Videofluoroscopy finally have appointment through - now I am panicking about it!

[hazeyjane]

Ds has finally got his videofluoroscopy booked, after 6 months of it being marked urgent, being sent to the hospital and being mysteriously cancelled. In all the faff of trying to get it sorted i haven't really thought about the actual procedure. Can anyone give me some heads-up on what will happen, and also any tips on ways to make it better,I know that sometimes, depending on how the child eats it can be inconclusive.

Ds (19 months) is going through an amazingly fussy phase food wise. His paed thinks he is possibly aspirating saliva, so how will they test for that? He is also very clingy under usual circumstances, but since his some horrendous blood tests and a hospital stay at Christmas, he is particularly bad in medical environments, so i'm not sure how we are going to even persuade him to eat!

Any advice would be appreciated - thankyou.

bump

Hi, I don't know whether this will help much as DD had her vidoefluoroscopy to investigate her speech and palate problems.

For us it was simple, she sat on a stool wearing a lead apron and the speech therapist sat next to her, the rest of us all crowded into the little booth in the corner behind the glass. The speech therapist went through her book of sounds and DD repeated the words - that was it!!
We watched the moving xray pictures on a monitor inside the booth.

Lining up the equipment so that it was correctly postitioned took a little while.
The environment was different from a medical treatment room because there was much more space.

It was also very relaxed, there didn't seem to be any time pressure and there weren't lots of people crowding around but I don't know if things will be the same for a swallow study - can you arrange for him to be hungry? I think DD was older as well so perhaps a little more co-operative than an angry two year old?

Hi Hazey
DD has this done about 4 yrs ago. She needed to swallow barium in order for it to show up on the x-ray as she swallowed. I think they asked me to bring something she would eat that the barium could be mixed with - so I took weetabix. (Sorry i can't remember what the restrictions were on what I was allowed to bring). I have to say she wasn't very keen on cold weetabix and barium, so I think she probably aspirated in an attempt not to swallow!!!!

I would recommend you ring the dept and discuss it with them - or possibly your SALT if the referral was done by them (which DD's was) DD is in a wheelchair and we had to fit that between the x-ray frame which was fine, but you may need to ask them:
What they expect your DS to sit in/on ?
Does he have to swallow barium - and how do they expect you to get him to do this - as he will undoubtedly spit it out!!!
Is there anything you can bring to help make the experience more pleasant for your DS eg his own bowl/spoon, suitable food/drink from home that he will swallow and is compatable with the barium, - possibly even a high chair for him to sit in.

I am assuming that the method they will be using is the same as it was at my local hospital 4 yrs ago!

Good luck

Hi, Like BigBlueBus, my DD had videofluoroscopy for palate investigation so I don't know what they would do for swallow. I know that there is an option to put a drip of a liquid with barium down the nose and monitor that, so maybe it will be something to swallow for your DS? I was really worried about it like you due to bad hospital experiences for DD. We did practise at home sitting in front special chair with home camera to get used to the idea. On the day we made a big fuss about looking at the lead aprons (they had cartoon pictures and were all different colours). We also just tried to be laid back and gently talk about what we could see in the room.
This link might help to give you an idea of what the machine looks like (so at least you know).
Good luck.

As bbb says, they usually give you lots of info about what to bring from home, what the barium can be mixed with (and there's usually quite a bit of leeway so you have a reasonable chance of getting child to swallow the barium).

Would suggest trying to use whatever texture your lo has specific issues with, to get the best results. (dd2 could manage thick consistencies, but thin or drinks were pants.)

If you haven't had an info sheet then contact the dept and ask for one. And yes, hungry is good. Starving can be bad as if there is a delay they will be even more crabby and uncooperative than is to be expected when someone is trying to get you to swallow barium lol...

just saying hi hazey, dont know anything about this but I will be thinking of you

just wanted to let everyone who helped on this thread know that we had the videofluoroscopy yesterday.

it went surprisingly well - i was pleased because our SALT, turned up on her day off to help out, and so we had the radiologist, a SALT feeding expert and our SALT, ds was amazing, sat happily in the machine, and ate and drank a variety of stuff with barium mixed in, dh and the pro's watched from a little room. So it seems as though ds isn't aspirating food (this is fantastic news, as there has been talk of him being tube fed), but food moves very slowly down (due to low muscle tone), and has a tendency to pool in the throat area - from this they have guessed that he probably does aspirate saliva into his lungs, when he lies down, which means when he gets a cold, he also aspirates all the snot and goop, and as he has reflux he is probably aspirating some acid too. The feedingSALT is coming over with the video of what they saw to talk through it all and she is going to have a meeting with ds's paed to discuss the best way forward.

thankyou for all your help

Hi Hazey
Glad to hear that it went well. It was good of the SALT to come on her day off - DD's SALT did the same - she had even given me her home phone number in case the appt came through in the holidays. It's great when you get a supportive professional.
Good news that your DS isn't aspirating food - DD was - especially when it was something she didn't like, as she would hold on to it in her mouth and some of it was finding its way into her airway. Also due to her very poor muscle tone, the food she did swallow moved very slowly to her stomach and she would eventually get bunged up like a blocked drain so that no more food would go down and started to go into he airway causing her to cough and vomit.
Hopefully they will be able to come up with a suitable solution to your DS's problem - presumably drugs for the acid reflux and making sure his head is higher than the rest of his body when sleeping. (DD has a profiling bed so easy to keep her head raised). Note sure there is much they can do about the saliva though unless he is overproducing - in which case there are 'patches' to dry it up.

Just to say that I'm so pleased that you had a good experience with the 'video swallow' - we had a terrible experience, and I was unsure whether to divulge that before you went along...

There were loads of people in the room when we did it, no-one introduced themselves to our DD who was then 12 months old and could swallow nothing more than very thinned-down puree. We had to do all the work of trying to get the stuff into her, which she hated, and struggled with. She screamed and screamed - and thought we were to blame as we were the ones having to do it - she was covered in stuff all over her. Then they wrote a letter saying that she'd been fine on thin and thick fluids and solids - which wasn't true at all! We only used the thinned-down puree we had supplied.

Horrible, and led to no help or anything, as on paper it all sounded as though it was easy. What they hadn't waited to check, was what happened 5 mins or 10 mins AFTER she drank stuff: ie it came back up into her mouth. But they didn't wait around to record that. So all a bit of a waste of time, and lots of trauma.

Sorry, long burble from me. You can see it made quite a lasting memory...! So glad your went better and that you have supportive SALT too.

Glad it all went well for you. We had a 24hr ph probe study done as well at GOSH and it turned out that DD was refluxing at night for about 30 mins. Explains the night time cough and her collapsed lower left lobe on her lung. We are now on azithromycin as a preventative and omeprazole mups for the night time reflux. We have also had various videofluroscopies and nasal scopes. She also has a tendency to pool saliva and we were advised to thicken her drinks as she has a tendency to aspirate. I did point out that she naturally drinks slowly because of this, and they had forced her to gulp things down. But what do I know?? I am only her Mum after all!!

Thankyou, it is so interesting to hear your experience - and helpful, as it makes me realise things about ds, that I hadn't before. Ds also has reflux, they saw him reflux during the video, and think he probably does it worse at night, a ph probe was mentioned (I'll be back to ask about that!), at the moment we have just switched to omeprazole after being on Ranitidine for about a year. He has had several 'episodes' which at first we thought were seizures, but which his consultant thinks may be him choking on the pooled saliva in his throat, but I suppose it could be reflux - it is very difficult to pinpoint. I think that ds used to do what you describe, Bigbluebus, with the food backing up, he would gag, and choke - it has improved now he is able to drink better, he used to push water out with his tongue, and didn't seem able to swallow thin liquids.

hey Lenin, how lovely to see you - hope all is ok in the Lenin household.

I think it should improve as his muscle tone improves. But he tends to be very slow in a lot of things, it is like he is wading through treacle, they are testing for things that could cause chronic fatigue as he gets so tired. It is all a bit of an enigma at the moment. He has had patches to help dry up the drool, but they didn't work and then where he had the patch became infected.

unfortunately we had to cancel the meeting with the paed today as he has a sick bug.

Chronic fatigue could be an indicator of sleep apnoea. Does he have any history of breathing issues? If he is snoring at night, you may want to look at getting a sleep study done by a respiratory specialist team. Also you may want to think about seeing a McTimoney Chiropractor with regards to sleep. www.abacushealth.co.uk/ I have found this invaluable.

Hi hazey, DS2 had the ph test, which was fine although you do have to stay in hospital for the entire time. It's only 24 hours though.

He sounds so much like my little boy, did you get a diagnosis at all from genetics?

hello slightlycrumpled, ds has had a basic genetic test to find out whether he had spinal muscular atrophy (he didn't), the results from that said that his male karyotype was normal. He then had an MRI (normal) and a ton of blood tests -mostly to do with metabolic function, but also for Prader-Willi (normal) and liver function - we're still waiting for results of these.

After his MRI he saw a neurologist in oxford, who said he didn't think his issues had a neurological root, but pointed out several things that he thought would lead us down a genetics path - mildly dysmorphic features, tapering fingers, a preauricular pit, peeling/flaky toenails, hypertelorism, prominent tongue. So at the moment we are waiting for an appointment to come through to see a geneticist in Oxford, he said she would probably order a full micro array (is this right, there might have been another one mentioned?). It all takes so long though, I can't believe all this tesing has been going on for over a year now, it's exhausting.

Do you mind me asking about your ds? How old he is, does he have a diagnosis? What sort of issues does he face?

Hazey, where do you live? We are in Milton Keynes and have been going to Oxford for years! The Geneticists are based out of The Churchill, if thats any help.

Hi Hazey, my little boy has 22q1.1 deletion or Di- George syndrome as its also called.

He has mild dysmorphic features, tapered long fingers, very low set ears & is very hypermobile.

He also had a pharyngeal insufficiency (type of cleft palate), severe reflux, hearing loss, impaired immune system, severe speech delay/ impairment.

Your little one just sounds so similar whenever I read about him, (I'm more of a lurker nowadays) & thought I would ask. Have they ruled this one out already? I guess the symptoms can mirror many different genetic conditions.

We didn't get his diagnosis until he was four, and although he had been tested for many life limiting illnesses I was still shocked when they found something, even though we were kind of expecting it at the same time.

Hope you get some feedback / plan of action from the video fluoroscopy soon.

thankyou slightlycrumpled.

i have come across 22q deletion before and thought there were a lot of things that were similar to ds. He hasn't been tested for this but I think we will mention it to his paed next time we see him, although I know he will roll his eyes if he thinks we have been googling!

Hazey, was it hyoscine patches? Dd2 was allergic to the patches, but you can get an oral prescription too... It was a right pita, the patches worked and even her speech was clearer without all the drool everywhere, but the skin reactions made it impossible.

The rest of it we just managed with suction and on-tap anti-b's whenever she started heading downhill or had a period where we suspected aspiration of saliva etc.

Fwiw, she grew out of the aspiration stuff at around 4... I don't think she's had a chest infection for about 3 or 4 years now, so for her it was def time limited.

DD4 has Emanuel syndrome (11.22translocation) very similar to Di George. She has dysmorphic features, poorly repaired cleft palate. She too has very tapering (albeit tiny) hands and feet. Swallowing is a problem and is G-tube fed she also drools for England and despite being nearly 7 uses 5 bibs a day.
She has daily Hyoscine patches they make little difference. Another delicate
problem she has a rectovaginal fistula which is proving problematic as she objects strongly when being cleaned. Slightly off thread, I wondered if it is
relevant. Please ignore if it is and good luck to your lo

thankyou 2old2beamum (i like your name, i feel that way most days!), i googled emmanuel syndrome, and there are a few similarities, but overall it doesn't strike as many chords as some of the other syndromes associated with the 22nd chromosome - but it is interesting that it is all within the 22nd chromsome, iyswim. I will definitely mention it to his consultant, I am so annoyed that we had to cancel our recent appointment.

The rectovaginal fistula must be very difficult for your dd, especially as she gets older.

It was hyoscine patches that ds was on, but they really made no difference, although we only went up to half a patch. It is difficult to know how much is teething and how much is low tone/prominent tongue etc, because of his age, but he gets through lots of bibs and tops a day and it is enough that wherever he has been there is always a puddle of drool.

it is so helpful being able to go through all this on here with people who are going/have been through similar things - thankyou all of you.

we were also offered botox in the salivary glands, potentially leading to reversal operation of the glands with the maxillofacial team through neurology... they won't do the surgery until later but have heard of some tinies having the botox... surgery was more for drooling though - it wouldn't have an effect on the aspiration and would poss make it worse. the botox would be an interesting thing to ask about though?

we decided not to as we were managing with the anti-b's etc and we felt the procedure was a little risky (personal opinion, it's worked really well for some kids but there are potential side effects). something to bear in mind, anyway.

Thanks hazeyjane I hope things get sorted out for your LO please keep us updated, it is a rocky path with rare chromosomes. RE dd's rectovaginal fistula we have been told as she will not use her vagina like most females it needs no treatment!!! He should try cleaning her she behaves like an sexually abused child. I am about to throw my toys out of my pram (may start a new thread)
Re name it is really true I am 67 and have a 6year old (don't tell anyone) and a few more
Take care.

Just had the feeding specialist over to show me the video of ds's swallow - it turns out he is in all likelihood aspirating food, his swallow is worse than they made out, and his oral skills are poor. She is going to analyse it with ds's consultant and we need to think about whether he should have a gastrostomy tube for a short while (Ds is a big boy, so this would just be to see whether he stops having so many chest infections, and to give him time to improve his oral skill and for his muscle tone to develop I guess?) This seems like such a huge thing, in order to prevent chest infections?! I don't really know what to think.