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Post by flutterby on Apr 14, 2009 15:23:37 GMT -5
Last night Matthew fell off of his chair and was unresponsive for about six minutes. I called the paramedics right away; he was still breathing but was limp with his eyes rolling back for as I said about six minutes. When he finally came to he was very disoriented and crying not knowing what had happened. They are thinking that he had a seizure, but I am wondering if he could have been lacking in some nutrient that HFIers don't get which may have caused him to pass out. They did not run any blood tests or give an IV which looking back on it this morning I am thinking I should have pushed for. Has anyone else ever dealt with a similar situation?
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Post by Tammy on Apr 14, 2009 23:08:27 GMT -5
Regina has never passed out, but she did have a seizure once. She was very small, and found her brother's halloween bag. We found an empty Kit Kat wrapper. She had a full blown seizure. The only one she ever had.
I think I would let them check the seizure idea, only to rule it out if for no other reason. That's not something that you want to happen again.
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Post by charlie on Apr 15, 2009 15:34:57 GMT -5
That is so weird, was looking for somewhere to post about this today. Megs passed out on Monday, she has had "blank " episodes a number of times for years and had an EEG for petit mal which was negative but she is often zoned out at school. She has only had a couple of bad ones but on Monday she stood in bathroom in afternoon and went cross eyed and then passed out falling backwards and hit head on door. She lay there confused for five minutes and then was very quiet and pale for an hour.
If I hadn't been at my mums 2 hours from home I think I would have called an ambulance as I am so fed up with not getting answers about this but I didn't want to get stuck in wrong hospital system. Now what caused it I don't know, but she had had lots of "blank" moments all weekend but I can't think why they were particularly bad this weekend but I was trying a new cereal of cornflakes with corn and rice malt extract, could the corn have been the trigger. Don't know but seeing pediatrician on thurs so will ask again.
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millan
Junior Member
Posts: 79
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Post by millan on Apr 16, 2009 3:40:14 GMT -5
I can remember passing out (for no apparent reason) once, when I was a kid.
I can also remember a couple of times I've been dizzy, but after sitting down it went away after a while.
But I've always thought this was due to my low blood-preassure, which I've had all my life (not scary low, but always on the low side), so I don't know if sugar can have been a contributing factor.
Sorry I can't be of any more help.
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Post by meaniejean on Apr 16, 2009 10:30:25 GMT -5
Charlie and Flutterby -
That must have been so scary for you guys. Hope the kids are both recovering well. Rice malt extract seems suspicious to me - was it made with brown rice?
I also used to pass out as a child. I still get the feeling sometimes now that I am going to pass out - see stars, then I see nothing but white for a minute, body starts to tremble a little and I need to hold onto something. Like Millan, I have always contributed this to low blood pressure. I now only get these spells when I have fructose ...
On a separate note - I have been researching seizures as Sawyer has been having some weird movements since around Christmas time - has had 6 separate episodes of turning his head and crunching it down to left shoulder, shoulder comes up, hand goes to chest and eyes look off to side - then he does this weird little laugh or cry - does this movement 2-4 times in a row - episodes come every few weeks or so. He used to do some weird stuff when he was very little also, but not quite as obvious as what is going on now. Definitely seems seizure-ish and I just found a video online with a little girl who does the same thing and her diagnosis was epilepsy. So, we will be discussing this at next ped appt. Now I am going to be keeping a journal to see if it might be related to fructose.
Wow - can't believe we are dealing with this at the same time. So strange. I hope you guys find some answers - if I learn anything I'll let you know.
Still waiting for our genetic test results ...
Hugs,
Sandra
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Post by colormist on Apr 16, 2009 13:29:08 GMT -5
"I also used to pass out as a child. I still get the feeling sometimes now that I am going to pass out - see stars, then I see nothing but white for a minute, body starts to tremble a little and I need to hold onto something. Like Millan, I have always contributed this to low blood pressure. I now only get these spells when I have fructose ..."
Now that Sandra spelled it out for me, yup, happened to me too. Stars, then eye sight would narrow down to a small point in the distance. These have happened in the past few years--not since I've went on the HFI diet though (I don't think). I usually start to lose my balance and grab onto something until it's over. Sight tends to come back in a couple seconds, but it's scary.
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Post by charlie on Apr 16, 2009 13:53:06 GMT -5
Hmm, that does sound like what happens to Megs, its hard because she is still too young to say how she feels in time, had long chat with pediatrician today about it and she still thinks something else is going on as regards glucose or blood sugar but maybe I've got it wrong and it is all related.
Don't know, such a guessing game with it all.
All I know is Megs blanks have got worse since starting glucose in small amounts and in as pure a form as I can find it. She can live without glucose I suppose but it is trying to find enough to keep her energy levels up to lead as normal a life as possible. maybe will just stick to gallons of milk.
Sandra, what you described with Sawyer does sound like a "tic" type of reaction which is an involuntary repetitive movement. Hope you manage to get some answers. Thanks for the hugs, I really needed them, I wasn't too stressed I thought about her passing out but I think I was holding myself together for the ped appointment today cos now we have seen her I feel shaky and sick. Hey ho, the joys of being an HFI mum. Thanks everyone for your help.
Hugs back to all]
Charlie
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Post by flutterby on Apr 17, 2009 15:36:09 GMT -5
Wow, thank you everyone. Hearing that so many are going through a similar situation makes me think that it is not a pure seizure problem. We have seen a neurologist and he wants to do a sleep deprived EEG on the 29th. From there he'll decide on CAT scans, MRIs, etc... Of course hopefully this will just be a one time episode and we won't see it again. It helps so much to have others on here who know where we're coming from. So much thanks to Fred!!!
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Post by tatyanasmom on Apr 18, 2009 11:18:51 GMT -5
Hello. Tatyana has these episodes were she feels dizzy, light headed ,sick to stomach like she is going to pass out. She will sit down and still feel like she is going to pass out. does anyone ever check their blood sugar? I think it might be cause her blood sugar is low. should I get a meter and check it when she feels so sick like that? I don't know much about HFI yet and so far not much help from doctor. She does get this quite often since we were in the hospital other wise it was farther in between episodes before that. any ideas?
heidi
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CK
Junior Member
Posts: 95
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Post by CK on Apr 19, 2009 21:37:07 GMT -5
Same thing happens to me when I am hypoglycemic- I get very weak, shaky, nauseous, etc. I carry around Dex4 Glucose tabs. When I accidently get a titch of fructose, I make sure I take a Glutcose tab and some crackers before bed so I don't have terrible nightsweats, nightmares, etc. It helps so I don't have a bad blood sugar day the next day too.
I used to have more troubles with blacking out, dizziness and very low blood pressure, but it is getting better now.
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lisa
Full Member
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Post by lisa on Apr 20, 2009 23:12:47 GMT -5
Nate used to pass out/fall asleep. Typically just before that he would demand food and within a minute he would be out unless he got something. Since his diet has been regulated and he eats every couple of hours, he has not had a problem with it. I carry Smarties in my purse and car judt in case. I think he may have had a siezure once. It was after a long day of heat, exercise, and not nearly enough food/drink. I never did check it further though and it has not happened again.
I have hypoglycemic reactions similar to what Colleayn was describing but am not fructose intolerant. It has happened ever since I got pregnant with my first child. I usually need protein though to make it go away and avoid a nasty headache.
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Post by ywilbur on Jun 3, 2009 8:29:54 GMT -5
I used to blank out as a kid. My parents thought I had some kind of hearing loss and would have me tested over and over again by audiologists. When I was ~8 I remember sitting in MD office listening to my mom tell the MD how I just didn't hear at all at times and I remember thinking 'no, it's not that I don't hear it's that I go away'. But I was too shy to speak up. Anyway I finally had one in the MD office one day when I was 12 and he immediately dx me with petit mal. Ekg won't show anything unless child has a seizure during the test but because my sister had Grand mal epilepsy (falling down and shaking violently) from birth so they were quick to dx me with petit mals. The last one I recall having was when I was 19 and doing my senior thesis in college (lots of stress and poor eating). I wonder if there is an HFI connection though. I've passed out, got incredibly dizzy to point of passing out, etc...whenever I tried to eat fruit (before knew of my dx). I don't think there was always a fruit connection though---I could 'make' myself have one by breathing a certain way while staring into space (when taking an EKG they asked me if I could make one happen and I did---my sister could do the same thing), and some visual repetitive movements tended to set them off (and I have aversion to looking at these things to this day) the movement of escalators is one. the pattern of the escalator moving makes me scared I'll have a seizure but I can ride the escalator as long as don't look at floor.
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Post by flutterby on Jun 15, 2009 19:51:30 GMT -5
So Matthew's EEG came back normal, but as someone else was explaining he would have had to be having seizure activity at the time which he wasn't. Then they said that they would just have to wait and see if there was any more seizure activity.
About a month ago while we were down in Disneyland he had another seizure but this time it was a clear-cut petit-mal. We are now waiting for a third one before anymore tests or medication are done.
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Post by charlie on Jun 16, 2009 14:48:39 GMT -5
Megans first EEG came back normal but she was on a good roll when she had it. We are seeing someone on Friday so I'm giving her the non fructose things that I think may be triggering her before we go in the hope that she may be reacting at the time of testing. I seem to remember Fred mentioned that when he had anEEG and fructose challenge it made interesting reading.
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Post by sherri on Aug 18, 2009 9:57:08 GMT -5
I too have had many epidodes of weakness and dizziness. I usually sit down, lay down or hold on to something. I actually passed out last month while going to change the baby! we were both ok. She had landed on top of me as I fell onto the carpeted floor. My 6 year old heard us and came to the bedroom,she talked to me and then went and got our neighbor. Very scary! I also suffer from low blood pressure and pulse too! I have always been told that it is ear or sinus infections causing these episodes and I thought they were nuts!i also feel sick when watching certain things!
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lisa
Full Member
Posts: 215
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Post by lisa on Aug 23, 2009 10:03:59 GMT -5
Good that your daughter knew what to do!
Nate used to get ear and sinus infections quite a lot before diet adjustment and does not now. With his first set of tubes (1 yr old) they said he had approx. 30% hearing beforehand. I do wonder if the fructose and ear/sinus symptoms are related. Someone posted something about that on the board a while back, but I don't remember where.
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Post by sherri on Aug 28, 2009 8:42:39 GMT -5
Help!The past two days have been some of the worst i've ever had! What started out normal soon became quitte scary . I took my daughter to a dr appt. Wed. by the time I got the kids back in the car something just didnt feel right. I had eaten a bowl of oatmeal maybe one hour before.As I started my drive home my vision started closing in , I could feel my hands and feet swelling and my stomach bloating. I started to get very sweaty and almost panicky feeling. I pulled over and grabbed sweetarts from my bag and started eating them I also started eating crackers and chicken that I had brought along. I sat in the parking lot for almost 30 min before feeling not great but well enough to drive home. By the time I got home I felt aweful! I put the tv and games on for my three year old son and took my 6 monthold daughter to the bed where I breastfed her and got her to sleep. I literally had to put one foot one the floor as I laid down to stop the dizziness! This lasted thru the day and into the night where i felt better but weak! Thursday I had tons of energy as if nothing had happened. I ran errands I made meals,then I went to the bus stop to pick up my daughter(6). On the way there I Blacked out without any warning this time and fell to the pavement . I ripped up my knees and arms but otherwise I seemed fine. I was helped up and continued on my way to the bus stop. Although battered and bruised I felt ok! I got back to the house and had a couple dizzy spells but otherwise non eventful. I did eat, all safe foods about 10 min before I walked to the bus stop! I dont know what is going on! I have been really watching what I eat the past 2 weeks really paying close attention not to eat any forms of sugar and I am now wondering if these raections I am having are related or maybe in a twisted way like a form of withdrawl! Since mny of the things I had been eating and thought were safe were actually not!
I would sure appreciate any feedback!
Sherri
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Post by colormist on Aug 28, 2009 11:14:43 GMT -5
Definitely go to the doctor. It might not be HFI related.
In addition, check all the labels on ANYTHING you ate in the past few days. It might be a hidden sugar. Something you can't taste but is really kicking your butt. I had a severe reaction with soy (no swelling or tunnel vision, but extreme nausea and sleepiness).
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Post by colormist on Aug 28, 2009 11:49:40 GMT -5
If you end up at the ER, take HFI safe food with you. Who knows how long you'll be stuck there.
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Post by sherri on Sept 3, 2009 9:39:24 GMT -5
Hello! I am back after a long week at the hospital! They did all sorts of fun tests including blood and most internal organs. They also checked sugars, adrenal,thyroid etc. I ended up with a heart rate in the 30s and 40s which was causing these episodes but they still cannot explain why! The heart iteself looks great no defects or abnormalities or blockages , jus slow. I had heart surgery on Tuesday where they put in a pacemaker! I am now at how and doing much better, just sore and weak! Thanks for the input and the concern.
Colormist~ do you avoid all soy including soybean oils? I have been testing things out and some of the things I eat have soybean oil and I wonder if that is safe or not! Thanks!
Blessings on your day!
Sherri
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