After recently helping another mother diagnose her child with this condition. I realized I had never posted a video of Sawyer's stridor...you know the benign "noisy breathing" every doctor talks about. Hopefully this video will help other Moms determine whether their child is having stridor or not and lead to demanding more answers from their doctors. Also we live in a time with iphones and any proof you can have of your child demonstrating weird behaviors in breathing or anything else they might do try to catch it on video...Doctors will have to address your concerns if you have videos of your child doing something that is not normal vs. just listening to the mother's intuition <----which BTW is like 99% accurate I am finding! Follow your gut but document anything weird your child does with video and writings of when it happened and how many times, etc. Keep thorough notes! <3
Friday, April 12, 2013
Wednesday, August 15, 2012
Sawyer's Breath Holding Spell
Here is a video of Sawyer having a breath holding spell. Warning: This video is very disturbing so be prepared. Breath Holding Spells are behavioral. Sawyer's spell in this video was spurred because I said it was time for bed. He began to cry and couldn't catch his breath. He then passed out for a few seconds and you can see the color eventually come back as he gets oxygen through his body. We usually try to make sure that Sawyer is laying down and safe (as you will notice by me making sure he is lying down on his back in the video). If Sawyer were standing he could easily fall and hit his head. For parents that have children that do this it is important that you make sure the child is safe and to know that they can pass out for several minutes and still be okay. Sawyer's longest was one and a half minutes, but up to 3 minutes is okay. We have also been advised the best thing to do after this happens is to continue with the punishment or whatever spurred the breath holding spell. In this case, he didn't want to go to bed, so I had to risk him having another to ensure that he understands that this behavior will not be rewarded by getting his way. If you give in, the child will have more instances of these spells and use them as a weapon. This is all I have tonight but wanted to share and help other Moms dealing with these types of spells.
Thursday, February 9, 2012
What is Laryngomalacia?
FACTS vs. FICTION
Things you should KNOW about your child's laryngomalacia!
What is Laryngomalacia?
Laryngomalacia is floppy tissue or under developed cartilage. The tissues involved are the epiglottis and arytenoid cartilages. These are located above the vocal cords in the airway. When a person has laryngomalacia the floppy tissue falls into the airway blocking or constricting airflow upon inspiration. Usually when this happens it produces a sound known as stridor.
What is Tracheomalacia?
Tracheomalacia is a condition characterized by flaccidity of the tracheal support cartilage which leads to the collapse of the trachea when increased airflow is demanded. In a normal airway, the trachea dilates slightly upon inspiration and narrows slightly during expiration, when a person has tracheomalacia, however, these processes are exaggerated causing the airway to collapse upon expiration.
What is Bronchomalacia?
Like Tracheomalacia and Laryngomalacia, Bronchomalacia is the weakness of the bronchial tubes causing a collapse of the airway and a wheezing/stridor upon expiration. Bronchomalacia is due to a deficiency in the cartilaginous rings of the bronchial tubes.
What is Stridor?
Stridor is a high pitched wheezing sound resulting from turbulent air flow in the upper airway. Stridor is a physical sign which is produced by narrow or obstructed airway path. It can be inspiratory (upon inhale), expiratory (upon exhale), or biphasic (both). Inspiratory stridor is the most common (and is associated with Laryngomalacia). Expiratory stridor happens with Tracheomalacia and Bronchomalacia. Stridor can be indicative of a serious airway obstruction from severe conditions of the epiglottitis, a foreign body in the airway, or a laryngeal tumor. Stridor is indicative of a potential medical emergency and should always command attention.
What Dr's don't want you to know...don't let this happen to you....
For some strange reason many Dr's seem to try to ease the minds of laryngomalacia parents by saying things like "they will grow out of it" or "it's just noisy breathing." These statements are not true, first of all, the noisy breathing is stridor which is very dangerous. What they mean by that statement is your child's episodes are not as significant as some more severe children and therefore require less intervention, but the bottomline is every time you hear that sound which I'm guessing in many cases of "mild laryngomalacia" is frequent, your child's airway is being restricted and that is a BIG deal. And how do they determine it's mild? I was told Declan had mild LM, but a year later it was SEVERE?? It's all relative to what the doctor sees in the five second scope they do in office? I mean that's just ridiculous and I have seen too many "mild" cases turn south to believe this crap about 90% of these kids growing out of it or only having mild LM.
Another problem is it's all one dimensional to many of these Dr's, it's only noisy breathing, but laryngomalacia has many layers and leads to other problems, such as frequent ear infections, low immune system, failure to thrive, and reflux. Lets touch on a few of those side effects, failure to thrive for instence. Has it ever occurred to anyone that the reason so many laryngomalacia babies have failure to thrive is because they are having to work over time to breathe? Well apparently it's not a big deal to have stridor, ha, yeah right. Failure to thrive is very prominent in these children and it's because their airways are not being protected by their doctors and their parents are not educated enough to speak up about it. I had to fight for Sawyer otherwise he would be a statistic (a SIDS baby). Declan I didn't fight for because I didn't know what to do...lesson learned, now I have one child that has serious medical issues (probably for life) and another that is starting to thrive. You are your child's advocate never forget this and remember these Dr's work for YOU! Low immune system led to Declan picking up a mycobacterium (most likely from our water source), which led to a granuloma (similar to a tumor) in his lymph node near his parotid gland...these things happen guys! I'm not trying to scare you I'm just giving you the information you need to be a better advocate for your child's condition.
As I continue to stumble across things that have to do with LM, TM, BM, I will update on here to give more information, but this is a good start...goodnight all.
Things you should KNOW about your child's laryngomalacia!
What is Laryngomalacia?
Laryngomalacia is floppy tissue or under developed cartilage. The tissues involved are the epiglottis and arytenoid cartilages. These are located above the vocal cords in the airway. When a person has laryngomalacia the floppy tissue falls into the airway blocking or constricting airflow upon inspiration. Usually when this happens it produces a sound known as stridor.
What is Tracheomalacia?
Tracheomalacia is a condition characterized by flaccidity of the tracheal support cartilage which leads to the collapse of the trachea when increased airflow is demanded. In a normal airway, the trachea dilates slightly upon inspiration and narrows slightly during expiration, when a person has tracheomalacia, however, these processes are exaggerated causing the airway to collapse upon expiration.
What is Bronchomalacia?
Like Tracheomalacia and Laryngomalacia, Bronchomalacia is the weakness of the bronchial tubes causing a collapse of the airway and a wheezing/stridor upon expiration. Bronchomalacia is due to a deficiency in the cartilaginous rings of the bronchial tubes.
What is Stridor?
Stridor is a high pitched wheezing sound resulting from turbulent air flow in the upper airway. Stridor is a physical sign which is produced by narrow or obstructed airway path. It can be inspiratory (upon inhale), expiratory (upon exhale), or biphasic (both). Inspiratory stridor is the most common (and is associated with Laryngomalacia). Expiratory stridor happens with Tracheomalacia and Bronchomalacia. Stridor can be indicative of a serious airway obstruction from severe conditions of the epiglottitis, a foreign body in the airway, or a laryngeal tumor. Stridor is indicative of a potential medical emergency and should always command attention.
What Dr's don't want you to know...don't let this happen to you....
For some strange reason many Dr's seem to try to ease the minds of laryngomalacia parents by saying things like "they will grow out of it" or "it's just noisy breathing." These statements are not true, first of all, the noisy breathing is stridor which is very dangerous. What they mean by that statement is your child's episodes are not as significant as some more severe children and therefore require less intervention, but the bottomline is every time you hear that sound which I'm guessing in many cases of "mild laryngomalacia" is frequent, your child's airway is being restricted and that is a BIG deal. And how do they determine it's mild? I was told Declan had mild LM, but a year later it was SEVERE?? It's all relative to what the doctor sees in the five second scope they do in office? I mean that's just ridiculous and I have seen too many "mild" cases turn south to believe this crap about 90% of these kids growing out of it or only having mild LM.
Another problem is it's all one dimensional to many of these Dr's, it's only noisy breathing, but laryngomalacia has many layers and leads to other problems, such as frequent ear infections, low immune system, failure to thrive, and reflux. Lets touch on a few of those side effects, failure to thrive for instence. Has it ever occurred to anyone that the reason so many laryngomalacia babies have failure to thrive is because they are having to work over time to breathe? Well apparently it's not a big deal to have stridor, ha, yeah right. Failure to thrive is very prominent in these children and it's because their airways are not being protected by their doctors and their parents are not educated enough to speak up about it. I had to fight for Sawyer otherwise he would be a statistic (a SIDS baby). Declan I didn't fight for because I didn't know what to do...lesson learned, now I have one child that has serious medical issues (probably for life) and another that is starting to thrive. You are your child's advocate never forget this and remember these Dr's work for YOU! Low immune system led to Declan picking up a mycobacterium (most likely from our water source), which led to a granuloma (similar to a tumor) in his lymph node near his parotid gland...these things happen guys! I'm not trying to scare you I'm just giving you the information you need to be a better advocate for your child's condition.
As I continue to stumble across things that have to do with LM, TM, BM, I will update on here to give more information, but this is a good start...goodnight all.
Sawyer's Bi-Pap Machine!!!
I am so happy to report that after having his Bi-Pap machine for 1 month Sawyer went from having almost 200 sleep apnea events a NIGHT to 1 event the entire month!!!! I mean seriously? That's just phenomenal! I've posted a video of Sawyer doing our nightly routine. He USUALLY doesn't even fight me but you see him decide to put on a little show for the camera! LOL! Stinker, but not too bad for having a mask on his face every night right? So happy we have a good pulmonologist that got us this machine! <3 <3 <3
Declan A-Typical TB Story
I'm not sure if I wrote about them on here or not but just to recap after Declan's surgery he had some complications. First immediately after the surgery he was parallyzed on the left side near his mouth which made his smile droopy. They assured us this was only temporary and because the nerve was weak after surgery. They were right and after almost 5 months it seems to be completely gone. After two days in the hospital the intern working with us decided to remove the tube from his neck. This tube was draining the excess fluid that was building up in the spot that used to have his parotid gland. The removal of the tube was not what I wanted nor what had been discussed the day before by the main Doctor, but it was done and we were sent home from the hospital. As an effect his face swelled severely to the point that he could hardly see out of his left eye. We rushed him back to Arkansas Children's and the determination was to "watch and wait" to see if it went down. It did go down but in the process it made a fistula. A fistula is an abnormal space created in between two organs. In our case it was preventing his skin from fusing right at the seam where the skin was still a little "iffy" from stretching due to the granuloma. This space was collection saliva which is a common complication of the parotid gland removal surgery. His face would fill up like a pimple and you could press on it and it would squirt out saliva. I was told to drain this whenever I saw it filled up. The Dr. once again wanted to continue doing the "watch and wait" but decided to send us to the Infectous Disease clinic to see if he could do anything different with medications. I forgot to mention he had been on Biaxin since August. This went on for a few months until around mid-December, when I finally said I had researched fistulas and that it was a fistula that needed to be corrected with surgery or a feeding tube (to prevent the saliva from building up). At this point the ENT Dr and I had different perspectives on what Declan had. He felt Declan had A-Typical TB (but had nothing to back it up...all the test results came back negative) and I felt that Declan just had a benign tumor because they had nothing to prove it was A-Typical TB. The reason why the results were negative were because they never tested the samples with DNA analysis, this is something you MUST do in order to find out whether a person has A-Typical TB or not. The Infectious Disease Dr was somewhat smarter than our ENT Dr and got the right tests ordered and put him on another antibotic (Rifampin) in conjunction with Biaxin that he thought would help. After only a week of waiting we received word back from his clinic that Declan did indeed have A-Typical TB originally and that a granuloma had formed within his lymphnode near his parotid gland. His other lymphnodes were swollen as well and the Dr was concerned about them so he tested for cancer to be sure, but the test was negative, it is possible that A-Typical TB can spread throughout the body into other places, but they said it's "unlikely." After two months of this treatment of 2 antibotics at a time, his saliva slowed down long enough to close off the hole and fuse, it's not completely fixed but it is getting better. So we have hope. He will be on the double antibotics for 6-12 months to try to prevent the A-Typical TB from spreading throughout his body. A-Typical TB is not contagious and is usually contracted from the environment. Many of the mycobacteria that cause A-Typical TB are found in drinking water, but people with suppressed or low immune systems (Declan) are more susceptible to getting sick from contact with bacteria like this. Moral of the story...purify your kid's water source? I think so...
Declan's face swollen a week after surgery (it got worse from here)
After 5 months of antibotics
(Dec is in the green shirt) You can see his smile is weird here it was pretty significant.
In the beginning
As the Granuloma Grew...
Last few days...before surgery...almost bursting through the skin
Another look at it...
Sweet boy before his surgery...
After surgery with all his presents for being brave!
Pretty shocking moment when we unveiled this baby!
Paralysis of the facial nerve near his mouth
Declan's face swollen a week after surgery (it got worse from here)
Spot that wouldn't heal
After 5 months of antibotics
(Dec is in the green shirt) You can see his smile is weird here it was pretty significant.
Back to Normal Smile
Wednesday, November 30, 2011
UPDATE ON SAWYER
Ok. Lets start with Sawyer. The last I updated his MRI came back normal, which I rejoiced about, but the MRI results might not be accurate according to the neurologist that graded his sleep study on 10-19-2011. First, the entire reason we had a sleep study was because I was "claiming" that Sawyer was still having breathing problems in the night even after multiple surgeries to correct his condition. Since no one believed me they asked if I was willing to do another sleep study to prove he was in need of a CPAP and O2 monitor which I have been asking for since Sept. 2010! I agreed and a month later we were seen in the sleep center. The results were worse than the first sleep study which constituted his first surgery (supraglotoplasty) on 2-16-2011.
Results: Sleep Study 10-19-11
Cent. Apnea
6-9 secs: 8
10-14 secs: 5
Obst. Apnea
>20 secs: 1
Obst. Hypopnea
6-9 secs: 31
10-14 secs: 46
15-20 secs: 39
>20 secs: 62
"His lowest oxygen saturation was 76% and was <92% for about 3.5 minutes of the total night. Although his oxygenation was ABNORMAL he did maintain his baseline avg. 97% oxygenation 94.1% of the the sleep time. The drops came with sequential events in REM sleep (particularly of a CENTRAL nature)."
"Actually, as the child fell asleep, he began to demonstrate periodic breathing, which was a mixture of central apneas, and central and obstructive hypopneas, but which were so irregular and difficult to identify that it was quite hard to score with numerous events lasting less than 6 seconds. Of those that were less than 6 seconds, only those which were most clear cut were scored. Thus the child's breathing pattern particularly in the first part of sleep was much worse than these number reflect."
"Sleep was disrupted by these numerous events. The great bulk of the central events were very short, but the hypopneas ranged as long as 53.2 seconds in duration. Overall, this study is more abnormal than the child's first study."
Recommendations:
"Consider reviewing with neuro-radiology this September's MRI to look at the cranio-cervical junction to evaluate for a Chiari I malformation. The report comments that the brain stem looked normal so that issue has likely been address."
May L. Griebel - Neurologist in the Sleep Study Lab - Arkansas Children's Hospital
So after months of asking for a CO2 monitor (still don't know if they will give me one or not) and a CPAP machine. They are finally getting us a CPAP machine and evaluation. This will happen on December 20, 2011. A full year from the time of his first sleep study and 2 surgeries later. He has nothing left to be blocking his airway (tonsils gone, adenoids gone, tubes in ears, & supraglotoplasty).
On another note. Sawyer received the RSV shot on 11-15-2011. So far so good. Everyone else in the family has been sick and he hasn't been sick yet! Really hoping this lasts and he's protected this winter!
Results: Sleep Study 10-19-11
Cent. Apnea
6-9 secs: 8
10-14 secs: 5
Obst. Apnea
>20 secs: 1
Obst. Hypopnea
6-9 secs: 31
10-14 secs: 46
15-20 secs: 39
>20 secs: 62
"His lowest oxygen saturation was 76% and was <92% for about 3.5 minutes of the total night. Although his oxygenation was ABNORMAL he did maintain his baseline avg. 97% oxygenation 94.1% of the the sleep time. The drops came with sequential events in REM sleep (particularly of a CENTRAL nature)."
"Actually, as the child fell asleep, he began to demonstrate periodic breathing, which was a mixture of central apneas, and central and obstructive hypopneas, but which were so irregular and difficult to identify that it was quite hard to score with numerous events lasting less than 6 seconds. Of those that were less than 6 seconds, only those which were most clear cut were scored. Thus the child's breathing pattern particularly in the first part of sleep was much worse than these number reflect."
"Sleep was disrupted by these numerous events. The great bulk of the central events were very short, but the hypopneas ranged as long as 53.2 seconds in duration. Overall, this study is more abnormal than the child's first study."
Recommendations:
"Consider reviewing with neuro-radiology this September's MRI to look at the cranio-cervical junction to evaluate for a Chiari I malformation. The report comments that the brain stem looked normal so that issue has likely been address."
May L. Griebel - Neurologist in the Sleep Study Lab - Arkansas Children's Hospital
So after months of asking for a CO2 monitor (still don't know if they will give me one or not) and a CPAP machine. They are finally getting us a CPAP machine and evaluation. This will happen on December 20, 2011. A full year from the time of his first sleep study and 2 surgeries later. He has nothing left to be blocking his airway (tonsils gone, adenoids gone, tubes in ears, & supraglotoplasty).
On another note. Sawyer received the RSV shot on 11-15-2011. So far so good. Everyone else in the family has been sick and he hasn't been sick yet! Really hoping this lasts and he's protected this winter!
Thursday, September 29, 2011
MRI & CT SCANS
Sawyer's MRI has come back NORMAL!! YAY!! He's definitely not out of the woods for typical laryngomalacia, tracheomalacia, and bronchomalacia complications BUT he does not have any related neurological problems and we are very thankful for that! <3
Declan's CT Scan was a less exciting revelation. The Dr. believes that Declan has something called atypical TB. This is something that can form if you have a compromised immune system (which he does) and TB germs infest a certain part of your body. It is not contagious and the cure is immediate surgery (or it can spread to other organs) on the area affected, in this case it would be Declan's parotid gland. They don't know if it's in other organs already but he said that was rare... My first instinct is I'm freaking out! I don't dislike our ENT doctor as a person, I just believe him to be a very busy man that sometimes rushes through things and perhaps he doesn't pay enough attention to all the details. For a situation like this surgery that cannot happen and I feel like it's a big risk using our same Dr. for this surgery, however, it is the opinion of relatives, this Dr., and our PCP that this is something that cannot wait too long on and going out of state for a second opinion is not really an option. My fear is the facial nerve that can be damaged in this situation and the fact that he is leaning toward the riskier surgery (possibly leaving cells behind causing regrowth and having a higher risk toward the facial nerve damage to occur). He believes this thing is sitting on top of the gland. He also noted that it could be a cyst or granuloma. We have had blood tests done and it is not an infection or cancer! Thank GOD! He has said he can change his mind once he gets in there and take out the whole gland, but I will re-address my concerns on surgery day and probably try to push for the least risky surgery...I don't want to remove the gland unless necessary but he tends to forget and just do whatever is on the paper instead of making decisions in the OR...at least he's never changed his mind before during a surgery. I don't feel comfortable with this situation...I feel rushed and trapped but there is nothing I can really do...my husband, family, and Dr's are pushing me to do this...I want him better...just so scared for him...so much is at risk...just very stressed...
Declan's CT Scan was a less exciting revelation. The Dr. believes that Declan has something called atypical TB. This is something that can form if you have a compromised immune system (which he does) and TB germs infest a certain part of your body. It is not contagious and the cure is immediate surgery (or it can spread to other organs) on the area affected, in this case it would be Declan's parotid gland. They don't know if it's in other organs already but he said that was rare... My first instinct is I'm freaking out! I don't dislike our ENT doctor as a person, I just believe him to be a very busy man that sometimes rushes through things and perhaps he doesn't pay enough attention to all the details. For a situation like this surgery that cannot happen and I feel like it's a big risk using our same Dr. for this surgery, however, it is the opinion of relatives, this Dr., and our PCP that this is something that cannot wait too long on and going out of state for a second opinion is not really an option. My fear is the facial nerve that can be damaged in this situation and the fact that he is leaning toward the riskier surgery (possibly leaving cells behind causing regrowth and having a higher risk toward the facial nerve damage to occur). He believes this thing is sitting on top of the gland. He also noted that it could be a cyst or granuloma. We have had blood tests done and it is not an infection or cancer! Thank GOD! He has said he can change his mind once he gets in there and take out the whole gland, but I will re-address my concerns on surgery day and probably try to push for the least risky surgery...I don't want to remove the gland unless necessary but he tends to forget and just do whatever is on the paper instead of making decisions in the OR...at least he's never changed his mind before during a surgery. I don't feel comfortable with this situation...I feel rushed and trapped but there is nothing I can really do...my husband, family, and Dr's are pushing me to do this...I want him better...just so scared for him...so much is at risk...just very stressed...
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