Help! Am I Overreacting?

[Lori Ann]

I am fairly new to all this. Tics started in November (all the other symptoms started coming on after that) and we are still waiting official diagnosis, although PANDAS is most likely the culprit. (Cam-Kinase test results in two weeks!) I am calling the doctor every week to let him know that nothing is working and things are getting worse. We just got word that he is having seizure activity (EEG) and was started on depakote. Since we discontinued abx three weeks ago, things have gone from bad to worse, ds rages have become violent and he is now cursing which is new. In addition, he is hurting the poor dog. I am crying more often than not and e-mailed boss today about taking a leave of absence from work (really don't want to do that), but I am afraid he will not be able to go back to school in two weeks. I just called again today to let doctor know that rages are getting worse and depakote is producing more night time seizure activity, not less. We have an appt. in two weeks, am I overreacting or should I be calling so much? The doctor so far has been nice, but I am afraid he will ignore me if I keep bugging him. Please chime in- should I just wait until our next appt. or am I justified in demanding help right now? Also, how do you cope with this? I feel as if I am grieving the loss of my sweet, smart little boy while trying to care for the monster living in my house. How horrible does that sound?

[thereishope]

I'm sorry you're going through this. Two weeks seems like a lifetime when dealing with this. Do you know if strep was the culprit? Since he's been off antibiotics for 3 weeks, take him to the doctor and have him tested. It sounds like he needs those antibiotics. Perhaps if the doctor sees him in person, sees the terror in your eyes, he will do something.

 

And you're not a bad parent for thinking what you are. You feel shell shocked when this happens. Even when your child begins to re-emerge, you still have so many feelings in you. Many describe it as Post Traumatic Stress Disorder. When my son was sick, he was gone. That wasn't him. Keep fighting and find inner strength. Believe and know you will get him back.

Edited August 12, 2010 by Vickie

[kimballot]

Hi Lori Ann - I am so sorry to hear about what you are going through. You will get lots of good ideas and support from us. I am wondering if you have worked with a doctor that specializes in PANDAS yet. There is a pinned list at the top of this forum. Since you are dealing with seizurs, it might be good to find a neurologist who specializes in PANDAS, like Dr. Latimer. I know that won't help your immediate situation, but it may help you to develop a longer range plan.

 

Please keep us posted on your son.

Edited August 12, 2010 by kimballot

[Fixit]

I am fairly new to all this. Tics started in November (all the other symptoms started coming on after that) and we are still waiting official diagnosis, although PANDAS is most likely the culprit. (Cam-Kinase test results in two weeks!) I am calling the doctor every week to let him know that nothing is working and things are getting worse. We just got word that he is having seizure activity (EEG) and was started on depakote. Since we discontinued abx three weeks ago, things have gone from bad to worse, ds rages have become violent and he is now cursing which is new. In addition, he is hurting the poor dog. I am crying more often than not and e-mailed boss today about taking a leave of absence from work (really don't want to do that), but I am afraid he will not be able to go back to school in two weeks. I just called again today to let doctor know that rages are getting worse and depakote is producing more night time seizure activity, not less. We have an appt. in two weeks, am I overreacting or should I be calling so much? The doctor so far has been nice, but I am afraid he will ignore me if I keep bugging him. Please chime in- should I just wait until our next appt. or am I justified in demanding help right now? Also, how do you cope with this? I feel as if I am grieving the loss of my sweet, smart little boy while trying to care for the monster living in my house. How horrible does that sound?

 

 

I dont' think you are over reacting..seizures would scare me too and i would be doing the same..

Go to a doc and sometimes when they see the parent in distress they are more compassionate...as over the phone they don't see you

 

i am sorry you and your child are going through this!!!!!!

 

all here have had all the emotions one can experience...tremedous greif, walking on eggshells, feelings off being a bad parent, (Personally on occastoin, stupid) for not doing more, knowing more, understanding more...guilty for wanting to run away..but if you do, who will do all you do for your child....

 

THis is a great place....you will find great support and info....

Have you found a DAN doc...sometimes they have great little secrets/tricks up their sleeve...

Scott smith...they guy we use, has measured my ds urinary neoptriens...and once they reach a certain level, he has seen a correlation with seizrues...also these neopterins relate to other auto conditoins like ms, aid, autism..

 

there is a drug made for seizures that thay use to treat pain for TMJ...Tegretal....maybe you could switch to that one

[peglem]

I've been where you are now. Did the pediatrician rx the seizure med, or a neuro? Right now- I think its urgent that you get in contact with the prescribing physician and get that straightened out.

And I don't think you're over reacting at all. This is a disorder that hits hard and fast- if your doctor is bothered by you needing help, he/she is not taking it seriously enough. The doctor gets paid to help you when you need it.

[cobbiemommy]

I am fairly new to all this. Tics started in November (all the other symptoms started coming on after that) and we are still waiting official diagnosis, although PANDAS is most likely the culprit. (Cam-Kinase test results in two weeks!) I am calling the doctor every week to let him know that nothing is working and things are getting worse. We just got word that he is having seizure activity (EEG) and was started on depakote. Since we discontinued abx three weeks ago, things have gone from bad to worse, ds rages have become violent and he is now cursing which is new. In addition, he is hurting the poor dog. I am crying more often than not and e-mailed boss today about taking a leave of absence from work (really don't want to do that), but I am afraid he will not be able to go back to school in two weeks. I just called again today to let doctor know that rages are getting worse and depakote is producing more night time seizure activity, not less. We have an appt. in two weeks, am I overreacting or should I be calling so much? The doctor so far has been nice, but I am afraid he will ignore me if I keep bugging him. Please chime in- should I just wait until our next appt. or am I justified in demanding help right now? Also, how do you cope with this? I feel as if I am grieving the loss of my sweet, smart little boy while trying to care for the monster living in my house. How horrible does that sound?

Hang in there! Take the leave of absence if necessary. If you keep crying and cannot (or barely) function get an antidepressant. Some might disagree with me, but I have ruined my own health with dealing with the stress of this. Don't be afraid to call the doc with a legitimate concern. Best of luck to you.