Depression/suicide

[Rain]

I have been away from this forum for a long time, but now need some help. My DS14 was diagnosed with PANS nearly 5 years ago. Since then we have had ups and downs. He has had antibiotics, IVIG, steroids etc. He was a patient of Dr. K and now a patient of Dr. T. I feel like Dr. T and Dr. K have saved his life. Sometimes he has no symptoms at all. Usually he is about 85%. We have declared 85% is "good enough" most of the time.

 

Recently he has been depressed. No significant increase in OCD or other classic PANS symptoms. I don't think there was a specific trigger - but he admitted to picking up a knife with the intent of committing suicide. Dr. T recommended some counseling. The first counselor we saw said he needs a psych eval - and the counselor will not work with him unless he is evaluated by a psychiatrist. He has seen three psychiatrist in the last 5 years - and every time they just want to medicate him, and are not supportive of a non-medicated approach to therapy. I don't want to be a bad mom here - I have nothing against meds per se. I just know that most PANS kids do not do well on many of them. My son does not want to go on meds. I think if we forced them, he would be really mad, and probably even more suicidal. (I have tried to tell him we would go low and slow - but he will not be persuaded. Maybe it is an OCD thing.)

 

My questions:

Broadly - what do you think I should do?

Are there supportive psychiatrist out there? If so, how can I find one?

Are some medications tolerated well by PANS kids? Which ones should be avoided?

 

Background - He has gone through puberty. At first I was optimistic that we were seeing the end of PANS - but obviously things are bad now. He is currently on a full dose antibiotic (Suprax) - initially for a sinus infection. He has been on that for about 70 days now. His blood titers for things like strep and mycoplasma have only improved in the last few months. There is no Lyme (tested many many ways and times). His blood indicates chronic sinusitis - but also appears to be improving. We will probably try one more IVIG this summer - but at his age it may not work. About 6 months ago he developed a facial tic - which was a new symptom for him. We saw a neurologist who prescribed Guafacine. My son did not want to take it - so we did not force it. The tic is hardly noticeable - so we just chose not to fight that battle.

 

Thanks - I appreciate any help you can offer!

[MomWithOCDSon]

I know you don't want your actions to backfire, but no matter how bright or self-aware your DS is, he's still just 14. So I think I would do my best to incorporate his concerns and honor his feelings, while at the same time letting him know that your goal is to help him feel better . . . less depressed, more functional. I don't know that psych meds have to be the end-game, but if an evaluation will help him get counseling, then that's the next appropriate step.

 

We're in the Midwest so likely our PANDAS-savvy psych would not work for you. But we found her through the "Find Help" function on the International Obsessive Compulsive Foundation's web site:

 

https://iocdf.org/find-help/

 

I know you say that OCD isn't a big part of your DS's symptomology these days, but since the IOCDF has more recently embraced PANDAS as a viable disorder, perhaps the professionals listed through them are generally more amenable and knowledgeable? And maybe you can find someone in your area?

 

I just picked up the phone and started with telephone interviews of psychs in our area. I managed to find one who accepts and seems to understand PANDAS in terms of med dosing, and who's also "into" current research, reading new papers and keeping current rather than relying upon decades-old psychiatry or the recommendations of pharmaceutical representatives. We've been with her for almost 5 years now and have been very pleased.

 

There's another recent thread here about SSRIs and PANDAS patients, and like everything else, response to meds appears to be entirely personal and on a case-by-case basis. My DS does well on low-dose Zoloft, and I know that there are some others who find Prozac supportive. You'll also see stories of families for whom SSRIs did not work well at all. A good psych will take everything into consideration and hopefully, if they recommend meds at all, will honor not only the "low and slow" but also your and your DS's feedback regarding his response to anything you might decide to try.

 

Lastly, you mention the current abx but not much else in terms of supplements, etc. My DS also had chronic sinusitis and we wound up keeping him on abx for about two years, full time, before we were able to successfully wean him off without a big back-lash of behaviors. We suspect he had some strep hiding out in his sinuses . . . potentially protected in biofilms that were tougher for the abx to break through, or potentially even impervious to them. We added NAC to his supplements and that seemed to make a big difference; there's some research indicating that it can act as a "biofilm buster". NAC is another one of those substances that some people react well to and others don't, but just thought I'd mention it. Also wondering if you've tried quercitin (anti-histamine properties) or inositol (serotonin-booster) and/or similar supplemental items? If so, make sure to share that with your psych, as well, since he/she may choose to tailor any other suggested responses, as our does.

 

Good luck!

[LNN]

There are many genes that impact how our bodies make and use neurotransmitters and that's one reason some meds work for some and not for others. One (of I'm sure several) processes that the body goes thru to make neurotransmitters is DNA methylation. It's an interactive cycle of about 30 genes that occurs inside the mitochondria of every cell in your body. it's the essential process of making cell energy.

 

Of the 30, there are a few that really play a big role in serotinin and dopamine - these genes are supposed to spin at a certain "normal" rate. When they spin more slowly than normal, they may not produce enough neurotransmitters to keep you feeling balanced. Some other genes spin too fast, using up the neurotransmitters and the raw ingredients too quickly, so you don't have enough "in stock". An SSRI slows down the speed at which neurons re-uptake (reabsorb) serotonin and leave you feeling a little more balanced. So they're not "evil". The biggest problem is that there's currently no way to know which SSRI may work for you and many patients find the process of building up over 6 weeks - and possibly tapering down for 6 weeks if it doesn't work - too frustrating. But, is it better than suicide?

 

That said, you can do a test called 23andMe (there are other companies as well) that will tell you the status of these genes and if they're spinning too fast or slow. By adding certain raw ingredients - or avoiding certain foods that introduce the wrong ingredients - you can sometimes get the spin right better adjusted.

 

For example, my daughter used to have rapid mood swings. She has a mutation on a gene called MTHFR that makes it hard for her to process vitamin B9 and make serotonin downstream. By giving her a special form of methyl-B9, her mood swings are a thing of the past. My son has a mutation on a gene called MAO-A which leads him to have too much epinephrine and dopamine and this leaves him angry and impulsive. Niacin (vitamin B3) helps the body make more MAO-A enzymes and this helps him use up that excess dopamine/epinephrine more quickly - it mellows him out. I overslept this morning and my husband had the task of getting my son's morning vitamins together. He was't too sure of himself, so my son said "Dad, forget everything else. But find that pill that keeps me calm". Copper also slows down the spin rate of MAO-A

 

MAO-A is also involved in depression. You may have heard of MAO-I's - a class of antidepressants. These work by slowing down the spinning so that the body doesn't use up it's neurotransmitters too quickly. MAO-I's lift depression by keeping more feel good chemicals in the system, in a different way than SSRIs but the same concept.

 

But the thing is, because my son has an MAO mutation that runs slow, taking an MAO-I would be really bad for him, because it would slow things down even more and leave him flooded with epinephrine/dopamine and raise his aggression/fight response. My daughter's MTHFR mutation means an SSRI would probably work well for her. So knowing the status of their methylation genes has enabled me to give them vitamins and minerals and amino acids that help their bodies achieve a better, more "normal" balance. But what's good for one would be bad for the other. Until we did the testing, we were just throwing things at the wall and seeing what stuck. So if you and your son feeling so strongly against meds, this would be an alternative to consider.

 

However, depression is something to take seriously. You may want to talk to your son about giving an SSRI a try until you both have a chance to do some homework. Or, try adjusting his diet toward foods that are high in tryptophan, which can raise serotonin. SAMe and 5-HTP are also supplements that help some people - but again, genetics is what determines whether these supps help longer term. Counseling is also very important. IMO, the person insisting on a psych eval is just punting the ball down the field in a CYA sort of way. I second the suggestion to go to IOCDF's site to see if there's a therapist in your area who might be able to help with a shoulder to lean on. www.ocfoundation.org

[rowingmom]

I would suggest you investigate the coinfections, especially bartonella. It is notorious for causing psychiatric issues. My own suicidal ideation came to an end when I started treating myself with the same herbs I am giving DD13 for bartonella.

 

Bartonella, babesia, ehrlichia etc. are all stand alone infections and are highly immune suppressive. Lyme need not be present.

 

http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

[WorriedDADNMOM]

Thoughts and prayers your way.

 

Quite a different story than yours but 6yo dd high titers to myco p and strep now 11yo. Pans/Pandas. We have seen great improvment and help with lithium orotate for mood stabilty and St Johns' Wort for mood improvments.

 

One thing that struck me was " His blood indicates chronic sinusitis". Not sure what this means, but we had ramp up in tics with dd exposed to another family member where they had to scrap his sinus cavities where they "had found a strain of strep" I am not sure about a strep carrier, but I would wonder if this is something worth pursuing with and ENT Doc.

 

Also, we have been using Xclear nasal spray as it is supposed to be anti-microbial, moisten the nasal passages and sinus and hopefully help things stay moistened and moving thus preventing build up of mucous and repeated colds and infections.

 

Additonally what LLM and MOM is talking about. Getting to a good Integrative doc to do bloodwork on various vitamin and mineral excesses or deficiencies can have major effect on how serotonin production works would be another piece to look at. We have chosen to do all the "natural" stuff and have been happy with it. Our kiddo(s) just need all the high octane fuels for her to be at top peak performance if you will.

 

Again, similar but different stories. So I hope this helps. I will send some vids via PM.

 

Best of luck!

[Wombat140]

All the above sound good to me.

 

It's possible that however much you try to argue the case, he may simply have an OCD problem with taking SSRIs - I did, until very recently, and I know it would have been pretty disastrous if anyone had forced me to take them, even once.

 

Just wanted to add a quick comment that things really started to get to me a few weeks ago, although like your son nothing was particularly worse than usual - but I'd got to the point where I was tearful and suicidal before I even got downstairs in the morning. Just on the off-chance I tried taking a B complex (not a high-dose one even, just ordinary Healthspan brand) and a 1000 mg of flaxseed oil that were lying around - I wasn't taking any of either at the time, these were my mum's - to see if it would help with anything. And if you'll credit this, within an hour or two I was feeling a lot better. I don't think the OCD got noticeably easier, I'm sorry to say, but it didn't get to me so much, and that lasted for the next 2 or 3 days without me taking another dose. May have been coincidence or placebo, who knows, but it kind of makes sense - mental activity consumes various B vitamins, that's a fact, and OCD like mine is very hard mental work all the time, so possibly I'd just exhausted my supplies in some way. I'm taking that regularly now.

 

Obviously the testing and that that others have recommended will be better still if you can manage it - I've heard that with methylation issues the best results often require taking some B vitamins and not others, and without testing you can't tell which - but I've got a needle problem and we're still waiting for the 23andMe test.

[Rain]

Thanks everyone.

[reactive]

I think this interesting, as my DS is also 14. We just went though this in the Winter. He had IVIG in August 2014. Depression was transient for him...just like religous OCD was several months before that...now he cusses like a sailor.

That being said, I am all about not just standing by. We had DS on Paxil and his depression worsened. We then had to wean him off that which was a bear. He is now on Celexa and is up to 20mg. I wouldn't have picked that SSRI if I would have realized at the time it can cause prolonged QT...he is thinking about cross country running.

 

To be honest, he thinks the Celexa helps. And he is not currently depressed or suicidal. But IMHO I have never observed an SSRI or dose increase of one to help my DS. As a matter of fact, I have never seen anything improve him as much as prednisone. Not SSRI's, not antibiotics, and not IVIG. It was that dramatic.

 

Of course, we are still searching for our trigger here for PANS. Just wanted to chime in. I think if someone is having suicidal thinking, all treatments need to be aggressive, but there is an FDA warning for SSRI use in teens and kids for a reason. Proceed with caution, but proceed nonetheless.

[Chgomom]

A William Walsh practitioner will analyze what's going on. They believe mental illnesses are due to nutrient imbalances and methylation problems, etc. This type of "getting to ht root of the problem" approach makes sense to me. Here is a list of doctors trained in this approach: http://www.walshinstitute.org/clinical-resources.html

Watch his videos on mental illness and here is an article about more: http://latitudes.org/dr-william-walsh-autism-ocd-pandas-depression-methylation/