Well, I took Lloyd for his 6 mo. visit yesterday to his neurologist. It's always interesting because I don't behave in a way to which the doctor is accustomed. He came in the room and asked Lloyd how he was and Lloyd said "real good" which surprised me. He then asked if Lloyd had any seizures lately. I said he had one last week. He asked what seizure medicine he was taking and I said none. He asked about the Keppra and the Depakote he had prescribed and I said it made him act like a zombie with his mouth hanging open and drooling all over himself so I stopped them. The doctor told me that I was giving him (the doctor) chest pains and pleaded with me to try something else suggesting Dilantin. I told him we would try but if it had the same effect I would toss it in the trash. Poor man. I explained that Lloyd was impaired as it was and I would not give him anything that would impair him further. I also said that I avoid all sedatives and anesthesia as much as possible. Not a word about a facility or wheelchair - both of which he has wanted for a loooong time. I guess that means that he understands me. Good! When we left the doctor told me that I was his hero and that Lloyd seemed to be very happy. I thanked him and went on my merry way. Sooo we will try the Dilantin and if it turns him into a zombie, I will stop it, too. Lloyd has had 4-5 seizures in the last year so why should I medicate him for 365 days for 4-5 episodes?? The doctor warned that a serious seizure could be the end. I just rolled my eyes and he responded that he gets me. All in all, it was a good visit. Sweet Jesus, if you're gonna take him; just make it quick and painless!!!
My neurologist would love you :) I am equally "difficult"
Bottom line is we know our loved ones better than anyone, including their doctors. Stick to your guns, you are doing fantastic! I hope the Dilantin doesn't affect Lloyd too severely.
I have been on all of those meds at one point (for treatment of my Trigeminal Neuralgia) and they are notorious for their side effects. Tegretol almost killed me. I ended up with acute toxicity and was in the hospital for weeks. Crazy!
Over the years, my H has had multiple dx and one of them was dementia due to seizure disorder. (FTD, EAOD, and general cerebral atrophy were/are the differential dx.)
H has had much better luck- OK, some better luck with the generic keppra than he did with dilantin. He had taken dilantin for years and I found these two things: one is that it seemed, for him anyway, to be very dose specific. The other is that it caused a lot of periodontal issues, and this is for a person who never faced that before. H had "braces" when young but great teeth thereafter, until dilantin.
Depakote! Ay yi yi! This was not good for H. It was supposed to calm him but did the opposite. His delusions increased and this was only after a couple of days.
Very atypical I was told. This "atypical" has affected his treatment in general. N said he would try other meds but not while H is at home with only me here- really for my safety.
Wishing you the best of luck- maybe not needed- you seem like a very strong advocate.
Linda, I had a similar experience when the doctor prescribed a statin for my husband. This was the year he was diagnosed. by day 3 he could not remember what he did that day or who he spent it with. We were managing an RV park at the time and he spent the day training the new assistant manager. I went online that night, educated myself to the fact that 2% have a severe reaction like that and threw them away. Next doctor visit when asked how it was going, I told him what transcribed and he did not agree.
When he was put on Namenda, at my insistence, he had brain fog, exhaustion, vision changes, couldn't do anything. Per neurologist urging we gave it two months then threw them out. He hated feeling like a 'zombie' and so did I. If I had left him on the Namenda I can only imagine where he would be in this disease now - we would have no life cause he would have sat in the chair and wasted away.
Though it was not with the same meds, my experience was like Charlotte's. "There is no documentation on this reaction with aricept @23 instead of aricept @10." Even stronger with depakoke: "This medication calms; it does not increase delusions."
Okay to the N as I am not a doc; maybe he can deal with this 24/7. Come on over! (to him). And once you get here, please explain to me the differential dx as H has had issues since 1999 and no one can agree on one, or the order of these dx.
They focus on his age: "This cannot be..." Well something has been, and is.
I didn't know we were "difficult". Dh's N, who I liked very much, initially prescribed Aricept 5 and that worked fine for a few months - mostly kept him calmer but no help with cognition . Later, he prescribed Namenda and within a week dh was a raging lunatic and I threw those in the trash and emailed N what I had done and he was ok with that. We added Celexa because the Aricept had stopped being effective for aggression. Celexa worked very well, still does. As the Aricept continued to give dh severe incontinence issues which I couldn't handle, we discontinued those, too. Now dh only takes the Celexa in addition to his bp meds that he's been on for years. Earlier his PCP prescribed a statin because dh's cholesterol was at around 200 and I refused those stating what was stated above. The doc argued with me and I still refused. It just doesn't make sense to me to give my dh who has AD a drug to prolong his life of misery, could even make it worse. Guess I'm part of that "difficult" crowd.
200 is acceptable to many doctors. I would not consider it high enough to worry about. Some doctors now want it down to 150 - ridiculous. The VA in Nevada had 200 as the top number before meds. Here in Portland it is 230. go figure! I think if it went over 350 I would be concerned with our guys. Garlic, almonds, and niacin work to lower it.
WE are their best doctor in many cases. Less drugs the better is my motto
I agree with Charlotte. Less is better. I still have not gone to get the Dilantin. Of course the doctor believes that I will have to give it to him because he ordered follow-up blood work to "check" the levels of Dilantin in his system. I may have been born at night, but it wasn't last night. I still won't do anything I don't think is good for him. He has been having severe twitching and jerking when he wakes up every morning for the last 5 days. I really worry about impairing him further with the Dilantin. I had asked the doctor for Neurontin for the myoclonus and and any pain he may be having, but he said no. Anyone out there have any meds that actually calmed their LO's myoclonus without impairing them a lot???
linda i am still using neurontin aka gabapentin for DH myoclonus in late stage 7. it helps him rest and the jerks are controlled. my DH also has the small jerks twitiching usually when he wakes or i startled or under stress. they arent every day and i use it only if they are noticeable for a day or so and then nothing til next time. in small doses all is good. i only use a pedi dose very low 100mg at night as needed. no strange side effects other than a bit more sleepy at night and we have used it off/on for 6yrs.
Linda...my dh has what the dr. refers to as mini siezures at night. He tried several different meds. with my dh and he now has my dh on (see below) after his problem seemed to get much worse then just jerking and his EEG showed some signs of siezures.
He is on LevetiracetAM500mg every night...and Divalproex Sod Dr 500 Mg every night. He rarely has the problem now and has had no side affects.
Well, I guess it is time to go back to the family doctor. I wish the darned neurologist would let me try things. He said no to the Marinol too, but our family doctor wrote the scrip for it. I would really like to try the Neurontin as he is fighting the jerking by trying to sit up and stand up in the mornings earlier than he should. After he is awake for a little while, he seems to be quite a lot better. Lloyd has been having the twitching and jerking every morning for the last week and it lasts right around an hour.
Well, Divvi, we are done for sure with the Dilantin. I noticed a rash on him yesterday and today it is from his neck all the way down to his groin and from his elbows down to his hands. He is allergic to the Dilantin. It couldn't be anything else. So I made an appointment with our PCP and am taking him in tomorrow. I will ask for the liquid Neurontin tomorrow. Lloyd's twitching and jerking are more pronounced when he gets up in the morning too. He seems to be ok after he is awake for awhile. His mobility has been impaired since the Dilantin so I guess we will see how he is in a few days. He cannot even come down the stairs right now unless I stand backwards in front of him and hold both his hands. I have had to literally pick him up and put him in and out of the tub for the last few days, too. Walking is all he can do anymore. Poor thing.
a rash would be of significant concern. hes having a high allergic reaction then. maybe you should call the dr and report that just so they know. i would watch him closely and check him for any other symptoms, aka breathing issues or more serious side effects. seems he is very intolerant to meds as is my DH. i think the dose is super important. i would request to always start a new med on a pediatric dose just incase they dont do well. if they tolerate it i increase as necessary. but i find with my spouse less is more with just about any of them. if they have any kidney issues its even of more concern they dont eliminate as fast.
i hope you have a good result with the neurontin. but maybe the dr will want to wait to start that with the rash. you want that gone before starting something else for sure. i have used the neurontin for several years in very low dose and its been ok. it does increase sleep which is what i use for at night. with any med i have to deal with some side effects. but its a tossup which to have to deal with, non sleeping or sleeping too much. we have opted to give meds 2-3times/wk or as needed and not daily for these reasons.
its always something to deal with! good luck. i do know the jerking scares my DH and i think its painful to him at times. its why i opted to give him a bit for controlling it if it gets too pronounced.
Linda, sure sounds like it is time to kick Lloyd's neurologist to the curb!! Who needs a doctor who doesn't listen to us and wont help us as we fight and search for ways to help our loved one and bring them as much quality to their lives as we can. There are great doctors out there, we just need to keep searching until we find them.
I do hope his rash isn't too serious and clears up quickly! ((hugs to you))
I agree with divvi, My mom once got a rash, it was kind of raised and blotchy, and it turned out to be an allergic response to an antibiotic in her case. She was miserable with the itching.I would absolutely contact the doctor about this. Don't wait..at least call this in. I have had an allergic reaction to a medication and had to go to an ER for adrenalin it was a dangerous situation. Anaphlaxsis (sp) is nothing to fool around with. I would not give him anymore of that medicine as the reactions are likely to be more severe.
My experience has been the PCP is a good resource for general meds to deal w/the more standard physiological issues such as bp, hormone replacement, osteoporosis, etc., for my 62 yo spouse but the psychiatrist or geriatric psychiatrist was much better at overall med management than the neurologist. Monthly reviews by the ALF staff and Psych. MD have now eliminated almost all the behavioral meds or reduced the dosage significantly with some kept on hand for PRN. DW is doing much better...but no two ALZ patients are the same..and I wonder how much of how our LO exists is due to over/wrong medication.
Back from the PCP. He said to stop the Dilantin, but I had already done that even before I noticed the rash. The rash moved all the way up to his armpits. He prescribed liquid Neurontin and we are starting him on half a teaspoon at bedtime. Giant Eagle pharmacy didn't have it, but I will be able to pick it up by noon tomorrow. I guess that will give the Dilantin more time to get out of his system. Nikki, I had thought of axing the neurologist (not literally hahahaha) but then thought better of it. It would mean finding a new one and educating him about what a bitch I can be. I only see him twice a year so as long as my sweet intelligent PCP gives me what Lloyd needs, why bother? Our PCP delivered my 42-yr-old daughter and he is really getting up there. I worry about what I will do if anything ever happens to him. He has really disproved all the thoughts about "old dogs" because he has always been willing to try anything! All he takes right now is a 2.5mg Marinol, a 4mg coumadin, a 10mg Namenda. I do no sleeping pills or seizure meds anymore because they impair him more than he already is. Hopefully taking the Neurontin before bed and in such a small amount will not affect him negatively.
Linda Mc--There are other reasons to have a good neuro on board besides the meds. I hope you will never face what I and others have with extremely challenging behaviors, but my husband's neuro was able to quickly get him admitted to a geripsych unit twice when it was clear he needed big med adjustments; he continually monitored how I was doing, recommended respite, placement, etc. when it was appropriate, etc. Even an outstanding PCP would have been hard pressed to fill those needs, I believe. Again, maybe you are not facing the inensity of issues I did, but I needed every resource I could muster in my corner.
Well, Lloyd's rash is worse so I am going to stop the Neurontin until it clears up. I am pretty sure the rash is just from the Dilantin, but I want to be sure. He only had one dose of a half teaspoon of Neurontin, but I want to do it right.