Off to the psychiatrist to discuss new medication, plus ask about saliva test

[TerryJ2]

Poor difficult child has been through so much with-his medications--every allergy under the sun, and right now, on depakote, and he's as cranky as can be. I am so sick of this.
Last night I went to a NAMI mtng, and there was a special speaker: a(n MD) psychiatrist who spoke about transcranial magnetic stimulation for depression that does not respond to drugs (or for those who are allergic), and a DNA saliva test that can help determine what an individual will react positively and negatively to.
I'm not sure if I'm allowed to post the name of the company but it's got gene in the name.

The test is $3200 ... the equivalent to the $ we wasted last yr on medications, even with ins.
I am for it; husband is not.:check_writer: Ins covers part of it. (Reminds me of the time I was tested for the breast cancer gene; very expensive but worth it, since there are 4 females in my family of origin.)

Also, we met with-the therapist today, and he gave us a ph # for a local dr who specializes in matching up drug resistant pts to the right medication. I don't want the doctors to butt heads but I am so sick of this merry-go-round.

I'm ready for both the saliva test and the transcranial magentic stimulation right this minute! I found a govn't sponsored trial online but you have to be 18, and difficult child is only 16. Plus, it was updated in Jan. in they are still putting all the pieces in place b4 it's open to the public. It was worth a try; this stuff is expensive!

difficult child has been very cranky, but in the tdocs ofc, he was talking up a storm and very mature. Very verbal and clear. I think it's worth the visit every time. He'll wind up like a top b4 we go in, complaining about what a waste it is and how he thinks it's stupid, and then I have a headache, but it's worth it once he unloads. He's going to be working on mindfulness, paying attention to when he's feeling anxious or crankly, practicing his breathing, etc. so he doesn't just start yelling.
It is such a nice change, even though I hate the yelling--he used to just scream and slam and kick and spit. Now he uses real words. It's sort of like living with-my mother again, lol!

 

[buddy]

Terry I think there was a show this year on Dr Phil about that. Should check out the website.
I'd try the medication test too. It's well worth for a lifetime of better options!

 

[IT1967]

I'll be very interested to hear more about this. My difficult child 2 had trouble on several ADHD medications. We have a good combo atm, but I don't think there are a lot more options for me if things change.

 

[TerryJ2]

Well, the psychiatrist was not excited about the saliva test. He said it's "not there yet." IOW, it's still being developed, and while it's a gauge, it's not specific enough to be worth it. That put the kibosh on husband's possible agreement. He's all about the $$$ first of all.

psychiatrist increased difficult child's Depakote from 250 mg to 500. He said that the first cpl wks were just a trial to see if difficult child could tolerate it with-o any side effects. difficult child insisted that the medication was making him more irritable. psychiatrist spent a long time talking, convincing difficult child that it was his underlying mood disorder that he was experiencing because he's not on a strong enough level of the medication to experience those symptoms.
Also, many of the symptoms that difficult child said he was experiencing were all traceable to hypoglycemia, and since difficult child doesn't eat anything all day long, and he is complaining about being lightheaded, spacy, and agitated, it's a no-brainer that he's got to get his blood sugar up. I pointed that out and he blew me off, but when the psychiatrist said it, of course difficult child listened. This a.m., I got difficult child to take ONE bite of gluten free toast with-jam and ONE sip of OJ. Better than nothing, which is what he's been doing lately.
The third reason difficult child has been irritable is that he's only been getting 5-1/2 hrs of sleep at night. He has to get up at 5:45 for school, but he's up half the night, eating. That's when he's hungry. We all spent a while talking at the psychiatrist's ofc yesterday about how difficult child has to put the dimmer on his iPad. (I said that I could see the light out in the hallway, and difficult child has nearly taken my arm off in the middle of the night when I've snuck into his room to flip the thing face-down.) If that doesn't work, we'll remove it altogether and use a smaller ipod shuffle for music. difficult child couldn't care less whether the light affects his circadian rhythms when it stimulates his pineal gland, or whether it affects photosensitive retinal ganglion cells, but it was interesting for husband and myself.

Lots of bad habits to get rid of!

We'll know within 6 wks about the depakote. difficult child started on the increased dose last night.

 

[TerryJ2]

difficult child texted me yesterday to say that he had a rash on his arm. I texted back that I'd look when he got home. He showed me, and he'd scratched the area so all I saw was fingernail marks and a few tiny bumps underneath that indicated very dry skin.
I am afraid that since he doesn't want to be on these medications, he is going to do his best to develop a rash, no matter what ...

 

[buddy]

Yeah, not likely to be on one patch of one arm if it's a drug rash, right. Good that he doesn't realize that! LOL

 

[TerryJ2]

Rash is gone. Now he has a high pulse and his heart is beating so hard I can see it.

He was trying to get out of serving food at church last night, so I called the psychiatrist's ofc and asked if they had a blood pressure cuff. The receptionist said no, they didn't have one, and that the dr was tied up all day. (His staff needs training; she should have suggested that we see the pediatrician or go to a doctor-in-the box.)
Instead, I took difficult child (and his girlfriend, who is attached at the hip) to husband's office. The staff took his BiPolar (BP) and pulse. BiPolar (BP) was normal and pulse was 90 which is a bit high for him.
He has been really mean and snippy lately. I really need this drug to work. And I need these issues to be early side effect that will pass. But so far, it looks like his Zolof reaction from yrs back, which only got worse, to the point where he couldn't stand up and was crawling on the floor.

I left a msg with-the psychiatrist about the BiPolar (BP) and pulse. Fingers crossed!

 

[susiestar]

They trialed depakote on J for migraine prevention. Not only did it make the migraines worse, after about a week on it she cried constantly. It didn't matter what you said or how you said it, she burst into tears. I told the doctor we were NOT doing that when I offered her a piece of Dove dark chocolate and she burst into tears - NOT the happy kind.

The test and the dr who works with the medication resistant sound like excellent ideas.

 

[TerryJ2]

I know, but our psychiatrist said that it works best with-ssri medications, and we're working with-mood stabilizers. I will research it a bit more.

So sorry that Depakote made your daughter so sad and agitated. Some of these drugs do just the opposite of what they are supposed to do.

by the way, I found two typos in my note above and can't find the "edit" button. It's always there ... but not today.

 

[BusynMember]

As one who tried many medications, I have to disagree with doctor, bu t that is how they typically talk about people when they complain about side effects. To many people 250-500 is NOT too little to not feel anything. I can't take 5 mg. of Prozac without feeling weird and sick, but doctors have told me it's my "anxiety" or "mood disorder." It bothers me when doctors do this, but it's up to the patient to learn to say, "No, I know my body and how it feels and I'm not going to take this drug because it is making me feel worse." There is a chance he's lying, but if a medication makes you feel better, why would you try to get out of taking it?

Some people are ultra sensitive to all medications. Autism Spectrum Disorders (ASD) kids tend to be. Adults too. I really don't expect you to believe me...but I do hope you take it into a bit of consideration. These drugs are a krapshoot. They can help or make one feel worse, which is why so many adults are non-compliant. Depakote, and it wasn't a high dose, made my daughter feel spacy and cognitively unable to learn or retain anything and she was eighteen so she tossed it in the wastebasket. After that she said her head felt clear again.

I get very upset when doctors blame a mental illness for a medication's side effect. I had to learn to get past that and to know what felt ok and what didn't and to be active in my healthcare and I think all mental healthcare patients should or else they will always be told "no, it's not...it's your anxiety/depression/bipolar etc."

Ok, off the soapbox. But this is something your son will have to do and WILL do when he is an adult...decide for himself what is working for him, what isn't working at all, and what is making him feel even worse.

 

[TerryJ2]

These drugs are a krapshoot

I totally agree. However, since difficult child is not mature enough to handle his emotions by himself, and he himself is still learning the differences between his Autism Spectrum Disorders (ASD), mood disorder, and medication side effects, we have to take this long journey. Better that he do it under the supervision of us (his parents) and teachers and doctors than try to self medicate if he is on his own and middle-aged.
He was better this weekend and did not complain about his pulse or heart beat. Fingers crossed.