Who wins the Oddest Crohn's Presentation Award?

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imaboveitall

imaboveitall

Joined
Feb 9, 2012
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...it's...VIOLET :award2:

Unlike being on the honor roll, this is valued only on certain foums wherefrom others may benefit from her peculiarity.

short version per The Guru:

Atypical presentation and constellation of symptoms all due to manifestations of active Crohn's. Unequivocally so, no further tests necessary.

This includes: (just the oddities that is)
back pain along spine
knee giving out to point of needing cane to walk but painless and joint not inflamed
extreme weakness
conscious seizure type "migraines"
joint laxity to the point where her hips go out when shifting position
color misperception (verified; she failed all Ishihara plates) Not IBD related but RARE and WTF
POTS (postural orthostatic tachycardia syndrome)
flushing episodes that feature ONE cheek turning bright red and hot

Prob more I am forgetting...we covered it ALL, this was the BIGDOG...in the end he said:
" Go forth and prosper my child, it is all due to CROHN"S"

If I don't laugh I shall surely cry...:biggrin:
 
:voodoo: My favorite smiley...
Oh it's onward w/tx...she had her shot Fri...awaiting lactoferrin dropped off yesterday.
I want to hear about other weird presentations if anyone has any to share, it'd be kind of awesome to read...
 
I am so glad you got some answers and I am glad that there is nothing else brewing on top of the Crohn's.

My son gets flushing of the cheeks. It is most often both cheeks but it has occasionally been just one. He has also been getting night sweats which I hear can either be attributed to prednisone or Crohn's itself. They are crazy night sweats where it looks as if someone has dumped a bucket of water on him! No fever involved just SWEAT.

Really glad your appointment went well.
 
I never heard of dislocations in relation to CD. That is interesting, I dislocate EVERYTHING! don't have CD, but my son does.
My dx is ehlers danlos
 
Yep, Ehlers-Danlos was on my mind...when she showed the GI back in Jan how her scapula extends WAAAY back, I said ED and he said, "you read my mind"....This plus all the rest is why we saw The Guru.
I can't begin to question such a BigShot but WTeffingF does joint hypermobility have to do with Crohn's??? :eek2:
 
Whoa, that surely is a load of EIM's hun! :eek2:

I have read that joint laxity is an EIM of IBD due to inflammation of the joints.

So is Violet colour blind??

On the subject of a red and hot cheek, Matt never suffered with this but he does suffer with one ear going bright red and very hot to the touch. I haven't noticed if it has happened lately but it certainly happened in the past. I haven't thought about this for a long time but I did look it up a few years ago look it up and IIRC there were some suggestions that it was related to auto immune disorders! Don't know how accurate that is though.

:hang: Mum, you are doing fab!!!

Much love, :heart:
Dusty. xxxxxxxx
 
Wow, you've got your hands full! I'm glad nothing new was found :), however, frustrating that you're still on hold, just waiting, with Humira...:(

Did he have any ideas as to why some of these issues are not responding to the Humira? If her inflammation was down (as per the last LF test), any idea when the reduced inflammation will translate to less weakness, etc.? Any other suggestions?
 
How pathetic is it that I get a happy thrill when I see someone has replied to my thread...:yrolleyes:

Dusty dear, I guess Winner V is a case where ONLY BIZARRE EIMS exist. :eek: God, if she only made sense. Re: the red ear phenomenon, unilateral red flushed patches and ONE ear is common w/kids who have dysautonomia (which V has and had before IBD), has to do with the vascular weirdness those pts have. MUCH overlap though between autonomic symptoms and IBD, according to The Guru, so I guess many have BOTH as V does??
Re: the joint laxity, he said she is very lax all over BUT NO INFLAMMATION.
I hate things that don't make sense. Hate them.

Tess, NO suggestions, no answer as to why though LF is way low (105 and now 182) she still feels like crap, suggestion is just to wait for Humira to "kick in" more.
My plan is to finish the 3mo trial we agreed to and then try naltrexone unless she starts to feel better.

I hope more Weirdies shall chime in...maybe there's a Weird Presentation thread

Oh I almost forgot...YES, red/green color blind. This can only happen in females when mother is a carrier OR color blind (I'm not, must be a carrier) and father IS color blind (husband died in 2005, we were married ten years and I never knew he was CB if he in fact was, doc says many folks are and don't realize it?) We knew she had color misperception before this visit, ophthalmologist discovered it.
 
"How pathetic is it that I get a happy thrill when I see someone has replied to my thread..."

You always make me smile! :lol: I hope you start to see some small improvement! :ghug:
 
How pathetic is it that I get a happy thrill when I see someone has replied to my thread...
Click to expand...

LMFAO! Just so long as you aren't so thrilled ya wet ya pants!

Okay I remembered now what else I was mean't comment on about the EIM's just so I can make the Odd Crohn's Presentation Award even more odd! It struck me as odd, :lol:, that Violet was diagnosed very quickly and has only has terminal ileum involvement and yet she has so many EIM's. Of course EIM's are present in those with small bowel involvement only but to a far lesser degree than those with with large bowel involvement.

Both Sarah and Matt have Ileal Crohn's only and even when Sarah was undiagnosed for 18 months and flaring badly for the last 6 months her EIM's were not massive compared to many. Matt as you know was diagnosed very quickly and he had zero EIM's.

Ah hell mate, this disease is sucky enough without all the EIM's thrown in. I don't know, I just wish you had been given a better explanation than it's all due to Crohn's, IYKWIM. Do you think it is?

Dusty. xxx
 
Hi All,
Caitlyn has also had the flushing sometimes on one side but usually both sides of the face. Her case has been pretty classic. She does get very bad joint pain even now occasionally although it is improved. SHe also got that erythema nodosum on her arm just one lesion and it is going away although very slowly. Sorry Violet has to be the winner in this. Cetainly no fun. I am wondering if the hyoermobility is not related at all. My two sons have "Loose Ligaments" which made them delayed in walking and turning over etc. They still remain more clumsy then other children. Maybe V's hyper mobility is just a coincidence.
 
*laughing* I thought IYKWIM was an Australian colloquialism for a second...:biggrin:
Dusty, I don't think they are all EIMS personally...but after seeing, let's count:
1. pedi endocrinologist
2. pedi cardiologist
3. pedi neurologist
4. pedi gastroenterologist
5. reg Johns Hopkins trained/practiced there for 10+ yrs and board cert hem/onc pediatrician who's been her doc since 2001
6. his wife who is an MD/PhD in hem/onc
7. The Guru of Immuno/Rheum
how can I argue?

Plus my background is in ...wait for it...medical genetics (no I couldn't make this stuff up) and I have training/experience in genetics counseling and diagnostics and still cannot come up with a unifying or concomitant dx beyond IBD.
I can't keep dragging her to docs, she went three years since dx with only seeing the GI for f/u, never had any acute visits, rarely saw the ped as she is never acutely ill, and now since Dec it's been a physician merry go round and I am through.
The blasted Humira is on board, so the GI is happy, and after the 3mo is up if it hasn't helped I'll have her try naltrexone, I don't know WTH else to do. :voodoo: I LOVE this smiley and I love all who reply to my threads :heart:
 
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Hey Kim, saw your reply after I posted...the laxity seems to be "new" as in, past 6 mo?
Guru's ans to that: "sometimes joint laxity gets worse in adolescence"
Does Caitlyn feel flushed all over when her face gets red? V does.
 
*laughing* I thought IYKWIM was an Australian colloquialism for a second...
Click to expand...

Fair Dinkum!

You aren't on a roller coaster ride hun you are in the twilight zone. :( :hug:

You can't do anything else mate except take a deep breath, say it's all to do with the Crohn's and press on. Take each day as it comes and cross each bridge as you come it. I think it's easier do it that way sometimes because to think of it all at once is just too overwhelming.

Sending loads of love and luck to you and your gorgeous girl! :heart::heart::heart:

Dusty. xxx
 
I found an interesting study linking joint laxity and CD (in adults though) that makes me feel oddly better about V's weirdness:

70.7% of their subjects w/CD had it (wow)
35.7% w/UC
versus 25.4% of healthy controls.

Theory as to why?
A link between collagen and CD pathogenesis. Not that it matters. I was just happy to MAYBE have her make a smidge of sense...:ybiggrin:
 
It's generally nice not to be the odd one out ay? :)

Funnily enough it's rare not put a symptom or diagnosis into google, that you are wondering if it may be linked to Crohn's, and add Crohn's into the search and not come up with something!

I think there is so much to this disease that is unknown, hell they don't even know why it happens in the first place so I guess I am stating the bleeding obvious there! :lol: But the fact that there are so many EIM's associated with it I wouldn't be prepared to say that any one of them may not be linked either directly through intestinal involvement or genetically.

Dusty. xxx
 
Oh my goodness! That poor child...you poor mom! Silver lining? I am so glad that there isn't something else out there that may interfere with her treatment.

Thanks for introducing me too another Crohn's term. Didn't know what an EIM was until tonight...you continue to serve!

So as for Olivia her only odd Crohn's presentation is her mother's paranoia!

Sending lots of Humira Hope your way!
 
Dusty, right, do they appear together because of a genetic link that predisposes to both and involves collagen (as the researchers postulated) or are they both unconnected results of autoimmune process, or is the joint laxity an EIM...I know in V's case she didn't have the hypermobility until...6-8mos ago? And only very recently started dislocating. So that goes more to EIM.

I just want her case to make some sense...:blush:

Cinct, the paranoia is more normal than odd once you board (or are forced onto) this crazy train of parent of chronically ill child. Sorry you're a passenger with me but thanks for the nice words...:heart:...I'm so glad I found you guys...
 
All 3 of daughters and myself have joint hypermobility. I have been told it should improve as we get older but my hasn't. I am the jonly person to know other my children who can roll ankle with the outside of the ankle hitting the ground and walk away.
 
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Catherine, THANKS...I know it's kinda irrational but anyone who has any of these odd "EIMS" like Violet makes me feel a tad better...:rosette1:
 
Being on this site has made me get some testing done into my ibs. Here hoping it stays as ibs.
 
Good luck Catherine! Fingers crossed that that all goes well! :goodluck:

Dusty. xxx
 
Not really an award you want of course. :) I'm glad to hear you got some news from the guru. Hoping you can find a medication that works soon.
 
I know, Jenn, it's not like when she won the Patriot's Pen Essay award (not bragging or anything).
Still waiting for Humira to DO something besides dramatically lower her lactoferrin which is nifty but hasn't helped QOL :confused2:
 
imaboveitall,
Perhaps you would like to take a look at the Undiagnosed Club in the Support Forum: http://www.crohnsforum.com/showthread.php?t=13113&page=86
A Forum Member, allieinwonder, has been tentatively diagnosed with Mixed Connective Tissue Disease (MCTD)--she does have painful and swollen joints, but I have read that in the early stages people with MCTD can have joint and/or muscle pain without inflammation and that joint laxity can be a symptom.
 
imaboveitall, I am so happy to see this post - if only to see that there are other kids in the same boat as my son - we have been feeling quite alone.

I joined the forum a while ago but haven’t posted much, and mainly in the Humira forum.

My 12 (almost 13) year old son was diagnosed with Crohn’s (small and large bowel involvement) about 11 months ago, was initially on Humira and recently switched to Remicade as he could not tolerate the Humira shots.

He has responded well to the Anti-TNF meds in that it eliminated diarreah and has reduced significantly his stomach pain. But since starting Anti-TNF, he has developed the following problems:

Muscular and skeletal joint pain in the legs, feet and ankles, no inflammation (he has trouble standing, walking some days and, stairs are difficult)
Red hot flushing of cheeks (usually one at a time - sometimes both)
Red hot flushing and itching of legs from the knee down only (while in shower or when standing)
Itching (all over body some times)
Restless Leg mainly at night
Extreme fatigue most days
Small rough lesion on ankle and chest - doc thinks its eczema - I don’t
Canker sores in mouth - occasionally
Difficulty concentrating most days

I don’t know why but I have had great difficulty getting his GI team to acknowledge these issues and that they could be somehow related to CD or his meds...

The flushing problem seems to have decreased significantly since I started him on a daily Claritin about 5 days ago.

The pain in his legs is the biggest issue now. I have been waiting for a referral to go through to a rheumatologist (because I don’t think they know what else to do) for 3 months now... I have read that there is a type of arthritis (reactive) in IBD patients that can effect the lower extremities and tests negative for RH and all other bloodwork is usually normal. I will be discussing this with his GI doc next week.

While we joking refer to my son as our "medical mystery" it is frustrating trying to find answers and getting symptoms allieviated...He has so much to deal with already just being an adolescent with Crohn's.

Thanks again for posting. In a strange way it is comforting to know that there are others who have the same experience as my son.
 
Hi Willsmom,

I realize this is just a very small part of your son's symptoms but I sometimes also have Restless Leg syndrome. And, while not dangerous or 'serious', it is very annoying! My doctor has told me that iron deficiency contributes to this as does water retention (I am low in iron). Just thinking that perhaps your son is also low in iron...

I hope your son finds some relief from his other symptoms soon! :ghug:
 
Willsmom, HEY!
Re: the flushing. Violet has dysautonomia also and I found a photo gallery on complexchild.com of "skin" things associated w/that and there was the hemifacial flushing! It looks like they've been slapped on one cheek, and it's hot to the touch. Apparently common w/dysautonomia, it also can be associated with mastocytosis. Hence, the Claritin: V has remote (ages 7mo-6yr) hx of urticaria pigmentosa, which is a form of mastocytosis. Masto causes flushing. I raised this w/docs when it began in Dec 2011 in case it was masto resurfacing. They didn't think so as hers was a self limiting case and had been resolved for so many years (8) but agreed to treat w/Claritin anyway, NO help for it w/Claritin for V, she still gets it.

All that to say, flushing is common with both dysautonomia and masto and I thought for sure V's was related to one of those, but all agree (incuding The Guru of immuno/rheum she saw Mar 14) it is due to CROHN'S. Theory is, she has "pulses" of inflammation happening when we see the flushing.
Does your fella feel flushed all over when it happens or just his face? V gets an all over flushed feeling but only face is red, unilaterally.

Re: the leg pain, V DOES get restless leg (started before Humira) and the knee thing started AFTER Humira but is now resolving so WTH...the joint laxity I think played a role in the knee issue now.

Now, the itching (pruritis) is COMMON with mastocytosis and it would behoove you to research that. It also reacts to heat (may explain shower reaction). V is terribly heat sensitive (dysautonomia can cause this too...yes, head spinning by now :ywow:) and has "pooling" of blood in her lower legs.
Your boy may have some concomitant things as V does.
Though after SIX docs ALL are unanimous that her current probs are all IBD.

I'm thrilled to see your post too...they can share the award :medal1:
 
I also just recalled Violet had itching on the BOTTOM of her FEET for years when in shower. Hasn't happened in awhile now.
Isn't this enough to drive you utterly mad? I'd feel better if she just had bloody diarrhea like everyone seems to think Crohn's pts have :stinks: (She has PERFECT stools).
 
We’re on the same page...

Hi Tesscorm,

You are right about the Restless leg it drives Will nuts. He was anemic in October and went through a series of Iron infusions but it didn’t seem to have an impact on his legs.

I just had all his levels checked Vitamin D, B12, Iron, CBC, ESR, CRP all normal, in addition he tested negative for RH, ANA, and anti-DNA - hence my latest thoughts on reactive arthritis.

Hi imaboveitall,

Will’s cheek looks exactly the same and yes he feels flushed and hot all over even though the redness is only on the cheek - He puts an icepack on his cheek to cool down - seems to help.

A week ago while looking for answers I stumbled upon Mastocytosis. He certainly has many of the symptoms, and I intend to ask the doctor about this next week. It was the catalyst for our “Claritin Experiment” (I am secretly albeit skeptically hoping it reduces his leg pain also as musculo-skeletal pain can be brought on also by too many Mast cells in the intestines).

Too weird re itchy feet - Will’s feet itch on the top after the shower and he is very temperature sensitive.

LOL his doctors seem more attentive when he has diarrhea. Will has perfect poop now thanks to Remicade...but there is still a whole bunch of unresolved stuff going on that I think is linked to Crohn’s.
 
Oh you already know about masto...SWEET. That was the first thing I thought of when you said Claritin helped. Best of all, the treatments for it are so benign.
Ask for a tryptase level. It's elevated w/masto. I requested one for V in Jan; it was normal.
HOWEVER, to make you even crazier, there is a mast cell disorder called MCAD (mast cell activation disorder) wherein they don't overproduce mast cells, but the ones they do produce (normal amts) are "fragile" and degranulate easily and with certain stim such as HEAT. In the case of MCAD, tryptase is often (not always) normal; in systemic mastocytosis, tryptase is usually high.

Mastocytosis can cause all sorts of GI symptoms too, as well as fatigue, flushing, ITCHING, and muscle aches and BONE pain as the mast cells are overproduced in the marrow.
I wonder if his skin lesions are mast cell lesions. The way to tell (so easy) is scratch them and see if they urticate (turn red and wheal up). This is called, "Darier's sign" and is how I dx Violet at age 7 mo.

If he is seeing a rheumatologist, that doc should know about it and know how to test for it. Immunologists and hematologists are usually who handle masto cases.
 
Thanks - He will see the GI next week and I’ll ask for the tryptase level to be tested.

Of course! Why wouldn't there is another difficult to detect disorder like MCAD to make me crazy!! God I hope its not that one...Sigh.

I knew about Darier’s sign and tried it but I don’t know if I was doing it correctly - it didn’t seem to make a difference. His skin will flush anywhere though just from pressure where he’s touched e.g., from a blood pressure cuff, from the doctors fingers holding his arm to give a needle, from his friend grabbing his arm to get his attention etc.
 
A pos Darier's will wheal. It will raise and look like a hive. Are the lesions pigmented? Masto lesions usually are tan in color.
 
Hey Caitlyn has a lot of these symptoms. The flushing, heat sensitivity, and itching. Now you all have me worried.
 
This has been an interesting thread.For years I have had sudden unexplained fevers. I would be flushed all over my body. These fevers would break in a few hours and it would be like nothing happened. I have a movement disorder called Essential Tremor. Like Crohns, nobody has heard of ET either. ET is in the same class as restless leg syndrome. My neurologist tested me for vitamin deficiencies and was the first doctor to realize I was not absorbing nutrients like a healthy person should. She thinks it is likely that my lack of proper absorption of vitamins b6, b12 and folic acid was a contributing factor to the onset of my Essential Tremor.

Its weird to think that my tremors in my arms and legs may be a result of my Crohns. But it could be.
 
Kim, remember V's SIX docs all unanimously say those symptoms are from Crohn's. So Caitlyn's prob are, too.

Doug, I have a friend with Essential Tremor, both hands tremble like a Parkinson pt. She's a nurse and has been tested for everything, no reason for the tremors found in her case. But with an IBD dx as you have, the nutritional deficiency being a contributing factor makes perfect sense.

Willsmom, scratch the lesion pretty hard, harder than yoiu'd scratch an itch. If it urticates, it may be significant. The doc should do it too and likely shall.
 
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I'm not so much worried as frustrated, I just want his condition acknowledged, identified and treated...
 
Ha, willsmom, welcome to my hellish world.
V's case making no sense has driven me all kinds of mad. :ywow:

I still think she has something else in play besides IBD. But I can't keep going to docs like a madwoman.

Your boy sounds enough like he may have masto that you can request the tests for it and at least you'll know. I'd rather V have that than Crohn's, personally as the treatments are so benign. Don't let them blow it off as a possibility.
 
Thanks for the support. I feel for you too. At least now I know there are other kids with similar symptoms.

I won't let them blow it off - I may only have a matchbook medical degree, but the GI team knows I do my homework and I won't go away.

The challenge is navigating the referral process to get to the right doctors...such a pain.
 
Izz has had itchy flushing on one cheek also...it was shortly after a Humi shot so was waiting to see if it happened again, but no. Funny how seemingly unrelated stuff...is related. :)
 
Was Izzi's raised? This isn't raised nor itchy, it's not on the skin like a rash, it's a flushing, and it's hot to the touch. Who the h*** knows anymore, my brain is close to exploding, V had her reg Humira dose today and I know it's not going to change anything...this bites.
I'm going to speak to the doc about naltrexone when we email next week re: lactoferrin.
Where's my stabbing smiley...:voodoo::voodoo::voodoo:
 
Got confirmation yesterday that Will can see the Rheumy next week - Hooray! We'll see what he has to say.

imaboveitall, hang in there - Humira can take some to kick in - it took about 3 months to take effect for my son - he also went to weekly shots.
 
Awesome about seeing a rheumatologist, they usually have diagnostic expertise. He wouldn't follow your boy though if it is masto, an immunologist or hematologist would.
I hope he is familiar with masto...maybe take some info with you in case he isn't. :ywow:

3 mo is the limit and all we agreed to.
See, her gut is happy now. Lactoferrin dropped from 3600 to 105 after loading doses. So HUMIRA IS working on her gut. Ipso facto, if her overall dishrag status was all from IBD as all SIX docs said, there'd be some improvement. But ther hasn't been ANY. Time for more stabbing...:voodoo::voodoo:
 
Angie, weird...it's ALL weird...:ymad:

I just emailed The Saint to move her f/u from mid-July to first week of June. I'm going to talk about naltrexone at the appt. I'm pretty sure Humira will be done in May. :voodoo::voodoo: (I like stabbing)
 
I'm a newbie to the forum, though not to crohn's or weird disease presentations. Here's my 2 cents:

This includes: (just the oddities that is)
back pain along spine
knee giving out to point of needing cane to walk but painless and joint not inflamed
extreme weakness
conscious seizure type "migraines"
joint laxity to the point where her hips go out when shifting position
color misperception (verified; she failed all Ishihara plates) Not IBD related but RARE and WTF
POTS (postural orthostatic tachycardia syndrome)
flushing episodes that feature ONE cheek turning bright red and hot

I get all the bolded. The joint pain is arthritis or from muscle laxity (I have both, so either one can cause it).
My knees give out and I wear AFO's so I can walk.
I have extreme weakness, it's related to my mitochondrial disease as is the joint laxity and hips popping out.
I have POTs and orthostatic hypertension with extreme dipping phenomenon. This is related to the autonomic dysfunction.
I also get funky flushing. Also related to the autonomic dysfunction.

In my case, it's all caused by my underlying disease and the muscle and autonomic symptoms that come along with it.

You might look into some testing for metabolic diseases or mitochondrial dysfunction. It's one of those diseases that has a wide spectrum of symptoms and presents as just plain weird.
 
Firework, THANKS.
I have considered mito, I raised it to The Guru and he dismissed the idea.
I'm going to mention it to The Saint (GI) in June at the next f/u.
When I was in school we were told, if 3 or more systems are affected, and no obvious reason, test for mito. It commonly affects the GI tract, (but not in an inflammatory way), she has the autonomic dysfunction which as you know goes right along w/mito, but I can't identify a third system...:voodoo:
 
imaboveitall said:
Firework, THANKS.
I have considered mito, I raised it to The Guru and he dismissed the idea.
I'm going to mention it to The Saint (GI) in June at the next f/u.
When I was in school we were told, if 3 or more systems are affected, and no obvious reason, test for mito. It commonly affects the GI tract, (but not in an inflammatory way), she has the autonomic dysfunction which as you know goes right along w/mito, but I can't identify a third system...:voodoo:
Click to expand...

seizures would be neuro.
 
Well, per the docs they weren't actual seizures :yrolleyes:, they were "migraine events" and just "looked like" conscious seizures.
More stabbing...:voodoo::voodoo:
 
Migraine Headaches are still neuro. So are PNES (Psychogenic Non epileptic Seizures). They just do not understand what is going on in the brain. I bet those are the so called migraine events. Check out the info at http://www.epilepsy.com/articles/ar_1112967056. These seizures are real medical events. They may not epilepsy, but they are real. Too many people, including doctors, think they are fake. They are not. Don't let them give you any crap.
 
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Thanks for commenting on Queen of Odd, doug!
Here's the thing, the two events occurred five and three days respectively AFTER the two Humira loading doses. NEVER before nor since.
So I think they were Humira related. Of course no doc agrees. :voodoo:
 
Your timing is weird, that is for sure. Because of that I would eliminate the Humira as a possible trigger.The docs do not understand all the neurological stuff, and they often just think we are up in the night when we report things that don't fit the mold. I really hope things go well for you folks.
 
I read your link (thanks) and those are not what V had...hers were: a severe head pain (migraine?) accompanied by screwed up depth perception, a "rubbery and heavy" feeling in her mouth, felt like she "can't tell what I am saying" and was talking out of her head. Lasted thirty minutes or so.
 
My wife has had many seizures both epileptic and non epileptic types. Some have been weird. Deere had a incident many years ago where she blacked out. When she came to she could not talk straight.
She started talking about other voices. Later I found out those voices were from a TV in another room, but she could not tell me that at the time.

This event was determined to be a migraine. She has many migraines, burg this was not the samhe. It lasted for quite a while. It later was determined to be a stroke. Www later found that her heart had a birth defect, a hole between the upper Chambers that is suppose seal up after birth. You might want tohave this checked out. See http://www.webmd.com/migraines-headaches/news/20090216/closing-a-heart-hole-may-help-migraines. The link talks about PFO but there itsanother ADD. The difference is where the hole is. I am not saying this is what it is, but my etudes migraines did not happen until she was grown. she had weird events that happened, similar to what you describe, as a kid. You might want to check that out. They do a bubble test, and monitor the path of these bubbles through the heart.
 
V was seen by a pedi cardiologist, echo done and EKG, due to her dysautonomia. All normal cardiac wise.
She didn't black out, she was conscious and talking...it was the weirdest thing I've ever witnessed. She was conversing clearly, but oddly, and afterwards had spotty memory of it.
When it commenced, it was the head pain that started first, so I'd given her some migraine formula straightaway. After 30 min or so, she like "snapped" out of it and was like, "whoa...what was THAT?" and the pain was also gone. So the docs think it was just migraine and the painkillers took effect and stopped the whole thing; hence why it ended right around when the painkillers kicked in.
That's their theory anyway.
She was rushed to the ped right after the first one and a full neuro exam done; normal.

I've read Humira can cause migraines so I think maybe this was an extremely weird migraine caused by Humira? Who in the h*** knows...:yrolleyes:
 

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