Thursday, October 30, 2008

Please Help Ashton - Video is at the conclusion of the post

Ashton is a 3 year old former 24 week preemie who is having episodes like the one captured in the video. Shannon (mom) has asked if I could post the video in hopes that someone may have an idea as to what these episodes could be.

I know some of you have seen this video when I sent it out last year, asking for your help. Unfortunately he is still having the spells, despite a lengthy stay in the hospital to get to the bottom of them.

Here is info about Ashton from December of 2007...

MRI in May 2007 that shows mild PVL.
Ph probe yesterday....not sure what yet. Had one about 9months ago
that showed reflux. duh
EEG (2 times) - they were abnormal but no seizure activity
*they are saying seizures (some of them) from me describing the
spells. However all docs that have seen Ashton have a spell have said
no it isn't a seizure. (he did them in ICU in Feb06)
Echo 8 weeks ago was fine. They discharged him. I have however heard
that echos do not show every heart problem there could be.
Last lung xray showed thickening of bronchial walls.

Born june 10-05 at 24 weeks 1.9lbs.
G tube placed Oct05
Spells started Nov05
Dec05 discontinued domperidone due to severe EP effects.
Jan06 home from NICU
4 days later back in b/c had 7 spells at home
Ended up in ICU on vent. Spells continued on vent.
Sats go to 20s, 30s and heart rate drops.
GJ tube placed and spells went away until he had two in July06(same
day), April07, June07 and then Nov07

Here is the most recent info provided by Shannon (sent to me on Oct. 20, 2008):

Okay long story short, we know that they are not seizures. He has had four eegs all with no seizure activity. He has had full cardiac workups showing nothing there at all either. I do have to say though that I have had two surgeons that have worked on him come out and say that he is shunting. No holes are seen/found.

If on a monitor while this is happening his oxygen sats will read anywhere from 20-40. His heart rate does not change MOST times.

His recent stay in ICU on a vent he had 11 of these episodes while sedated. When they try to bag him they either can't or it is VERY hard to. The doctor at this stay automatically thought of pulmonary hypertension. Echo was fine.

He has had a CT of his lungs that show not much more than BPD and blocked areas most likely from micro aspirations.

We thought they may be related to reflux however the ph probe and oxygen study showed no correlation between reflux and desats.

He frequently as well as desats to 60s, 70s and 80s. Not nearly as scary as the one shown.

This spell on video, just before it he was about to take a poop. Which made me think cardiac as well. However I have seen these spells happen out of nowhere with no warning.

Sleep study showed sleep apnea. Obstrutive, hypopneas and central. CO2 levels are higher than normal (about 70). The doctors told me that oxygen is basically toxic to him.

Scope showed airway was fine. Adenoids and tonsils are fine.


Also, Ashton did have a fundo in Feb. 2008 and now has a g tube instead of a gj.


Thanks to everyone in advance. Anonymous posts are completely allowed, as I am sure those in the medical field do not want their names used since Ashton is not their patient and they do not have full access to records.

WARNING... THE VIDEO IS VERY EMOTIONALLY HARD TO WATCH.

53 comments:

Stacey said...

Oh Shannon... I have no answers. GOSH I hope you get some soon. I'm so sorry.

Shannon said...

Thanks so much for posting this for me. I just cannot believe that no one has the answers for me. It does not make sense and I just want to help him. At this point I am willing to listen to anything that people have to say!

Anonymous said...

Has he ever been biopsied for genetic disorders such as mito?

Shannon said...

He has not had biopsies done but he did have the bloodwork done for genetics which just recently came back normal.

Funny you ask about mito. I have been bugging and bugging to see genetics and I was told over and over by doctors that "he doesn't look mito/metabolic". Hmmm I didn't know there was a look!? I know many kids with mito and some you would never ever know it.

So can I ask what makes you wonder if he has been tested for mito?

Anonymous said...

can i post this on a forum I belong to? there a few nurses there?

Nancy Brown said...

Wow.. I have no answers but my hear t totally goes out to ya!! I wanted to shake him til he started breathing for ya!!

Love ya Shan!

Shannon said...

You can post this wherever you like!!!! Someone out there has to know what he is doing!!

Aidan's mom said...

Shannon:

I'm so sorry you are going through this. Since I just read that you are ok with this being sent, I am going to send this to a couple of neos who took care of Aidan.

I will let you know if I hear anything back.

Hugs. I'm so sorry.

Anonymous said...

Helen Harrison asks:

If central apnea has already been diagnosed, couldn't that be what you are seeing here?

Helen

Sammie said...

I will post this wherever I can for you guys!

ThePreemie Experiment said...

Anonymous wrote: "Has he ever been biopsied for genetic disorders such as mito?"

When I first saw the video last year, mito was my first thought and the first suggestion that I sent to Shannon.

Shannon, there are a few websites out there that explain mito and the symptoms. Here are a few that I use often.

http://www.mitoaction.org/mito-faq#symptoms

www.umdf.org

Just because a blood test was done, does not mean that Ashton does not have mito. My memory may be failing me (it's been a long time since we've been in the mito world) but a fresh muscle biopsy is the best way to arrive at a diagnosis.

About 4 or 5 years ago I was at a mito conference listening to a neurologist speak. I was floored by the number of parents of preemies in the room.

Shannon said...

Helen, doctors said that there is no way that this is central apnea. We spent 88 days at Toronto Sick Kids this year to try and figure out what was going on. We actually had only gone in for a sleep study with a ph probe. However once the nurse had hooked him up he started his desats to the 70s. She was not happy even though I told her that he has always done this. She refused to leave him until a pulm doctor came to see him. At this point Ashton started into his bigger ones to the 50s/60s (not the same as the video). This is how we became admitted. I would guess there was about 20-25 different doctors in that stay who saw Ashton and none had answers.

These ones on video are not something that occurs every single day but still is just as concerning to me as his mom.

The first team of docs said that there was no way that we could go home (I wanted a day pass) because they were worried if he had one of these again he could die.

Initially teams got together and thought it was possibly reflux. He had a gj tube at that point. After doing a bronch and lung wash it was found that he had 40% lipid ladens in his lungs. Therefore we felt we did not have a choice.

Fundo and g tube was done on February 5th 2008. However things did not improve at all. We did do a ph probe about a month after the fundo and his reflux was pretty much normal.

A sleep study was done along with the ph probe next and NONE of his desats correlated with reflux.

Anyhow it finally came to the point where they didn't know what to do/say anymore and I took him home on April 7th.

I should mention that we saw genetics there the end of March and within thirty seconds of the doctor seeing Ashton said "this kid does not have cerebral palsy, I want bloodwork sent to the US for genetic testing." I almost fell over. I have been saying for SO long that something is missing and everyone seems to blame everything on him being a preemie. When I told him that he said "sure, easy answer for a child that is not meeting milestones and was a 24 weeker".

However bloodwork has come back normal.

Shannon said...

Stacy, I totally know that mito cannot be ruled out without a biopsy. The genetics doctor we saw promised me that he would do his best and try and help me out. Our next step is supposed to be neuro metabolics, just waiting for the call of when our appointment is.

Can you tell me what makes you think mito by looking at the video?? No doctor we have seen in person has said such a thing.

Anonymous said...

To Shannon from Helen:

You told Stacy: "Sleep study showed sleep apnea. Obstrutive, hypopneas and central."
***

Does Ashton have diagnosed central apnea? If so, why have the docs said these spells could *not* be central apnea?

I'm particularly interested in this because my son (age 32 years) is currently being worked up (sleep studies) to see if, among other things, his current breathing problems have something to do with central apnea.

When Ed, my son, was in the NICU, I remember getting a long lecture about central apnea (aka, Ondine's Syndrome or Ondine's Curse)from our neuro who said the brain damage our son had sustained might cause it.

Why did the docs tell you central apnea is not what is going on here?

Thanks for any info you can give,

Helen

Shannon said...

Helen, to be honest I am not quite sure why they said this. I know in his sleep study he had central apnea however he did not do what he does in the video. As well, his last stay in ICU he did this many times (like the video) and the fact that you cannot physically bag him (or if you can it is very difficult) also made them think this.

Courey said...

Have they checked into vagal nerve response? Usually the feet turn blue during a vagal episode, but sats that low would make you turn blue too.

My son will randomly "code" when about to poop (not every time) and we never have figured out why. I've heard of another kid that did the same thing more often and got an ostomy and was fine.

And whoever said normal labs don't rule out mito is right. My son has mito and sometimes his blood labs can be totally normal metabolically. So if they just went by that we'd never know that was it.

Courey said...

oh, and I've heard of another girl that anytime she got enteral feeds, she would code. As long as she's J fed, she's fine.

Emily said...

Have they considered doing a cardiac cath to look at his pressures? What genetic/metabolic tests specifically did they run?

Shannon said...

The docs initially thought it was because of his g tube feeds so when he was readmitted after five days of being home from the NICU (and having several spells) they did the j tube. He had that for two years. They did the j in Feb06 and he was fine until July06 when he had two episdoes within a couple of hours of each other. Then he went until April07 and then November 07.

Feb08 fundo/g tube done.

The one in the video was precipitated by him pooping. However that is the ONLY one that occurred that I know what was happening right before. Most are just out of the blue with no warning.

Caridac cath...they told me that if anything was wrong with his heart it would show on an echo. They told me it was too invasive for them to want to do.

Anonymous said...

I'm with Emily. I'm very surprised they haven't checked his levels by a heart cath. His spells could be caused by pulmonary hypertension and you would think since he's having apnea and these spells, they would put him on O2 around the clock to see if this helps. Best wishes and will keep him in my prayers.
Tammy

Shannon said...

He was actually on oxygen until he was 19months old and he still had them. He will still desat no matter what amount of oxygen he is on.

We found out in his sleep study that oxygen is basically toxic to him as he has a hypoxic drive.

kate said...

I'm also wondering about the cardiac cath. If they really do think it's cardiac related, there are a lot of things you can't tell directly from an echo. Pulmonary hypertension, for example -- according to our cardiologist, you can't read the pressures directly from the echo, you have to infer them.

Shannon said...

See, this is why I am so frustrated! I was told the very opposite. That his pressures are fine on the echo therefore there is no reason to do such invasive testing (cardiac cath).

Two surgeons that he has had told me after surgery that something is wrong. They both said SHUNTING. He is hard to control on the vent. Their words.

I was also told by a doctor that this does not look like pulmonary hypertension.

ThePreemie Experiment said...

Shannon wrote: "Can you tell me what makes you think mito by looking at the video?? No doctor we have seen in person has said such a thing."

Hi Shannon,

No one could simply look at the video and say it's mito. I was taking all of the information and looking at the big picture.

I'm not saying he HAS mito. I was simply suggesting that it be looked into. I can't remember the exact phrase but it goes something like, "if more than 3 systems are involved, think mito".

There is a very large mito group on yahoo. I am in a rush today but I'll post the link to my blog and see if anyone has any suggestions or parallel stories.

If you go to www.umdf.org there is a link to the body systems and how they may be affected in mito patients.

Again, I am not saying he definitely has mito. It's just worth looking into.

Paige has multiple systems that are involved. We saw a geneticist in Chicago when she was 4. He took one look at her, asked a few questions and then told me that she fit some of the criteria of mito but she was too smart. I was so frustrated. I know quite a few kiddos with mito and intelligence is only compromised in a few. There are so many different ways that mito can present. Unfortunately not all geneticists are up on the latest research. So, if one of them tells you that doesn't sit right with you, find another one. I didn't take my own advice because Paige's mini health crisis was over by that time. We were advised by a neuro to wait until she has another huge episode and demand attention during the time. So now we wait.

Shannon said...

Thanks Stacy. I have done a lot of research in the past on mito so I do know what things consist of. Ashton definitely fits into more than three categories of mito. I also talk to quite a few moms that have mito children and they range so much it is difficult to guess! I don't get why docs think mito has a "look".

I was hoping that with the traffic you get someone out there KNOWS what is going on. We'll see :)

Anonymous said...

I check into pulmonary hypertension. My daughter, an ex 25 weeker is treated, though her echo's were always fine. I say this beacuse they saw thickening of the bronchial walls. That is an indication of pulmonary hypertension. O2 does not help this. Viagra is actually the drug of choice. Pulmonary hyptension can cause sever blue spells b/c the kiddos basically clamp down an can not move air. This is only a suggestion and though I would throw it out there. Hope you get some answers.

Alexis said...

I'm not a doctor, but I do want to offer my best wishes and prayers. I hope you can get this figured out and get Ashton the treatment he needs.

Kristie McNealy said...

What does Ashton look like between episodes as far as development, illnesses, etc. Mitochondrial disease have similar characteristics that are a common thread or "look". This includes things like developmental regressions, lactic acidosis, myopathy, etc. Not sure what the docs are seeing, but maybe he doesn't fit when he is well.

Either way, these episodes look terrifying, and I hope you get the help you need for him.

As an aside to all of you, I'm keeping a list of people who are blogging for prematurity awareness month over at my site (click my name). Use my contact form if you'd like to be added.

Shannon said...

Between episodes Ashton is pretty much fine. There were times that he would be fine all day, have a spell and then five minutes later he is back to himself.

No real regressions. Pretty good for not being hospitalized. He has done quite well considering all he has been through.

I do know that it was very hard for doctors to "hear" me when I would describe these episodes as Ashton would be smiling away at them and looks absolutely FINE. This video has really helped me in terms of not having to describe things to them...instead I just show them.

Christamae said...

I would definitely investigate Congenital Central Hypoventilation Syndrome. Basically your body forgets to breathe. My friend has it and she is on airway support 24/7. Also Mito needs a muscle biopsy to be confirmed/denied.

(((hugs))) for you and your little one.

Anonymous said...

I don't know what is going on, but that makes me so sad. I pray that you find out what is going on with your little man so that you don't have to go through that anymore!!

Anonymous said...

Shannon, nobody can look at a video and tell you what is going on with your child. Did your child have several days worth of video EEGs? If so, were these TOTALLY normal? Even if this has been done and everything was normal you cannot rule out seizures. You can have deep brain seizures that may not show up on EEGs. Have they trialed seizure meds?

Has your son had a recent sleep study? If not, how do they know he doesn't have apnea? To me, this appears to be seizure activity (Possibly induces apnea?). Central apnea is a brain thing.

A normal biopsy does NOT rule out mito. There is NO test that will rule out mito. NONE. Next year's UMDF (United Mitochondrial Disease Foundation) Symposium is in the Washington DC area in June.

Some common mito tests are: lactic acid, pyruvate, common mitochondrial defects, urine organic acids, serum amino acids, ammonia, acylcarnitine, CoQ10 (cellular), etc. There are blood tests for genetics such as POLG 1 and mtDNA.

Most biopsies in the US are frozen. These are not accurate at all. There's some thought that they are only about 50% accurate.

Some things that make me suspect mito: seizure like activity, developmental delay, respiratory issues, sleep issues, GI issues, neuro issues, etc.

This does not look like central apnea. I would bet that the central apnea is an additional issue. The best place in the US to get a sleep study, IMO, is Children's of Wisconsin. They have the highest success rate in non-invasive vents. They are great at hypoventilation and unusual respiratory issues. Dr. Thomas Rice is the CCHS guru. This is our daughter's pulmo.

I met a mito doc from Canada at the 2008 UMDF Symposium. She does fresh biopsies. Are you in Canada?

Mito patients do not all look the same. You don't have to have developmental delay. Most don't have elevated lactic acid. Stacy, do I look delayed? Many mito patients look perfectly normal. Not all mito patients have developmental regression although some do (especially with viral illness).

Could these incidents be stroke-like events? Stroke-like events occur in some patients with mitochondrial cytopathy.

By the way, my preemie daughter has a CP diagnosis (very mild left hemiplagia). She has high tone in ankles and hypotonia from waist up. Guess what? I have same symptoms. I didn't even know this until I started seeing a PT for my knee and hip pain.

Mito patients are a heterogenous lot. We are not all the same.

Shannon said...

Yes, I am in Canada. Is the doctor you are speaking of that does fresh biopsies at Toronto Sick Kids?

Shannon said...

Anonymous said:
"Shannon, nobody can look at a video and tell you what is going on with your child."

I hold the hope that someone out there has seen this before. Ashton cannot be the ONLY child that does this.

"Did your child have several days worth of video EEGs?"

No he hasn't. The longest VEEG that they would do was 24 hours and that was in October of 2006. He has had several other EEGS but not for extensive periods of time.

"If so, were these TOTALLY normal?"

No, they were not normal. None showed seizure activity, only slowing of the brain waves.

"Even if this has been done and everything was normal you cannot rule out seizures. You can have deep brain seizures that may not show up on EEGs. Have they trialed seizure meds?"

No they haven't trialed seizure meds. For one, try getting a doctor to give you meds for seizures when they don't think it is. And second, I have real issues putting him on seizure meds when there is no proof of that even happening.

"Has your son had a recent sleep study?"

Yes, he had a sleep study while inpatient which was done the end of February this year.

"If not, how do they know he doesn't have apnea? To me, this appears to be seizure activity (Possibly induces apnea?). Central apnea is a brain thing."

We do know that he has apnea but not one doctor feels that what he is doing is JUST apnea.

"A normal biopsy does NOT rule out mito. There is NO test that will rule out mito. NONE. Next year's UMDF (United Mitochondrial Disease Foundation) Symposium is in the Washington DC area in June."

I know that you cannot rule out mito EVEN IF you have a negative biopsy. I also know that there are many people with mito who look like nothing is wrong with them. That is what I have been trying to tell his doctors as they tell me that "Ashton doesn't look mito".

I have heard of Thomas Rice before. Just don't know how to go about getting in to see him.

Stroke like events? Never thought of that.

Anonymous said...

Shannon, I wrote in the last time Stacy posted your video . . .

This is an outside chance, but has a pediatric neurologist been consulted? One of the pediatric neurologists in my town has seen Vic's "seizures" (which I call shunt malfunctions) and said that they are "behaviors," not seizures. I cannot shed any light on what he meant, what distinctions are being made--I only suggest that you might want to open up this discussion with Ashton's neurologist.

Another idea: go to the leading children's hospitals, online. Fine out which ones have well-known neurology departments (or mitochondrial specialists); AND which ones are doing research on these issues. Then, get ready to travel. Ask your PCP/ped to refer you to a specialist, to a specialty hospital . . . and GO. And make arrangments to STAY till you have an answer or at least another piece to the puzzle.

In my state, the Marshfield clinic comes to mind, as well as Children's Hospital of Wisconsin.
Or Children's Memorial in Chicago (midwest locations). Mayo Clinic in Minnesota, of course.

Cleveland Clinic. Sick Children's Hospital, of course. Etc.

Here is something I recently did. I went back to "hyceph-l," the online support list for people with hydrocephalus. I need to get smart about all the most recent developments/names of spcialists/centers of excellence with respect to hydrocephalus, because my son, Vic, who has been stable for years, is now having symptoms again.

Maybe you can find an online support group that would recognize Ashton's symptoms/patterns.

By the way, I hope you are keeping a diary of symptoms/events, so that IF there are any patterns, you can see them. Such as, could this be an immune/autoimmune response to something? Like an allergy? Like anaphylaxis? Or ???
What precedes an episode? Is it often the valsalva when you are bearing down to stool? Or is it vagal, where when your head/neck is NOT in good alignment, you could trigger an episode? Or, does it occur with certain positions/postition changes? Which might suggest an obstruction? Is it syncope? Would a child's version of the tilt-table test be in order? Or ???

Chris and Vic

Anonymous said...

Shannon said,
"We do know that he has apnea but not one doctor feels that what he is doing is JUST apnea."

My question is what is his doctor doing to treat the apnea?

Tammy

Anonymous said...

I am a nurse here in Kansas and work with pediatrics in the home. I was watching your video and have taken care of a child that had the same kind of episodes your son is having. The staring event is related to partial complex seizures. I am aware that your physician said that it is not seizure activity, however; I would recommend getting a second opinion if possible. Do you have oxygen available in the home? When he has those episodes oxygen is top priority and should be administered immediately. A suction machine would also be beneficial if you don't already own one to suction out his secretions to maintain his airway. Hope this helps you out and he gets the help he needs.

Anonymous said...

Shannon,

Please give him O2 24 hours a day and clear the airway with suction.
He ceratinly needs to see the another pediatric neurologist. It looks like his CO2 level gets quite high and please do some blood work to see her O2 level.
I really wish doctors will find the real diagnosis and treatment but don't loose your hope. There is a light at the end of the tunnel. Sometimes the tunnel is too long!PLease please talk to your doctor with all the possible comments the readers gave you. It's very hard for you to see your son suffering. Lots of prayers and hugs and remember to ask question through Stacy's website. Shi is an angel.

Shannon said...

Okay first...they are not doing anything to treat his apnea.

Second, he has seen four ped. neuros!!!! Way past second opinion stuff. NO ONE helps us!!!!!

Anonymous said

"When he has those episodes oxygen is top priority and should be administered immediately."

Oxygen does NOTHING for him in these episodes.

"Please give him O2 24 hours a day and clear the airway with suction"

Ashton cannot be on oxygen. He was on it until 18 months old. We have learned since then that he has a hypoxic drive which means that he cannot have oxygen 24/7. And at most he can only have .5L

We have a suction machine. That was the ONLY spell where he had secretions.

There is never something that happens that is the SAME. I have kept notes since he was born and could even tell you who his nurses were day and night while in hospital.

Nothing adds up.

Sheila said...

Hi Shannon,

I remember seeing the video the first time Stacy posted it on her blog - no one can dispute it is scary to watch. I was very happy to hear (though I acknowledge how hard it would be for your family) that he was admitted to the hospital for an 88 day stay to try to sort out what the issue(s) are. It sounds as though they were meticulously thorough - looking for cardiac or neurogenic causes. Did you find it some what comforting that they were willing to release him (in other words, it would seem unlikely if they felt that whatever may be wrong could result in a devastating result)? It is human nature to want a label and an answer which corresponds with a treatment protocol ... but frustratingly we just aren't "there" yet with so many things. If Ashton's life is mostly good (is he happy, eating, growing, participating in family activities etc) perhaps the best thing he has is a mother who keep the kind of meticulous observations and records. Sometimes "medicine" is simply about reacting to the symptoms in front of you and trying to relieve any suffering and create as much comfort and security as possible.

While it's hard to overlook the frustration you must feel over not having a definitive label or labels, it might be a good thing to focus on what you can infer from having an army of experts unable to determine anything which could be immediately life threatening.

Since it seems from your comments that a large number of the doctors who have actually seen Ashton feel that part of this issue is cardiac shunting, I might try asking for a records review by a place like the Cleveland Clinic, or Dr. Towbin in Texas ... I recognize you are in Canada and that is an issue, but perhaps you might find a Candian MD who would be interested in seeing if they could get this reviewed from the medical mystery point of view.

Good luck and hang in there !
Sheila

Anonymous said...

Couldn’t these spells be caused by the dysfunction/damage of the hypoxic drive? That would explain the slowing of the brain because of the lack of O2. From what I read, hypoxic drive dysfunction/damage is a very rare condition and pulmonologists disagree on how to treat it. That would explain the lack of help you are getting from professionals. They know the problem but don’t know how to fix it. Your best bet would to find a pulmonologist that specializes in this uncommon condition. Maybe the American Lung Association could help you locate a qualified doctor or find out if there is a study going on right now on this condition. Best wishes.

~♥Alli♥~ said...

Maybe a CoughAssist could help him.

Shannon said...

Sheila, you said " It sounds as though they were meticulously thorough - looking for cardiac or neurogenic causes. Did you find it some what comforting that they were willing to release him (in other words, it would seem unlikely if they felt that whatever may be wrong could result in a devastating result)? "

To me they did nothing more than what he had already had done. As well I had to FIGHT to get any tests done. It was absolutely ridiculous to say the least.

As for leaving, it was me that decided to take him home. It got to the point where we were sitting there doing NOTHING. Days would go by without seeing the team. When I told them that I was taking him home they were okay with it. However I do have to say that the doc that was on the Sunday I left was arguing with me that he should NOT be going home. So I asked her what was going to be done if he stayed. Well she of course said she didn't know b/c she was just the oncall. I was saddened by the care that he got. Many of the days were unprofessional. The one doctor there told me that there is a chance he could die when he has one of these (this was in the beginning of our stay). She was not even willing to let us walk around the hospital. I saw her before we left and she seemed very disappointed that we were leaving. But nothing she could do as they rotate and she wasn't part of his team anymore.

Anonymous said "Couldn’t these spells be caused by the dysfunction/damage of the hypoxic drive? That would explain the slowing of the brain because of the lack of O2."

This slowing would show at all times if there was damage??

Shannon said...

Alli, Ashton has a very productive cough. I don't know how a cough assist would help him with what these spells are??

mom to lilike (lily) locke and anjeni said...

I admire the strength of preemies and sick childen. They have the greatest coutage that gives them the strength to battle on.

sheila Brown said...

Shannon wrote:
The one doctor there told me that there is a chance he could die when he has one of these (this was in the beginning of our stay). She was not even willing to let us walk around the hospital. I saw her before we left and she seemed very disappointed that we were leaving. But nothing she could do as they rotate and she wasn't part of his team anymore.

Hi Shannon,

Did this doctor specifically explain *why* she felt that Ashton could die from these episodes ? If he's been having them for several years now, I would want some hard data to support a scary assessment like that - saying something like that in the absence of a reason is emotional blackmail and not a collaborative mindset. Did you check him out AMA or did the doctors ultimately accept that they weren't actually doing anything to prevent the spells or discover their origin. It seems as though this will likely turn out to be a combo-problem, not caused by one single body system. I hope that he either slowly grows out of the issues or someone stumbles upon something which improves his day to day quality of life. I know it is hard to ignore a chronic medical condition of your child ... I never had to try to do that until the last 2 years with my daughter Ali and her cardiac issue combined with the neurocardiogenic syncope that is actually more impactful to her teenage life. It's hard to see your child in the role of "patient".

Take care,
sheila

Anonymous said...

An epileptic seizure occurs because of an electrical short circuit in the brain. A non-epileptic seizure is not related to electrical changes; instead, it can be the result of decreased blood flow to the brain, a reaction to a drug, an imbalance in glucose or sodium levels, a tumor, or any number of other reasons.

http://www.everydayhealth.com/epilepsy-awareness/epileptic-seizures.aspx?xid=nl_EverydayHealthHealthyLiving_20081112

Chris and Vic

Anonymous said...

What about diaphragmatic eventration? (Maldevelopment of the diaphragm muscle or the nerve that stimulates it.)

http://www.pediaindia.net/archive/diaphragm.shtml

http://www.medcyclopaedia.com/library/topics/volume_v_1/d/diaphragm_eventration.aspx

Momof3 said...

That video broke my heart, Ive seen videos posted on youtube of child seisures, promoting awareness to others while recording the evidence there child had seisures when the doctor said the baby had colic or some other health issue instead the baby/child did not have. I hope you can find some answers to yoru boys health issues. I hope someone can setup a prayer request for faith in healing or faith in signs from God can help you find that medication you need to help your gorgeous boy.

Theis video tells of a story with a happy ending after he had seisures that can casue brain damage today is doing great when they searched for an answer for there son, with prayer and fath and he was treated with a special drug called ACTH that was a success he is now a normal healthy little boy.
http://www.youtube.com/watch?v=41Io4r0hRBQ

Anonymous said...

Is it possible you could post ashtons video on youtube, without where you live in which country as a youtube user etc or where the video was recorded etc, and leave the video open stating for helpful questions only.

I was reading about ng tube placement that ng tubes are placed in the Esophagus and if a ng tube is placed wrongly in preemies it can cause them problems. Or because of prematurity a child may have breathing issues related with
swallowing/Esophagus Disorders

http://www.proceduresconsult.com/medical-procedures/nasogastric-tube-placement-AN-procedure.aspx

Pulomonary Aspiration shown by Scintigraphy in Gastroesophageal Reflux-Related Respiratory Disease

http://www.chestjournal.org/content/130/5/1520.full.pdf



Esophagus Disorders
The esophagus is the tube that carries food, liquids and saliva from your mouth to the stomach. You may not be aware of your esophagus until you swallow something too large, too hot or too cold. You may also become aware of it when something is wrong.

The most common problem with the esophagus is gastroesophageal reflux disease (GERD). It happens when a band of muscle at the end of your esophagus does not close properly. This allows stomach contents to leak back, or reflux into, into the esophagus and irritate it. Over time, GERD can cause damage to the esophagus. Other problems include heartburn and cancer.

POTENTIAL CLINICAL PROBLEMS RESULTING FROM GER

Apnea
Problems that are frequently cited in conjunction with GER are apnea, failure to thrive, and airway problems such as recurrent aspiration or wheezing.26 Preterm infants often exhibit both apnea and GER, and the belief that the latter is an underlying cause of apnea of prematurity (AOP) is evident from the fact that it was the most frequent indication for the widespread use of cisapride in preterm newborns (see above).3 The evidence for this proposed relationship, however, is largely circumstantial and includes the observation that AOP occurs frequently in the immediate postprandial period,27 ie, when GER is most likely to occur. It also includes data from animal studies that show that apnea can be induced by the instillation of small amounts of liquid into the larynx, resulting in stimulation of laryngeal chemoreceptors,28 and the observation that apneas are more likely to occur after episodes of regurgitation.29 The latter observation is supported further by anecdotal reports of apneic spells occurring immediately after a reflux episode.30,31 Most studies that attempted to document a temporal relationship between apnea and GER, however, failed to do so.32–38

We recently addressed this issue by performing simultaneous recordings of MII and cardiorespiratory signals in 19 preterm infants with AOP. The frequency of apnea occurring within 20 seconds of a reflux episode was not significantly different from that during reflux-free epochs (0.19 vs 0.25/min). The same was true for desaturations and bradycardias, which are often considered more likely than central apneas to be associated with GER. Only 9 (4.8%) desaturations were associated with a reflux episode, and the frequency of desaturation occurring with GER was again not significantly different from that occurring during reflux-free epochs. Also, only 1 of 44 bradycardias occurred within ±20 seconds of a reflux episode. Thus, both cardiorespiratory events and GER were common in these infants but were not temporally related.1

Similarly, Page and Jeffery39 observed that preterm infants who were studied at term-equivalent age responded to the pharyngeal infusion of small volumes of 0.9% saline or water during sleep with a volume-dependent increase in swallowing frequency but not with an increased apnea rate. These authors suggested that apnea and bradycardia are predominantly evoked when the larynx rather than the pharynx is stimulated, which does not usually occur during regurgitation of small amounts of liquid.39 Finally, treatment with cisapride or metoclopramide had no effect on AOP.40 Infants in these studies,1,39,40 however, were not selected because they had symptoms suggestive of GER-related apnea. Thus, there may be the occasional infant with such symptoms, as also reported in case studies.30,31 In the majority of infants with AOP, however, the latter seems to be unrelated to GER and therefore does not justify provision of anti-reflux treatment.

Failure to Thrive
Failure to thrive, a symptom frequently reported in older infants with GER,26 seems rare in preterm infants who exhibit this disorder. Khalaf et al,41 in a cohort study of 150 neonatal intensive care unit (NICU) residents evaluated by a pH study, did not find a significant difference in body weight between infants with and without GER. A recent case-control study from another NICU confirmed these findings. Specifically, weekly weight gain and caloric intake were similar between groups. Nonetheless, infants with GER had a significantly longer hospital stay than those without (99 vs 70 days; P < .002).42 Thus, it seems that the close attention given to weight gain in NICU residents seems to protect against the failure to thrive often seen in older infants with GERD but that physicians are still sufficiently concerned by GER to keep these infants in the hospital for longer periods of time. Whether this concern is justified remains to be proved.

Airway Problems
GER may undoubtedly cause pulmonary aspiration, but this is usually a dramatic event that is clinically and radiologically apparent. The more controversial issue is whether chronic airway problems may be caused by clinically inapparent or "silent" GER. In one of the first studies that addressed this issue in infants, midesophageal pH, exhaled CO2, and breathing movements were measured in six 2- to 12-month-old infants with stridor; 5 of these also had some clinical suspicion of GER. Within 5 to 20 minutes after onset of acid reflux, retractions and stridor were observed in all infants. Stridor improved with medical management (bethanechol, positioning, feed thickeners) in all 5 infants in whom this was attempted.43 More recent, Bibi et al44 studied 116 children, aged 3 to 28 months, with flexible bronchoscopy including bronchoalveolar lavage and chest radiography; 54 of these had tracheo- and/or bronchomalacia. Patients with recurrent vomiting and/or feeding-related or unexplained cough (24 in the malacia group, 41 in the control group) underwent pH monitoring and barium radiography. Children with airway malacia were more likely than those without to have GER (70% vs 39%; P < .01) and had higher scores for lipid-laden alveolar macrophages in their bronchoalveolar lavage fluid (92–101 vs 52), suggesting reflux-related recurrent microaspirations in the former group. Infants with GER were treated with antireflux therapy, and an improvement in respiratory symptoms was noted.44

Several issues remain unclear from these studies. First, assuming a causal relationship, is GER cause or effect of the respiratory symptoms, ie, does it result in airway narrowing via stimulation of airway receptors and/or recurrent aspiration, or do the large intrathoracic pressure swings caused by the upper airway narrowing facilitate GER? Although the respiratory response to GER treatment described above supports the first option, it cannot prove it. It is not even clear whether there is any causal relationship. For example, a recent 1-year follow-up study of 63 infants with GER did not find an increased prevalence of airway problems in this cohort.45 Also, a comparison between infants with respiratory symptoms suggestive of GER and those with gastrointestinal symptoms only found less GER in the upper esophagus in the respiratory than in the control group (eg, a mean reflux index of 0.95 vs 4.0).46 Second, are data from older infants and toddlers transferable to preterm infants? The only study that investigated the relationship between airway problems and GER in this age group studied infants with bronchopulmonary dysplasia and found less reflux in the upper esophagus in these than in those without bronchopulmonary dysplasia.47 Thus, despite the above data from older infants, there is currently no evidence that GER is a significant contributor to chronic airway problems in preterm infants. Why then treat it?



Clearly, there are some preterm infants in whom GER causes serious problems, such as aspiration of gastric contents or recurrent cyanosis, or whose recurrent vomiting is related to CMA. These infants undoubtedly warrant treatment, which should involve a stepwise approach, starting with prone or left lateral positioning (under cardiorespiratory monitoring)48,49 followed by frequent low-volume feeds,5 removal of feeding tubes between feeds,6 feed thickening,2 possibly histamine-2 receptor antagonists,50 and finally a trial of cow milk protein–free formula.25 They should be viewed separately, however, from the vast majority of infants who have physiologic GER and do not require treatment. There is currently insufficient evidence to justify the seemingly widespread practice of treating GER in infants with symptoms such as recurrent apnea and recurrent regurgitation or prolonging their hospital stay. Objective criteria that help to identify those presumably few infants who do require treatment for GERD are urgently needed.

Anonymous said...

The last thing I recommend is googling his health issues fitting in with symptoms of health disorders/diseases/syndromes and see what information you can present to his doctors so the doctors can help you find some answers as how to help Ashton.

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it support in ashton said...

Nice !