How the heck do they diagnose SPS?

[RockerMama]

After a weekend full of research, I am fairly sure that my daughter is having the simple partial seizures. But, as you might have seen from my previous posts, we are getting no where with the Dr. The neuro totally dismissed everything, and said the eeg was normal, that was that. The eeg was a sleep deprivation one, basically she was hooked up for 30 minutes(strobe light, heavy breathing, then 20 minutes sleep).

I met with my daughter's pediatrician today. She was nice, listened to everything, and seems to agree that it is more than "typical" stuff. She pulled me out of the room to ask me if I thought she could be faking for the attention(100% NOT!), if there was a chance she was being abused(100% NOT), and recommended that she see a psychologist(there is a history of mild mental illnesses in my family). I agreed, not because I thought it would help, but because it isn't going to hurt, and it will at least get them off of that.

I was reading online, and it said that normal eegs happen with simple partial seizures. The Dr wants us to monitor my daughter's "episodes" and keep track of everything for a few weeks, and then she will try to get her an extended (24hours+) eeg. I just can't believe after reading more about the SPS how to the T her symptoms are, and how quickly the neuro dismissed everything!

 

[donnajane]

Your daughter sounds similar to my son. His Paed is pretty sure he is having Partial Seizures but at this stage Nureo isn't saying much other than not a "nasty form of epilepsy" due to his age. When his paed watched his footage she sat their watching each event going partial, partial, shudder syndrome, partial, etc for nearly all of his footage. It was a bit confronting. Good luck with finding a Dr to help you as for us I am finding it hard to get many answers but then maybe I am asking for a bit much given my sons age.
Donnajane

 

[Wobblez]

Hi RockerMama, welcome to the forums. I'm sure you'll find some good info and support here =) Good on you for being so informed and proactive, your daughter is a lucky girl =)

I have a full childhood history of epileptic seizures, from the small partials right up to the grand mals or tonic-clonics as they are now known (unconscious and convulsing). I was medicated for 15 years and said to have "grown out of it" which is fairly common. Anyway 10 years later I begin having the same old symptoms, auras and sensations. I can tell you now that you don't forget that seizure feeling that comes over you. Anyway 2 years later and several hospital visits i'm still getting it under control. My problem is that the doctor's agree there is epilepsy there, but it sounds like there is also a secondary issue, such as vertigo. They are both similar in symptomology and this makes the diagnosis hard.

From what I can gather, diagnosis is less important than treatment. Treatment is very trial and error but it often leads to a diagnosis when you see the difference the right medication can make. It can take about 3 weeks for medication to take full effect and longer to settle down. You may also have to try several different medications and levels before you find the right balance for your daughter.

My Neurologist told me the first Neuro I saw (and despised) was wrong to dismiss epilepsy just because the 24hour EEG came back clear. He said they do EEG's as a matter of protocol but they don't expect to find anything with simple/complex partials because it is so hit and miss. The literature states only 40% of simple partials are detected with EEGs. Many seizures occur deep within the brain and are hard to detect. With some types of epilepsy, you need to be having a seizure while the EEG is in progress. I think more serious forms can be detected by damaged brain tissue and the use of CAT/PET scans but i'm not sure of this.

Often, as in my case, a Neuro will make a clinical diagnosis from the parent's description, diarising of symptomology and sufferer's response to medication. It's worth keeping any eye-witness descriptions, footage or questions on possible patterns that you've noticed. Think diet, hormones, fatigue, lack of sleep, excitement/stress levels etc. My mum was a huge help in my diagnosis because she had witnessed my seizures for years. She also knew my fainting v's seizures and when I constantly felt patronized, doubted or unheard, she reminded me that she could see there was something not right. I'm still working on getting my epilepsy sorted out but having a decent doctor is half the battle.

Good idea taking the Psychologist route. It's well worth ruling it out because it gets you one step further down the "please take this seriously" path. As a psych student, I can also say that your daughter doesn't have to be "faking it" for the therapy to assist her. It can be unconscious stress that is manifesting (psychosomatic). It doesn't have to be abuse, even just general stess of being a kid can create issues because kids don't always know how to vocalise their problems. This is no reflection on you as a mother or your mutual communication. Depending on her age, it can just be that kids don't have the comprehension of what is making them feel stressed or they can't put a name to it.

The brain works in mysterious ways and sometimes kids will expel stress physically, just like adults. Ever noticed how you can work yourself to the bone then the minute your big job is done, you come down with the flu? It's not coincidence, the body has used up all it's reserves to get the stressor (big job) sorted. When you relax, the adrenalin calms down and the body reaches the exhaustion phase. The immune system is compromised and just like that, the cold or flu sets in.

My advice would be to keep in contact with your Pead and request a referral for another Neurologist so you can get a second opinion. Ask the psychologist to assess your daughter for psychosomatic symptoms and if he/she is prepared to, to write a short letter outlining his/her opinion on the issue. If the Neurologist can see you've looked at all possibilities and psychosomatic issues have been ruled out, he's more likely to take it one step further.

You know you're child, don't be disheartened if you hit a few hurdles. Keep us posted =)

 

[amlowe]

I have no experience with sp's, and I'm really new to all of this, so no answers for you either.... I just wanted to post to say that I think it's great that you're pushing forth and advocating for your daughter! I think you said she's in the 1st grade? That makes her just a couple years younger than my daughter. Honestly, I find it extremely hard to believe that any 6-9 year old would even know how to begin to fake simple partial seizures.... I mean, seriously? onder: WTH??? Not sure why a psych evaluate would be needed either. Perhaps if there's any reason to believe that she is seeking attention, rather than actual help. If not, then you shouldn't have to jump through hoops to have your child's doctor take you seriously. I'd definitely try to get in to see a second neuro though... Kudos to you for insisting someone listen to your daughter.:clap:
-am

 

[RockerMama]

Your daughter sounds similar to my son. His Paed is pretty sure he is having Partial Seizures but at this stage Nureo isn't saying much other than not a "nasty form of epilepsy" due to his age. When his paed watched his footage she sat their watching each event going partial, partial, shudder syndrome, partial, etc for nearly all of his footage. It was a bit confronting. Good luck with finding a Dr to help you as for us I am finding it hard to get many answers but then maybe I am asking for a bit much given my sons age.
Donnajane

I hope you are able to get answers soon!

 

[RockerMama]

Hi RockerMama, welcome to the forums. I'm sure you'll find some good info and support here =) Good on you for being so informed and proactive, your daughter is a lucky girl =)

I have a full childhood history of epileptic seizures, from the small partials right up to the grand mals or tonic-clonics as they are now known (unconscious and convulsing). I was medicated for 15 years and said to have "grown out of it" which is fairly common. Anyway 10 years later I begin having the same old symptoms, auras and sensations. I can tell you now that you don't forget that seizure feeling that comes over you. Anyway 2 years later and several hospital visits i'm still getting it under control. My problem is that the doctor's agree there is epilepsy there, but it sounds like there is also a secondary issue, such as vertigo. They are both similar in symptomology and this makes the diagnosis hard.

From what I can gather, diagnosis is less important than treatment. Treatment is very trial and error but it often leads to a diagnosis when you see the difference the right medication can make. It can take about 3 weeks for medication to take full effect and longer to settle down. You may also have to try several different medications and levels before you find the right balance for your daughter.

My Neurologist told me the first Neuro I saw (and despised) was wrong to dismiss epilepsy just because the 24hour EEG came back clear. He said they do EEG's as a matter of protocol but they don't expect to find anything with simple/complex partials because it is so hit and miss. The literature states only 40% of simple partials are detected with EEGs. Many seizures occur deep within the brain and are hard to detect. With some types of epilepsy, you need to be having a seizure while the EEG is in progress. I think more serious forms can be detected by damaged brain tissue and the use of CAT/PET scans but i'm not sure of this.

Often, as in my case, a Neuro will make a clinical diagnosis from the parent's description, diarising of symptomology and sufferer's response to medication. It's worth keeping any eye-witness descriptions, footage or questions on possible patterns that you've noticed. Think diet, hormones, fatigue, lack of sleep, excitement/stress levels etc. My mum was a huge help in my diagnosis because she had witnessed my seizures for years. She also knew my fainting v's seizures and when I constantly felt patronized, doubted or unheard, she reminded me that she could see there was something not right. I'm still working on getting my epilepsy sorted out but having a decent doctor is half the battle.

Good idea taking the Psychologist route. It's well worth ruling it out because it gets you one step further down the "please take this seriously" path. As a psych student, I can also say that your daughter doesn't have to be "faking it" for the therapy to assist her. It can be unconscious stress that is manifesting (psychosomatic). It doesn't have to be abuse, even just general stess of being a kid can create issues because kids don't always know how to vocalise their problems. This is no reflection on you as a mother or your mutual communication. Depending on her age, it can just be that kids don't have the comprehension of what is making them feel stressed or they can't put a name to it.

The brain works in mysterious ways and sometimes kids will expel stress physically, just like adults. Ever noticed how you can work yourself to the bone then the minute your big job is done, you come down with the flu? It's not coincidence, the body has used up all it's reserves to get the stressor (big job) sorted. When you relax, the adrenalin calms down and the body reaches the exhaustion phase. The immune system is compromised and just like that, the cold or flu sets in.

My advice would be to keep in contact with your Pead and request a referral for another Neurologist so you can get a second opinion. Ask the psychologist to assess your daughter for psychosomatic symptoms and if he/she is prepared to, to write a short letter outlining his/her opinion on the issue. If the Neurologist can see you've looked at all possibilities and psychosomatic issues have been ruled out, he's more likely to take it one step further.

You know you're child, don't be disheartened if you hit a few hurdles. Keep us posted =)

Thank you! We plan on following through, just to be thorough. When my daughter was first getting headaches, anxiety was my first thought. She is seriously the happiest kid ever, and even when I think she SHOULD be upset, she isn't. We talked a lot, and she told me about things that make her upset. When I asked about why she doesn't get upset about certain things, she was very mature about it. She is just the greatest kid in the world. I told her she doesn't have to always be mature, and she said she isn't and reminded me of when she was crying because she couldn't find her favorite stuffed animal.

 

[RockerMama]

I have no experience with sp's, and I'm really new to all of this, so no answers for you either.... I just wanted to post to say that I think it's great that you're pushing forth and advocating for your daughter! I think you said she's in the 1st grade? That makes her just a couple years younger than my daughter. Honestly, I find it extremely hard to believe that any 6-9 year old would even know how to begin to fake simple partial seizures.... I mean, seriously? onder: WTH??? Not sure why a psych evaluate would be needed either. Perhaps if there's any reason to believe that she is seeking attention, rather than actual help. If not, then you shouldn't have to jump through hoops to have your child's doctor take you seriously. I'd definitely try to get in to see a second neuro though... Kudos to you for insisting someone listen to your daughter.:clap:
-am

THANK YOU! She isn't a kid that lies. Ever. Even to get out of trouble. She honestly does a better job and taking responsibility for when she does something wrong then some adults I know! I just don't see how, even if she was lying, that she would have the exact symptoms so down. Nothing more, nothing less. Just right down the line.

 

[RockerMama]

The newest update is some lip movements in her sleep. I am not sure if that is just a typical thing. I *knew* I saw it last week in the video monitor(I have one in both kids rooms), but by the time I looked closer she was done. Tonight I was looking at the monitor, and saw her moving her lips. My son grinds his teeth sometimes, and I know what that looks like. This wasn't grinding. It looked like she was talking or chewing food. I even turned the monitor up to see if she was talking in her sleep, but she wasn't.

Any ideas? I hate being so clueless.

 

[donnajane]

Wobblez Your post was so great to read. I think we are also in for a long Journery with my 1yr old and in a weird way it was comforting to read that your seizures didn't show up on the eeg as my 1yr old's haven't either but it is so obvious he is having them!

RockeMama - "Being Clueless" I know how you feel. I had a call from my sons Child Care, which luckily is at my work, he had larger Abscence Event today, said they he was fine after but wanted to let me know. We are seeing his osteo tonight is trying to work with us on getting his nerves to "focus" more so he will be able to walk etc. His Osteo is sending us to a Dr who lectured him when he was a Uni as he wants her to have a look at him as he said something is not right but as with everyone else not sure what. He is going to let us know our time to see her at his appointment today.

Hang in there. This site helps me so much.
Donnajane