My sweet boy is BREAKING MY HEART!

[Dedee]

My 14 y.o. son has had PANS for about 5 years. Fortunately he has been the mildest of my three kids and the easiest to manage. Initially, we only needed to treat the initial illness and his OCD and anxiety symptoms would resolve. For a few years he only had a mild low level anxiety and OCD that was what we considered "manageable", especially considering what we were dealing with the other 2 children. About 2 1/2 years ago it got a little worse where the anxiety was more consistant. So I took him to our PANDAS specialist and got long term antibiotics and more testing done. The antibiotics didn't seem to help and his Lyme test was highly sugestive. So off we go to the lyme specialist where his sister had already been. At that time he was diagnosed with lyme and most likely bartonella and started treatment which seemed to help him right away. During this time we had also started him on low dose Lexapro while waiting to get into the LLMD because his OCD was so bothersome and we had to wait a while. With all the treatment, things settled down and he had been doing really well since that time. He is wonderfully sweet boy who makes straight A's. He is in the gifted program at school, plays sports, is very social and never ever a problem for me.

 

About 3 weeks ago he told me he felt his anxiety was coming back. I talked to his LLMD and she recommended a herbal supplement for anxiety. This didn't help at all. I tested for strep and it was negative. About a week later he comes and tells me that for the last month he just doesn't have any real feelings....can't feel happy or sad, just feels disconnected from everyone. Said things that used to make him happy, don't make him happy any more and he just can't get excited about doing things with his friends anymore. So I call his doctor and we increase the lexapro. 3 days later he tells me he feels like he has no reason to live. OK...another call to the doctor and she say back off the lexapro and lets call psychiatry. Meantime, I'm still talking to the LLMD who has me asking him questions about physical issues. He denies any physical changes and the LLMD doesn't think it's a Lyme/bartonella/PANDAS flare.

 

I have an appointment with a Psychiatrist on the 27th. I have no idea if he is PANS friendly or not. Frankly I don't need validation at this point, I just need someone to save my son. I won't allow anyone to take him off his antibiotics. I just need help to titrate him off the lexapro and start a different SSRI. I have a good friend who is a physician (my next door neighbor). In talking, we both believe this is most likely a side effect of the lexapro. He says he has seen it in his practice where people complain that the lexapro makes them feel numb, without feelings. However, because of his extreme anxiety and some of the feelings he has expressed to me lately (feeling extremely overwhelemed with moving to the high school, etc), I am very worried about just abruptly stopping it all together. I have decreased the dose but it hasn't seemed to make a difference. I talk to my son every day and he is usually so happy. Last night he cried so hard and it broke my heart. I made him promise he wouldn't hurt himself. He says he isn't thinking about anything like that but how do you know for sure? I don't know what to do to help him. This is so out of character for him. He always worries about doing things right and pleasing people but he is usually the happy one in the family. This is just killing me. Does anyone have any ideas on how to get us through the next week?

 

Dedee

Edited August 19, 2013 by Dedee

[beeskneesmommy]

Hi. i felt like my heart was breaking for you when I read your post. in am so, so sorry! It sounds like at one time your son responded well to SSRIs, not always the case for our PANS kiddos. It is not unusual that SSRIs need to be changed after time. I have not practiced in almost 7 years, but when I did, Celexa was one that was often helpful with the kiddos I worked with. There may be something better on the market now. I am not a physician and I am certainly not giving medical advice. rather, just a thought to bring to the psychiatrist -

 

Here is an article about "SSRI-induced indifference"

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989833/

[LNN]

Oh Dee, I'm so sorry! I know how terrifying it can be and it's something I fear too. You've been at this long enough to know the obvious, so it's hard to know what more to suggest. if you're doing any methylation support, you might re-examine dosing. I think I told you how earlier this year, before I knew I was CBS +/-, I was taking NAC for a cough and it ended up making me horribly depressed and elevated my liver enzymes to a concerning level. I stopped it and the depression lifted. But all summer, I had no drive. I wasn't depressed, but normally I have long "to do" lists and find pleasure in crossing things off, "accomplishing" things. This summer, my to-do list was untouched, and even work tasks got pushed aside for as long as I could manage.Very unlike me. A few weeks ago, I added a B complex (took me a long time to find one w/o B9 and B12). This weekend, I went nuts attacking projects that had languished all summer. I finally feel like myself again.

 

My point isn't to rush out and get a B complex. You're instincts about the SSRIs are probably dead on. I only mention my anecdote because it might help to just re-examine everything he's on and consider any tweaking now that he's further along in lyme treatment, having puberty and growth effect dosing, hormones altering the balance of things...

 

You're both in my thoughts!

[peglem]

What I found over the years is that when a treatment began working, when healing began to take place, we started seeing SEs from medication we had been using to deal w/ symptoms. So, maybe this is a good sign?

[Dedee]

Thank you all for your replies and support. I have wondered if it is possibe since he is healing that he doesn't need the Lexapro anymore. I was also worried that one of the supplements I was giving was causing cyst busting (I stopped that one). There are so many variables at play at this point (antibiotics, genetic SNP's / methylation, SSRI's, supplements, yeast, detox, hormones..) it is very difficult to know where to start tweaking. I am looking closely at the supplements that he is taking for methylation due to his SNP's. That can play a huge role in neurotransmitters. I can just see me trying to explain that one to the Psychiatrist. Oh, goodness...why does this have to be so complicated?

 

Dedee

[MomWithOCDSon]

So sorry to hear this DeeDee! We've had moments as you've described . . . heartbreaking sobbing from our 14, 15, 16yo DS, and it is so hard to stand by and feel helpless!

 

We weaned our DS off Lexapro almost 4 years ago now and having been through that process, I will tell you that I don't think your average psych has any idea how coming off of these substances feels and/or impacts a person. They read the literature and they say, "Oh, there's very little issues with weaning off" this one or that one, but they are almost always wrong. If I had it to do over again, I would wean our DS off the Lexapro very, very slowly as I truly think that this too-abrupt chemical change combined with strep to push our DS over the edge all those years ago. So now, I would take whatever the psych/doc recommends, and divide it in half, literally. So if they say titrate down 5 mg. for three days, and then down another 2.5 mg. for the next three days, I would titrate down 2.5 mg. for twice as long -- a full week -- before I titrated down again.

 

When our DS went through that weaning, he was still too immature and, quite frankly, too crazed by antibodies/inflammation to communicate to us what the external chemical changes were doing to how he was feeling, but it sounds as though your DS has the skills and the ability to communicate with you about that. I would follow his lead. I have another family member who was weaned off another SSRI (not Lexapro), and the doctor once again tried to "speed-read" him through the process. He wound up having such horrible side effects from the weaning, however (nightmares, vertigo, bursts of uncontrollable emotion) that he decided on his own to titrate more incrementally and more slowly. It still wasn't smooth going, but taking it on his own schedule was, in the end, far better a process than doing it on the doc's calendar.

 

I read a biography once by a writer mom who's son was diagnosed PDD-NOS when he was quite young . . . 4 or 5. The doctors prescribed a whole host of medications, including SSRIs and ADHD stuff, to try and help modify the boy's behavior in academic settings, etc. This mom refused to give him anything until she had tried it herself, to see what it felt like in her own mind. I often think that psychs should be required to do something along the same lines before prescribing to us or our kids and opining, sometimes quite blithely, about how there are no real side effects, or ceasing the medication will not cause any issues, etc. I mean, really! How would they know?!?!

 

I'd also like to suggest that if you have a good friend with a "normal" kid around your DS's age, it might help you to compare some notes with her about the emerging teenage behaviors. For a long time, I attributed most everything to DS's PANDAS or anxiety, and then I started comparing notes with some of his friends' moms. Apparently, even among teenage boys, outbursts, sobbing jags, alienation, despondency . . . not protracted but on occasion, can be part of the equation, especially for the brighter, more sensitive kids. That's not to say that your son's depression should be minimized, but only to suggest that maybe at least a little bit of it is being contributed by hormones and the life stage, and then perhaps exacerbated by brain chemistry or illness?

 

Hang in there!

Edited August 19, 2013 by MomWithOCDSon

[T_Anna]

LLM, What B complex are you using?

 

T.Anna

[LNN]

My DH and DD are MTHFR +/- and so they take methylfolate and a methy+hydroxy B12 sublingual. But that means they can't take a traditional B complex that contains folate and/or cyanoB12. I finally found a B Complex that has all the other Bs except the folate and B12 -

http://www.amazon.com/Nature-Made-Complex-100-Caplets/dp/B0013NB71E/ref=sr_1_7?ie=UTF8&qid=1376942272&sr=8-7&keywords=nature+made+b+complex

 

It doesn't use mega doses either - another plus. Tho the label says it contains 1000% RDA of this and 500% of that, many B Complexes contain much higher doses.

 

Tho I'm MTHFR -/-, I find that I feel better when I use the methyl forms of these vitamins too. So I started this B Complex about 3 weeks ago and it was over the weekend that I realized I felt better. So it wasn't an immediate "AHA" but this is the only change I made. I think that with supplementing only the B9 and B12 for a time, I might've gotten too low in other Bs when I stopped my multi-vitamin. I think this stripped down B Complex is helping re-balance things.

[Dedee]

My son is MTHFR C677T homozygous among other things. I have been careful with his B vitamins and folate but have wondered lately if he may not be getting enough methyl folate. He gets about 500 mcg per day.

[tpotter]

There have been several times my DS(now 17) has told me that either he felt disconnected or was depressed. Would start suddenly. Each time I associated it with having run out of 5-htp or tried to back off to see if it was making a difference (but didn't tell him), and sure enough, when I started him back on 5-htp or upped the dose, he was fine again. So, could 5-htp help (we do 2 in the pm, and 1 in the am), or something like it?

[LNN]

My son is MTHFR C677T homozygous among other things. I have been careful with his B vitamins and folate but have wondered lately if he may not be getting enough methyl folate. He gets about 500 mcg per day.

There's only one way to find out. A bottle of folapro in one hand and a bottle of niacin as the antedote in the other! Guinea pigs R us....

[JAG10]

I agree with Peglem.

Fingers crossed!

[Dedee]

So last night he told me that he felt like some of this was possibly OCD. When I asked why he thought that he said that he was feeling so much pressure to make all A's in school because his mind was telling him he had to do perfect in high school (this is his first year in high school) in order to get into the right college. He said he felt he couldn't get any B's or he wouldn't get in the right college. But at the same time he felt that if all he was ever going to do was study and never have fun then what is the point in living. I told him that his Father and I do not expect A's all the time but he said he had to do it because it was his expectation. We talked about balance in life and so forth. He says he understands that but his mind won't allow it. Sounds OCD to me too.

 

He is very pitiful. Crying when we talk about balancing fun and studies. He wants to play and have fun but part of him can't feel excited and the other part tells him he can't because he must always be on top of his courses or he isn't doing his best work. Please understand, we do not put pressure on our kids to perform at this level. He has been completely independent in his school work since 3rd grade, needing no prompting or assistance with his homework. He has also never made a B on his report cards. Always made A's. I am not bragging here. On the contrary, I wish this child felt he could relax enough to make a B without it being the end of the world. I think it is just now getting to him because now he has hit high school and he feels the pressure that these grades are the most important and will follow him through life(that's what they keep telling them at school). That's fine to tell most kids, but definitely not an OCD kid.

 

He also said he had actually thought about how he might take his life if he were to ever decide to do it (with pills). However, he said he could never actually do it because it was a sin against God and that was something he could not do.

 

This is just killing me! The only good thing is that he is actually talking to me and not holding it all in. I am just scared to death for my poor boy. Our appointment is a week from today. I will try the HTP tonight. I am also going to talk to his LLMD again and see about changing his antibiotics. I wasn't thinking about this being so much related to his PANS until I recognized the OCD in it. I will just talk to her and see what she says. Thanks for everyone's support.

 

Dedee

[LNN]

D - my son's friend has perfectionist OCD. At first my son thought this would be a good kind of OCD to have (if you had to have it at all) because it makes his friend driven and accomplished. But it can be it's own torture for sure. Do you have any therapist who could help you develop some sort of ERP around failure?

[MomWithOCDSon]

DeeDee --

 

I'm with LLM on the ERP for perfectionism/failure. It truly does sound rife with OCD to me.

 

Just a little more experience/color on the OCD and high school, too. We've had to have LOTS of discussions at home and some therapy sessions, as well, with our DS about how much of the information that's conveyed at school is, by design, aimed at the "lowest common denominator." That the health classes, drivers ed, college guidance, etc. use a lot of "Never"s and "Must"s and hyperbole because they're trying to get through the thickest of skulls (the "average" teenage boy/girl). That these cirriculums, assemblies, teacher instructions, etc. are not designed specifically for DS, and he has to learn how to extract the reality from each, rather than being such a literalist.

 

Does your DS have a 504 or an IEP? What we've also found to be helpful . . . because it's more proximate and "in the moment" for DS, is that his IEP gives him access to a school psychologist. So he doesn't have to come home and take DH's or my word for it, or his therapist's word for it, that when his chemistry teacher said this test will make or break his course grade, that's not entirely true. The school psychologist is on site, knows DS, knows his teachers and can help DS tweeze out the nuggets that he needs and set the other, unhelpfull stuff aside.

 

I'm so sorry you and your DS are going through this, but you're right in that his willingness to share his feelings with you so openly is a gift in the midst of this temporary madness. You're a great mom, and he's a great kid and you guys will get through this!