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View Full Version : I need more breathholding brainstorming.


suzanne2545
04-07-2009, 05:43 PM
I know I posted about this a few months ago in off topic but I need some more ideas, advice and thoughts. Plus, I am hoping Rene will remember some of what she posted to me since it is gone now.

Parker is a breath holder. We've talked to all of his doctors about it. Described it in detail and repeatedly told not to worry about it, that he will outgrow it and that we should try to keep him out of situations where we know he might be triggered and avoid collateral damage - he tends to fall down when he does it. All of this and the little scamp has never done it in the presence of a medical professional . . . well that changed yesterday.

We were in Cincinnati for his hernia/hydrocele repair (went fine BTW). He had an episode in pre-op. The nurse was shocked. She said she's been a nurse for 20+ years and has seen "breath holders" but this looked like nothing she'd seen before. She strongly encouraged us to continue discussing it with his doctors.

Ok. Then he did it two times in the PACU. The nurses were warned about him so they didn't panic and handled it beautifully. But they too said they've never seen anything like it. He had the sat monitor on and both times hit the low 40s. They also said we've got to talk to his doctors more about it. Of course, they didn't call a doctor over or anything so I don't think they are THAT concerned. But they wanted to know how often he does it and they seemed to question how often you can desat that low without starting to damage brain cells. This is, of course, our concern.

They also said that they had never seen a kid arch and extend their arms like that or get the clenched fist and both the pre-op and PACU nurses agreed with my belief that he isn't doing it on purpose but that something is happening that is making him temporarily unable to breathe.

I know Kate said this is exactly what Mitchell's breathholding spells looked like. Anyone else got some descriptions for me.

Dr. D'Alarcon and I spoke about it in Feb and we discussed the possibility that it is paradoxical vocal cord movement. That came up post LTP when he had that little incident that got him re-intubated. It makes some sense until you factor in that he did this while trached, which makes me think if there is something physical happening it is happening below the trach site.

Honestly, although in the back of our minds we are concerned about the desats we'd sort of just put this out of our minds, as so many top doctors have told us not to worry about it. But when experienced nurses tell us that they've never seen anything like it then I start to worry again. I'm glad we have the documentation about it happening and about the desats but I don't know where to go from here.

Rene sent me a link about a type of seizure that mostly fit but there were some differences.

Anyone got any ideas? Am I looking for something where there is nothing?

debvec
04-07-2009, 05:58 PM
Suzanne, This happened twice with Amanda prior to the trach. We were also told it was breath holding as it would happen when she was upset, but I never thought it was either as she would go totally rigid, arch turn blue and then go limp. With her I believe her airway was slamming shut briefly, either her cords would totally block or something would collapse with all the pressure from her taking such huge breaths and being upset. I was never able to have it witnesses by anyone but my mother and it scared the bejesus out of her. Is there any way something could be closing briefly with all the pressure from the deep breaths and tightening of muscles from being upset? It sounds so similar to what happened with Amanda. I wish we could have met as well but that would have required you having some complication so I am glad that wasn't the case! Sorry I couldn't be more help but really, I think it is something more than just breath holding so I don't think you are crazy!!!

suzanne2545
04-07-2009, 06:09 PM
Just doing some more research on line and found this- it perfectly matches Parker's episodes. It scares the crap out of me to read that kids do spontaneously die during these episodes.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1792104

Ainsley's Mom
04-07-2009, 06:36 PM
Just doing some more research on line and found this- it perfectly matches Parker's episodes. It scares the crap out of me to read that kids do spontaneously die during these episodes.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1792104

Holy crap! :eek: You probably shouldn't be reading on the internet although you've been left with little choice since the doctors haven't done anything to help. It does sound like the kids in the study had more frequent events because they were able to catch them on "film". I hope you can get them to listen now that they've been witnessed by the nurses. Could you ask any of them to talk to one of his doctors? It might get the ball rolling a little quicker to hear it described by the nurse (shouldn't be the case but I wouldn't be surprised if it were). I would want answers too if I were you.

Until you get some answers: Do you still have him on a monitor at night? If not I hope you'll consider it. And do you still carry an ambu bag around with you? I'm assuming if he stops breathing and turns blue they would recommend you use the ambubag until he comes around. **** now, I'm getting scared. Sorry, I guess I'm not being very reassuring. I just want Parker to be safe.

kirafaesmom
04-07-2009, 06:49 PM
Kira's a breath holder and always has been. NOTHING like what you are describing. I would definitely NOT accept that "he'll outgrow it". Especially with the new information you have. I'm praying you can get a doctor to LISTEN to you. As I have learned and been advised frequently, go with your gut. It's usually right.

Melisande
04-07-2009, 07:05 PM
Suzanne,

This was a major reason Donovan was trached, HOWEVER he did not have any airway issue. We still do not know why, what or how these occurred. Donovan was having 7 - 12 cyanotic episodes WHILE AWAKE (not to mention his slow and shallow breathing while sleeping plus apnea) a day when we brought him home from the hospital. They were not typical "breath holding" spells and I would hesitate to call what you are seeing as a "breath holding spell" because you will have doctors thinking it is behavioral. We pretty much flew into St. Louis Children's and Donovan started having a "spell" right on command when he was 10 days old. Saved us from explaining to the docs right away!

For Donovan, mostly in combination with agitation or frustration, he would start to get mad (early on, desats happened almost everytime he was upset) within 10 seconds or less he would turn shades of gray to blue, purple, then black (his longest prior to the trach was 5 minutes). O2 sats went well into the 20s and below, if they read at all. At that point, he went into what looked like a seizure and it was basically a post-hypoxic seizure at that point. He clamped down durning this process, arching his back, racheting his arms, and stiffening his whole body. When he finally released, he would go limp and looked post-dictal (like after a seizure). Not pretty. Even with the trach and bagging with 100% O2, since he was clamped down, without air moving, there was pretty much nothing to do but wait it out. There was, however a significant difference for Donovan with the trach on the length of time these "spells" lasted. He eventually got better with time, but didn't stop completely having them until he was 3 years old.

It was not a vocal cord issue or a vagal nerve response either. There are physical causes for cyanotic episodes for most kids. It is something to be concerned about and you need to find a doctor that will take you seriously. We've also done 4 or 5 video EEGs also, to rule out a seizure. Since then, I found out some of the kids with CCHS (although Donovan doesn't have the gene) have a heart pause thing, which sounds so much like Donovan's spells, it scares me. We weren't monitoring his heart so closely when the research came out on this, but I still wonder.

I don't know if this is any help to you or not, Suzanne. Each kid is so different. Good luck!

Ainsley's Mom
04-07-2009, 07:14 PM
Something that Melisande said gave me any idea, to take a video of one or two of these episodes and then show them to his doctor. I think that would be best of all. They need to see it.

suzanne2545
04-07-2009, 07:21 PM
I've e-mailed the link to Dr. Cotton and our ped in Canada who we love, trust, adore. He also has been through a lot with Parker and knows him very, very well.

Susan - I know I shouldn't be reading the internet. I've gotten very, very good at reading and putting things on the backburner until I have a real reason to worry. I've from time to time googled on this subject and never really came up with anything that fit Parker exactly. This article does, to a T. He has a tonic convulsion with it. He has a gaping mouth with no cry. The precipitating stimulus is exactly as described in the article. The time frame of the "episode" is exactly as described. There is NOTHING in the article that doesn't fit. Of course, some of the kids have some other issues, but many don't.

We do have our ambubag but we rarely have it within arms reach during an episode and, also like the article, it is nearly impossible to inflate his lungs with it during the episode.

Melisande - Your information is definitely helpful. I assume the episodes are gone now with the trach? This is what always puzzled Parker's docs - that he still had the episodes with the trach. Cotton even went so far as to say that you can't "hold your breath" with a trach.

You have a very good point about not using the term "breath holding". We've taken to calling it that because that is what the doctors called it. Truly they are episodes. Not unlike those he had before he was trached.

I'm assuming that Dr. Cotton or a nurse will get back to me quickly on this. I'm also assuming this is a pulmonary issue. Does anyone think I should call pulmonology at Cincinnati tomorrow. I'm certain that we would want to deal with them for the time being vs. someone local. I'm assuming you can call and talk to an intake nurse like you do for ENT there and they give you some guidance about how or if to proceed with them.

Kira's mom - would you be willing to describe Kira's breathholding to us? I'm very curious.

suzanne2545
04-07-2009, 07:22 PM
Something that Melisande said gave me any idea, to take a video of one or two of these episodes and then show them to his doctor. I think that would be best of all. They need to see it.

We've thought of this. But really we'd have to try to trigger an episode. If feel weird doing that! And I don't know where my video camera is. Guess I need to find it, because you are right.

llwilliams8
04-07-2009, 07:26 PM
To me it sounds just like what my daughter does and she has central apnea. She was born with spina bifida and Chiari II Malformation. That is where the brainstem is being pulled down into her spinal column. They tried a surgery to help relieve some of the pressure but it did not help so that is why she is having to be trached. The malformation she has effects breathing, sucking, and swallowing--her's is pretty severe. We were told that once the brainstem starts to mature then the central apnea should go away--usually happens between the ages of 3-5 years. It is not uncommon for Autumn to drop into the teens or single digits when she has an episode. When she does have an episode we just turn her 02 on and she will come back up within 1minute or less. Sometimes she desats and is looking around the whole time like she has no clue what's going on. Other times she is arches her back, turn blue, and arms go above her head and she gets stiff and her tongue will go to the roof of her mouth. When she starts crying she will start to come back up from her desat. Before getting trached we would have to bag her to come up but since being trached we just turn on the O2 and she's fine. As far as the brain damage goes, we have not seen any effects from Autumn as of yet. She use to have mulitple episodes a day and now she only has them every few weeks. She is even on the vent and still has episodes because her brain is just not telling her to breath and sometimes the vent breaths just still are not enough. We are told she should outgrow this as her brain matures and we have already seen them become far less frequent than before. I'm not sure if this helps you but it may give you a new direction to go that it may be something with the central nervous system. Just a thought.

suzanne2545
04-07-2009, 07:35 PM
When you say "central apnea" what exactly do you mean. I sort of understand CCHS but I'm not totally sure on the central apnea bit. Interestingly, the Pre-Op nurses oldest daughter has central apnea and was having a sleep study that night. Wish I'd thought to query her more specifically but we had the surgeon and anesthesia in and out and we didn't have much time.

kirafaesmom
04-07-2009, 07:37 PM
Kira's mom - would you be willing to describe Kira's breathholding to us? I'm very curious.[/QUOTE]

It's never really a straightforward thing. Kira has very, very shallow breathing patterns (sleep study pending). When she's upset or in pain she "clamps down" Does a full arch/stiffening and desats into at least the low 70's or below. Her lowest recorded drop is 27. Amazingly she never has passed out. We've always been told she'll outgrow it and that if it got bad enough she would pass out, thereby relaxing her airway and would then breathe again. Part of our "Kira's Cliffe Notes" when having IV's or blood draws would be to warn the nurse/tech that she would likely desat and turn blue.....that she had never passed out and simply don't be alarmed but have O2 ready. Really makes it interesting when dealing with "behavioral" fits.....can't very well let her cry it out knowing she's probably tanking her sats.

I really hope you are able to get someone's attention. I would be rattling some cages if I were you.

Michelle

Ainsley's Mom
04-07-2009, 07:42 PM
We've thought of this. But really we'd have to try to trigger an episode. If feel weird doing that! And I don't know where my video camera is. Guess I need to find it, because you are right.

Find the camera. Then carry it around with you for a few days. You'll catch one. I agree it seems cruel to try to trigger one. Although if he's having them frequently enough, one more wouldn't hurt. But I think a video would be invaluable to the doctors and go a long way toward figuring things out. If you can catch one try to zoom in on his face to get a good sample of his coloring and expression during it. Sometimes you gotta do what you gotta do. This job aint' for the faint of heart.

suzanne2545
04-07-2009, 07:42 PM
Michelle, Thanks. That is a very helpful comparison. I totally get what you mean about managing behaviour. We've been reluctant to let Parker Cry it Out at night and while we do try to steer him clear of incidents that we think will triggle an episode we can't coddle him. I'm having a hard time picturing my baby in the board room when he grows up, perhaps turning purple and passing out will be an effective negotiating mechanism for him.

suzanne2545
04-07-2009, 07:44 PM
Find the camera. Then carry it around with you for a few days. You'll catch one. I agree it seems cruel to try to trigger one. Although if he's having them frequently enough, one more wouldn't hurt. But I think a video would be invaluable to the doctors and go a long way toward figuring things out. If you can catch one try to zoom in on his face to get a good sample of his coloring and expression during it. Sometimes you gotta do what you gotta do. This job aint' for the faint of heart.

If I can't find mind this might be just the excuse I need to by the new 5D Mark II I've been eyeing. It has video capabilities. It is wrong to use that as an excuse to get a new toy?

Ainsley's Mom
04-07-2009, 07:51 PM
If I can't find mind this might be just the excuse I need to by the new 5D Mark II I've been eyeing. It has video capabilities. It is wrong to use that as an excuse to get a new toy?

OMG! I did not know about that! My BIL camera salesman told me it couldn't be done. I knew he was wrong. That is one cool toy! I could see using whatever crazy justification you could think of to get one of those!

llwilliams8
04-07-2009, 07:55 PM
By central apnea it just means she has apnea because of the brainstem problem with her central nervous system. Like sleep apnea has to do when they sleep since her's is central it can and does happen at any time. It's just the central nervous system nerves that don't get the signal to her brain that she needs to take a breath so she doesn't and that is why she has to be on the vent so that it will breath when she "forgets" to breathe. She has no airway or lung issue so all of her issues have to do with the brain and spine (central). I hope I explained that clearly.

Ainsley's Mom
04-07-2009, 08:02 PM
If I can't find mind this might be just the excuse I need to by the new 5D Mark II I've been eyeing. It has video capabilities. It is wrong to use that as an excuse to get a new toy?

Let me get this straight. You can record video AND take stills at the same time?! OMG that is SO amazing! I wonder if I could convince Steve to buy me one if I promise he won't have to take video anymore while I shoot pictures. :rofl:

Melisande
04-07-2009, 08:02 PM
No, Donovan still had spells even after the trach, for years, they were just much shorter. He started having spells shortly after birth, within the first hour or so. Donovan is a mixed bag of stuff too with some cerebellar issues that were discovered much later too. Nothing that is totally obvious!!

We do have videos of the spells too, but at the time, Donovan performed on cue when he was little!!:rolleyes: After that, he was a bit more difficult to catch!

My little figther
04-08-2009, 08:41 AM
Suzanne,

I don't really know what to tell you because I have never seen children that have these stop breathing episodes except that you definitively need to go the bottom of this. I hope that Dr. Cotton and and all the other docs you are dealing with will listen to you. Internet can be a scary thing and can freak you out but sometimes it can be a very helpful tool as well - I would say not to trigger an episode on purpose but have the camera ready for if and when an episode occurs. I am not of a big help here but I wanted you to know that I am thinking about you and that as you I would seek the answers.

Michelle

JWorthington
04-08-2009, 10:22 AM
Hi Suzanne
just wanted to say that my thoughts are with you. I can't add anything that hasn't already been said. Hope you get some answers soon, this sounds pretty scary.

Julie:hug:

TommysMommy
04-08-2009, 12:00 PM
I'm sorry, but I don't have the pm anymore either. I wish I had kept it, because so much has happened since then and I can't remember where I found it or what it was.

I do hope you get to the bottom of this soon. It sounds like he should have a neuro workup. If he's not holding his breath on purpose, then maybe there's something in his brain making this happen.

aydenava
04-08-2009, 07:53 PM
Ava is a breatholder as well & I know its not on purpose.When she was an infant it scarred the crap out of me b/c of everything w/Ayden & Ava is otherwise healthy,no airway issues.She still does it about 2x per mo.& when shes sick it will happen everyday untill shes better .She will start to cry & no sound comes out,then her face looks paniced,she goes limp & falls into my arms ,dusky color & eventually lets out a little kitten like cry.She has never lost conciousness,her Ped said that untill they are 18 mo old all there stomach muscles fire at the same time & its like being punched in the stomach having the wind knocked out of you.If it continues he said then it becomes "learned" behavior..........Angie

Kaylie
04-08-2009, 08:38 PM
I wanted to let you know that our thoughts are with you all and we hope that with this information you are getting from the board and the info that you have obtained ,somehow find out whats really going on. I know many here have alot of faith in the Cinnci team and if anyone can help find it they are definetly a good place to start.
we have somewhat of a mystery going on here with Kaylie and noone seems to know what is causing it either, we have recently had some testing done but are awaiting more test because we still havent gotten any answers thus far, it is real difficult to know that when something is going on and there just isnt a easy answer as to why its going on and what could be the cause.
I wanted to offer my support and concern and hope that with your team of Docs a answer is within their reach soon.. please take care and know that you are all in our thoughts

TommysDad
04-08-2009, 10:59 PM
Suzanne,

From the sounds of the article, I wouldn't hesitate to call a pulmonologist. We see Dr. Robert Wood, the Director of Pulmonology out in Cincinnati. We think very highly of him. If you can't get your point across with him, I'd go for the guy who wrote a lot of articles about this listed in the references and beg him to listen to your child's case!

This scares the :censored: out of me just reading about all of this! I can't imagine what you (and the others who have to witness this) go through each and every time this happens to your child! Makes me even more grateful Tommy has his trache AND vent, but really, it doesn't sound like any of this matters when it comes to these types of episodes. Man I just got the shivers just thinking about this!

Let us know if you contact a pulmonologist and what they say!

~Maggie

Trecurtis
04-09-2009, 12:15 AM
I normally don't post on the board, but this post hit home with me. My son is trached and does have CCHS, so while passing out is associated with CCHS, I believe DS to be more on the extreme end.

DS never did this before being trached or had any episodes of any sort, was on seizure meds before being trached, but no seizures were ever seen. Initinally we had an abnormal eeg and meds were given. DS was trached at 2 months of age and has had these episodes with increased frequency. Two today to be exact. We too were originally told that these would pass and to try to avoid trigger causing situations. Which is hard to do when this is a daily occurence for many reasons.

I too worry about the long term affects of this behavior. Typically DS will de sat into the 30's before either passing out or catching a breath at the very last second. With CCHS we worry about heart pauses but hope we have gene mutation numbers on our side.

I too would try to get a video of this, but surely wouldn't initiate one. These episodes scary me each and every time and only once has DS performed such an episode in front of a doctor. My thoughts are with you and your son and I just wanted to confirm that these do occur with a trach.

drct1245
04-09-2009, 01:32 AM
Suzanne,
I was almost thinking seizure or something neurological when he gets mad/upset, something doesn't connect/fire right.... ???

that would be very scary. Ayden had the true breath holding and that was scary enough!

LKN
04-09-2009, 08:09 AM
I have absolutely no experience with this issue, but it scares me too. I'd call the ENT nurse pracitioners at Cincinnati to talk to them about it. Maybe you can get a referral to neurology. Sometimes it works better to have a referral from the current department that sees him the most.

I think the only way they can get to the bottom of this is to have an MRI of his brain. Perhaps there is a structural defect causing the episodes? The article was very interesting and very sobering. We are sending good thoughts your way.:hug:

**glad the surgery went well:)

suzanne2545
04-09-2009, 09:12 AM
Thanks to everyone for all the thoughts, descriptions, well wishes and ideas.

Here is an update.

I still haven't heard back from Dr. Cotton or ENT at Cincinnati on the issue. I also haven't heard back on the results from the sleep study, which I know they have. I'm hoping to hear on that today or tomorrow. I will address the cyanotic episodes with them at that time if I don't hear about them separately beforehand.

I also went to Parker's pediatrician yesterday to discuss the issue. He is making a referral to Pulmonology at Cincinnati and seemed very bothered that the issue had gone unchecked for two years. Granted, we didn't "push" but we certainly gave any doctor we talked to about it the opportunity to say that it didn't sound right.

I've exchanged a few e-mails with our ped in Canada and he still thinks it is a non-issue that doesn't need to be pursued.

Our MI ped also thought it might be of some help to meet with a particular local doctor here whom he trusts and describes as "one very, very smart man." He's board certified in pulmonology, neonatology, and is also an intensivist.

I'm hesitant to get too many hands in the pot at one time, at least for now. So I'm keeping the local guy in my pocket until we see what Cincinnati comes up with. My MI ped thought that Cincinnati was the best place to start given Parker's history there and also their overall reputation but he was really dismayed that they didn't want to further look into it.

Interestingly, one of the "issues" described in this article about these episodes is that the lungs are virtually impossible to inflate artificially so bagging isn't the answer during the peak of the episode. When Parker had his LTP he had an episode after he was extubated that resulted in getting reintubated. I wasn't there, but Ian said he "was starting to hold his breath." The PICU doc tried to bag him, couldn't and intubated him. As you know, that happens just that fast. I got there a few minutes later and at rounds it was discussed that they couldn't inflate his lungs and perhaps a pulm consult was in order. At the time they thought the best thing was to wait and see what came out of another trip to the OR. That seemed logical to me. Of course, he came out of the OR looking good and we forgot about it til now.

So, I'm putting lots of pieces together.

Of course, we are going to be on extra guard about avoiding these episodes. My heart is broken to read the stories of the kids who died during or just after the episodes. That scares me and if that isn't scary enough, it makes me even more horrified to consider that my older boys would likely see that happen to, if it did ever happen.

Kate
04-09-2009, 09:26 AM
We've thought of this. But really we'd have to try to trigger an episode. If feel weird doing that! And I don't know where my video camera is. Guess I need to find it, because you are right.

This is exactly what I ended up doing. Though with Mitchell I knew what triggered them most of the time and that was when we were placing his ng tube. (so it was easy to trigger-and I didn't have to really do it on purpose-I just knew to set up the camera when we changed the ng) I have the video if you want to see it--when we taped it he had a very mild one--I showed the dr and he still called it a breath holding spell. I agree though-I never call it the "breath holding" I always refer to it as a "breathing episode". He never had them when sleeping and it was always triggered by being really upset-like falling down or placing the ng tube, or if he got hurt. Right after he was trached they actually seemed to increase in number-while he was in the PICU--I think this was because they really ticked him off. Not purposely, but just being in the hospital made it worse.

Suzanne,
I'm with you-it is so scary and each and everytime during it I pray that he makes it through it. In Mitchell's case-many of the kids w/the same syndrome have them too and yes, this is what takes them. It is so sad and scary. That said-Mitchell has "seemed" to outgrow them. He still gets very dusky if he falls and hurts himself. But, for a good year and a half he hasn't had the full blown episode. (with the hand posturing and stiffness)

However, this is the EXACT reason he has a nurse go to school with him.

Let me know if you want me to email you the video. Like I said-weird to say, but it was a very mild episode so it didn't show the true full blown one--but, you can see his arms are starting to posture up-no clenched fists yet, but the top 1/2 of his body is rigid--bottom 1/2 still wiggling-which is what makes it "mild".

Bagging-you're right-we really never were all the successful because it was tough getting air in. One thing that I learned to do was to even though I couldn't get a breath in...I would take the amboo and put a little positive pressure on it-I don't know if it would help. Basically like you said-we had to just wait until he came around. He never did it for a dr, but the nurses in the PICU are scared to death of him because of his episodes. They never seemed to think it was anything odd though.....they just said they were very severe.

HUGS-boy I know this feeling. I always thought they were seizures but we had EEG after EEG and they all came back perfect. It was obvious he had NO control over this. AND-they weren't consistent-sometimes he'd have them if he fell, but then sometimes he'd really hurt himself and be fine. It was so confusing. It seemed to me that he had a very hard time inhaling during this-he would exhale all his breath and then couldn't inhale. I think that article you posted said something about that-I didn't get a chance to read all of it.

Sorry this is so long, I just so know how you feel. But I hope you can get a little comfort in knowing Mitchell has seemed to outgrow his...though I will never feel 100% confident in that. I will always fear him getting hurt-in fear of what his response will be.

Ainsley's Mom
04-09-2009, 07:38 PM
That scares me and if that isn't scary enough, it makes me even more horrified to consider that my older boys would likely see that happen to, if it did ever happen.

I know it's hard not to, but REALLY try not to think of the worst case senario. You are working on figuring this out. That is NOT going to happen. :hug:

jlpennix
04-09-2009, 09:59 PM
Sophie also has CCHS and these episodes were very common when she was an infant. As she has grown older, she is begining to outgrow them. We live in Cincinnati, so that is where Sophie lived for her first three months. When she was on the TCC, the doctors were always puzzled about the episodes. Nobody could really figure it out. She does have some tracheamalacia and I think some attributed it to that(although I am not sure). All heart tests have showed up normal. We actually have an ENT visit tomorrow and I will mention it and see if they can think of any other ideas that would contribute to it.

KJKK8437
04-12-2009, 07:08 PM
Suzanne -- I'm just wading through the board posts. I sure hope you've some answers now and I just haven't seen them yet. This sure is scary. During his LTP recovery, Alex was "diagnosed" by a nurse as breath holding when he was frightened. It looked NOTHING like what you described. Basically, he inhaled sharply and just clamped down. He got rigid, and sometimes shuddered a little if he was holding his breath long. It was obviously triggered by something he saw. He desatted immediately when he did it, and it seemed to everyone there that he was intentionally reacting to a scary situation. I don't know that he was intentionally "holding his breath" so to speak, but he was intentionally putting himself on guard or high alert. Each time he either got uncomfortable and started to breathe again, or we removed the offending person/object, or we "talked him down." Fortunately, we only had one day of this, and even more fortunately, we had a sensible nurse who seemed to understand what was going on. It happened, of course, when he was being moved from one ward to another. I thought they were going to send us back to the PICU!

I know this is probably beyond what you need to know at this point, but do keep us posted on what you find out. I'm so glad your MI pede is with you on being concerned.