Scared and Working with docs right this minute...

buddy

New Member
I suspect, Janet, it will be much the same... I doubt he would not want to go in to a hospital anyway with all the attention (good or bad) he gets. sigh.
 

Steely

Active Member
Yea, I always had Matt admitted through ER for sure, that opened up the beds immediately. When he was at Q's age, we had d/c Children's because they only took non violent kids, and so we worked with another hospital up until he was 17. By that age, enough was enough, and I had to send him to an out of state program. Next time I might suggest just going straight to ER, and let them figure out where to send him?
 

buddy

New Member
Well, if the docs wouldn't have wanted him on the seizure unit, we could have done a direct admit into the psychiatric hospital which is what I initially thought they would want since he was just there and the medication they started is what lowered the seizure threshold. I think learning what we know now, if we have to go up on the lithium, we will plan for him to be prior authorized and wait until a bed opens and do both medications at the same time. We didn't know this first time that it would for sure lower the threshold that much.

so he is doing well on the unit except really really hyper. OK, first day there readjusting (he thought he would have his same room etc. so it is all a big change for him) anyway they said he is in his room he has taken three naps and now has a headache that he rates a 7 out of 10 and doesn't want to get up. I asked he had a seizure that they saw? they said no someone was with him and he did not have a seizure. I reminded them that he also (and usually) has simple seizures and you will not SEE them. You have to ask him if he felt fake etc. and even then from the in pt. evaluation, there were many that he could not identify but we could see them on eeg and see his behavior changes. They are trying their best but this is not what they do and they just dont get it. Oh well, the point is to get the medications up and I just have to count the number of naps and headaches to tell. His neuro will talk them tomorrow and hopefully that will help.

I feel a little guilty because I got pretty angry with him, even though I knew what was going on, I wasn't feeling well and I just could not take the refusals and threats, and what makes me sick is then when he recovers he just feels terrible and begs to be able to try again, can I please explain to Santa that he is trying etc. I told him of course Santa knows the truth and he has nothing to worry about. He was very happy about that. I suspect the Santa thing is going to be done this year. I sign all the presents from me, but he always thinks it is really Santa. I said I would keep it going until all the kids in our family stopped believing because he will tell. We have one in 4th, she knows now but we have one in 2nd who still believes. Anyway yesterday was not my proudest mommy moment.
 

Steely

Active Member
Oh sweetie - give yourself a break. We are NEVER able to be great moms when we are stressed out to the limits like this. Perhaps that is the *worst* part about being a mom of a difficult child - the guilt. The guilt they have over their actions, and the guilt we have in our responses.
Sigh.
Bottom line is that he *knows* you love him. Period. Case closed. THAT is the most important thing in all of this.
 
L

Liahona

Guest
Be gentle with yourself, Dee. You can't be perfect all the time. You are going through a lot, just like difficult child is.

We have an unusual dynamic about Santa here. husband tells them he exists and then I tell them the history behind the myth. I'm trying to prepare them for the let down. And yes, I'm thinking years down the road.:sigh: Because of their issues if I don't it could derail a lot of trust. (If Santa isn't real is anyone real that I can't see, like the grandmother I've not met yet?)

That is cute that he is worried about Santa, and good that you explain that Santa is understanding.
 

Hound dog

Nana's are Beautiful
Buddy you're gonna get upset. They don't get it because it's not their area of knowledge, that doesn't make it any less frustrating.

I don't think we ever knew for sure why around this age Travis went off the deep end seizure wise and into the odd behavior that came with them. Neuro and I suspect hormones played a part. Since your son seems to be doing the same at the same age now I really think it may have played a much larger role somehow than we thought. He'd had some bad ones as an infant and todder, then just the absense ones after that until this age when it all went to heck and the atypical ones started. A bad scary time for sure. It took high doses of carbatrol to get the seizures under control finally. My step dad who had severe epilepsy had a fit at the dose Travis was on......but it was necessary, and thank God it worked.

((((hugs)))))
 

TerryJ2

Well-Known Member
I'm sending more hugs.
I'm so sorry that the nurses don't "get it" about the invisible seizures. Arrgh! But you're right ... he's in for medication issues so I hope it works out all right. Fingers crossed. I hope you get some sleep.
 
T

TeDo

Guest
I feel a little guilty because I got pretty angry with him, even though I knew what was going on, I wasn't feeling well and I just could not take the refusals and threats, and what makes me sick is then when he recovers he just feels terrible . . . . . . . . . . . was not my proudest mommy moment.
Now what was it that you said to me last week when we were talking about how I'D messed up?? Do you really want me to remind you??? You (and I) are not perfect. You (and I) are only human. You (and I) would NEVER intentionally hurt our children. We do the best we can with what we've got with who we are at any given moment in time. You are dealing with a lot. Please, give yourself a break (insert giant hug here).

I really hope the neuro can help get things under control soon. Can the neuro get him admitted to a seizure unit or someplace that is more appropriate? I know it's not ideal, but he is safe and the psychiatric hospital is going above and beyond their area of expertise to help him. I am so very thankful you at least have them. We don't have such things out here in the boonies but then again, we don't have residents either because we're so small.

Continuing to send prayers your way as well as MANY supportive {{{{(((HUGS)))}}}}
 

buddy

New Member
Now what was it that you said to me last week when we were talking about how I'D messed up?? Do you really want me to remind you??? You (and I) are not perfect. You (and I) are only human. You (and I) would NEVER intentionally hurt our children. We do the best we can with what we've got with who we are at any given moment in time. You are dealing with a lot. Please, give yourself a break (insert giant hug here).

I really hope the neuro can help get things under control soon. Can the neuro get him admitted to a seizure unit or someplace that is more appropriate? I know it's not ideal, but he is safe and the psychiatric hospital is going above and beyond their area of expertise to help him. I am so very thankful you at least have them. We don't have such things out here in the boonies but then again, we don't have residents either because we're so small.

Continuing to send prayers your way as well as MANY supportive {{{{(((HUGS)))}}}}


Well, that is why I was honest in my post, I need you guys to be my inside voice to help remind me of what I already know....to be as good a friend to myself as I would hope to be to you all. You are RIGHT RIGHT RIGHT. I am not beating myself up though, really. It is just that the thought/feeling was there and it helped to tell you all. THANK YOU as always for not getting upset but just guiding me home.

Yes, I do feel comfortable with him there and I have decided I will not try to solve all of the problems with this here, just get him stable then we can analyze more clearly with the doctors who DO know their stuff. I wish there was a miracle doctor out there who did all of this at once. (truth is his neuro is a board certified psychiatrist too, that is why I do trust her so much, along with being a difficult child mom)
 

buddy

New Member
I suspect hormones played a part. Since your son seems to be doing the same at the same age now I really think it may have played a much larger role somehow than we thought

It helps so much to hear your stories. I do remember his neuro (same one as now) telling me when he was little, the seizures are apparently gone for now, but they often come back when puberty hits. I was a tiny bit prepared because of this, but not really...when you face it, it is really not fun!
 

buddy

New Member
A MOMENT OF CLARITY...MAYBE

I woke around 4 this morning.... Just thinking as usual...

so, the point of adding medications in the first place is the shock doctors have about his Concerta dose (and clonidine dose too) and the fear that it is lowering sezure threshold and could cause cardiac issues....

THEN, we try Lamictal.... terrible psychological side effects, caused seizures, super rage filled/angry filled emotions flooded him and he ended up messed up for a while, maybe even still having the effects of that


THEN, we stop the lamictal, he is in psychiatric hospital for two weeks they start Lithium to help with the aggression (some started before Lamictal but REALLY increased after lamictal so we are medicating the effects to some degree) but in hopes of having something that works so we dont have to increase the Concerta, (which helps when he gets bigger and starts having less impulse control overall...every time it works!) we try the Lithium. Side effects of that they say are lowering seizure potential and heart complications. UMMM?????

SO NOW, Lithium does seem to help with some of the aggression and he is more redirectable according to all who see him, including hospital and school and Integrated Listening Systems (ILS) workers. BUt the need for redirection so much at this point (impulse control issues/attention issues) has not been helped. AND we are having to to run to the hospital to get labs for his heart and medication levels and he IS having seizures which was a possible side effect of Concerta but didn't happen (well they felt it could have caused the simple seizures to increase but they were there before the concerta dose was high, they just called it "anxiety" and added Prozac which never helped, because in the end eeg study showed it was seizures and so Lyrica was added for the seizures and that did help). In addition, we have to watch for tyroid issues that happen with the Lithium.

In the END.... since the new medications all carrythe same risks, and are unknown.... Why did we not just increase the Concerta. It is a large dose, true. WE keep monitoring BiPolar (BP) and heart function AND since he has the enzyme issue I was told all along that the Concerta dose that is in his blood serum levels would be much lower than expected. So, I need to check to see if that is true--why would they be so wigged out if that is true??? Also, why are we taking such big unknown risks when we know how well he responds to Ritalin/Concerta.

I know they will argue with me (not the neuro though, she may get it and actually may be thinking it since she is the one with the pediatrician who let the dose be high anyway)

Am I making sense? How do I bring this up???
 
T

TeDo

Guest
Print out this post of yours and give it to the doctor. You've thought it out and written it all out so logically, if you could remember every single word in the order it's written here, go for it. Otherwise print it out and give it to them. It all sounds very logical to me. But.......then again.......I'm only a difficult child mom, not a doctor so what do I know. LOL
 

buddy

New Member
Well, I just think I'll do that! I am sure many of them (docs) must know deep down that we are more confident in our peers' thoughts than theirs at times, lol. OK, if it makes sense to you then I will do that....yes indeed!
 

AnnieO

Shooting from the Hip
She also said that at 16 in mn kids can refuse to sign in for psychiatric services. any of you have to deal with that. I heard someone here say that about rehab so I suspect so. It just made me realize i probably have things to do before the legal guardianship stuff. I think it would be funny to have him print part of his first name on a form to sign for receiving or not receiving services. He would have no clue. What do I need to do for that time, It is only a little over a year away. I think he would never realize he could refuse and we could just say sign here, but you never know. What would what I have to do for just that piece until 18 be called. Or would htey just have to do a hold and I get him in at that point if it was ever a concern?

Just seems so crazy that a 16 yr old could refuse treatment for any medical issue even if it falls under mental health. Yikes.

Oh, hon. :hugs: I had not seen your post till now!

In Ohio the kid can refuse at 14 (unless declared incompetent or on probation). This created a super issue with Onyxx last spring. She was TOLD she could refuse. How nice. No, it does not make sense. Parents are responsible for the actions of their minor children, but can't MAKE them get help. Yeah.

Anyway... How is Q doing??? I know the frustration with the hospital. staff. :sigh:
 

InsaneCdn

Well-Known Member
In Ohio the kid can refuse at 14 (unless declared incompetent or on probation).
Buddy might have more chance at Q being declared incompetent, than you do of getting that for O... which is probably the reason for being on probation??

Its a complicated world out there!
 

buddy

New Member
So, declaring them incompetent until they are 18 and you do the guardianship stuff or does that replace it or??? I will call my arc advocate for sure after this all settles down. At least he only turns 15 in Jan so I have the year to get it done and I will make sure it is ready to go early.

As far as how he is doing.....I called this morning and they said he got up early and already had a headache (didn't admit it but said he needed advil, but I'm not gonna tell you why, haha, as they watch him rub his head... he is so transparent most times thank heaven.) I have a "family meeting" (again, sigh...alot of travel for a minute of seeing him) but I will grab the doctor during that time. I hear ours is out today taking his boards but will be back tomorrow. I will have the one who does seizure work though so that is good. I will just take advantage and pick his brain. Sounds like the nurse he has now is much more seizure wise....she said they are assuming a seizure if he sleeps or has the headache so I hope that means they are listening to me. It is so different than what they saw just a week ago so they know it is a change. It only happened that one day when he was inpt those two weeks.

We have never gone up on medications so quickly before with him so that is a little scary to me. He can sometimes do well on a medication if we go slowly even if he does poorly on it going a normal rate.... but that wasn't an option since he was so reckless after each seizure.

they said after his medications kicked in he was in group and doing ok. I always feel like he must be the toughest kid ever for them, but they reassured me that this is what they do and they have kids way way harder than Q. He generally doesn't intentionally hurt anyone, just a containment issue, haha.
 
Top