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I assume this is what he will do w/ me but says he has trouble doing the sweat tests on young children. Ava is four. He was talking about using some drugs that are no longer used to try and induce sweating. He also talked of using nicotine, though I was not sure if he was serious or not.

My daughter has a very abnormal eeg. She does have seizures, but she has NEVER had a seizure while hooked up to an eeg, just abnormal spike and wave activity. I also have a nephew w/o epilepsy that as an abnormal eeg.

I get this too. I do have mild Raynauds, but tent to believe the icy/burning is not raynauds but maybe a neuropathy thing.

Did you do the sweat test? Does anyone know how they do one on children? This is one of my bigger concerns w/ Ava. We were at the Childrens museum this weekend (a very cold day) but she was overheating while inside. Her face does not sweat. She gets very flushed an hot to the touch. I want to be sure they are able to test her accurately when we got down in March.

Have you been over to the Preeclampsia foundation forums? There are others that have had abruptions. I forgot to mention in my earlier post, I was very tachy as well as had very high bp. My POTS symptoms were greatly increased during preg. My BP would run as high as 130/190 ... my HR often was into the 140s to 150s. After the c/s my BP dropped down to 50ish/30ish.

I am so sorry to hear your sister lost the baby. I had a partial abruption at 28 weeks w/ Ava. We did an induction at 35.5 , I questioned weather or not it would be safe since I had the abruption. Ava did not tolerate the induction well at all and her HR dropped many times. FINALLY after 2.5 days they did a c/s ... unfortunately Ava had a stroke. Again I am so sorry.

Hi Lisa. Yes, I have the cold pinkys and half of the finger next to it gets cold. It will get numb and achy sometimes too. I do not know it it is a nerve or circulation thing. Probably nerve. I also often get cold feet (unless I am sleeping, lately my hands and feet get very hot during sleep, but that has to do w/ my veins and blood flow). Anyway for cold feet I use the LL Bean slipper socks or the Acorn socks. Smart wool is pretty good too.

I can tolerate these drugs once in great while. But if I take them more than two days consecutively, they will trigger pots symptoms. Not just tachy either. It will worsen all of my dys symptoms as well is causes some pretty intense feelings of nervousness and also triggers RLS/PLMD symptoms. Antihistamines are pretty well known for trigger seizures and exasperating or even causing movement disorders ... symptoms of anxiety and restlessness and so on. For me, benedryl is the worse, then zytec. Clariton has the least amount of side effects, but it also is not very a very effective antihistamine for me. I use flonase or veramyst. I have similar effects from benzodiazepines (such as xanax).

Hey FLop. Muscles contract during the convulsive seizure. Ava does not typically have those, in fact her entire body becomes very limp. SHe has autonomic seizures which are typcially non-convulsive simple partial seizures. The symptoms are similar to dys symptoms. She as nausea, sometimes vomiting, tachy, low o2, flushing etc. I am familiar w/ the smell of ketosis, it is typically more of a sweet smell, but Ava's is not. It is just an icky smell. More like the smell of a throat infection (which has been thoroughly checked out). It may though be a smell of dyhydration... I don't know. It could just be how she smells during ketosis. Again I am just not sure. Jump, yes I am thinking she maybe acidoitic during those episodes. She has been vulnerable to acidosis even before the diet. So that is another question, why? Typically on the keto diets for epilepsy, kids may have acidosis in the beginning but then they are fine. Ava gets it on and off. She is on a much higher carb count than the typical classic keto. It seems to be more fluid related somehow. Also she seems to need to maintain an even carb count, not just higher or lower. All of her carbs are low glycemic (meaning they do not cause a big sugar spike) She also has had low free & total carnitine in the past which commonly occurs w/ the diets, but interestingly without any supplements, her levels rose to above normal. She does seem to have metabolic quirks. And your question about sz trigger acidosis, I am not sure. Probably not but in the past her seizures have causes lots of other metabolic abnormlities.

My card has always been reluctant to put me on florinef or any meds as I have an AV block. SHe has always felt I am senstive to meds card wise ... she is right. She was closer to putting me on it this past year, but I asked her to hold off. Still, I understand how florinef works (or at least undertsand what it does for us) but I am wondering why we are wasting if we are wasting. Is there an underlying issue that can be corrected. I have always wondered about this but am now more than ever. I have mentioned Ava has some pretty quirky seizures ... because she has autonomic seizures AND probable autonomic dysfunction, she is at increased risk of SUDEP (unexpected death from epilepsy) so I am forever looking for answers and trying to minimize the effects of her aut dys along w/ her aut seizures. During her seizures she has alway had an odd smell to her. Used to be clearly metallic, sometimes it was a burnt smell but lately it is just an odd smell. Well this last time I decided to check her urine. She was spilling large ketones (the highest amount), highest specific gravity & lowest PH. These are signs of acidosis. I am thinking the dehydration is triggering the acidsosi. She is on a low carb med diet, but it alone should not be triggering this and it only happens every now and again. During one of her prolonged seizures, pedi thought she "smelled" dehydrated. My daughter drinks a ton! I think I am going to sched an appt with ped metabolic specialist to see if she has any thoughts on why folks w/ dys may be wasting fluids & salt and if she knows of any way it could be prevented (other than the usual salting or florinef). Thanks everyone for your input.

I know extra salt and fluids help us to function better, but why? Is it because we for some reason cannot utilize the typical amount? Do we waste? I know for me, fluids go right through me and sometimes I can still feel dehydrated. I do best when I eat foods w/ a high water content. When I hike, I do lots of salting but it comes right out of my skin ... and when I dry sometimes you can see a salt residue. My daughter is similar. Fluids go right through her. She drinks a ton, but sometimes still shows signs of dehydration clinically (a high SG). When she was a baby, her feet were always salty. Neg for CF.

Came from this article:Simple Self-Help Maneuvers Are Effective in Aborting Vasovagal Syncope Interesting about the temp issue. I am the opposite and in fact nutty fevers are part of my dysautonomia. I went a long time w/ having daily fevers ave 101 to 102 and as high as 105. I'd seen many docs but no one could figure it out. years later of course I'd find it it is just another one of my autonomic quirks. W/ illness, I get fevers easily.

Gastroparesis is delayed gastric emptying. I have had these issues all of my my and am going through a flare right now. I agree in seeing a a GI again. I would think you do not have to go through another test .... just tell the GI doc you are having symptoms. He may give you meds and explain which foods can worsen gastoparesis. In re to diet, in general, high fiber and high fat foods slow down gi motility so the gastro may advise you to cut these foods out but I think it is best for each person to figure out which foods are triggers rather tan cut out all fats and fibers ... esp the good ones. For me whole grains, esp brown rice ...which is high fiber, actually is great for keeping my system moving along. Avoiding sugar & too much coffee also helps. One of the more common meds for gastroparesis is reglan. IMO, Reglan is the drug from ****! It certainly does work for some, but can cause severe side effects in others. It is a dopamine antagonist so if you have any issues w/ anxiety or any type of movement disorder tell the doc if he wants you to try this. Domperidone is a similar drug, but you have to have it compounded or order it from another country. It has a much better side effect profile and IMO works better than Reglan. Finally, exercise can help to improve motility as well.

I agree! In fact I think yoga is great for both my EDS & POTs! I use it as part of my "reconditioning". It is great for strengthening the areas around my loose joints (which will help to prevent subluxing). I think the key is to know your limits, go slow and of course do not over extend.

Ah .. sorry about your crazy system. I recently saw Dr Peter Novak and he was telling me about some dys & eds docs o/ in england. When I see him again, I can ask him who he was referring to. Here is a teensy bit about POTs & EDS from Dr Nazli & Franomano:

Seriously??? Are you still w/ the GP? I was examined by Nazli McDonnell last year as part of the NIH study. It seemed clear to me that dysautnomia was something that commonly occurred w/ EDS (same w/ chiari). In fact as part of the EDS study, they test for POTS.

This is why I call my & Ava's immune/allergy related issues quirks. They are never consistent! Ava was getting fitted for a fiberglass cast once. Pedi knew she was sensitive so she was sure it was lined w/ 100% cotton. Ava still managed to have a couple of "odd" hivey welts. Pedi was like what the ???? We figured it must have been from the heat of the saw. Who knows though. I get those isolated hivey welts too. So what tests do they do for MCAD? Is the test pretty accurate?

When my dys was at it's worse about eight years ago, I had episodes like this a lot. A couple of docs suggested seizures. At the time I was also having dejavu feelings several times a day every day.

Holy Cow Maxine! I am very sorry for all you are going through. I have had te test you have had ... cannot remember what I had w/ the coloscopy drugwise, but can say whatever it was it did not work. The procedure was extremely painful. When you were at te NIH, did you see Dr Nazli? Did she mention anything to you about a cancer/EDS connection? I have a lot of cancer in my family and tons of other inflammatory issues, seems as though I remember saying she was going to look into a link.

Hi guys, I just wanted to mention, in re to the premature aging, very visible veins & aneurysms, these things CAN occur w/ CEDS too not just VEDS. We have CEDS in my family. Most of the woman on my moms side of the family are extremely veiny. Many of us ave premature aging and I have a "bulbous" vessel in my neck (probably the beginning stages of aneurysm). I wanted to mention this as I had an MRI a couple fo years ago and because the bulbous vessel was only slight, the radiologist did not think it was important enough to tell me PCP. I read it on my report and showed it to Dr Nazli w/ the NIH. She said it needs to be followed. So if any of you have EDS and have had MRIs, get a copy of your reports & disk. About the original post, yes my skin is pretty translucent & can see my veins and I am not all that pale. My veins bulge after shower or bath, but cardiologist says that is due to the heat. They also bulge while in bed, I use a lot of blankets so again probably from the heat.

I am becoming more interested in this topic and cannot wait to learn more. W/ my IC work they found elevated mast cells (don't know if that means anything) but I have always been prone to quirky rashes, had anaphylaxis once, have raynaudys type symptoms and so on, however, I could never tolerate benedryl or any dopamine antagonists for more tan a day or two consecutively as they are a huge trigger for my ANS symptoms, abnormal movement issues, worsening of allergies & small seizures. In terms of histamine issues, as anyone noticed improvement when eliminated certain foods from their diet? It has been most helpful for me to eliminate processed & high GI foods.

I have not been through it, but am thrilled to hear there is such a program and hope that there will be more everywhere. Over the years I have tried to do similar for my dys health issues and have had some wonderful docs helping me. One doc that has helped me quite a bit is the DO I see. Many DOs in general focus on the ANS. Does anyone else get OMT to try and help some of there ANS symptoms?

Well, I am not sure of the details,and do not know much about mast cells or other histamines, but know some of the more recent data on Epilepsy suggest a relationship between inflammation & seizures and one article suggest a new type of seizure med may be an anti inflammatory. It makes a lot of sense to me. The type of EEG pattern Ava has is likely ESES (electrical status). ESES can lead to LKS (Landau Kleffner Syndrome) and sometimes regressive autism. One of the more successful treatments for eses is steroid treatment, not a typical sz med. I believe there is a link between the quirky immune responses, quirky ANS & some seizure types and/or syndromes.

Hi Julie, I will try and check her bp ( I will have to get a teensy ped cuff). I am very interested in the Mast cell & histamine thing. Do you have any good links? Oh, and about te night time stuff, often when her HR goes up & O2 drops, she usually says se feels scik and sometimes vomits. One reason I am pretty sure it is more sz ... is because her EEG shows her have sleep activated activity. In general, her EEG is significantly abnormal having almost continuous spiking day and night but more active w/ sleep. Having said that, we know allergies can trigger sz or increased activity. I have also suspected that seizures can trigger histamines. I brought this up to a ped allergist/immunoligist, but she said se was not aware of any info suggested sz can trigger more histamines or make a person more "allergic". Again, thank you all for this wonderful and helpful info.

"I'm sorry to "nit pick" but the subtle differances matter. " Oh please don't apologize, I nit pick too (often) and agree subtle differences matter ... and is why I am looking into all of this ... making sure we know what is sz, what is movement disorder and what it dysautonomia (or cardiogenic). I am just now learning about dys symptoms causing sz or sz like episodes such as yours and trying to figure it all out. About the autonomics seizure, here is a bit of info re PS (Panayiotopoulos Syndrome) Right now we are assuming Ava has episodes are aut sz clusters & aut status. I will definitely look into the book you recommended by Grubb and would appreciate the link. Panyiotopoulos Syndrome is named for Neurologist Dr C P Panayiotopoulos. I have one of his books. I would love to read Grubbs book and see how many over lapping issues there are. When I first started reading about PS, it was said to be rare, now it is said to be pretty common. If you hear of a child having cyclic vomiting, it is possible they are actually having autonomic seizures. I understand there is a difference between neuro seizure & cardiogenic convulsion, but as the aut neuro says, the only way to know for sure is to have an eeg on a person during an episode. This is another problem we have. No hosp in my state (maine) will put an EEG on my daughter during one of these episodes (even when she had a three hour episode & they suspected another possible stroke) ... we now get all of our neuro care in Boston, but it is a four to five hour drive so we likely would not be able to capture one on eeg, though Dr Novak really expressed an interest in trying to capture one & I think may be thinking of ways to induce one. In the above describing PS, it states most aut sz are non convulsive ... Ava's now are non convulsive and consist of only aut symptoms, but she used to have convulsive episodes, mostly partial though. She has had generalized tonic clonic status ... and had a very unusal tonic episode. He whole self curled inward while she was still aware and somewhat alert. I was never sure what the heck this was. I have had formal sz recognition training in the past ( worked many years w/ brain injured folks), have a brother & sister w/ generalized epilepsy so I have seen lots of seizures. That tonic episode my daughter had was most unusual. Many would assume it was generalized because it involved her entire body, but it could not have been because she was still aware and responsive. I have wondered if this could be more of a cardiogenic thing. I am certain many or most of these episodes are neuro sz, but when they are prolonged, I am not so sure. It seems to me what may be happening is a true sz triggering these cardiogenic events. "Epilepsy very rarely causes arryithmia." I wish this were true. Every year more than 50,000 people die epilepsy related deaths. Some of the times it is from status, some of the times accidents that occur during sz and some of the time it is SUDEP ( sudden unexplained death in epilepsy). SUDEP is often caused by a fatal arrhythmia or cardio/resp event. It is the autonomic simple partial seizure that causes this (the type my daughter has). While aut simple partials don't UNUSALLY cause these events, they do some times. I hate being able to say I know of many children that have died epilepsy related deaths or have been in asystole from these seizures. My concern/fear is that my daughter might be at greater risk because she does have these aut seizures AND likely has dysautonomia. The aut neuro confirmed she may be a great risk of a dangerous arrhythmia. Soooo I want to do everything possible to minimize her risks. Here is a very good article on seizures & the autonomic nervous system: Epilepsy & the Autonomic Nervous System Thanks you VERY VERY much for your insight and help ... and I apologize if I am not being clear.