Quick question from a newbie

[lilmonkiesmama]

First off I am glad I found this forum :) and second, I won't go into detail about everything right yet lol. (it's long and confusing)

Anyhow, I had meningitis when I was 5 months pregnant and was in the hospital for about a week. When I was 8 months pregnant they thought I had it again, luckily I didn't, but I had blood in my spinal fluid. They said it wasn't fresh blood from spinal taps done, but it was old blood (but not from spinal taps when I had meningitis) they thought it was an anyerism (sp). They did an arterialgram (sp) and didn't find any bleeding.

When I was in labor I had a high fever and his heart rate dropped, after he was born he was in the hospital for a couple of extra days bc his white blood count was low. Now I know the blood in my spinal fluid was only on my end, but wouldn't the meningitis affect him? He has been diagnosed with epilepsy because he has these weird episodes of severe head pain, among other things. Doctors always ask if he has had any brain injuries or infections and start naming them, I always make sure to tell them I had meningitis when I was pregnant. They don't ever seem to care about this, so I am wondering...would it NOT have affected him at all?

He is 7 by the way, and there is no seizure disorder in the family history. This popped up out of nowhere. I suffer from migraines, as does he at times, but they have ruled out migraines during these episodes of pain. He is on Trileptal right now and this is the 4th time they have upped the dose. It works for about 2 months, then it is back to the way it was and the attacks and episodes are worse. They upped it again today to a total of 1200mg because lastnight he had 6 of these "headaches". They were coming an hour and from 5:30-10:45 he had 6 of them. Luckily one was in front of the ER doctor. This is also the 3rd medicine he has been on.

I just think they think I am crazy sometimes for telling them that I had meningitis when I was pregnant :confused:

So in short lol, would me having meningitis affect him or possibly be the reason for these problems with his head? He has had 2 abnormal eegs and they have referred him to an opthamologist bc he has been complaining that his eyes get "stuck" and that he is dizzy behind his eyes and sees double. They mentioned a neuro-opthamologist, but this was all done today.

Thanks in advance and sorry to ramble
Nicole

[welsh]

Hi Nicole and welcome to the site hun. May I ask you exactly what type and strain of meningitis you had when you were pregnant with your son??? If youd rather not reply here on the open forum then please feel free to send me a private message,as I too had menigitis whilst pregnant which in fact resulted in my daughters premature birth and lifelong disabilities. So yes it can and DOES affect the babies in the womb,so please Nicole keep fighting for your son and DONT BE FOBBED OFF BY NO ONE!!!! Look foward to chatting some more,take care Love Demi aka welsh

[Naominjw]

My younger daughter has problems. I had Chicken pox while pregnant with her. Literature I read now says that even our own body's immune system may be "to blame" for affecting them. I guess it all lies in "inflammation."

I am so glad you are listening to your son. So many doctors blew off my daughter's numerous complaints (including vision) as "mental" or "in her head." It wasn't... but getting doctors to listen and run tests and DO something about it was a long and arduous road. Not sure if any of the links info at this site can help you, but just in case... http://www.ItsNotMental.com

[lilmonkiesmama]

I believe it was viral and never grew bacteria. I worked at a repo place outside and I had had a headache all day. I took tylenol, but nothing was working. I couldn't even eat bc the pain was so bad. My sister got me something at walmart and I tried to eat, but it still hurt so I went home and went to bed. I was staying with my parents at the time and my mom called the OB and was telling her everything. She told me to take benadryl that it sounded like a migraine. I took the benadryl and it didn't touch it. The pain just kept getting worse.

We decided to go to the er since this was going on about 8 hours of pain. The way there I became sick and kept throwing up while I was there. I think it was from the pain hurting so bad. Well they did nothing in the beginning, finally a nurse felt bad that I was setting in the waiting room screaming in pain and put me in a dark room. There had been a gunshot wound come in so it was taking even longer, they thought it was heat stroke at first, then just a migraine, then they thought I was playing up the pain.

They did cat scans and mri's thinking it was my sinus', but of course it wasn't. The doctor finally was like well all I know to do is a spinal tap, it won't be anything, but that is all I can suggest. I agreed to anything to get the pain to stop so they finally realized I wasn't lying. They did the spinal tap and he said well that looks good, the fluid and everything is clear, but I will send it off and see. The ONLY symptom I had was severe pain in my head and then the throwing up.

They had talked about meningitis, but with no fever, no neck stiffness and the headache hitting me out of nowhere they said there was no way. About an hour later he came in and told my mom to move the car, I had meningitis and they needed to get me upstairs right away. From that point on I remember laying in a bed for a week refusing pain medicine bc I didn't think taking loritab was ok while pregnant.

He kept asking if anyone had been out of the country because he couldn't understand where I would get this and for it to hit me so hard. The only thing he could think of is where my sister went to Mexico and had been diagnosed with a "stomach infection" while down there. She had just come back about a week before all this happened. They said I was lucky it did hit me so fast and so bad, bc they caught it very very very early on. I remember waking up on about the 3rd day and thinking I was dead. All I saw was white coats, there was about 12 of them standing around me and leaning over me. Everyone had my charts and there wasn't enough standing room for everyone crowding around.

I heard them talking about how to look at the sample and how it looked perfect, it was clear as could be, but then look at the results blah blah blah. Needless to say I kinda freaked out lol. The nurse came in and saw me and informed me that I could refuse having all the doctor around. I did real quick, I was still in pain and didn't feel like being the guinea pig! The week was up and they said I could go home because nothing was growing yet.

So I went home, I just can't help, but think maybe this has something to do with what my son is going through. I mean everything I ate or drank or took, went to and affected him so why wouldn't meningitis and the medicine they gave me?

I swear, sometimes I think they think I am a hypochondriac (sp) or that I have Münchausen syndrome by proxy :rolleyes: I know it all sounds weird what he does and tells me, but I know he isn't faking it. That is why I was SO glad one finally happened in front of a medical professional, actually 2 counting the nurse lol.

Many people have told me to look into disability for him, bc he misses so much school from the headaches, and it is hard for me to work outside of the home bc of it. I just don't know where to begin or if he would even qualify :confused:

Hi Nicole and welcome to the site hun. May I ask you exactly what type and strain of meningitis you had when you were pregnant with your son??? If youd rather not reply here on the open forum then please feel free to send me a private message,as I too had menigitis whilst pregnant which in fact resulted in my daughters premature birth and lifelong disabilities. So yes it can and DOES affect the babies in the womb,so please Nicole keep fighting for your son and DONT BE FOBBED OFF BY NO ONE!!!! Look foward to chatting some more,take care Love Demi aka welsh

[lilmonkiesmama]

My younger daughter has problems. I had Chicken pox while pregnant with her. Literature I read now says that even our own body's immune system may be "to blame" for affecting them. I guess it all lies in "inflammation."

I am so glad you are listening to your son. So many doctors blew off my daughter's numerous complaints (including vision) as "mental" or "in her head." It wasn't... but getting doctors to listen and run tests and DO something about it was a long and arduous road. Not sure if any of the links info at this site can help you, but just in case... http://www.ItsNotMental.com

Yeah, I swear they think I am crazy. I have yet to to be able to get him on tape having his headache attack, which they want me to do :rolleyes: Back in May he had some weird thing pop up where he had pain going through his entire body and he couldn't bend his legs. He physically could not walk bc it hurt so bad. They thought it was rheumatic fever bc he had just gotten over strep, but at first they didn't believe me. I finally got him on tape screaming in pain and me getting him to try to bend his leg.

When I took him back to the doctor (we had been once and they thought I was crazy) I told them you WILL do something to find out what is wrong and here is the proof if you don't believe me! They didn't need the tape, bc this time when they touched his leg he screamed in pain. I do have one seizure on tape where he was staring off and making weird noises with his mouth, but as I said, have yet to be able to get the headache on tape. I either don't have my camera or it is an abnormal episode so the last thing I am thinking is getting the camera.

I know it all sounds weird, but he doesn't like medicine and I don't like giving him medicine. So the last thing I would do is make it seem worse ya know, it just kills me watching him scream in pain and there is absolutely nothing I can do. He doesn't want anyone touching him while it is happening so I just literally have to stand there and watch. :(

I'm just want to find something to help, we can't keep upping his medicine and having it work for 2 months before upping it again. Pretty soon there won't be room to up it anymore.

Thanks all for listening, half the time I feel like I am alone in this and nobody understands.