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tu4four

Acceptance-- Long

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This is a strange and awkward topic title because I am not sure that there will ever be acceptance of this in my heart. I love my daughter. She has a heart for little kids.and special needs people. But there must be functionality in life, in our home.

 

Three years ago I was on this board a lot. We saw doctors (llmds) in Missouri and Colorado, immunologists in Plano and Colorado, neurologists in Houston, and, of course psychiatrists where we live as well as a functional med doctor where We live. We had terribly expensive phone consults with doctors in New Jersey and Illinois. She has taken all kinds of antibiotics and an entire pharmacy of anti-virals, cbd oil, anti-fungals, vitamins, detox aids, probiotics, etc. she has given what felt like gallons of blood to be testes as well as stool samples and urine samples. She had a lumbar puncture, eeg, MRI, etc. Sometimes we got results that made us think "aha!", yet nothing improved. We have done everything we can short of ivig because, even though it was recommended of course insurance wouldn't pay for it, and we just could not afford a procedure that may or may not work and that we might have to do over and over again.

 

So here we are with my almost 15 year old lovely daughter. Her last psych evaluation (and we have to live in the psych world to achieve any level of functionality) gave her the diagnosis of depression, autistic spectrum disorder and conduct disorder. Her current therapist, psychiatrist and I do not believe that conduct order is correct, but she is certainly very oppositional. The evaluator said that she had diagnosed people in prison for violent crimes and that we should hide all sharp objects and meds. She has been very aggressive with us at times over the years, certainly verbally aggressive a lot of the time and often has seemed suicidal. She has been on meds for years, but we have yet to find one that makes things more than somewhat manageable.

 

Previously, she has been diagnosed with pdd-nos, gad, OCD, mood dysregulation disorder, bipolar.She cuts herself and has left light scars all up and down her arm. She listens to music that i have told her not to that has explicit lyrics, whatever consequence I give, she does not follow. She has absolutely no internet access because every time she gets it, she contacts boys through sites like pandora and my lol, etc and starts VERY GRAPHIC sexting. and I this is from a kid who has only been homeschooled or (when much younger) in a very small Christian school. Three weeks ago she became angry over me asking her to wash the dishes. She really didn't even seem angry (because her angry is explosive). She seemed like she was looking for an excuse. She left the house, despite the fact that I told her not to. We have been through this too many times to count, so I left her alone thinking she would come back quickly, as she usually does, and we would deal with it then in terms of consequences ((which actually don't work with her--just serve to enrage her). I was upstairs cleaning up her room because we were having company come over for a surgery I was having. I happened to look in the corner of her drawer and found two notes to a real life boy who lives in our neighborhood and is a friend of her brother. I couldn'5 believe my eyes. She was saying she was shy and didn't really know how to say this but wanted to have sex with him. That he had asked her previously and that even if he didn't want anything to do with her after to just not tell her that. It had now been 45 minutes since she left home. I immediately left the house searching for her and quickly found the boy and a friend. They said she was following them. I kept looking and eventually saw the boy walk into the woods while the other seemed to stand guard for a minute and then went in. By the time I could get my car parked and situated, they were in another area and I found her in the woods. She said she wasn't coming home. When I asked her why she said she didn't know, she just wasn't.

She came home several hours later, way after dark, and did the same thing the next night. Has not done it since.

We talked to one of the boys this weekend, and he said that my daughter and that boy had had sex and showed us where they had been (out in the tall grass by a water treatment plant)

 

During that week, a couple of days she had been especially chipper--even friendly toward me. She was talking a mile a minute--so much so that I mentioned it to a couple of people who had seen her and asked if they noticed it. This seems very much like a manic episode with hypersexuality. (She has had periods of trying to hide our phones, get old phones, etc and look at photos, sext for the past 3 years or so. In two of those episodes, she asked the boys what they would do if she got pregnant--I believe she wants this to happen. She has also told them what city we live in despite the fact that I have told her about Sex trafficking and how quickly someone with just a little tech savvy could find her)

 

The other day she told me she was going to college at my alma mater (in another town), said, no, we couldn't come and did we think she could live in the dorm (all in one breath). She has been begging me to let her take driver's ed when she is 15 so she can drive at 16, but I can't trust her with a skateboard for transportation, so a car....

 

 

This is my lovely daughter who can do very little work independently (she has a 130 iq but cannot regulate herself enough to do much work and cannot cooperate enough to complete all her work).

 

We have been working hard. And waiting. And hoping that something would help. But she is now almost 15, and I know that when she is 18, she is going to want to fly the coop like her older sister did. I am now at the place where I do not wonder. Barring some miracle (which I am totally begging God for and know He is capable of), I strongly believe that she will not be able to safely live independently--not to go off to school, live in her own place, etc. I do not see a time when I will feel comfortable allowing her to drive or pay her own bills or take her medicine or basically care for herself safely. Of course, she is not mature enough to see any of this and will likely run away.

 

So I am now a mom on a different kind of mission. She is homeschooled--I cannot put her in the public schools for many reasons but primarily because she has no filter, goes through this hypersexuality and cannot be trusted to come home independently, etc. I have called a therapeutic day school and will tour them in the next couple of weeks. They are outrageously expensive; there is no way we can afford them, but again, I know that God can make anything possible. Maybe there will be some kind of grant of combination of grants that would allow us to send her to this school that has people work with the students toward a greater level of independence and even helps them with college.

 

My second hope, and I am not having much success here, is to find another older student who can sit with her for two hours three times a week to help ease her into doing her independent work. (I also Homeschool her two younger sibs).

 

And finally, I have tried to steer clear of this because of labels and because we want to take care of this on our own. But I am looking at the possibility of ss for a child with special needs. I am really at the beginning of that process but am realizing that as she gets older we are probably going to have to use an outide helper to help us move her toward a better level of responsibility, independence and safety in her life. She has to have a purpose...she can't wander around for the next 50 or 60 years out of sorts and with no reason to get up. Yet, at this point, I do not believe she will be able to get herself to and from a responsible job. I want to give her all the help that I can to get her to a level of independence that is fulfilling to her, and maybe we can move into a house that has a garage apartment. Although giving her that much freedom even seems like a stretch right now. Most of her life, she has had to sleep either in our room or at least downstairs because she seems to always get into something big when she stays upstairs.

 

Thanks for reading this long, sad story, and I'd love to hear about any of your similar experiences and what worked/didn't work.

 

Love to you all. Nobody works as hard and loves as hard as mamas like us....

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Tu4four --

 

I am so sorry about what you've been going through and where you are now. It truly is heartbreaking. Some of your DD's behaviors and issues sound very familiar to me, and others less so, as my DS's deepest, darkest part of his journey happened at 12 through his early teens, and that is definitely very challenging! I don't want to add to your despair by suggesting yet more avenues/considerations, but just in the event something in our experience has slipped past your care team, etc. . . .

 

Early on, my DS, too, had diagnoses such as ASD, Aspergers, OCD, and PDD-NOS; he could be defiant, but not really self-harming. Fortunately, he responded well to abx, but that was only part of the picture for us. He really needed that psychiatric component -- both meds and therapy -- to re-achieve the potential the PANDAs tried to steal from him.

 

One thing that really helped him turn the corner was the addition of Lamictal to his medications; is this something any of your doctors have suggested trying? Our psych has said that it is useful with people on the "autism spectrum," and we found that it took a lot of the heavy-duty emotional lability out of the equation; it made it possible for him to face challenges (mostly OCD-based) with some maturity and perspective, instead of melting down over things or blasting off with a temper response. Lamictal is technically an anti-seizure medication which is supposed to be a glutamate modulator, so our psych prescribed it for an "off-label" purpose.

 

I know I'm not there, in the middle of it, and I may be misjudging it from your telling, but I know at times our DS had outbursts out of pure, raw anxiety. He felt so out of control, felt he had so little that he could enjoy about his life because the anxiety and OCD infiltrated everything for a while -- sometimes especially those activities he had previously really enjoyed, like school, video games, etc. -- that he acted out and exploded over things, seemingly trying to "ruin them in advance," before the anxiety could ruin it for him. I know that wouldn't necessarily explain ALL of your DD's behavior and choices, but it might be behind some of it. The hypersexuality, I think, may in part be her sort of doing an obsessive-compulsive thing of "poking at a wound to see if it still hurts." Given her upbringing, she knows that you would disapprove of this sexual activity, and despite how it appears, I'm sure she would prefer to please you and have your support. But she's sort of obsessively compelled to behave in an opposite manner. It's another self-harming thing, in a way, especially given as OCD has a very real scrupulosity component whereby sufferers can be overwhelmed by a need to be the most moral, the most ethical, the most "Godly" . . . She's poking the bear in a very intense way, there.

 

With respect to the therapeutic day school . . . I'm pretty sure that if you were to enroll your DD in the local public school district and provide them with the testing, etc. that demonstrates her issues are more than what they can deal with on that campus, the district would have to bear the costs of a "suitable alternative learning environment." Now, maybe that's a long way to go around your elbow to get to your thumb in terms of funding her education. And there might be some components of the law that would be problematic in terms of her not having been enrolled in the district previously or something like that, but you might look into that. I know when my DS was at his worst and the junior high felt that they couldn't handle him on-site, the district confirmed that if we had to go elsewhere, it would be on the district's dime (didn't wind up having to do that after all, as we home-schooled him for about 4 months while we got treatment, and then we were able to slowly integrate him back into his regular school).

 

I am thinking of you and wishing you the best as you consider these new avenues.

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Thank you so much for your response and wonderful ideas. Dd is actually taking lamictal now (200 mg am and pm) She also takes a low dose of ability and had been taking vyvansw (for attention and focus), but I have stopped giving her the vyvanse since I fear it may have been a cause of mania.

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Just another quick thing . . . has your DD been given any genetic testing by the psych or specific to the psych treatment plan? Something like GenoMind? These genetic tests are specific to how genetics impact one's ability to effectively utilize certain psych meds, as well as ones to avoid because they are contraindicated due to different mutations, etc. Anyway, something like that might help the psych narrow down more specifically appropriate treatments for her.

 

We did not have the testing for our DS as his treatment was prior to this sort of testing being readily available, and our psych lucked into effective treatment without the help of that testing. But I do know that Abilify did not help him; we tried it for a short time, and he had a contrary reaction to it. It was prescribed for him by a previous psych, and when we began seeing the psych who's been very helpful since and really effective for him, she told us that Abilify was the wrong thing for him.

 

Best

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Tu4four,

 

My heart goes out to you! You are one strong mama.

 

My son took a turn for the worse over the last few months and it has been rough. Not the same as you are dealing with, but he's also a teen (16), has always been very defiant, and has run out of our house a few times when very angry, so I can relate. We know the Bartonella has made a resurgence, via the rash on his back and circumstances that clearly point to that. But he fell into a deep depression in the last couple months, which we had never seen, and became seriously suicidal (not just talking about it), so we went to a psychiatrist and he's been on an SSRI for 5 weeks. I think it's helping a little, but the jury is still out. It seems to me, now that I'm dealing with it, that the psych meds can easily become a tangled web, especially with these kids, so I hope you have a really good psychiatrist who can sort it all out for you.

 

Other ideas that popped into my head after reading your post several times - and I'll just throw these out for you to take or leave as you judge best:

 

Mold - Have you tested your house? I think your whole family is dealing with Lyme, and if anyone isn't recovering, this is an important one to look into. They can look very similar, and differing genetics could cause one person to react more strongly to mold than others, even in the same family.

 

Heavy metals - If she was given a hair test only, this can be deceiving. Kids who don't detox well won't excrete much into their hair, so it can look like it's not a problem when it's a huge problem. The gold standard is a urine challenge where they take a chelator such as DMSA or DMPS which will latch onto heavy metals and pull them out in the urine.

 

Lastly, have you thought about a place like a Rogers in Wisconsin? I have heard amazing things about them on this forum, though you'd have to talk to them to see if they feel they could address her particular issues. Insurance may cover this.

 

Hang in there. You'll be in my thoughts and prayers.

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