Psychiatric meds?

[harpazo_hope]

I took my son to the emergency room last night. He was extremely dizzy, had a headache and felt like he had a fever. With all the behavior changes he has had lately, I really wanted to make sure he was OK. So... of course, surprise, surprise! Everything is psychological and he wants my son to see a psychiatrist. He will be calling me for my doctor's number to talk to him about it. I don't want him to see a psychiatrist. I want to find the cause, and fix that... not mask the symptoms. I don't understand why they can label his tics as neurological, even when they include speaking differently, but baby talk is psychological. Where are they seeing this line between the two?

 

This does make me wonder what kind of meds would they put him on? He has sever tics, anxiety, and lately has been having baby talk and strange toddler like behavior. Does anyone here know?

[MomWithOCDSon]

Oh man, it will depend on the psychiatrist and how well-versed they are. Anxiety is such a broad-based, spectrum thing, that they could wind up recommended everything from SSRI's to tranquilizers.

 

But remember, YOU'RE the parent! You get to agree that he will or won't be taking a given medication. There are some with relatively short half-lives and more immediate results that may help your DS get through a particularly intense bout of anxiety or a panic attack, like clonapin or clonansepam. But an antidpressant like an SSRI will take WEEKS to build up to full efficacy, and it may not work at all for a PANDAS kid. There's also the possibility that, particularly if given in too high a dose initially, the SSRI could further activate some of the behaviors rather than mediate them (Dr. Tanya Murphy's study). I would tred carefully and do follow-up research before I filled any prescription for psych drugs.

 

But what kind of PANDAS help are you getting right now? Do you have a doctor who recognizes PANDAS and will prescribe treatment for the underlying medical condition, like abx or prednisone?

 

I doubt that there's a single ER in this country that is capable, at this point anyway, of receiving a kid in your son's condition and identifying it as a PANDAS or PITANDS episode, so barring a major fever or other physical manifestations, those doctors aren't going to prescribe anything for the underlying infectious agent, and even if they did, it would likely be only a 10-day course, which more than likely won't be sufficient in your son's case.

 

You might need to take at least one meeting with the psychiatrist, just to satisfy your doctor and the ER that you, as a "fit" parent, are following up on recommended care. And who knows? You might get lucky and this particular psych might be aware of PANDAS and be willing to help you get the care your son needs. But, again, you get to make the decisions so if you're not comfortable with what this psych or any other doctor puts out there for you in terms of treatment, then move on and find another one.

[simplygina]

I took my son to the emergency room last night. He was extremely dizzy, had a headache and felt like he had a fever. With all the behavior changes he has had lately, I really wanted to make sure he was OK. So... of course, surprise, surprise! Everything is psychological and he wants my son to see a psychiatrist. He will be calling me for my doctor's number to talk to him about it. I don't want him to see a psychiatrist. I want to find the cause, and fix that... not mask the symptoms. I don't understand why they can label his tics as neurological, even when they include speaking differently, but baby talk is psychological. Where are they seeing this line between the two?

 

This does make me wonder what kind of meds would they put him on? He has sever tics, anxiety, and lately has been having baby talk and strange toddler like behavior. Does anyone here know?

 

My guess would be they would start with an SSRI. Then likely respirdal.

 

Was it a migraine type thing? Sounds a lot like one. I've noticed that a lot of the kids with PANDAS have migraine type incidents. DS used to have them frequently. When we starting the magnesium supplements and cut out foods known to trigger migraines (for him it was nitrates in food like bacon & salami, others are cheese, & chocolate) they went away. We also realized that too much TV and high action movies (especially in the theater) were triggers for him too. The only one he's had in almost a year was after seeing Avatar in 3D.

 

A lot of times the meds they use don't work well with PANDAS kids. We started with Zoloft before we knew it was PANDAS and a very very small dose does seem to help DS, but the "therapeutic dose" made him so much worse. More tics, manic, couldn't sleep, weight gain, all sorts of problems. And then weaning him off has been an ordeal in itself. The anti-biotics DS has been on the past 3 months have done more for him than we saw the whole year he was taking Zoloft. Improved mood, lowered anxiety, coping skills, flexibility, better relationship skills, more focus. But we did try 3 before finding one that worked well. And the Bontech supplements do help DS's tics, though they don't go away completely.

 

What drives me crazy about the medical field right now is that they still separate mental from physical symptoms. Your brain is an organ in your body. Problems in your brain ARE PHYSICAL. If your brain is sick it will affect they way you think. The baby talk is not an unusual PANDAS symptom. My son did that with his most recent exacerbation in February. Age regression is typical of PANDAS, which is a physical illness. I'm a fan of therapy because our kids need all the tools they can get, but psychiatric drugs will not cure PANDAS.

 

After reading Against Medical Advice I decided that we weren't going to start mixing up chemical cocktails for DS. The side effects are as bad as the problems for most people!

[harpazo_hope]

Oh man, it will depend on the psychiatrist and how well-versed they are. Anxiety is such a broad-based, spectrum thing, that they could wind up recommended everything from SSRI's to tranquilizers.

 

But remember, YOU'RE the parent! You get to agree that he will or won't be taking a given medication. There are some with relatively short half-lives and more immediate results that may help your DS get through a particularly intense bout of anxiety or a panic attack, like clonapin or clonansepam. But an antidpressant like an SSRI will take WEEKS to build up to full efficacy, and it may not work at all for a PANDAS kid. There's also the possibility that, particularly if given in too high a dose initially, the SSRI could further activate some of the behaviors rather than mediate them (Dr. Tanya Murphy's study). I would tred carefully and do follow-up research before I filled any prescription for psych drugs.

 

But what kind of PANDAS help are you getting right now? Do you have a doctor who recognizes PANDAS and will prescribe treatment for the underlying medical condition, like abx or prednisone?

 

I doubt that there's a single ER in this country that is capable, at this point anyway, of receiving a kid in your son's condition and identifying it as a PANDAS or PITANDS episode, so barring a major fever or other physical manifestations, those doctors aren't going to prescribe anything for the underlying infectious agent, and even if they did, it would likely be only a 10-day course, which more than likely won't be sufficient in your son's case.

 

You might need to take at least one meeting with the psychiatrist, just to satisfy your doctor and the ER that you, as a "fit" parent, are following up on recommended care. And who knows? You might get lucky and this particular psych might be aware of PANDAS and be willing to help you get the care your son needs. But, again, you get to make the decisions so if you're not comfortable with what this psych or any other doctor puts out there for you in terms of treatment, then move on and find another one.

 

Thank you very much for your calm reply. I have the same thoughts on the matter but in a more upset and anxious or maybe even angry voice.

 

My doctor is aware of PANDAS. We usually talk about Lyme on our visits though... My son has been on antibiotics for almost a year because he was only one band shy of being CDC positive on his Lyme test... so I guess my son has been treated for PITANDS then? When I called my doctor about the hallucinations and increase in other symptoms, he said that he believes that something is causing it and that he would like to give it time to find out what it is before putting him on meds. He doesn't want to give up on him yet. But, he did mention seeing a psychiatrist, but I know he's on my side on this one.

 

It's the ER doctor that I am concerned about. I feel it may be exactly as you say, that I must prove myself a fit parent.

 

On a brighter side, This morning I have my regular boy back acting his age and feeling well. He said that maybe the dizziness and headaches were just him leaving dream land. I hope so. He also fell asleep in the dark without anxiety attacks.

[harpazo_hope]

I took my son to the emergency room last night. He was extremely dizzy, had a headache and felt like he had a fever. With all the behavior changes he has had lately, I really wanted to make sure he was OK. So... of course, surprise, surprise! Everything is psychological and he wants my son to see a psychiatrist. He will be calling me for my doctor's number to talk to him about it. I don't want him to see a psychiatrist. I want to find the cause, and fix that... not mask the symptoms. I don't understand why they can label his tics as neurological, even when they include speaking differently, but baby talk is psychological. Where are they seeing this line between the two?

 

This does make me wonder what kind of meds would they put him on? He has sever tics, anxiety, and lately has been having baby talk and strange toddler like behavior. Does anyone here know?

 

My guess would be they would start with an SSRI. Then likely respirdal.

 

Was it a migraine type thing? Sounds a lot like one. I've noticed that a lot of the kids with PANDAS have migraine type incidents. DS used to have them frequently. When we starting the magnesium supplements and cut out foods known to trigger migraines (for him it was nitrates in food like bacon & salami, others are cheese, & chocolate) they went away. We also realized that too much TV and high action movies (especially in the theater) were triggers for him too. The only one he's had in almost a year was after seeing Avatar in 3D.

 

A lot of times the meds they use don't work well with PANDAS kids. We started with Zoloft before we knew it was PANDAS and a very very small dose does seem to help DS, but the "therapeutic dose" made him so much worse. More tics, manic, couldn't sleep, weight gain, all sorts of problems. And then weaning him off has been an ordeal in itself. The anti-biotics DS has been on the past 3 months have done more for him than we saw the whole year he was taking Zoloft. Improved mood, lowered anxiety, coping skills, flexibility, better relationship skills, more focus. But we did try 3 before finding one that worked well. And the Bontech supplements do help DS's tics, though they don't go away completely.

 

What drives me crazy about the medical field right now is that they still separate mental from physical symptoms. Your brain is an organ in your body. Problems in your brain ARE PHYSICAL. If your brain is sick it will affect they way you think. The baby talk is not an unusual PANDAS symptom. My son did that with his most recent exacerbation in February. Age regression is typical of PANDAS, which is a physical illness. I'm a fan of therapy because our kids need all the tools they can get, but psychiatric drugs will not cure PANDAS.

 

After reading Against Medical Advice I decided that we weren't going to start mixing up chemical cocktails for DS. The side effects are as bad as the problems for most people!

 

 

Thanks... I don't know what kind of headache...but he also had a stomach ache which often accompanies migraines.

 

I hear you on the mental/physical thing. I don't know how they can draw the line between psychological and neurological only by the LACK of evidence. They can't test for it so it must be psychological... *sigh*

 

It makes me so mad that something can be "typical" and they don't know about it.

[harpazo_hope]

My guess would be they would start with an SSRI. Then likely respirdal.

 

Was it a migraine type thing? Sounds a lot like one. I've noticed that a lot of the kids with PANDAS have migraine type incidents. DS used to have them frequently. When we starting the magnesium supplements and cut out foods known to trigger migraines (for him it was nitrates in food like bacon & salami, others are cheese, & chocolate) they went away. We also realized that too much TV and high action movies (especially in the theater) were triggers for him too. The only one he's had in almost a year was after seeing Avatar in 3D.

 

 

 

After reading Against Medical Advice I decided that we weren't going to start mixing up chemical cocktails for DS. The side effects are as bad as the problems for most people!

 

Thanks for bringing up the TV too. I had a hunch I should limit video games. The boys have been playing a lot of Guitar hero...so it's been turned off for a while. Now we're going for a walk. It's been 2 hours of having my normal boy back. I 'm hoping he stays.

[dcmom]

I am a 100% advocate for treating pandas, medically, first and foremost.

 

But- our psychologist has been a great resource for me and my girls.

 

If your son is not seeing a psychologist- you may want to consider one to help discuss coping strategies for the anxiety, and other pandas symptoms.

[Chemar]

I am very wary of psychiatric meds for kids with developing brains and not all that much research on their age group with these strong medications. Some of them even carry black box FDA warnings about the potential for serious side effects in young people

 

I also tend to have negative bias against them because of the very serious side effects that my son had from them

 

from our experience, most psychiatrists tend to just prescribe drugs, whereas behavioral psychologists work with the child to develop coping skills. My son benefited greatly from Cognitive Behavioral Therapy, tho it did take me "interviewing" a few therapists before I found one that was a good fit, and that was quite by chance when he went to see another doctor.

 

as you are still checking into what is causing the regressive behavior and if it is just related to the Lyme or possibly a co-infection etc., I would agree with following your doctor's lead on waiting before adding those strong drugs into the mix! and rather work on finding the causes of the behavior, especially checking re possible strep co-infection.

 

from everything you have posted before on the TS board, it sure seemed to me the Lyme sounded like it was the trigger for the neuro-psych symptoms he is dealing with, and a co-infection may well have pushed things over the edge to cause that exacerbation

 

if it is any consolation, when my son was in crisis and rushed to ER, I too was bullied there about him needing the psych meds to "have a normal functioning life" ............and that is how we started down that disastrous path that directly caused the worst year of his life .......

 

Thank goodness your regular Doc already feels it wise to wait so he is on your side. I had them coming at me from all sides (pediatrician,neurologist, school and psychiatrist) and I was so desperate to help my son, I caved to the pressure and will likely always beat myself up over making that decision, even tho I know I was only trying to help him. But I had no peace over the decision and felt unease when they brushed aside my concerns over the potential side effects....................

 

so from one mom to another, trust your instincts on this!

Edited May 6, 2010 by Chemar

[smartyjones]

lately has been having baby talk and strange toddler like behavior. Does anyone here know?

 

have you checked into yeast being the culprit for the baby talk/toddler behavior. when my son first presented it was with yeast behaviors.

 

if he's been on abx for a while, it could be a possibility.

[harpazo_hope]

lately has been having baby talk and strange toddler like behavior. Does anyone here know?

 

have you checked into yeast being the culprit for the baby talk/toddler behavior. when my son first presented it was with yeast behaviors.

 

if he's been on abx for a while, it could be a possibility.

 

 

I have thought of that. He had been on diflucan for many months, but has been off of them the last two months with continued antibiotics. This would be the only major change in his treatment.

[harpazo_hope]

so from one mom to another, trust your instincts on this!

 

 

Amen! I am not in a hurry to have him medicated. I am even leery of behavioral therapy... I guess I should do more reading on that. But as for meds... how can I find the cause if we are masking the symptoms?

 

I'm sorry you had to deal with bully doctors. I've dealt with that too, and it's hard. After talking to the ER doctor this morning, I am not too worried that they will be pushing for meds. My son was well (and still is 7 hours later!!! :-) when he called, and he mentioned maybe not needing a psychiatrist just yet, but that he should be evaluated.

 

I don't know what to blame. Maybe he has PANDAS too? Yeast? His doctor does think he probably has Lyme, but his western blot was one band short of being CDC positive. Whatever I might think it is, the ER doctors aren't going to buy it.

 

As for yeast, he has only seriously had reactions to diflucan. He doesn't herx when we switch antibiotics like I do.

[PacificMama]

Hi,

If your son is one band short of cdc positive for lyme, then he most definitely has lyme disease. CDC positive is simply a technicality for purposes of reporting. It sounds like your doctor is open minded, but possibly not very experienced with lyme disease. I can tell you that all of the symptoms you describe are most certainly neuropsych symptoms that can be caused by lyme disease and coinfections. I would strongly urge you to contact the following lyme disease association and ask for a doctor referal. www.ilads.org A very experienced lyme doctor will help you sort through this, and will consult with your current doctor as well. I would hate to see you go the route of psych drugs, when perhaps a change in his antibiotic protocol is all that is necessary.

 

I do not post here often these days, but you can search through my older posts, or those of Lyme Mom, for more information. Or PM if you'd like.

 

Good luck.

[harpazo_hope]

Hi,

If your son is one band short of cdc positive for lyme, then he most definitely has lyme disease. CDC positive is simply a technicality for purposes of reporting. It sounds like your doctor is open minded, but possibly not very experienced with lyme disease. I can tell you that all of the symptoms you describe are most certainly neuropsych symptoms that can be caused by lyme disease and coinfections. I would strongly urge you to contact the following lyme disease association and ask for a doctor referal. www.ilads.org A very experienced lyme doctor will help you sort through this, and will consult with your current doctor as well. I would hate to see you go the route of psych drugs, when perhaps a change in his antibiotic protocol is all that is necessary.

 

I do not post here often these days, but you can search through my older posts, or those of Lyme Mom, for more information. Or PM if you'd like.

 

Good luck.

 

 

Thanks... I do believe he has Lyme... congenital lyme to be exact, and my doctor is treating him as though he does have lyme. My doctor is inexperienced, but he is the only MD in my state that will treat lyme. There are naturopaths and others that my insurance do not cover. I think I am going to ask him to call the famous lyme pediatrician out East. I heard he will consult with doctors over the phone.

 

Thanks for caring.

 

 

I had to come back with the band thing... It's so hard to be telling people we have Lyme when technically our western blots have been negative, and our doctor has never diagnosed my son with Lyme. I have been because I had a positive screening test.

Edited May 7, 2010 by harpazo_hope