Am I really crazy?
By babyangie27
@babyangie27 (5176)
United States
October 12, 2009 9:24pm CST
As many of you know I have a disabled daughter,she has epilepsy,cerebral palsy,developmental delay and only one working kidney. You that have read my discussions also know she has been having lots of seizures.
Well just Friday night she had one and her lips turned blue and I had to give her CPR til the EMS came. We took her to the ER and after 3 hours they said Neuro said to up the meds and sent us home.
Then just tonight I had another huge scare. Around 7 pm I had went to use the bathroom and when I returned I found my daughter standing in the living room having a seizure. Drool was coming out of hr mouth and her mouth was slightly agape. I panicked placed her on the couch and grabbed her clonopin to stop the seizure.
It only lasted one minute but it sent me into yet another panic attack. This makes seizure number 4 in 3 weeks time.
I have had this feeling inside me for quite some time as to why her seizures are happening. And I know I could be in denial or just crazy but hear me out.
My daughter was born not breathing,the revived her and she began to have seizures. They put her on Phenobarbital for 5 months of her life. Since no further seizure activity could be found either physically or on the EEG the removed her from the meds.
One month after we moved in to this trailer(at the age of 3 almost 4) she began to have seizures again. Since then they are getting more frequent and worse at times.
She is on 3 different anti seizure medication and none seem to be doing a dang thing. During the months when I have to shut up the house and run the Central Air or the Heat she seems to have more of them. All of them have been towards the front of the trailer never in the back part. She has had 3 total seizures in a car. Once on school bus on way home and 2 after leaving our house.
Now like I said I have had this nagging feeling and I think it is this trailer. I think something in this trailer is causing her seizures and the recurrence of them to begin with.
Now I know many will say well at the age of 4 seizures are common to start up again,or like the doctor told me tonight"well because we are increasing her dosage this could cause more seizures",or whatever else people have said and you know what I WON'T ACCEPT THAT! I could be in denial as I said or even crazy but something just doesn't add up.
Am I crazy? I wanted to buy this mold testing kit I found online but it cost almost $16 and I don't have it. But what if I am wrong? What if I am right? Anyone have any advice?
6 people like this
20 responses
@Loverbear (4918)
• United States
13 Oct 09
You can spend your whole life going through the "What If's". Even though you don't have the money right now to pay for the mold testing kit, it sounds like you really need to test for molds. After all, there is a lot indicating that there is a high possibility of the existence of mold in, around and under your home. Trust in your instincts, and don't try to second guess yourself.
You are taking a lot out of yourself by worrying about if you are right or wrong. If it is something that can help your little girl, then you need to do it. I don't have much money, but I am willing to help out with purchasing the mold testing kit. I think there are enough myLoters out there that would kick in a buck or two towards something that would help a small child. Using the kit, and even if it comes out negative for mold, it will eliminate a possibility of something that could be causing the seizures and gives you a new road to check. If it comes out positive, then it gives you an answer and then you can start figuring out a way to get rid of the mold and possibly save your daughter's life.
Now, fellow my lotters, how many of you can kick in a buck or two to help get the mold testing kit and help a frantic Mom possibly get her daughter's seizures under control? I can kick in $4!!!
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
Thank you $4 is a start,I don't know how to get more mylotters to kick in as it is against the TOS to out right ask for the money so I can't post a discussion about it.
I can't sleep and I can't think.
I read an article posted by another mylotter on the first page and it talked about mold growing spores in someone's nose and my daughter has had a stuffy nose pretty much the whole time we have lived here.
I know I could just be over thinking everything but somehting inside me SCREAMS something isn't right. I do appreciate your willingness to help us out. I am praying for something to come threw and help me figure this out.
@babyangie27 (5176)
• United States
13 Oct 09
I am going to check out the site here in a second. My husband has asthma too and has been having alot of allergy problems as well. Thanks for the help and for the kindness you are a wonderful person with a huge heart!
@Loverbear (4918)
• United States
13 Oct 09
Go to the site "Wish Upon a Hero". Register there as it is a site for people needing help with financial needs. I am sure you have a PayPal account, and all you need to register for help is your name, need and email on your paypal account.
Let me know if you do this so that I can make the donation...Mold is a serious problem, not only for your daughter but the rest of the house hold. I am fighting mold in my kitchen and have to rip out all the walls in the kitchen and replace them due to mold. I have no options as I have asthma and am terribly allergic to mold.
I can't believe that the MyLot community can't step up and kick in a buck...Hey, with my $4 it only leaves $12 to help out a little girl that is suffering...and this kit may help find the answer to what is causing the seizures...come on and pry open your wallet and help. Heck I am close to broke myself but I can come up with $4 to help this gal out!!!
1 person likes this
@Thoroughrob (11742)
• United States
13 Oct 09
No, you are not crazy. Check with your health department. They may help with the test. They do the lead, but I am not sure about mold. Keep a very detailed diary about what is happening and where. You may be wrong, but you will always wonder if you don't have it checked out. There may be nothing that does make sense, but if you think that is it, don't give up until you are convinced you were wrong. If you don't have a doctor that will listen look for another one. One that can either explain things better to you, or that is listening. We have been through many doctors. They treated my son more like a car than a person, and we have found ones that are for the family and the child.
Just to let you know, I haven't forgotten about calling you. Bryan was home all week with the flu. We were watching him very closely, hoping we did not end up having to take him back to the hospital for more surgery.
1 person likes this
@Thoroughrob (11742)
• United States
13 Oct 09
Thanks so much, I will keep you updated. I just did a search and there is an article I want you to check out. Read the whole thing. Let me know what you think. It may be another way to look at.
http://www.ktvu.com/news/1849083/detail.html
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
I will be praying for Bryan and please keep me updated on him.
I have tried searching the health department online and Michigan really has nothing about mold on there. No rule regulations and such.
I do keep a detailed diary and have spent hours rereading and so far I have come up with no links what so ever.
... @sid556 (30959)
• United States
13 Oct 09
This must be so scary for you. Thankfully I have had no experience with seizures but I don't think you sound crazy at all. Mold can cause all sorts of problems. Of course it could be just coincidence that her seizures got worse after moving into the trailer but maybe not. I can see why you would want to at least check out the possibility. Is there anyway that your daughter could stay at a friend or family members home for a week or so and test your theory?
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
If I had a car in which I could still transport her to school I may be able to stay with my sister. But since I can't do that and she has already missed so much school that is not an option. I don't know what else to do,but I started emailing people today since I do better with that then trying to call someone. I still have to track down an email to my county department though. I have to keep praying that someone out there will listen to me and not just pass me off as some nut.
@babyangie27 (5176)
• United States
13 Oct 09
I am trying to find a way out of this place as we speak. But because our credit is ruined due to being behind on the mortgage to begin with options are running thin.
@webdesignsbyaw (74)
• United States
13 Oct 09
That is really scary. I am so sorry to hear what happened. I too, have had to deal who kids have seizures and I know it can be a very fearful event. It may be the trailer your living in, and espeically the air conditiong. Maybe for your daughters sake, you should save money so you can move out Asap. That's what I would do.
1 person likes this
@lynnemg (4529)
• United States
13 Oct 09
You are not crazy at all, you may be on to something. If she is having more frequent seizures in one specific area of the house, there may be something in that area triggering them. Aside from molds, what kinds of sounds and sights are in that particular area? Is there a lot os electronical equipment in that area? I would look into those things before checking into molds. Think pf common denominators in each of her seizures, even if it means writing things down. Take mental note of what is in the room, etc. From there, then look into molds and such. I would do research on them as much as you can to determine the best way to detect them if they are present.
One thing you should always remember is that you should trust your instincts. God has given us maternal instincts for a reason, to protect our children. If you have the feeling that there is something in your home causing the seizures to worsen, chances are you are right. It is now a matter of finding out what the cause is.
I suggest looking into as much inforamtion you can find on things that may trigger seizures. If your doctor is not giving you answers that you feel comfortable with, talk to another doctor and keep talking to doctors until you find one that listens. I think that you instinctively know that there is more to this than meets the eye, it is just a matter of finding it.
I am still keeping you and your family in my thoughts and prayers.
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
Thank you for the prayers Lynn. She watches TV before bed and only the seizures outside of the home didn't have that common thing.
But I always make sure the TV isn't showing anything flashing or anything like that. Plus during all her EEG she has never shown the strobe light or things like that to be a trigger.
I have a daily log of all her activities and I read it after every seizure and I cna find nothing that links them. I am at my wits end.
@babyangie27 (5176)
• United States
13 Oct 09
It could be but I wonder why now? After 3 years of no activity what so ever for them to start? And the night it started back up again she hadn't watched TV for several hours before the seizure happened. I will look into it though and see what I can find thanks.
@lynnemg (4529)
• United States
13 Oct 09
Just a thought, but I wonder if there is something in her brain that IS triggered by the television, but as a delayed reaction. Just because she isn't looking at flashing lights on the television doesn't mean that something in her brain hasn't been triggered the way a strobe would effect others. There are many times when I watch television right before bed and when I close my eyes, there seems to be these flashes of light in my eyes. I can't explain it other than that, but I also know that my kids experience it too. This happens to us up to an hour after we go to bed and have turned the television off. I don't think that something like that could actually be detected in any test, but she may be able to tell you if it is happening. For that matter, she may be able to explain to you in some way what and how exactly she feels right before each seizure.
This may be something you ahve already thought of yourself, but when I read your response, it immediately popped into my head and I had to write this.
1 person likes this
@olydove (1209)
• United States
13 Oct 09
Hun as thoroughrob said check with the health department they should have a test kit there for molds. Where you were living at before you moved into the trailer were you at the same place for a long time? I ask because the stress of leaving on place to move into another can be a trigger factor in itself.
If it always seems to happen in the front of the house I'm guessing there is more access to light in that area. Are there bright and shiny things? More electronic devices? If you can somehow find someone to come out with an EMF meter and measure the EMF's out there like they do on those ghost investigating shows that would be an excellent thing as well because high EMF levels have been known to cause various problems in people.
You're not crazy at all, the doctors aren't listening and if it all seems to have started after moving into your trailer then definitely there is a reason for it.
Is there any way that you guys can sell the house even if you have to move into an apartment?
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
My mind is a mess olydove and I don't even know who to call or what to say. I am feeling like I am a complete idiot or somehting and afraid they might think that too. I feel like her doctors are just brushing me off about this whole thing.
A friend of mine said she spoke with someone and they suggested maybe a breathing machine at night kind of like what someone with sleep apnea wears to see if that might help. I just don't know what to do anymore. I have to watch her every second. She is right next to me right now just so I can keep a close eye on her,I puled her from school today because I don't even know if she is safe there.
@olydove (1209)
• United States
13 Oct 09
I can understand keeping her home today, after all that was quite a scary experience. The fact that you had to give her CPR scares me too. It's a good thing you know what you're doing though,.. you're a good momma and don't you doubt that for a minute!
I don't know how much difference a breathing machine would make as it's the mold that's in the house and air other than it would give her filtered air to breath. In which case maybe we can somehow find you a good quality air filter to use.
Now when you say you don't know who to call or what to say, do you mean about selling the trailer or about finding someone to come out and check the EMF levels?
Let me know what you need help with sweets you know I'm pretty good at researching so I will help as much as I can that way. In the mean time right now what you need to do is just try to relax. You can't think clearly when your anxiety is up high I know from experience so if there is anything that you have there at home that helps you relax like a good book, a movie, something you need to find it and put it to good use. Is hubby home? Can he help keep an eye on her while you rest a bit?
Listen you've got to take care of you too because if you don't you won't be around long enough to take care of her. If she is ok and breathing fine right now and isn't showing any signs of having a seizure then you can relax a bit.
We need to write down the steps of what it is you want to do. I'm guessing step 1 is get the house tested for mold so..we need to contact as many people as we can to find out how to get that done.
I just found some info for the health department gonna pm you now in yahoo
1 person likes this
@babyangie27 (5176)
• United States
14 Oct 09
Oly you are always a life saver and the best researcher I have ever seen. Sorry in the delay in responding but my anxiety is in high gear again today. I already spoke to you earlier are a few things and I plan to do a discussion shortly about it all.
@XperImenT (117)
• Canada
13 Oct 09
well you can be partly right. often times seizures have an initiating stimulus. something that promotes the start of seizures...so heck i don't see a reason why you can't probe around the house to see what could be a contributing factor to the seizures..
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
I cut a hole in her first original room,I had since moved her to the smaller one thinking maybe the bigness of the other room was causing them. But what I could see in the small hole was nothing at all.
@babyangie27 (5176)
• United States
13 Oct 09
So far I make sure she gets the right amount of sleep,she is in a growth spurt so that could explain it. No infections or anything like that. But I am glad you have a book to look threw.
@Hatley (163776)
• Garden Grove, California
13 Oct 09
hi babyangie who knows, you may have found a cause or at least'
a contributing factor with mold or whatever in your trailor,can
you get another opinion from a different doctor? I don't think
you are crazy at all,you are an extremely worried mom, and that is
just natural.and what is that about the increase dosage causing
more seizures,why I thought that was given to control the seizures? you are right , something just does not add up. If you possibly can I would seek medical advice from a second doctor, as this somehow does not make sense?
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
She goes to U Of M here which is supposed to be the BEST hospital in Michigan,they have all of her history and her one insurance only pays for them and no one else. But I am thinking of making some calls if I can find any since really my mind is a mess as of late.
I agree the meds are suppose to control not cause and this trailer sat here for 3 years before we ever bought it. And the first day we were here there was major water leakage from under the trailer due to the park not even hooking up the pipes and fixing the busted ones.
@pixeltwistr (613)
• United States
14 Oct 09
Sorry to barge in on your discussion but I just had to reply to this one...
A couple years back we lived in a duplex with mold in it an i ended up with pnuemonia so I have done a lot of research on mold and I think you could absolutely be onto something....
I realize your daughter has epilepsy and that is the CAUSE of the seizures but i think there is a high probability that something environmental is triggering her to have more of them...especially since you mentioned that another persons child had seizures in that same park and they stopped after they moved...
I cant copy and paste yet but I found a couple websites for you to look over....
Besides mold there are other things that can cause siezures as well such as lead and copper and murcury...so i definately think you should pursue this....
TELL her doctors what you are thinking and insist that they run some tests on her for lead poisoning and mold exposure etc....they brush you off because they have no respect for people on govt insurance and feel like it is fine to treat them like dirt....but you absolutely have rights!! Only problem is is they wont treat you like you have rights unless you STAND up to them and make them do their jobs...and if they wont go try to find a lawyer and sue for mal practice while you still can because I truely think you are on the right track here and unless you get them to listen to you youre daughter will continue to suffer...
Of course you are aware though that if it does turn out to be something environmental you will probably only be able to fix it by moving and of course that is easier said than done.....
Anyway here are the sites....hope they help..
http://www.freewebs.com/cntmc/healthinformation.htm
http://www.thermalinspections.net/airtesting.html
scroll down just past half way on this one and it shows a chart of childrens reactions to lead...and seizures is one of them...
1 person likes this
@babyangie27 (5176)
• United States
14 Oct 09
Thanks hun I will be on them in the morning. Right now I just got off the phone with my friend and she is pretty depressed so my stress level is threw the roof right now.
I already have a lawyer looking into what happened to her at that hospital at birth so i guess I shouldn't be too surprised they are brushing me off eh? By the way I have missed you and hope you are ok.
@mommyboo (13174)
• United States
14 Oct 09
I don't think you're crazy, no. I am a big advocate of parents knowing what might be the problem and stating clearly what they KNOW or BELIEVE to be true. As a parent myself, sorry but I KNOW my child better than anybody else on this planet. If you aren't me, don't propose you know better than I do, know what I mean? Even health care and medical providers ought to listen to parents, we spend 24/7 with our kids and you see them for 20 minutes at an appointment once or twice a year, perhaps you see them for a couple hours at the ER. Hello, who has had more overall time and who knows more in theory? WE DO.
I would get the mold testing kit or consider other things that she might be reacting to. If it seems to only happen in the trailer, there's a good chance it could definitely be something in the environment there. Increasing dosage COULD cause more seizures but do you think that's a likely reason, or THE likely reason? Or do you think it's just a known side effect and the doctors are saying that because it's a known side effect?
If you know something in your gut, don't let other people sway you. As parents, we are our children's first and BEST protectors.
1 person likes this
@babyangie27 (5176)
• United States
14 Oct 09
I think the doctors are saying that because it is a known side effect,but I am not convinced or will buy that anymore.
I might not need the mold kit it might be something else. I will be updating everyone about what i mean shortly.
@Shar19 (8231)
• United States
13 Oct 09
I don't think you're crazy. I would do the same thing you are - trying to find out what the h*ll is causing all those seizures. If she is given medication to control them then why is she still having them? I think she needs a different doctor's opinion because maybe the medicine she was put on is making everything worse. Also go with your gut feeling. There could be some kind of mold issue or something else contributing to this. I also would wonder if you think it's the trailer why is she having seizures in the car too? In any case, keep searching and testing different ideas, you'll get your answer. Just don't give up.
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
That's what makes me second guess myself,since she has had seizures outside of the home in our car and on the school bus.
I am not sure if my paranoia and anxiety is making me think stuff up or what.
@syankee525 (6261)
• United States
13 Oct 09
well you have to go with your gut feelings but still i would listen to the doctors as well. but if it only happening in one part of the tailor i would check for mold, either inside, under it, mold can cause lots of health issues.
best of luck to your daughter and you too
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
Thank you. I had my husband look under the trailer but the small area he can see shows nothing. But he didn't look inside the air vents themselves,so it could be there. I know I sound crazy and manic but I at a total loss and the doctors aren't caring or listening. I don't believe what the are saying anymore.
@syankee525 (6261)
• United States
13 Oct 09
you can have the vents clean out too, and i would take her to a different doctor then. it wont hurt if you do. follow your heart
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
I am trying to come up with the money now along with send emails out to all that I can think of that will help. I sent one to the EPA of Michigan and I may even contact the local new stations to see if they can't help. There should be a website or people to contact about things like this. Mold can be deadly and to someone with disabilities it should be easier to track down information and also free kits,
@strawberrybaby39 (2086)
• United States
16 Oct 09
I would get your home tested. There might be something in it setting her off. I am sure it is very scary for you to watch her go through all of that. It wouldn't be easy for me either. A friend of mine his 3 year old son goes through them a lot and it is very scary at his age. The doctors say they are getting worse and he might have to have surgery later on,on his brain.
1 person likes this
@babyangie27 (5176)
• United States
16 Oct 09
They talked about surgery for my daughter as well. But hers happen on both sides of the brain,sometimes the right side sometimes the left so the surgery they were thinking of would be of no use.
I am waiting on word back from the health department as to when they are coming out to test my home.
@strawberrybaby39 (2086)
• United States
16 Oct 09
I send my prayers out to your daughter. You and her are going through a lot. That is good they are going to test your home for you. I know my friend has to have surgery on his sons brain but they don't know if his little boy will make it to the age to were he has to have the surgery. God bless you and your daughter.
1 person likes this
@male24 (3)
• Philippines
14 Oct 09
my advice to you in this kind of situation is just have strong faith in GOD because in HIM nothing is impossible and i know all this things happen has a reason an purposes....this was all challenges and trials in our life,,.but in GOD all things is possible....as ive said it to you at first.....i know you can past this trials...just trust me and just always pray in HIM ok...GOD BLESS US ALL!!!!
1 person likes this
@babyangie27 (5176)
• United States
14 Oct 09
I have been praying and I will continue to thank you for the kind words.
@pyewacket (43903)
• United States
13 Oct 09
Nope I certainly don't think your crazy babyangie...there was a big hub-bub about the mobile Fema trailers that were available for people after the Katrina disaster. They were government issued trailers too, but then every person that lived in them for awhile got horribly sick...it was later found out that there was contamination in those trailers. The thing is, these contaminated trailers are still showing up at certain areas of the country and for all you know you might be in one or maybe the manufacturer of your trailer is the same as the Fema ones, and they too might be contaminated...they had formaldehyde contamination which made people sick.
Here's an article about it just fairly recently--please read it. Maybe you should get some kind of health inspector to make tests?? I'm sure there MUST be some agency or organization who could test for free--perhaps contact the Environmental Protection Agency? They must have a local one near you
http://www.epa.gov/
Here's an interesting article about finding dioxin, a toxin in water in the Michigan area
http://www.eurekalert.org/pub_releases/2009-10/uepa-eru100109.php
http://www.naco.org/CountyNewsTemplate.cfm?template=/ContentManagement/ContentDisplay.cfm&ContentID=30442
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
I emailed the person who's email was visible with the second link you provided me. Maybe he can help me as long as he doesn't write me off as some crazy mom.
My trailer is a 1996 so I am unsure what brands or companies made the trailers in question regarding the Fema article. But I will keep my eyes open and try searching online or if you do let me know.
My mind is a mess and I am a mess it's like I can't focus even with my meds it is like I am trying to figure out the hardest puzzle in the world,and in way I guess I am.
@Bluepatch (2476)
• Trinidad And Tobago
13 Oct 09
Maybe if you tried living in a more comfortable place this might not happen this way. It could be all the tension around her.
I know it might not be possible to live elsewhere for you right now so you could also try talking to your daughter in a loving way and getting her to open up her feelings to you more often.
I'm fairly certain the tension in your home could be a cause.
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
My daughter can not express her feelings,she has never been able to. I keep the tension down as much as I can but life is life.
I am not sure what kind of tension you are referring to so maybe you can write back and explain to me a bit more.
I still owe almost $13 grand on this trailer so I can't pay it off and move.
@babyangie27 (5176)
• United States
13 Oct 09
Thanks Dawn. I contacted the EPA here in Michigan via an email so maybe that will help me get some answers. I am also going to contact the local health department and see if that can get me somewhere too.
1 person likes this
@Jennlk84 (4205)
• United States
13 Oct 09
I don't think you're crazy. Now I don't know a lot about this, but I say go with your gut instinct. Maybe take some of your online earnings and purchase the kit? Or keep searching and see if you can maybe find a better deal on one. Check www.amazon.com .
1 person likes this
@babyangie27 (5176)
• United States
13 Oct 09
My next payment is for $10 so I will have to find a way to come up with the rest which right now is pretty hard since my husband tools also got stolen so his work has been slow due to it.
I always try to go with my gut but her seizures have made my mind go wacko.
@forestgold (792)
•
13 Oct 09
I would say, go with your gut instinct.
If you really feel this is causing the seizures, then you need to find out for sure.
Ask you doctor for some advice, and try to get the trailor tested for mould, if you cannot afford a kit, is there not a friend, or member of your family, who could help, because it is important you do it, to find out one way or another.
Keep a diary, of what you are noticing, and do everything you can, to get the trailor tested, no matter what, for y6our own sake, and your daughter's...
1 person likes this
@besthope44 (12123)
• India
6 Oct 10
I understand how you feel, I use to manage anxiety, listening musiq, playing violen and i like chocolates, and i feel i get refreshed after having my chocolates. And best remedy is Meditation, try breathing exercise, it will help you balance and handle anxiety.
