Does anyone have seizures with their MCS? My 15 year old son started having grand mal seizures after a formaldehyde exposure. He's become more and more sensitive to chemicals. Most of the doctors we've seen don't seem to think the two are related. We know they are. I'd love to hear from anyone whose experienced this.

Thanks you.

Hi,

Sorry to hear about your son's MCS. It is a terrible thing to have to deal with at any age but especially so when he is so young.

I myself was diagnosed with chronic fatigue syndrome on my 12th birthday and developed MCS aged 21. Thankfully I have now overcome the MCS (as have others) so please don't listen to anyone telling you it is a permanent thing.

I think you are spot on thinking the MCS and seizures are connected. There is plenty of evidence to suggest this could be the case. Seizures obviously arise from a neurological condition and there are many, many studies finding that MCS is primarily neurological in nature. Have you come across a book titled Chemical Exposures: Low Levels and High Stakes by Nicholas Ashford and Claudia Miller? It is quite technical but discusses the possible mechanisms that cause MCS. One of the leading theories suggests when an MCS sufferer is exposed to chemical triggers their brain reacts in a very similar way to someone having a seizure i.e. with excessive neural activity. This process is called 'kindling' and in MCS it is thought to happen after the brain has already been sensitized to chemical stimuli by events such as acute formaldehyde exposure, as in your son's case.

You may find that if the MCS is successfully treated the seizures become less severe and/or less frequent as well.

For me the keys to recovery were strictly avoiding chemicals, including wearing a carbon filter face mask when around people or outside, and trying to reduce brain activity as much as possible. In my case this involved meditation, relaxation techniques and calming herbs and nutritional supplements but the methods are not important as long as the result is achieved.

If you let me know which country you're in I can help you find a doctor who will be on the same page and should be able to help your son.

Best wishes to you both

You are not alone and your definitely on the right track and NOT crazy...like so many Dr's have thought we are the past 8 months!
This is the story of what happened to our 16 year old daughter after being exposed to formaldehyde gas in her bedroom from a ceiling fan overheating. Mid Jan. 2010 new fan was installed in Jenna's room. The first few months it all seemed fine because the fan was not used that much due to the weather still being cool. April of 2010 Jenna began having a bad rash on her hands and feet and the backs of her legs, sometimes other places but this was where it was most severe. It was tiny raised bumps that were very itchy. She also was having increased mentral problems and excessive bleeding so she had to start medicine for that. In May Jenna started having fatigue, but at the time I just figured it was the end of the school year and she was just ready for summer.This continued even after school was out sometimes she would sleep 16-20 hours a day. Also about this time she started being very irritable and very moody and was just not acting like herself at all. She is normally very cheerful and laughing and joking around. We didn't think much of it other than she's 15 and a girl but it was definitely not her normal mood. This continued as did the rash and fatigue then the week end of July 17-18 we were going to go school clothes shopping in Houston but Jenna got up both days feeling weak and dizzy and vomited a couple of times on Sunday so I thought she just had a stomach virus until July 26 2010 when Jenna had her first round of seizure like activity. We had gotten up early that day to go get her teeth whitened at the dentist because she had gotten her braces of in May and had been wanting to get them whitened before school started and she was really looking forward to having that done.
That morning she also said she felt weak and dizzy and hot like she was going to pass out, she said it felt like it hit her all of the sudden so she made it into the kitchen of our house and was yelling for me to come. My bedroom is right off the kitchen so when I got to her she was laying down on the bench seat shivering violently and then began to hyperventilate for about 15-20 seconds, her eyes and eyelids were twitching back and forth and then she passed out. She was out for about 30-45 seconds maybe longer. I had no idea what was going on but I knew something was definitely NOT right with her and if I had not had the medical experience I have for over 20 years I would have definitely called an ambulance at that point. So I took her pulse, blood pressure, respirations and blood sugar and all this was fine. I also called my husband and told him what was going on. When Jenna was coming around after she was out cold for those few seconds she was swallowing hard and rubbing her fingers together from pinky to thumb, she then was shivering violently again and saying she was cold, so I covered her up. Then after a couple of minutes she was very flushed and red and was burining up and I had to take the covers off of her. This whole times she's semi-conscious but able to mumble a few words. Then she started shivering again, her eyes were twitching/fluttering and she hyperventilated and passed out for a 2nd time.
At this time I called my husband again and he left work to come home so we could take her to the Dr. On the way to the Dr. office she passed out once more and still did all the same signs and symptoms as my husband I and observed her we both thought that this looked like some kind of petite mal seizure, but she had never had anything like this before. We go to our family Dr's office and he looks her over and they do an EKG and check her blood sugar again and he decides she needs to go to the ER and have a CT because she had a mild concusion in April during PE class and he thought maybe it could be residual effects of that. On the way to the ER she had another spell then again right after we got her into the bed in ER room, this one was witnessed by the ER nurse Dennis who also had petite mal seizures in the past from an old concusion. He also agreed that this looked like some type of seizure. While she was out for the 45-60 seconds the nurse did a sternal rub on her and got no response she was totally out.
The ER Dr. ordered a CT, blood work, urinalysis, chest xray, and a spinal tap. which all came back as normal. So then he ordered a portable EEG which also came back as normal. Jenna was released and told to follow up with our family Dr. So we were hoping this was a one time thing but over the next few weeks these episodes started coming more frequently and were more severe. They would come in all I can describe is as "cycles" of seizure like activity where she would feel weak, dizzy, hot, cold, shivering eyes twitching/fluttering, hyperventilating then passing out cold for 45-60 seconds . This whole event would last anywhere from 10-45 minutes and she would have 2-8 cycles of these symptoms, come around somewhat in between, then it would start over. She was having severe fatigue and headaches after these eipsodes and would be wiped out for atleast 3-4 hours. Also sometimes she
would have severe insomnia so she would go from sleeping all the time to not sleeping all night and going to bed at 6 or 7 am.
When school started Aug. 23rd we were keeping our fingers crossed that this would not effect her and it seemed like it was only happening at home and always early in the mornings. On Fri. of the 1st week of school Jenna had her 1st seizure at school. She went thru the cycles of seizure like activity and again would be wiped out afterwards. Sometimes she could go to school in the afternoon but sometimes she felt really bad all day. She was missing alot of school but trying to keep up with her work as she has always been A/B student. After this started happening at school our Dr. called the neurologist in Beaumont and told them that she really needs to get in quicker. So they say her the next week to evaluate her and see if they could figure out what was going on with her.The neurologist said that from looking at her he didn't think it was any kind of seizure and he thought it was stress but decided to do an MRI and see if that showed anything more that the CT wouldn't show but it was also normal so he said she needed to go to another neurologist in Houston, but he did start her on keppra a seizure medicine to see if it would help until she got in over in Houston. During all this time I was reading and searching on the internet for possible causes of these symptoms that
she had never had before and she had never really been sick other than ear infections when she was little. I thought that it would be either partial complex seizures or maybe juvenile myoclonic epilepsy in which the seizures happen shortly after waking so this really fit Jenna's profile of symptoms.
When she saw the neurologist in Houston he said she needed to be admitted to the epilepsy monitoring unit at Herman Hospital for a continuous monitoring video EEG. So Jenna and I were there from Sept. 19-22nd. She was hooked up to an EEG machine the whole time and video monitored. They made her get up early everyday and stay up late each nite so they could do a sleep deprived EEG. On Tues. night they did a strobe light test and immediatly after Jenna had a mild episode but nothing like she had had at home or school. They had a neuropsycologist see her and do apptitude test while she was there also which she scored in the average to above average range. At the end of her stay the team of Dr's who were seeing her said all the test were normal and that all her symptoms were most likely due from stress and she needed to see a neuropsychiatrist. I asked why then did she have mild symptoms from being exposed to the strobe light and they said the body can do strange things. This was their best answer???
At this point I was very upset because I knew there had to be something more wrong with her and I felt like no one was listening to me and that since the neuro. in Beaumont thought it was stress that automatically the Dr's in Houston thought it was stress and just did the test to rule out anything else but that they weren't really trying to "look" for anything else to be the cause of her symptoms either. We didn't know what else to do at this point and they said she didn't need the keppra because there was no abnormal electrical brain activity showing up on her EEG. So we went home with no answers and no help for Jenna. So I continued to search the internet and read about different types of seizure disorders trying to find out what could be happening to my daughter.
After we got home it seemed like the "seizure type activity" was getting worse and worse and Jenna was having increasing headaches and not getting any better at all, steadily getting worse. Sometimes she would be so out of it during these cycles of
symptoms that I was afraid she would stop breathing. She would be breathing so shallow and light that I couldn't tell if she was getting enough air and she would be very pale and look almost life-less. I made my husband get an oxygen monitor so we could keep an eye on her O2 level because it was so scary to see her like that and not be able to help her. I was really afraid she was going to die before they could figure out what was wrong with her, and for the exsperts to be telling us that ALL THIS was from stress was just unfathomable! Like I mentioned before my husband and I both have over 20 years of medical experience, plus the school nurse and others at the school had seen this happen and we all thought "there has to be something more to this!".
At the end of Sept. and the beginning of Oct. Jenna's symptoms were probably at the worst to date. She was having more severe and longer cycles and worse after effects. She began having confusion and memory loss so severe during the hours right after
these episodes that she could not sometimes even remember the names of kids she had gone to school with since kindergarten or even how to get from one class to the next. She would be in a total dazed state and just be looking around like she had never been in this school or even at home sometimes when this would happen she would ask us what things in her room were or she would look at shadows or reflections and be so confused by them it was like her brain was slowing down and she couldn't process the information around her. No one can realize how firghtening this is to a parent to see your child like this and not know why or be able to help them.
Then the 1st week of Oct. she started having these episodes at night which had never happened before. By this time we are petrified and decide to take her to another neurologist in Houston. In mid Oct. Jenna was just not able to go to school anymore, on the days she could go she missed most of the morning, and somedays she made it all day but those were getting rarer by the week so we and the school decided for her to go on homebound. Atleast she would not have to get up as early and we were hoping this would lessen these episodes and she would be able to rest. We were hoping this would lessen the episodes but this wasn't working either. During all this time and the CT's and MRI we also discovered she had a severe sphenoid sinusitis so we were taking her to the ENT Dr. for this and she did 3 rounds of steroid and antibiotics but it wasn't resolving the sinus infection.
On top of all this the ENT decided Jenna was going to need sinus surgery so we scheduled that for Dec. 7 2010.
During all this time I had been noticing this smell only in Jenna's room, it was a fishy weird bad smell. I couldn't for the life of me figure out what it could be or where it could be coming from. I smelled the sink drain, the bath tub drain, and pretty much everything in her room including Jenna trying to see where this smell was coming from. I work 12 hr. shifts so I would REALLY smell it strongly when I'd get home from work and Jenna would be in her room with the door shut. It would sometimes just hit me in the face when I'd open the door. So while I was at work one day I decided I was going to look on the internet and see if I could find anything that might tell me what this weird fishy smell could be. I came across several postings by people who also had this mystery fish smell in particular parts of their house. They finally figured out it was a plug, socket, fixture, etc. overheating and when it over heats it off-gasses chemicals that are in embedded in the plastics, resins, hard rubber, etc. in different products. So then
I found more information saying when it has the "fishy" smell that means there is formaldehyde being released from these resin, plastic, hard rubber item, and the fish smell is a tell-tell sign that it is formaldehyde. I thought that I had something now, maybe a possible reason for Jenna being sick all these months. I knew formaldehyde was not good but I didn't know really anything about it so I started researching formaldehyde exposure symptoms, and seizure/ formaldehyde, any thing I could think of that might lead me to more information to help Jenna. This was in mid Oct. 2010. I even called 2 of the neurologist she had seen and told them I
think she has had formaldehyde exposue and this might be causing all her symptoms they just blew me off and said they didn't think that could be it, they had never heard of formaldehyde doing that. So once again we felt like they just weren't listening or even entertaining the thought that we might be onto something even with the air test being very high they discounted us.
When I started reading all the symptoms that can arise from formaldehyde exposure I was totally blown away! Pretty much every
symptom Jenna had been going thru and experiencing was listed. All the way back from the rash, irritability, insomnia, confusion, seizures, headaches, nausea, fatigue .... ALL of it!!! I knew then this was it, and I had to figure out what to do about it, so we moved her out of her room and even bought her a new matress. During the first 2 weeks she was out of her room she had nausea, vomiting and diarrhea almost everyday but was having less seizure type episodes. We were so happy that it was getting better and so relieved that we finally had found a reason for her to be sick even when all the exsperts said it was "stress". She was starting to feel better and when she did have episodes they were alot milder. After 2 weeks she was ALOT better and stopped having "seizure type activity" we were estatic to say the least! For awhile, I will come back to this later.
We ordered a simple color change air test from the internet and tested her room, the color changed to dark plum which from what we could tell and the legend on the box was about 4-5 times over the normal limit for a home environment. This was a total shock to say the least and for this smell to be only in her room we knew it had to be something in there doing this. So we started trying to narrow down by process of elimination what could be emitting and off-gassing the formaldehyde. We even had a friend come over and sniff around her room and he smelled the fish smell also. He was the one who actually thought to reach up and touch the ceiling fan which was more of a modern type and had an exposed motor instead of a decorative cover on it. The fan was extremely hot to the touch so we figured it must be that. After researching the fan and the manufactuer I found out that pretty much all of the ceiling fans sold in the USA are manufactured in China and just distributed by USA companies with USA names on it. There are
actually only 7 or 8 companies in China that actually make the fans or fan components for the whole USA. Some of the ceiling
fans even have a label that states that they are CARB compliant for phase 2 formaldehyde emissions, this is a new law that is effective in California now but will be in effect for all products made in or imported into the USA. Unfortunatly Jenna's fan was not one of the CARB compliant fans.
We then ordered another more sophisticated formaldehyde air test that is actually sent of to a lab and is testing giving an actual number readout. We recieved the test in the mail and this time we only had the fan going in her room with the door shut and placed the test in her room for 36 hours with only the ceiling fan running. The instructions said test time 24-48 hours so we split the difference at 36 hours. When it was done we packaged up the test disc and mailed it off immediately.
When the test result was email to us it showed that Jenna's room was .072 parts per million (ppm). A normal indoor residential range is .01-.03 ppm so Jenna's room was 2.4 to 7.2 times OVER the normal residential limit as defined by the CDC during the FEMA trailer incidents where residents where exposed to formaldehyde and almost exceeds the time weighted average (TWA)
for workers who know that they are working with and exposed to formaldehyde defined by the United Stated Dept. of Labor
which defines the "action level" as .5 ppm total spread over an 8 hour work day which is .062 ppm per hour. Jenna was exposed to .072 ppm around 20 hours day especially during the summer when she was home alot all day closed up in her room all day so she was in her room basically 3 times more and getting OVER the "occupational" dose of formaldehyde EVERYDAY ALL DAY!
This was totally shocking and a relief all at the same time, atleast we knew what it was what the level was and removed the fan and got Jenna out of that room so she could get well. Like I said after 2 weeks she was seizure free and feeling better this was the beginning of Nov. 2010.
On Dec. 7 2010 Jenna had sphenoid sinus surgery which went well, the Dr. did a biopsy of the material they extracted which showed a high eosonophil count which means severe inflammation, but they cleaned it all out and she was feeling fine after the surgery. Then we went to the ENT for Jenna's 1 week follow up visit in which the Dr. sprayed the inside of her nose with xylocaine spray to deaden her nose so he could clean it out. Before we could even get out of the ENT's office Jenna has a seizure in the hall. It was short and mild, so they let her lay down for about 15-20 mins and she seemed fine. The next day Jenna was fine but the day after that she had another seizure type episode. So I decided to look into what could have triggered it, so I looked at the ingredients of the xylocaine spray and found a medical article saying that the PEG 400 used in many pharmacutical grade products
contains "exerpients" meaning filler ingredients that have traces of formaldehyde in them and that actually the longer these exerpients are in the containers exposed to heat, humidity, and light the more it oxidizes and the higher the formaldehyde levels can rise in these "pharmacutical grade" products on their own sitting on the shelf! This was just unbelievable to me but explained how she would have a reaction when she was sprayed with the xylocaine.
Once again she didn't have any seizures for about a month so we decided to let her go back to school after the Christmas break. The first week she was back in school she had a "seizure type episode" after this we started asking her what she has done differently in the past day or so. She had a sore throat the 2nd day she was back in school so she was eating alot of cherry cough drops so I googled cough drops, formaldehyde and sure enough cough drops are listed on list of products that contain traces of formaldehyde! They have benzaldehyde which is used for the cherry flavoring in any cherry flavored products. Any thing with the aldehyde suffix will break down into formaldehyde in the body because formaldehyde is the "simplest aldehyde" when the chemicals break down which is also beyond belief that these chemicals are used in foods and medicines. The next week of school she had more episodes due to perfume being sprayed in class and also after eating fruit loops cereal and starburst candies which both have cherry flavoring. Again we thought OK we know what caused it and we can ask the school to try and spread the word and control this happening atleast in Jenna's class rooms and with her class mates who she's in close contact with. The school has been great and working with us alot on this, and also Jenna knows to check the lables and not eat anything cherry flavored.
This seemed to be helping somewhat but there was still instances where things would get sprayed or cleaning products used in bathrooms or teachers using air freshener type devices in the class rooms etc. all these products now seemed to be triggering the " seizures" even if she wasn't directly in the room where the chemical is she could just walk down the hall way and pass the
open door of the class room where a chemical is used or sprayed and it will effect her now. She also had an episode at HEB grocery store within about 10 min after we walked past the cleaning products isle. We had just got to the check out counter when she started feeling bad and I was able to help her lay down on the floor before she had the "seizure" and passed out.
Unfortunatly these incidence became worse and more frequent during Jan. and Feb. 2011
She has never had any of these type of problems before or any kind of allergies to anything. There are so many many products that have forms of formaldehyde and some are listed under various different "names" and we have defintely been trying to educate ourselves on what is in the products we use everyday on our bodies and in our home and school. So we were trying to avoid any kinds new products or chemicals being used by or around Jenna so that she would be able to stay in school. And like I said the school was really trying to work with us to help her. We tried this thru all of Jan. and Feb of 2011 but on Feb. 24th Jenna had a very severe cycle of "seizures" during which the school nurse called my husband and said this was the worst she had seen Jenna and that he needed to get to the school right away! So Scott went to the school and when he saw her he knew that she needed more
help than he could give her this time so he called the ambulance company he works for to pick her up. This time was more like tonic clonic jerking seizures and she was having cycles further apart, she had about 3 before the ambulance got there and 3 more in the ambulance on the way to the ER. The paramedic gave her 2mg of valium, but she had another seizure so he gave her 2mg more, and still another seizure, so he gave her 2mg more, for a total of 6mg befor the seizure type episodes stopped. That day she said she smelled something floral in the hall way and later her friend said a teacher had a 'scentcy" going in her room in that hall way and that it was a really strong floral smell.
After this severe episode we decided that it was just too dangerous for her to go to school and her school principal said that the science classes we about to start biology and chemistry experiments and that it would definitely not be a good idea for her to be there because with the was the schools A/C system is set up that the fumes from these class rooms would basically be circulated through out the entire main building of the school where all the main class rooms are connected. The office ladies also said that they could smell it in the office areas and that it gives them headaches. So even though we hate for her to be out of school and
be stuck at home right now its the only solution to keep her safe and healthy until we can figure out a solution or treatment for this problem.
I have just recently found a clinic in Dallas who specializes in treatment of chemical sensitivities and has dealt with patients from
Gulf War Vetrans who were chemical exposure victims, FEMA trailer victims, and 1st responder victims of 9-11 who were also exposed to chemicals and suffered late effects. When I called there it felt like the 1st time I was actually heard and someone who has seen this before and knows about it was listening to me. After all my reading and researching I have found alot of info. about others who have been exposed to formaldehyde or other chemicals and had similar symptoms. One was a science teacher who began having seizures after dealing with the specimens preserved in formaldehyde. I also talked to a lady in our town whos son
had his first seizure at age 27 while working for a local funeral home where he was exposed to formaldehyde, she said he hasn't had a seizure in a long time but he doesn't work at the funeral home anymore either. So this is not unheard of in the medical community but it is definitely not a "known problem" to most physicians. Our family Dr. says 'yes I can see that chemicals can be a problem for some people but I don't know what to do to help her", and one ER Dr. that I work with has seen patients who worked as nail techs become sick from the chemicals they work with but he doesn't have a private office any longer atleast he has listened to me and told me that I am on the right track just keep going until I find the right help for her.
Also in all of the reading and research I have done on formaldehyde and seizures it says that there are 6-8 chemicals including formaldehyde that are incitants, once you are exposed to this certain group of chemicals it can trigger all of these other chemical sensitivities in some suceptible individuals. That is makes what is called "limbic kindling" occur and it affects the olfactory nerve and the limbic system which are "wired" into the brain. This kindling makes certain people more and more sensitive to lower and lower doses of these certain chemicals down to minute parts per billion doses where their seizures happen easier with each subsequent exposure. This is what I believe has happened to Jenna and now we are going to do all that we can to help her and to get her back to a normal life that a 16 year old girl should have. Right now we don't know what will happen in the future or when and if she will be totally back to normal but we are definitely not going to stop until we are satisfied that she will have the quality of life she deserves. We have have learned more about formaldehyde and chemical sensitivities and seizures than I ever wanted to know in a lifetime but we are commited to helping our daughter as well as other children and adults who may not even know why they are sick wether it be from a defective product or just products in general that our brought into our country with sub-standard materials or practices that make these products unsafe.