color in his trach secretions just after he has eaten (or during the last few bites). I can usually tell when he might aspirate because he coughs or starts crying (which are what cause the aspiration). His ENT told me that his having the trach makes aspiration more likely. But so far we have had no problems with sickness from it. A couple of ENT's have said that every once and a while aspirating a tiny amount is not a big deal. I don't know what Reuben's secretions are like normally, but Luke is very juicy and coughs up his secretions all the time.
Good luck with everything! I agree with Crystal - you might want a swallow study if you haven't had one, but go with your gut!
Candi (Mom of Luke, 9 mo chARGEr)
have u had any swallow studies done as for the parson with the kids who died of pnmonia form eating i dotn believe its likely to happen yes it could but then its like say going out on the st and thinking ull get run over so i guess im saying just take it slowly get a swallow study and taste test r good coz as others ahave said on theri blogs how will they learn if we dotn try hugs ellen
Catherine,
So many new posts... I don't know where to begin or how many places to put my comments. I am starting here!
If you have the ok from the Dr. and the swallow study looks good (has he had this... I am trying to remember...?) then I would continue exactly as you are. If he hasn't had a swallow study, I would recommend it. This will truly show any aspiration. I saw you added a poll – I answered 6-9 mos… but should add that Gracie's had several over time.
Speaking of aspiration... the trach is a dead giveaway... if you see the color of Reuben's puree in his secretions, then he's aspirating a bit. Not good, obviously, so when you see the color, it's time to stop. (While a little aspiration is not too harmful, a little aspiration on a continual basis can wreak havoc on the lungs over time.) Try again the next day or the next. If you notice he's getting a lot "junkier or juicier" with his secretions... but it's you're not seeing color, then he's probably okay and just producing a lot of saliva in response to the oral stimulation.
In response to the child w/ CHARGE who died of aspiration pneumonia... aspiration is always a risk... always... but you cannot let the fear of the "what ifs" stop you if all indications are pointing toward Reu being safe to do tastes with. As long as you use common sense and the proper precautions, then the benefit to trying outweighs the risks. Unfortunately, there are far too many examples of things that have gone wrong and we've lost a child with CHARGE... but with common sense and the proper safety precautions, you have to push forward and try things, otherwise there is a whole other kind of harm that can be done by holding our kids back.
I am going to be scattered here... not nearly as organized as your medical update post! So bear with me! :-)
Re: Cranial Facial Panel (I am assuming this is what you meant when you mentioned Cranial...? If not.. then ignore me!) There is a panel of several specialties (drs.) and then generally a nutritionist, social worker, Speech/oral feeding specialist and an audiologist. They all work together w/ dentists, ENT, surgeons, etc. and see your child in a marathon of a day... This "panel" clinic is usually covered by medi-cal/CCS so a great way to see all of these specialists at once and get them all on the same page. They will cover dental issues (probably x-ray him next year), possibilities regarding palsy repair/nerve regeneration if applicable (there's a lot to know about the risks of surgery if they bring it up to you...)and, of course, the coordination of the swallow, which is completely affected by the cranial nerve anomalies, as is his olfactory issue. (Do you have the CHARGE manual…?)
Rest assured, you are doing ALL THE RIGHT THINGS... and seeing ALL THE RIGHT PEOPLE... so when you feel overwhelmed... remember that! And remember, if you can't get it all done in one day, you pick what MUST get done first and do it without looking back and regretting the decision... :-) (I can dish out advice like a champ, I am not so good at applying to my own life!)
Speaking of swallowing... just a quick aside about Gracie - - she was in the hospital (outpatient) last week for a battery of procedures and tests... her esophagus is so irritated and swollen that EVEN IF she could physically coordinate a swallow, she would not be able to swallow at all... there's no opening right now. This could be part of the reason that she's not swallowing and is so "junky" - - nothing is getting by that area. There is a lot going on with her – the irritated tissue starts at the esophagus and runs through her entire digestive tract… we can talk about it off your blog - but I specifically mention that issue to you (the esophagus) so you are aware of Reuben's "swallowing" baseline now... and if you notice changes you can approach the ENT immediately. (Reflux can cause a lot of irritation in that area… this is not the culprit, at least not the only culprit for Gracie… but I mention so you know.)
Regarding nursing... I am so sorry... I wish there was some advice I could give. If you choose to change, I hope the grass is greener. For us, it wasn't. Just a lot of empty promises. Bottom line: they can't control the nurses if they aren't physically there to do so... and so often they don't reprimand them for their deviant behavior. When they do, the nurse just leaves that agency and goes on to the next. One time, our old agency actually blamed us for not providing enough to keep the night nurse entertained. I NOT SO KINDLY reminded them that they are here to work... to keep my daughter breathing, feeding, comfy and hopefully, sleeping and that if they require a more entertaining job environment, then they should consider leaving home care. Anyway - - I wish you luck and if you find a solution, I hope you share!
Regarding night feeds and Reuben throwing them up... have you tried what we did with Gracie? That is, feeding him through the vent tubing/syringe on a drip. I highly recommend giving this a try… this is one of the things that they don’t teach you in the hospital. You will know after a few nights if feeding him that way at night allows him the relief and prevents him from vomiting. This was the ONLY way we could feed her for the first year at night... otherwise, she vomited every night (and she wasn't trached then). It was a lifesaver for her and us. I know that they didn’t need to do this at the hospital, but he was more drugged and far less stimulated by his environment. Out of curiousity, do you notice more vomiting on days that he’s been busier…? This was true for Gracie… and others that I know of on the list - - so I am just wondering. I will say it once more… I really would recommend giving this a shot.
Super curious about the school district being involved at this stage? Are they part of the Early Intervention team? Our school district wasn’t involved until Gracie turned three… so I am super curious about this!
In hindsight, I should have probably split this up or emailed you! I get wordy when I am tired... as you have learned by now! :-)
xox,
Kristi
Jacob has annual swallow studies at Great Ormond St, usually they show some tiny bits of aspiration and they tell us to continue with 6 or 7 flat spoonfuls of pureed "tastes" but not to increase beyond that. He is 4 yrs now. They are very cautious in the UK about oral feeding where there is incoordination of swallowing, nerve issues and risk of aspiration. Sometimes I wonder if a more aggressive USA approach would be beneficial, but we have found when we increase the tastes he begins to sound gurgly and gets more pooling of scretions, so we remain cautious. I think as you do some preliminary tastes with Reuben you will be able to assess hw much he can safely handle and know when to stop or when to give him more. Definitely recommend you have a swallow study - you have to find out for sure if he is aspirating at all...Alexis (Mum to Jacob)
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