Medical Road Trip/Prayer Request Etc...

[H8PVMNT]

So he felt a notch better yesterday late afternoon and he was pretty strong last night.  He still couldn't stand without passing out but he was just stronger and more energetic somehow.  We had to go to stupid Walmart and he discovered that he could do cutting brakes on his wheel chair and pivot turns.  He now wants to do this to his truck.

I don't know if it's because they took him off a drug or if the new one helps, or maybe he is just getting stronger. It was good to see though an we are just praying for more good days as we try to figure this out.

Thanks everybody for all the thoughts, prayers, distractions, hard to find tea, beer, burgers and lodging.  It all really helps.

[H8PVMNT]

Caleb had a bad, heavy chest and his heart was pounding on Saturday night so he went to the ER.  They hydrated him with an IV and sent him home.  Sunday it was real nice weather so I asked him if he thought he could work the clutch.  He helped run the winch remote from the driver's seat to yank some posts and then I let him crawl over some stuff and ooze through the mud a bit in 1st 4.7 low.  He said the 4Runner was like a wheel chair except that he could play, get dirty and drive over stuff.

So still no good news but at least he got to play for a few hours.

[OVRAROK]

Caleb had a bad, heavy chest and his heart was pounding on Saturday night so he went to the ER.  They hydrated him with an IV and sent him home.  Sunday it was real nice weather so I asked him if he thought he could work the clutch.  He helped run the winch remote from the driver's seat to yank some posts and then I let him crawl over some stuff and ooze through the mud a bit in 1st 4.7 low.  He said the 4Runner was like a wheel chair except that he could play, get dirty and drive over stuff.

So still no good news but at least he got to play for a few hours.

so, have they ruled out the lyme disease, I sure hope they figure this out

[H8PVMNT]

Yes the Lyme disease came back negative.  Now we are looking into a possible ill effect from a meningitis vaccine he had about 8 days before he passed out the first time. Really hoping that's not what it is but the timing is really suspect.

[helipilot77]

Good to hear that he was able to get out of his wheelchair and have a little fun. 

[Cheesemaker]

Sucks reading about his health issues.   

[H8PVMNT]

So the meningitis vaccine can maybe trigger something called Guillian-Barre Syndrome. That is pretty bad stuff but not entirely hopeless. We may be shelling out for something called a "die contrast MRI"  Several friends have found cancer in their kids with this when it was invisible to other methods.  This was also suggested by a couple doctors in MT.

Drew would probably know more about this than me.

Looking at the spine is pending in Seattle on the 5th.

Caleb helped me bleed brakes last night and then drove the 4runner over some poles. He was also able to eat a piece of pizza.  If we could keep some food in him I think it would help.

[79coyotefrg]

check out this link http://www.cdc.gov/vaccinesafety/concerns/fainting.html

and this one

https://www.healthychildren.org/English/safety-prevention/immunizations/Pages/Meningococcal-Vaccines-What-You-Need-to-Know.aspx

What should I do?

    If you think it is a severe allergic reaction or other emergency that can't wait, call 9-1-1 or get the person to the nearest hospital. Otherwise, call your doctor.
    Afterward, the reaction should be reported to the Vaccine Adverse Event Reporting System (VAERS). Your doctor might file this report, or you can do it yourself through the VAERS website, or by calling 1-800-822-7967.

VAERS is only for reporting reactions. They do not give medical advice.

[germ]

Glen (79coyotefrg) contacted me about this post to see if there was anything I can add to the discussion. Its been a couple years since I've been on the forum, so some of you may not remember me. Just some background, so you know I'm not just blowing smoke... I've been in medicine for over 30yrs, and currently run an emergency room in California.

I've read thru all the posts, and I think I have a vague idea of what Caleb is experiencing. Since this is a public forum, I don't want to ask for too personal information, and if you would prefer, you can PM me or call/text (I'll PM you number). However, to get deeper into it and help you narrow down the myriad of possibilities, more info would be helpful.

So, childhood syncope (passing out) can come from many things. However, they tend to be cardiac, neurologic, structural abnormalities or psychogenic. It is rare, although not impossible, for it to be other things. Especially with the rapid onset and progression of the symptoms, such as Caleb seems to be experiencing.

Cardiac tends to be arrhythmia (which is where the heart goes into an unusual rhythm) or functional, such as aortic stenosis (narrowing of the aorta), cardiomyopathy (heart muscle becomes inflamed and floppy, thus ineffectual at pumping blood). There is also pericarditis which can be infectious or just inflammatory, which can "squeeze" the heart making it unable to fully move blood. There are several more, but these are the most common.

Neurological: This list is unfortunately huge, but in medicine, we always say that common things are common. The possibility of Guillien-Barre syndrome is certainly a possibility with his recent vaccination, but it is an extremely rare side effect. It can be exceedingly difficult to diagnose in the early stages, but is usually associated with "stocking and glove parasthesia" which means there is a numb/tingling sensation in the hands and feet (starts in the feet) and moves progressively up the extremities. Syncope is usually a late stage finding IIRC. Seizure disorder is much more common and can present this way. Also there is something called Vaso-Vagal syncope, where the vagus nerve is over stimulated and can cause the blood pressure to drop, and then syncope. Like I said before, there are numerous neuro things which can cause it, but neuro source for the symptoms is usually pretty rare.

Structural: These kinds of causes are usually found much earlier in life, and so this is a less likely source, but should be investigated as well. The most common would be the aortic stenosis I mentioned earlier, or even the cardiomyopathy. The Arrhythmia is by far the most common, with Wolf-Parkinson-White syndrome (WPW) being the most common of those. However, there can also be aortic aneurysm or blockage/insufficiency of the carotid arteries. There can also be a mass/tumor on the brain, which causes similar symptoms - but remember, he would likely have been having these symptoms for a long time if this were the case.

Pyschogenic: There is a condition which is called psychogenic pseudo-seizure, which can look very similar to what you are describing. It would be unusual in his age group, but not unheard of. This is usually caused by significant stressors in life which he is having a hard time coping with (I.e. death in family, divorce, bullying in school etc.). Again, this is an unlikely source, but in his case since everyone is scratching their heads, I thinks its best to leave no stone unturned. Just ask him if he is struggling with something going on in school. You probably already know most of the other stressors, but school is an often time overlooked area.

So that is a quick run-down of the most common causes of childhood syncope. With what you have described, I think a cardiac origin is the most likely place to look. You had mentioned that when you had him on the finger monitor his heart rate became irregular and fast, which would fit the picture of either WPW or something called SVT (supra-ventricular tachycardia) which can do exactly what you've described. You mentioned that it looks like his blood pressure drops just before passing out, and both of these can do exactly that. Also that Vagal nerve stimulation can cause it as well.

Without knowing more of his symptoms, it is hard to make specific recommendations, but I think he needs a holter monitor for 24hours, and then an event monitor. These will record his cardiac rhythm for 24hours (Holter), and the event monitor will record for 30 seconds before and after the event. Then I think he should be scheduled for an echocardiogram and possibly a TEE (trans-esophageal echocardiogram). Under the structural issue is that he could have a small hole between the left and right atrium or ventricle, which is causing un-oxygenated blood to cross before going to the lungs. This can cause syncope as well. They can do what is known as a "bubble study" to determine this. Because of his recent vaccination I think it would be prudent to get a neurological consult to see if there is the possibility of Guillien-Barre syndrome or seizure disorder. Again, I think this is a long shot, but not completely out of the question.

Good luck with all this and I will be praying for you and your family. If I can help in any way, please let me know.

GERM

[H8PVMNT]

Thanks guys!  Excellent information.  We have a bunch of things pending right now.  My wife got him in to see a doctor that actually took us seriously yesterday.  She ordered several more tests to be done before we go back to Seattle.  Not sure which or what, we haven't had time to talk about it.

The doctor still didn't think much of the vaccine idea.  I don't want to just assume that's it but until we get that seriously looked into and ruled out I won't rest easy. I have a guy in MT here that is a doctor that has gone mostly naturopath.  We are going to see him next week.  He is so anti-vaccine that I am worried he won't see anything else. 

The heart issues Germ is talking about seem the most likely.  A little hole in something or something being constricted...  We just haven't been able to get anybody to do anything but observe the symptoms and throw drugs at us.

I will mention these tests you talked about.  I really appreciate your time and thoughts on it.

[79coyotefrg]

I asked my chiropractor friend about the vaccine and he said its much too common a problem.   I have been trying to find the company. I'll let you know.

[Cheesemaker]

There is also OHSU Doernbecher in Portland, that is the leading children's hospital.  http://www.ohsu.edu/xd/health/services/doernbecher/


Plus, its only 45 minutes from Brown's!! 

[germ]

The echo-cardiogram, Holter and event monitor are non-invasive, which means no getting stuck with needles, and will provide definitive information that can be use to rule in, or rule out, the conditions I mentioned above. I hope this new physician will continue to pursue this to it's logical end, and give you an explanation of what is causing his symptoms. But please also remember, there are times when we cannot completely explain why the human body does what it does. And at least for me, as a clinician, it is more frustrating to not be able to give a clear answer. But sometimes, it defies a clear explanation... at least initially.

Not to be too esoteric here, but also make sure you are checking in with Caleb. This can be very frightening to a young man, and he needs the emotional/physical/spiritual support to get thru this. At his age, we are all 10ft tall and bullet proof. This can really undermine that belief. So I just encourage you and Mom to "check in" with him, and make sure that  he is ok. Allow him to be afraid, and express that. Allow him to be a child. But encourage him that he has all the support in the world available too him and that you are doing everything for him that is within your power. And remind him that there are people who have never met him but are praying for him and care about him. It is truly amazing what the human spirit can do. It just needs encouragement. And to you... This is one of the most terrifying things that a father has to go thru. The concern that his child has some health issue that we (as humans/fathers/individuals) are not prepared or capable of resolving alone. Be gentle to yourself and your family. Do what you can, and rely on those who can do what you cannot. but always be a loving father. And remember, you are not alone in this. His "individual" condition is really a family condition. Just be aware, and try to move thru this as gracefully as you can. It is not always about finding and fixing the issue (which is what we as men and dads do), but  it is also about being that sturdy rock that the rest of the family looks to in order to get thru this episode. The final answer will always become apparent at some point, its how we go thru that process that defines us. ALWAY's be a good dad. (trust me, you'll never go wrong).

I know, you didn't ask for that kind of advice, but I also know that the solution to a medical issue is not always in the result of this or that test, or that procedure or this one. It is how we move thru this process as humans. Eventually we will always find an "answer", but its how we move thru that that really matters. I hope that Caleb's answer is quick and easy, and resolves easily. But he will always remember what you said and how you responded more that the illness or the tests/procedures/treatments. From what I can see you are doing it "right". Keep going.


GERM

[Prismo]

This kind of stuff with good people truly caring and trying to help is why I like this forum better than most of the others.
Hang in there, sounds like a few new avenues have opened for you.

[germ]

any updates?

[H8PVMNT]

Yesterday they checked his eyes  20/20 and no issues seen from that perspective.

Also visited with a guy about the vaccine thing being a real possibility as the trigger for this. He is somewhat of a specialist and has studied cases like this where an extreme reaction to a vaccine is likely due to timing of the onset of symptoms.  Unfortunately he did not have any way to prove this other than the timing.  He gave up a set of supplements that basically detoxifies and boosts nutrition and won't conflict with anything else we are doing.

Went to the ER last weekend because he had that severe chest pressure and pain feeling again.  They did a "12 wire EKG" ? which did not turn up anything irregular. 

Cardiologist doubled the dose of propranolol.  They have had him on that for about 2 weeks with no effects of any kind good or bad.

We are going to Seattle next week where neurologist has ordered an I think an EEG and they will be doing an MRI to look for something.  The other tests you mentioned may be in the works locally from our current provider but won't be able to get done until after Seattle.  People seem to be ruling out a physical heart problem, which I'm not to sure about.

His guts were super backed up but have been getting slowly better.  He has been able to eat a bit the past few days without throwing it back up.  He seems to be getting a little stronger since then but still can't eat much without feeling sick.  He sees a GI specialist week after next in Helena.

Last night he was able to tale maybe 12 steps from the couch to his bed.  He didn't pass out but just got super dizzy.

[redneckcustoms13]

What germ said could not be anymore true. Your family is what a family should be. You all work together to make it through things. I'm sure Caleb feels like he is letting yall down by not being as much of a helper as he used to be. If you can keep his spirits up; and it seems you are certainly doing all you can to, he will notice that even though he isn't the hand he used to be he is still a very important part of the team. I wish you guys the best of luck with all of the tests and travels thst await you. My family and my mother's church have been praying for your family and Calebs recovery from this illness.

[H8PVMNT]

Headed back to Seattle for appointments and testing next week...

[redneckcustoms13]

Goodluck man, I hope more than anything that they can give your family some sort of answer.

[H8PVMNT]

Got to Spokane today and took Caleb to the army surplus store.  Got him a vintage "Explosives" satchel for his wheel chair.   

After that stop the 4runner started running poorly, like a bad ignitor.  I was really not excited to have to find an ignitor in Spokane when I probably have several at home. 

Prayed we wouldn't break down on I-90 in the heat with traffic whizzing by.  I lurched into the hotel and when I popped the hood the pickup wires to the distributor were out of their spot and shorting out on the exhaust heat shield.  Thankfully an easy 15 minute fix.

I have had this same thing happen on these engines exactly 3 times in my life.  I was wondering why I couldn't remake the pickup wires with some silicone insulated spark plug wire.  Then it couldn't melt, ever, even if it was flopping around on the manifold.

Caleb has a sensitivity and pain behind his left ear now.  I'm hoping this is something developing that will lead to a clear diagnosis.

[helipilot77]

Glad it was nothing serious.
I will be working at Children's Hospital all week, so we can grab coffee at the Starbucks on campus. I also know a good German Pub nearby that has excellent beer and delicious Pretzel sandwiches.

[H8PVMNT]

Glad it was nothing serious.
I will be working at Children's Hospital all week, so we can grab coffee at the Starbucks on campus. I also know a good German Pub nearby that has excellent beer and delicious Pretzel sandwiches.

I'll shoot you a text.

[H8PVMNT]

So MRI turned up nothing which is good.  His condition is still somewhat of mystery though, which is discouraging.  Sent in a sample of urine for a very extensive test to do with the thyroid.

Cario folks say this is absolutely not cadio, but I'm still not completely clear on why.  Neurologist thought that the vaccine thing was quite logical and made sense. That may be all we are left with when we get done.

Sure was beautiful in Seattle this week. Got to have coffee with Nate real quick, thanks Nate!

Headed to Kellogg, ID tomorrow and on home the next day.  I plan to scout Compressor Trail if everybody feels up to it on Sunday morning...

[H8PVMNT]

Neurologist did not find anything scary.  She did say that this being a reaction to the vaccine is very likely.  Had a good MRI of his head, she did a physical check to see if we should suspect spine problems, checked into cerebral/spinal fluid pressure, which also looks OK.  He sees a GI specialist in Helena tomorrow.  If that doesn't turn anything up we are going to try to get to a "Dysautonomia/Potts specialist.

Doing a little research, a lot of kids get this way from an unusual reaction to a mundane virus.  They just kind of get their autonomic nervous system, our body's ECU if you will, kicked out of whack.  Then heart rate is wild, blood pressure is stupid and blood vessels don't do what they are supposed to when they are supposed to do it.  GI tract gets all screwed up, everything we are dealing with.

There are several outfits that work on only this.  One in southern California, and a couple we found in Texas.  Oddly the most successful based on what we've found are doctors using biofeedback and mechanical methods rather than drug therapy.  One place uses a balloon typically used to stretch out veins, but they use it to stimulate nerves somehow getting almost instant relief, kind of a reset button for the autonomic nervous system, with varying results on how long the fix lasts. No idea how or why this works...

The one we are really interested in uses some kind of biofeedback monitoring equipment paired with breathing/heartrate exercises to slowly re-train the autonomic nervous system how to regulate itself again. This 3-6 months to see much effect but seems to be very permanent when you get done.


The directions to Compressor Trail, locally known as "Grouse Gulch" or the "Star Mine Trail" lead you through some residential looking areas, then you get to what looks like the end of the road and a little fire road takes off to the right through some trees.  This fire road leads over a saddle and down to "Grouse Gulch" where the trail is.  Caleb was feeling poorly so we didn't go any further than confirming where we were on the topo map.

Anyway, I know where it is now!  Looks like the area is riddled with lesser dirt 2 tracks as well...

[helipilot77]

I'm glad you were able to Scout it out. Nice!

[H8PVMNT]

Caleb saw a GI specialist today.  We will have a bit more testing done in Montana but the basic drift is that this whole thing has been triggered by the meningitis vaccine he had in January.  Basically the negative reaction to the vaccine puts your autonomic nervous system in a tail spin and your heart rate, blood pressure and other functions are no longer in sync.

Kids with any kind of neurological "off-ness" is who it seems to be hitting in a bad way.  Caleb has always been prone to something called "abdominal migraines" and has some odd, notable reactions to certain food preservatives.  So if your kid is prone to migraines or anything weird, consider opting out of it.  It is now required at about 7th grade. Used to be college age.

We have been visiting with a few specialists who deal with "Dysautonomia" the blanket term for what he is dealing with.  The best results are at a place in Dallas, Texas who deals with a lot cases like his caused by vaccine or virus.  We are trying to come up with the $6,000 fee and cash for airfare and hotel for Caleb and Mom to get down there ASAP, which seems to be about early July as far as booking goes.

We can probably come up with a couple thousand bucks if we really scrimp and save between now and then. We started a nifty crowd funding page.  I don't want to be cheesy but I thought I might as well post it up here as well as other places.  Don't feel obligated but here it is:



https://www.gofundme.com/GetCalebUp

[helipilot77]

Good that someone seems to have an idea of how this might have happened and hopefully what to do about it.

[SqWADoosh]

Hey man I just tried to donate and its giving me an error saying there is a problem with your account? Also I'm going to share this on my club's Facebook and a couple other places to help drum up donations. So get this sorted ASAP so we can get you guys the money you need to get that kiddo healthy again!

[mudmaster]

I didn't have a problem??

[SqWADoosh]

I didn't have a problem??

When did you donate? I just tried it for the 3rd time and its still saying it.