Thought I'd vent if anyone cares to read it...

[rainyseason]

I'm sory, I've got to put this in writing, so i dont start screaming it instead. It's been a HORRIBLE week. I'm exhausted, tired and just plain lost!

My son is making it so hard for me to 'like' him right now. I love him with all my heart, but there are days I wonder where he came from. I'm trying to figure out where I went wrong. What I did etc.... I know I screwed up somewhere, but for the life of me, I can't fugure it out. I'm a stay at home mom to 4. My oldest just went off to college and my youngest is 5 yrs old. MY difficult child is my 11 yr old. About a year ago, he started getting hit hard with grand mal seizures. After MRI's, EEG's etc...we were told that even when we are not seeing seizures physically on the outside, the eeg shows them occuring every few seconds. Mind you, he goes about his business anyway. So they put him on medications along with a referral to psychiatry. That came about because with the first medication (diazapam), came these insane mood swings! (Got inot an arguement for the doctor about that one). I love it when they assume there are problems at home, when in fact your childs behavior changed at the exact same time that they gave him his first drug! So we went through a series of questions that I HAVE NEVER been asked before and my answers were....no, we've never used drugs, no we do not drink, no, my baby weighed 10lbs at birth and came right home, no, there's no abuse in the home. yes, we are still married. yes, my husband is my childs biological father. No, he's never had ONE SINGLE INCIDENT UNTIL YOU GAVE HIM THIS DRUG! To which the doctor replies" Well, the odds of a medication causing crying spells, irritability, mood swings, anger, throwing stuff, raging, laughing etccc, are slim to NONE!" To which I REPLY" Well then how come the pill box lists those things as SIDE EFFECTS!" And of course, the response to that was ...."Why don't you leave the diagnosis to us!"

Anyway, I'm just so annoyed, as it took my kid almost TWO hours to get out of bed this morning for school....which has become a regular thing. Fought with me tootha and nail. Cried through and hour or two of homework, because he's having trouble focusing on the sheet of paper in front of him and can't hold a pencil because his hand is numb thanks to yet another seizure and force feeding him 6 pills at a time (Lamictal, diazapam etc...) while he constantly asks if he's going to die, because the stupid doctor had to tell us IN FRONT OF OUR CHILD, that he is at risk for SUDEP, due to the fact that he stops breathing during his seizures AND thanks to the doctor, my child now knows that when he stops breathing we'll be shoving a syringe into his rectum to snap him out of it...and oh yah...that drug can also cause respiratory failure.... AND these MORONS want to know why my child is upset...hmmmmmm....I wonder?????

 

[smallworld]

I assume you see a pediatric neurologist? Can you get a second opinion about the medications?

 

[rainyseason]

Yes, pediatric. We're waiting on the second opinion now. We just started intake with a psychiatrist as we were told that they will be familiar with the mental side effects reguarding the medications. His first appointment was last week, it lasted 2 hours and was basically a bunch of questions. She said it would take more, but it could be a whole host of things. Maybe more than one, maybe bipolar, maybe so 'defiance disorder'? I'm not sure what that is yet, maybe the medications, maybe from the epilepsy. But I feel like its gonna take forever. I get that its a process, but if they could just give me some idea....the waiting is killing me!

 

[TeDo]

Don't you hate it when doctor's have the GOD complex? Us mothers know nothing . Good thing you're getting a second opinion because that is what I would have recommended. Maybe you should switch neurologists if you can. I don't know if I could continue to work with a "professional" that dismisses what I know to be true. For your son's sake and yours, you are going to need a team that can work TOGETHER.

 

[Mamaof5]

*snort* I eat docs with god complexes for breakfast. I remember the neonatal specialist (GERD specialist) for my youngest trying to trample me in the NICU in front of all his colleagues. Not only did I dance circles around him in his own specialty of gastro esophageal reflux disease in neonates I also gained the respect of his colleagues, the NICU nurses and made his resident laugh at him to his face. I don`t tolerate any BS from any doctor, I even fired that doctor and switched to another GERD specialist. None of his colleagues respect him because of his `god complex`and horrible (with a capital H) bedside manner. This dude had 3rd, 4th and 10th time moms in tears running out the door at his personal office at times.

Don`t put up with it, we pay them to provide a service (whether you pay with taxpayer dollar like where I am or pay out of pocket). Demand quality services, if they don`t excel at the very best - fire them just like you would a mechanic or accountant.

 

[TerryJ2]

I'm so sorry, I just am not in the mood to read the rest of your note. This has me seeing red. FIRE THE DOCTOR!!!

Well, the odds of a medication causing crying spells, irritability, mood swings, anger, throwing stuff, raging, laughing etccc, are slim to NONE!" To which I REPLY" Well then how come the pill box lists those things as SIDE EFFECTS!" And of course, the response to that was ...."Why don't you leave the diagnosis to us!"

 

[confuzzled]

i dont blame you one bit for venting, and i think your train of thought is right on---i'm shocked that any doctor would blow off your concern and refer you to a psychiatrist. not to say, of course, that a seizure disorder and a mental health issue can't co-exist because they most certainly can, but i'd personally be looking very closely at the diazapam too, since that is the change that brought on the onset of symptoms. certainly there are other medication choices that can be tried to tease out the symptoms, if any (that arent diazapam related).

i'd be looking for another neurological opinion asap...are you maybe near a major childrens hospital?

i know its hard to get an appointment, but if you have a good relationship with your pediatrician maybe he can intervene and get a faster appointment for you.

just remember--"if it doesn't sound right, it probably isn't"...go with your gut.

 

[rainyseason]

*snort* I eat docs with god complexes for breakfast. I remember the neonatal specialist (GERD specialist) for my youngest trying to trample me in the NICU in front of all his colleagues. Not only did I dance circles around him in his own specialty of gastro esophageal reflux disease in neonates I also gained the respect of his colleagues, the NICU nurses and made his resident laugh at him to his face. I don`t tolerate any BS from any doctor, I even fired that doctor and switched to another GERD specialist. None of his colleagues respect him because of his `god complex`and horrible (with a capital H) bedside manner. This dude had 3rd, 4th and 10th time moms in tears running out the door at his personal office at times.

Don`t put up with it, we pay them to provide a service (whether you pay with taxpayer dollar like where I am or pay out of pocket). Demand quality services, if they don`t excel at the very best - fire them just like you would a mechanic or accountant.

Thats how I feel! I'm so tired of it! We pay them, ok, well we pay into our insurance and then pay 20% till we cap (Anthem), but 20%, plus the deuctable and the co-pay for a guy who gets paid hundreds an hour, each appointment with neuro lasting 4 hrs, plus the trip to the Cleveland Clinic which is an hour away etc....I mean OMG, we built the addition on this guys house! Now we're adding the psychiatrist and psychologist, plus the oral surgeon because my sons seizures have detroyed his teeth...and dental (guardian is the WORST dental insurance EVER) , never pays what health does and psychology...don't even get me started on the hoops we're running through for that. Once a week (psychology) 15$ co~pay, twice a month (psychiatry), 15$ co-pay, once a month neuro (15$ co~pay), EVERY appointment, Cleveland Clinic parking garage 10$ as we are always over the time frame to get cheaper parking. Gas to drive an hour away (All of these docs work out of the same hospital....mainly because at least we know they are in our network). medications that are costing a fortune.....AND this neuro wanted to know why I was dragging my feet making appointments for psychiatric (my insurance doesn't pay much for that). And NO....while I honestly wouldn't expect a neurologist to understand this, but we fall into the catagory most Americans fall into. That is to say, we're not rich enough to pay for it, but not broke enough to get it free. Smack in the middle of blah! And what bothers me the most, is I was in the Army! Doesn't that count for anything anymore? My own government basically says.....hey if you quit your job, sell your house, liquidate and blow it all....we'll give you medicaid...otherwise, we can't help you!

I'm sorry...I don't mean to babble, I'm just so fed up! I have a bill for 3000.00$ you know why? because when my child was life flighted to the Childrens Hospital, I forgot to ask the helicopter if it was in my network!

 

[rainyseason]

i dont blame you one bit for venting, and i think your train of thought is right on---i'm shocked that any doctor would blow off your concern and refer you to a psychiatrist. not to say, of course, that a seizure disorder and a mental health issue can't co-exist because they most certainly can, but i'd personally be looking very closely at the diazapam too, since that is the change that brought on the onset of symptoms. certainly there are other medication choices that can be tried to tease out the symptoms, if any (that arent diazapam related).

i'd be looking for another neurological opinion asap...are you maybe near a major childrens hospital?

i know its hard to get an appointment, but if you have a good relationship with your pediatrician maybe he can intervene and get a faster appointment for you.

just remember--"if it doesn't sound right, it probably isn't"...go with your gut.

Reguarding the diazapam, I too have heard from numerous people (even the school psychologist), that diazapam can have a crying effect. As a matter of fact, the school psychologist has stated that she has given IEP for medication side effects even without the original diagnosis. She told me that medications themselves can be debilitating....

 

[Mamaof5]

May I suggest going old school with barbituates or perhaps tegatrol...My niece is a clonic epileptic (she also has partial absent seizures as well) and tegatrol has done wonders for her. Dilantin is hard on the kidneys and liver in long term use which is what they switched her from. The only issue with her now is behavioral from puberty and the tegatrol causing mood swings now. When she was younger it was really good for her, it did amazing wonders. Diazapam is really harsh for an 11 year old body and brain, I mean even Adarral (not sure of spelling on that) is better than diazapam in all honesty.

My gmother was on barbs for her grand mal seizures (full clonics) and my mom had dilantin and tegatrol mix for her half stroke, seizure back in 1997 that helped quite a lot. Both my gmother and mother had aneurisms that caused them. My mom just went through TIAs and brain surgery for the aneurism last July. What about a B2 blocker (i heard it has some great off label use for seizures even though its a cardiac drug). There`s so many options and this doctor is not exploring them. What about G laser surgery, nuerotin based medications...so much there at hand and this doctor is still being a douche about it. *sorry, he really is being a douche*

 

[slsh]

I can't tell you how many neurologists I've chewed out and then fired. A common line I've gotten re: my oldest is "Well, gee, he has CP, of *course* he's going to have seizures." And we're talking status seizures - life-threatening stuff. I usually ask the neuro if that would be an acceptable plan of care if it were his/her kid. If that doesn't snap them out of their God-complex, then they're history in my book.

And the really sad/wonderful thing is that once I found the right neuro who didn't accept frequent seizures as the norm and who aggressively attacked the problem with medication additions and tweaks, my kid's been comparatively seizure free (knock wood) for going on 6 years now. I think he's had maybe 5 seizures since 08/2004, when for the longest time it was 1 every 3 months.

These docs may have degrees out the ears and may have a broader generalized knowledge about neuro stuff than I do, but if they're not going to get with the program, they're not worth my time and money, and most certainly not worth risking my son's well-being and potentially his life.

A doctor who doesn't listen to a parent's concerns is just begging to be fired, in my humble opinion.

Edited to add: Diazepam is an interesting choice for a first medication. Boo has classic grand mal (tonic clonic) seizures. The first medication was Carbatrol (a form of tegretol). Didn't hold him. We added Topamax which did okay for about a year but then he had the seizure of all seizures, so then they added Keppra. He's on pretty high doses of all 3, but they hold him. We use Diastat (rectal diazepam) when he has a seizure to try and stop it - works on the tonic clonic stuff, but about half the time he then goes into a partial complex seizure (no movements aside from twitching eyes, but not aware or alert).

Another thought, since neuro was so kind as to freak your kid out about potential breathing issues - can you get a script for an oxygen tank? We keep one around, just in case. It originally was requested by one of his school nurses who got anxious about breathing during a sz, but there have been a couple of times here at home when I was real glad to have it handy.

 

[rainyseason]

May I suggest going old school with barbituates or perhaps tegatrol...My niece is a clonic epileptic (she also has partial absent seizures as well) and tegatrol has done wonders for her. Dilantin is hard on the kidneys and liver in long term use which is what they switched her from. The only issue with her now is behavioral from puberty and the tegatrol causing mood swings now. When she was younger it was really good for her, it did amazing wonders. Diazapam is really harsh for an 11 year old body and brain, I mean even Adarral (not sure of spelling on that) is better than diazapam in all honesty.

My gmother was on barbs for her grand mal seizures (full clonics) and my mom had dilantin and tegatrol mix for her half stroke, seizure back in 1997 that helped quite a lot. Both my gmother and mother had aneurisms that caused them. My mom just went through TIAs and brain surgery for the aneurism last July. What about a B2 blocker (i heard it has some great off label use for seizures even though its a cardiac drug). There`s so many options and this doctor is not exploring them. What about G laser surgery, nuerotin based medications...so much there at hand and this doctor is still being a douche about it. *sorry, he really is being a douche*

We did tegratol too. However my son has had two severe allergic reactions to a couple different medications. He was immediately hospitalized and loaded with counteracting drugs etc....horrible red blotchy rash. Even swelling in his mouth etc...So now we have to play the musical pill game, pop pills...wait and see....It's very frustrating giving medications to a child this age, that it's hard for adults to function on! I just wish they'd come up with an instead cure all....if wishes were horse...no side effects, no rashes or mood swings....that would truly be fine day! And I really hated the drugs that 'doped' him. A child needs to be a child. Those were horrible. Barely awake, cranky, crying....it's a catch22. I know it's pointless to complain about it, but I guess when you pregnant, you have all these hopes and dreams for your baby to be. You read "what to expect etc...I've never seen any of the baby books books say to expect epilepsy, rages, depression, neurologists and shrinks...And its killing me what all of this is doing to my son. It's so easy for the doctor to say...take a pill...then they send them home and along with our child, we suffer the effects.

 

[susiestar]

I am sorry things are so awful for him. He must be really terrified by all of this. He is old enough to understand a lot of it and I bet the docs forget that while he can understand what the words mean, he is still very young to actually be able to cope with those meanings. Docs can be real idiots (I still fume over the doctor who told us last Dec for my daughter to just imagine herself running and playing - that is all that she needs to deal with the pain of a very painful movement disorder that causes extreme muscle spasms. He couldn't figure out why I wanted pain control or felt she had a "right" to adequate pain control and a decent quality of life. I am STILL fighting for that for her. So I TOTALLY understand what you are saying.

I would be VERY unhappy about the valium. IF given long term one of the most common side effects of valium (diazepam) is depression. I had a doctor give me enough to sedate a horse and after four weeks all I did was sit, stare, sleep, and cry. I did NOTHING else. It was a HUGE behavioral change, and the doctor couldn't figure out why it bothered not only me, but the rest of my family and friends also. He wanted to triple my dose of it to treat the depression.

YOU are the expert in your child. PERIOD. Not only did he live inside you for months, you spend all day with him or working to provide for his needs. The docs see him for 5-30 mins every month or so (it is every 3-6 mos for the specialists here!) and they like to think they know our kids better than we do. It is hogwash and we know it! Do NOT go with anything that your instincts scream is wrong. IF it is a medication that you think is the problem, you MUST MUST MUST have doctor guidelines to stop them - some, like valium, can kill if stopped suddenly.

One thing that may help you - in my signature at the bottom of this post there is a link to a Parent Report. Moms here worked out an outline a few years back that lets you keep all the info about your child in ONE place. It is a total blessing because there is no hunting for all the documents or copies of tests, letters, etc... His whole history is there so you can fill out all that new patient info, and you can keep copies on hand to give whatever parts to those working with you that they need. Just be SURE to only give them what they need. Some people have had some of the info used against them. Our pediatrician had a copy of the entire thing back when my son was at his worst. She isn't our pediatrician anymore because she used a LOT of the info against my daughter. That is another long story, no need to go into it now.

Anyway, the report can be used just as easily for medical problems like seizures as for other difficult child issues, so I recommend writing one. I honestly don't know what I would do with-o it.

Lots of us like a book called "The Explosive Child" by Ross Greene. WHile your difficult child's behaviors seem to come clearly from the medications, they still have to be dealt with. This book will give you some excellent ways to cope. I also suggest reading "Parenting with love and Logic" by Fay and Cline. Both may be helpful.

 

[idohope]

How frustrating. And so hard on your difficult child. As the others have suggested get that second opinion and find another specialist if the one you are seeing continues to be so dismissive of these critical issues. Please do always come here to vent. We do care to read it!