Neuro appt. yesterday

[peglem]

Went much better than I expected! I already knew the MRI was normal and the voluminous gene testing was neg. and the eeg, showed abnormal activity but no seizures, so I was expecting the "can't do anything for you-she's just autistic" schpeal. But, I described the "spells" Allie has been having. She said that although Allie's eeg didn't show seizures- the abnormal activity was consistent with somebody who does have seizures and what I described sounded like seizures or bad migraines. So, we're going to try lamictal, very low dose with a sssllllllooooooowwww increase. It'll take several weeks to see if it works for her.

The other thing I was worried about is Allie has bruising around her eyes- looks like somebody gave her a brutal beating. When the neuro saw that, she just said, "Looks like she's been having a tough time."

Mostly, I guess it was just nice to have a doctor take Allie's issues seriously and try to find solutions. I think this should have happened years ago- could have avoided much misery. But, we can only start from now..

[Braindrain]

The other thing I was worried about is Allie has bruising around her eyes- looks like somebody gave her a brutal beating. When the neuro saw that, she just said, "Looks like she's been having a tough time."

Is Allie on any new medications? I'm just thinking that some meds list
"abnormal bruising or bleeding" as a side effect.:(

[peglem]

Is Allie on any new medications? I'm just thinking that some meds list
"abnormal bruising or bleeding" as a side effect.:(

The bruising happened @ 2 days after starting a steroid nasal spray to unblock her eustacean tubes- I thought of that right away, but, both the pharmacist and a doctor said no. I still think it may have contributed- this child has been banging HARD for years and we've never seen this happen. I looked up side affects of the nasal spray and it did say that steroids can cause bruising, but that was mostly with the oral type. Oh, the dr. explanation is that the bruising is blood running under the skin and pooling in her eye sockets from banging her forehead. I don't know whether this is true or not, but, since the doctor said that- Allie has been working harder on not banging her head. Problem is...she has increased arm biting instead.

[mrsjerome]

The bruising happened @ 2 days after starting a steroid nasal spray to unblock her eustacean tubes- I thought of that right away, but, both the pharmacist and a doctor said no. I still think it may have contributed- this child has been banging HARD for years and we've never seen this happen. I looked up side affects of the nasal spray and it did say that steroids can cause bruising, but that was mostly with the oral type. Oh, the dr. explanation is that the bruising is blood running under the skin and pooling in her eye sockets from banging her forehead. I don't know whether this is true or not, but, since the doctor said that- Allie has been working harder on not banging her head. Problem is...she has increased arm biting instead.

Could problems be due to allergies? My son rubs his eyes very hard certain times of the year which they call SIB . His eyes look very dark around also from his rubbing so hard..He is also more agitated too. These are due to the seasonal allergies he has at certain times of the year.
One of the anti-seizure drugs they tried on my husband was Lamictal. Although the Neuro said it was one of the easier meds to tolerate, my husband broke out in a rash so it had to be discontinued. The rash is one of the major side-effects of this med. So be on the lookout for it when first start using. I believe all the seizure meds start out with a low dose first and gradually increase until desired dosage to contain seizures is reached. The same is true when taken off . Gradually decrease dose until off.

[peglem]

I don't think allergies- this isn't like dark circles, more like someone smacked her, really hard. Her right eyelid even is all bruised, and her temples are lightly bruised. Up to a couple years ago, she had alot of sinus problems. Extensive allergy testing showed nothing.


The neuro told us about the chance of rash with lamictal- we will look out for that. I sure hope it helps her. We could use something positive for her- she's just been having so many problems.

[Mother's Heart]

I'm familiar with the black eyes from head slapping/banging. sigh. not a lovely feeling for mom, nor I'm sure for child. while my son rarely hits himself actually in the eye (at least not since he stopped using his knee) he still blackens his eyes sometimes when he hits the side of his face near his eye, (right on the zygomatic arch area there). :( :(

hugs,
cj

[peglem]

(right on the zygomatic arch area there). :( :(

hugs,
cj

Anatomy lesson please: Where exactly is that arch?

[silentmiaow]

That is how my seizure disorder was diagnosed: Staring spells and odd behavior and sometimes vomiting and such. And when it responded to an anti-seizure medication that was considered enough. They said the type of temporal lobe seizure I was experiencing would be too deep in the brain for their EEG, and then a different brain scan showed lots of odd and asymmetric temporal lobe activity, so they went with that idea.

[peglem]

silentmiaow-
Is the TMJ in your sig for temp-mandibular joint?

[Mother's Heart]

oh oops. sorry for no explanation.

zygomatic arch. it's the articulation between the upper cheek bone and the skull. It's that long slender bone that you can feel goimg from the outside of your cheekbone, (just under your eye) and arches backward to just in front of your ear. It's just under the soft area at the temple.

clear as mud?

[Mother's Heart]

perhaps a picture:

http://www.upstate.edu/cdb/grossanat/imgs/sklatza.jpg

gotta go.

[peglem]

Wow, that makes sense that she'd be hitting there with the jaw popping she's been doing. Gorsh, hope she didn't crack something in there.

[Mother's Heart]

I have to say....I've done my fair share of cringing and hoping Donovan didn't break the z.arch. It is not uncommon for it to fracture, and he whacks sooo hard right there. I've worried more about him hitting his temple though..

(my dad once fractured that bone when he was trimming a tree and pulled a relatively small branch down, whacked his face. Setting it was interesting and not a huge deal, but still. I think I saw on one of the sites I googled how they did it.)

[RathyKay]

I'm glad you were pleasantly surprised. We don't have any personal experience with Lamictal (yay!:o). It is definitely the "Start low, Go slow" drug, in the hopes of avoiding the rash. You probably already know it's also the late-night-party drug, or is that the I'll-sleep-when-I'm-dead drug? I hope it helps.

[gynwhyver]

Peglem:

My daughter has intractable epilepsy (well-controlled now with Keppra, but it took years to find the right meds). We tried Lamictal when she was right around 2 yrs old but had to discontinue when she developed a rash. We did not tritate slowly, and this never should have been prescribed for her at that age (extremely dangerous per the manufacturer, at least at the time it was prescribed for her!!), but was prescribed because her epi specialist at the time was in bed with the drug manufacturer (I found out later, and no, we have not seen this "specialist" since I found out how dangerous a situation she'd placed my daughter - and I'd already almost lost my child to seizures previously).

All seizure meds have risks, but Lamictal is one of those meds that really scare me. I'm glad the neuro wants to go slowly, as that is crucial in helping to avert a possible dangerous reaction, but am kind of surprised this is the first choice as there are other seizure meds that don't need to be titrated as slowly and may be just as efficient.

One thing I was wondering about is if the neuro happened to mention anything about Stephens-Johnson Syndrome with Lamictal? It can be deadly. Please monitor your daughter closesly and if you see any of the following symptoms, please contact your dr immediately, as stopping the medication does not always stop the reaction:

SYMPTOMS
•Rash, blisters, or red splotches on skin
•Persistent fever
•Blisters in mouth, eyes, ears, nose, genital area
•Swelling of eyelids, red eyes
•Conjunctivitis
•Flu-like symptoms
•Recent history of having taken a prescription or over-the-counter medication


Here is a link to info about Lamictal: http://www.rxlist.com/cgi/generic/lamotrigine.htm

Good luck. I hope you and your daughter find relief soon.

Take care,

Gwyn

[peglem]

Yes, the neuro did discuss rash and other potential side affects- she suggested lamictal, topamax or Keppra. My daughter already has ragey behaviors, so I was hesitant to try Kepprage. She said topamax tends to cause cognitive slowing, which I think would frustrate the crap out of my kid. So, we decided to try the lamictal. If it doesn't work or if we see problems, we'll call right away and I'm confident the neuro will deal with it. She was very good about explaining everything. Maybe this is not the right med for Allie- the neuro did say also, that many kids like Allie have atypical responses to AEDs. After having her problems almost completely dismissed at the local children's hospital, it is good to find somebody who believes that there is a problem and will help us.

I know these meds have drawbacks- I would not even consider them if Allie didn't have alot of misery. She has regressed significantly in the last 4 years or so and really indicates that she wants and needs help. I hope I'm making the right decision for her.

[gynwhyver]

Peglem:

Sorry if I came off as criticizing, or harsh. I honestly didn't mean to. I have a friend whose son developed SJS with Lamictal who had to be treated in a burn unit and almost died from it. And the fact that this is a known reaction and parents are most often not told of it, only that rash may develop and discontinue if one does...not that it could potentially be deadly...kind of puts me in over-protection mode.

Sounds like you have a really good neuro. Sometimes, that's over half the battle :) I am so happy with the one we have now - I couldn't ask for anyone better. It really is a relief when someone else in a professional capacity takes your concerns seriously and actually values your opinions, ideas, and experiences. Helps make really difficult decisions a little easier.

BTW, "Kepprage" is not fun. I'm just glad the night terrors and agression finally stopped after a few months and that we can titrate slowly to minimize side effects. And most importantly, that it works for her (at least for now).

We also didn't try "Dopamax" for the same concerns you had. She was already regressing, why make things even more difficult for her, especially when word retrieval problems are well-documented, and she was already struggling to communicate?

We're seeing regression in math skills, so I know how hard it is to watch your child struggle to do things that use to come so easily. I really hope Ally has better luck with Lamictal than we did and that her regression stops. :)

[peglem]

gynwhyver, you came off as somebody who had a horrible scary experience and were concerned that it might happen to somebody else. I appreciate that. Al these AEDs have horror stories attached, don't they? Makes the decision so much harder and the fact that the experts don't really know how the individual will be affected makes it even harder. She did say she has a patient whose rages went away on Keppra. I think perhaps Allie's rages come from seizure activity (it scares her and sends her into F or F mode) so my hope is that a medicine can help her get kid of both.

[Isabelle]

Peglem, no experience with the new anticonvulsants like keppra, topomax, lamictal, etc. just valproic acid and tegretol. i read that even though they had quite different formulas they all tend to numb parts of the brain like speech, cognitive skills, if suffering from nerve pain sometimes increase to sharp from vague, causes headaches, rages and many others adverse effects.

i hope i wish that lamictal reduce her HBs and SIBs

Mother's heart, that cheek bone....that is the place that he targets and for the longest time was purple now is brownish, what nerve is there?

[peglem]

Well, so far, pretty decent results- I know we're not supposed to be seeing results yet...but. The 1st 3 nights on the lamictal, Allie woke up very early and in a foul mood, so decided to switch to AM dosing- I figured if it was making her wake, morning was the best time. We've seen less raging and very little of the spells ( the ones that look like "The Scream"). She had a real bad ragey episode last night, but not really the seizure looking things. Today was the 7th dose. I'm scared to hope....crashed from high hopes so many times- its a tough fall and hard to get back up from it.

[RathyKay]

I missed this yesterday, but Yay! Tom always responded well to AEDs. In the early days of a new AED, we would see subtle signs of improvement (seizures less hard/strong, not lasting as long). If you're just giving a morning dose right now, then an evening "event" makes sense as it wears off. Unfortunately, you do have to start low and go slow with Lamictal. Anyway, it sounds positive to me, and I hope the trend continues.

[peglem]

Geez, Allie's sleep schedule has been really messed up. Two days ago, she woke up at 3:30 AM- in a rage. I was seriously too sleepy to even notice if she was having the "episodes". Then yesterday she fell asleep at 2:00 in the afternoon and slept until 1:00 AM, which is how long I've been up, too. She did have some "episodes" this morning before her lamictal (8:00) and looks like she's getting a "trigger" from the airconditioning coming on. She has indicated that she wants us to turn it off, too. We've been topping out at 115 degrees here, plus humidity is up, so that is just NOT an option. So in a few more days, we'll need to increase the lamictal dose to 50mg from 25. Would it be best to give the whole 50 in the morning or split 25/AM- 25PM? The neuro said it would be okay either way we want to do it. I'm thinking the 25mg she's getting every morning seems to be reducing episodes(seizure? headache?) for @ 8 hours. But this med has a reputation for causing wakefulness....I shuld probably ask on child neuro.

[RathyKay]

I kind of like to "balance" the meds - same in the morning as in the evening. When you take it, the blood levels start to rise until the peak is reached, and then they begin to fall until the next dose. If you're taking it only once a day, the blood level peak is higher and the blood level trough (low) is lower than if it's split. I guess I kind of figure it's nicer to have less variation in blood levels on your body. With most of the AEDs Tom was on, they seemed to make him sleepy, so if we were offset, he took the larger dose at night. As I mentioned earlier, we never tried Lamictal. And, it *is* known for lack of sleep. Have you looked into melatonin, or are you trying to wait until everything reaches steady-state?
I shuld probably ask on child neuro.
Yep. And did you?;)

[peglem]

I didn't ask on child neuro yet.

I thought I finally got sleep straightened out last night- she slept from 10:30 to 7:30 this morning, but took a nap today from 11:00 til 2:00. I've also started her on a cal-mag supplement because she seemed to be having leg pains- maybe that's making her sleepy? I do give melatonin at night for sleep. If it was the lamictal keeping her up, then she should be awake days and sleeping nights, since she gets it in the AM. I think I will try dosing 25/AM & 25PM...but after a week at 50/day, we switch to 100 mg single tabs. I guess I could split them and give in 2 doses. I'm pretty handy at pill splitting.

[Lara]

(((peglem))) Just sending a hug. I can't offer any useful suggestions I'm sorry. It's pretty full on there for you and your daughter there isn't it. Hoping you get some rest sometimes. Also hoping you get some answers soon.

[silentmiaow]

silentmiaow- Is the TMJ in your sig for temp-mandibular joint?

Yes. Strange that they just call it "TMJ" when that's just the name of the joint, not a description of what's wrong with it, which can be anything from grinding your teeth too often to bone malformations. (Mine appears to be the latter.)

[peglem]

silentmiaow, So, glad to be hearing from you! We've missed you for sure around here!

So, the TMJ- is that pain in that joint? Do you have triggers, or is it a constant pain?

[silentmiaow]

In my case, basically the joint itself is formed in a way where it's impossible for the back part of my jaw to rest as far into my skull as it should (that part of my skull is too shallow, and I think he also said my lower jaw is way too small and far back), and combine that with having lax joints in general, and the thing is always popping out of place, there's something about the cartilage moving around in there too that causes it to pop differently, and then there's pain that goes with that. Just dealt with the pain for a lot of years, but then had 5 hours of dental work (under anesthesia, so I didn't feel any pain while they pried my jaw open as far as it could go) last year which made the entire thing get super-painful and start making tearing and scraping noises and locking open and other bad things. So now have a splint and physical therapy and other things that are supposed to make it better, but so far all the physical therapist seems to have done is make my neck go from painful on one side to clenched so tight that my entire head tilted to the left and I'm on muscle relaxants and have one more day of a neck brace thing for that. I am hoping that tomorrow he'll come up with something slightly less obnoxious to do to me -- he did say the first approach was a mistake and that we need to work on stabilizing my jaw by building up muscles or something. And at this point I'll try nearly anything to get it to quit acting the way it's acting, so we'll see.

[peglem]

OMG! How horrible for you! Gosh, to have them try to fix it and then just make things worse! Is this complete incompetence or just "never-seen-anything-like-this-so-don't-know-what-to-do-ism" I don't know if you feel comfortable with this guy or if you should look for somebody else who may know better how to help-or at least not hurt? I'm a huge dentaphobe because I've had so many incompetent dentists work on me. My mouth is a complete mess and everytime I try again for dental care it just seems to get worse. Wishing you the best possible care and lots of healing.

[silentmiaow]

I've since changed dentists.

After he also:

1. Told me there were almost certainly no mechanical problems with my jaw because it wasn't clicking much the particular moment he checked it, and that I probably just clicked it all the time wrongly on purpose, and that it couldn't possibly have anything to do with hours of dental work at once.

2. Told me an infection in my mouth was only red because I "must poke at it all the time".

3. Told me a nerve a wisdom tooth was tangled in was only bothering me because I must "poke at it all the time".

On #1, the jaw doctor easily found 'deformities' on the x-ray and said that anyone whose jaw is formed like this should never have their mouth open longer than half an hour except in emergencies, on #2, it stopped being red once the infection (which was painful enough to make me vomit continuously while being seen at the walk-in clinic for it) was properly treated, and on #3, now that my wisdom teeth are out I can hit that part of my face and not cause the kind of pain that lightly brushing it caused before.

I later found out that he had forcibly pried open the jaw of a little autistic girl who "didn't listen well enough" the first time around. (Her mother pulled her out of there immediately and threatened to sue if billed for the appointment.)

So, he's no longer my dentist, and I had half a mind to walk in there and tell him exactly why, but never did.

[Isabelle]

dentists, they are bad. they messed up my front tooth, enlarge the cavities, sell you sensodyne for sensitive teeth when you need only brushing your teeth with baking soda. looking for a dentist for my autistic child, one wanted to put him under, and another wanted to put a metal thing to keep open his mouth, finally i found one who was willing to listen to my "method" of preparing, explaining how long it will last,then rinse, whatever, then action, counting, rinse,repeat and off we went....ok let him have a few minutes of fun with the chair :)

so, i am not surprise they messed up your mouth. you say you are in muscle relaxants, how about injections of botox ??

[silentmiaow]

I'd think about that if this becomes more long-term, they're currently operating under the assumption that this (the neck stuff) is short-term. If it turns out not to be, I'd think about other possibilities (which there are many).