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tu4four

Here We Go Again (and Again and Again)

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The title here is a little misleading. It's not really that my dd11 has ever been 100% in the past 7 years. Well, there were those 4 days in February of this year. Which is what spurred us on to continue to search hard for answers.

 

My daughter has OCD, clothing sensitivities, general anxiety, extreme high irritability and frequent (sometimes all day) rages. She could easily be diagnosed as bipolar, in fact, we have spent 4 1/2 years on high doses of psych meds...which sometimes improved the situation for a while, sometimes did nothing, sometimes made things worse by causing big side effects, increasing rage, etc. My daughter had those great four days after coming down off of those psych meds. Before siblings developed strep and extreme OCD kicked in again.

 

Since Feb, we have been treating with abx, sometimes a low dose of Abilify as well, often a couple of Advil capsules, sometimes charcoal which would help for an hour or two at a time.

 

She was treated for parasites, viruses and was taking abx for Lyme for two months. The first 6 weeks or so were horrible. We were looking at some type of hospital or school placement. Things seemed to improve a little toward the end of the second month. We added A-Bart to our regimen of Zithro and Mepron as well as Samento and some other supplements. For the first time in years her sleep improved. She would get tired toward the end of the day, fall asleep and wake up at 7 or 8. That was a biggie and an obvious sign to us that something was improving physiologically.

 

Then we switched meds--our doctor said that things like yeast, etc appeared to be significantly improved, and we switched abx. we are now on bactrim and zithro and she is scaring me big time. She has scared me in the past by raging so much and hurting others, but this is different. She has always had issues with clothes, but now she has been cutting up all of her clothes, spending hours trying to put together new (and not always so modest) outfits.

 

But then she started lying. Bold-faced, look me in the eye and lie to me lies. No, I don't have the computer, no I didn't go to that website, I am just writing (and I later find the computer shoved under her bed. We have told her she absolutely cannot get on the computer. When we find one and are in the process of locking that one up, she finds another one while we are still putting up the first one. Or finds an ipod or an iphone or a nook or a kindle. She is 11. She has created an email account. Created a facebook account. Friended many people. Tried to create a myspace account. looked up teenage dating. Tried to sign up on a dating website (this would not be okay, anyway, but the pictures showed much older people. She has tried to set up a video chat with a site that says you can video chat with random people. I have tried to talk to her about this and how dangerous this is. How she could be playing with her life. She lies that she didn't do it and then gets back on every time someone walks away from a tech device.

 

This is a kid who never lied to me. Maybe it was because of OCD, but she would tattle on herself. She never lied. Was not sneaky. Now I look in her eyes, and I do not know who she is. But something tells me that giving her more psych meds or whatever is not going to take this away.

 

My husband and I are looking into putting her in an away school for troubled girls for this school year. I know it seems dramatic, and I never wanted to do anything like that. But I feel like she is working outside of our ability to keep her (and our other 3 children) safe at this point. And we can keep chasing down different rabbit trails and may never get to the answer. She's 11. She's been sick to some (usually extreme) degree since she was four. If something dramatic doesn't happen, what will happen when she has this attitude at 15? I can't bear to speak out loud the things that could happen then.

 

I guess I am looking for words of advice and encouragement.

 

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I'm not clear on how long you treated lyme or what led you to that (test results? rash?) but my DS did lyme treatment for 2.5 yrs before he could stop abx. So it's possible lyme & co is still a factor. Not everyone can handle bactrim - it's a sulfur drug and for some people, it can elevate toxins and possibly raise ammonia levels if you can't procees sulfites properly. Tho bactrim was great for my DS, it may be that you need a different abx.

 

I hear you on rabbit trails. But one thing that stood out from your post is your DDs blatant risk taking behaviors - like she's driven to do these extreme behaviors that are out of character. I know tween years are upon you, but it sounds more extreme than that. The one infection I know that can cause high risk taking behavior, even life threatening behaviors - is toxoplasmosis. You may want to read this article about a researcher who contracted it and how it derailed his behaviors. http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/

 

The other thing that strikes me is that you've certainly tried dozens of things that haven't helped. If psychotropic drugs aren't working, then it seems logical to consider a physical cause - either infection (perhaps lyme or toxoplasmosis) or methylation. I often think sound like a broken record on this topic. But we went down the Pandas/lyme path for my DS and it brought him back. It didn't really get to the root of my DDs mood and behavioral issues. When we did genetic testing ($99 spit test), I was able to customize supplements for her that literally saved her from a bipolar dx. She's been in a great place mood wise for over a year - so it's something I'm a little fanactical about.

 

You can search methylation posts or PM me if you'd like some links to read. I'm sorry I can only offer a few ideas but I do hope you're able to find some things that might help you come to an answer that helps your whole family heal.

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tu4four

 

My heart goes out to you. I suggest you to follow your gut and heart, and in the end always do what will keep your family safe- that is priority number one.

 

I read your story, and I wonder if your daughter was diagnosed with pandas? If so, does she see a pandas specialist? And has she ever had treatment for the autoimmunity component of pandas? (steroids, solumedral, ivig, pex)

 

I just ask, because the theory behind pandas, and what has held true for my kids, is that chronic infection is not necessarily the culprit, but it is the autoimmunity triggered by any ordinary infection. This autoimmunity may go on and on, like you describe, if not treated. Both of my girls have had similar behaviors to your daughter, specifically ocd, clothing sensitivity, anxiety, extreme irritibility, temper tantrums, and cognitive inflexibility (fixating on something they want, or want to do). Thankfully, ALL of their symptoms resolve relatively quickly when they are treated for the autoimmune component.

 

To me, if your daughter has pandas, it sounds like her immune system is extremely stirred up, and she will need a combo of treatments (pex and monthly steroids) along with highly effective therapy (I strongly suggest the USF program for childhood ocd).

 

Hang in there,

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I'm so sorry you are facing this. I understand your fears.

 

I'm not sure I can give any solid advice as I found the timeline a little hard to follow. When were the two months of Lyme treatment? Did the doctor say she was done with that or is the Bactrim and Azith another phase of that? My first instinct is that it's a herx if the lying and extreme behavior started soon after the abx change. Also, you said charcoal has helped for an hour or two - that also points to herxing. Have you tried getting her on a more regular and intensive detox regimen with the antibiotics?

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I'm not clear on how long you treated lyme or what led you to that (test results? rash?) but my DS did lyme treatment for 2.5 yrs before he could stop abx. So it's possible lyme & co is still a factor. Not everyone can handle bactrim - it's a sulfur drug and for some people, it can elevate toxins and possibly raise ammonia levels if you can't procees sulfites properly. Tho bactrim was great for my DS, it may be that you need a different abx.

 

I hear you on rabbit trails. But one thing that stood out from your post is your DDs blatant risk taking behaviors - like she's driven to do these extreme behaviors that are out of character. I know tween years are upon you, but it sounds more extreme than that. The one infection I know that can cause high risk taking behavior, even life threatening behaviors - is toxoplasmosis. You may want to read this article about a researcher who contracted it and how it derailed his behaviors. http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/

 

The other thing that strikes me is that you've certainly tried dozens of things that haven't helped. If psychotropic drugs aren't working, then it seems logical to consider a physical cause - either infection (perhaps lyme or toxoplasmosis) or methylation. I often think sound like a broken record on this topic. But we went down the Pandas/lyme path for my DS and it brought him back. It didn't really get to the root of my DDs mood and behavioral issues. When we did genetic testing ($99 spit test), I was able to customize supplements for her that literally saved her from a bipolar dx. She's been in a great place mood wise for over a year - so it's something I'm a little fanactical about.

 

You can search methylation posts or PM me if you'd like some links to read. I'm sorry I can only offer a few ideas but I do hope you're able to find some things that might help you come to an answer that helps your whole family heal.

Yes, I think I have been a little choppy in my timeline. I remember reading that post on toxoplasmosis a while back... I found that really interesting and concerning since we have several loose cats (our neighbor feeds them) that are constantly hanging out in our front yard and using our landscaping as their litter box. Yuck. I'll have to start investigating that again.

 

We saw a psychiatrist for the first time when my daughter just turned seven and had become too aggressive to ignore that there was an issue. Until Feb, she had been on heavy psych meds since then....but we had to constantly switch them up. Nothing worked long or well. Of course, our psych doesn't believe in pandas or chronic lyme.

 

We saw a local functional medicine chiro who diagnosed her as having blastocystis hominis and obviously a large degree of gut dysbiosis (gut not working well) based on tests we did through metametrix. We saw our pedi who was useless but did agree to do Quest's western blot (negative). The pedi also tested titers (she'd had a lot of strep), and they were high. We sent blood to Madeleine Cunningham's PANDAS research project at Oklahoma State University. Her results came back as very high for PANDAS. Our pedi had nothing to do with that test and does not believe in PANDAS, of course.

 

We saw another local dr. who has an alternative type of autism clinic. She did organic acid testing, heavy metals testing (normal) and a western blot after I had a positive elisa and a "funny western blot" through Labcorp. She did labcorp's western blot on all of my children which came back "funny".

 

We saw an LLMD in Missouri two years ago. Igenix Western Blot was not CDC positive on her (but it was on my son), but she had enough of the positive bands that he used the test as confirmation. He gave us a lot of RXs and sent us home with mounds of paperwork telling us, "If this doesn't work, try this. If you have this symptom it could be this...or maybe not." Other than the many Rxs we got, it was a useless visit. I worked with what we had some, used Azithro, ordered minocycline from an online pharmacy in an effort to copy the protocol that my friend's daughter seemed to see some success with (from Dr. J). I never saw a herx, never a moment of change, nothing. I came home out of money and out of my husband's belief that this was really Lyme or that my girl could be healed.

 

After that I was out of ideas. I could not take my daughter across the country because of the costs, and I was already stressing my husband beyond what he could take with money. I am a stay at home mom.

 

Then we went back to business as usual. Psych med after psych med. Side effect after side effect. And then in January, on lithium (which I had begged our dr for some time to try), she was the worst that I have ever seen her. She climbed out her second story window onto the tiny roof of the bay window. She was screaming and beating on our walls all day most days. Destroying our house. Running off down the street to our neighbor's house telling them I was mistreating her. Screaming bloody murder to the point that I had to tell my neighbors what was going on so they wouldn't call CPS. Sounds crazy, I know, but my niece was having her first baby, and we took an out of town trip...just me and the four kids...to my niece's baby shower. She became so wild while out of town, I thought I was going to have to take her to the hospital before we came home. We survived the time there, but then on the way home she screamed and yelled and raged so hard, I didn't know if we would make it.

 

Talked to our psych who said to wean her down off of Lithium, add something else and increase the abilify. We weaned down off of lithium, and she was a little better even without increasing the abilify. We weaned down off of abilify. During the weaning process, she was still better. Once off, she had four fantastic days....not easily irritated, the girl that I know is in there. Affectionate. Kind. And then, like that, during a trip to the mall, it started to get worse. And that evening she had a horrible bout of OCD...found out her siblings all had strep. And that put us on the search again.

 

At her little private school, she was just sitting. Shoving papers that were given to her onto the floor. Staying in the bathroom an hour....they couldn't get her out. Not doing any work. We stuck it out as long as we could, and then we had to pull her out. She wasn't doing anything except distracting the other kids. I couldn't get her to school on time, anyway. Couldn't get her up and then it became a fight. Our autism clinic (she is not autistic) put her on Azithro 250 once a day.

 

We found a PANDAS doc four hours away who took our insurance, and I made an appt. Had to trap her in the car. This doc was great in that he listened and seemed to really examine her. Ran a lot of tests. Not any great info. He changed her to Cefdinir, and she had a huge herx within three or four hours. But then things were back to normal...raging all day, screaming, yelling. Had a dr. appt with a lyme doc in Colorado in April. PANDAS doc gave clonopin so that I could get her on the plane. I used charcoal capsules, clonopin, and finally something stronger to get her to relax. She slept the whole plane ride there.

 

The Colorado doctor has been treating her aggressively (much to the PANDAS doctor's chagrin), but we need aggressive. He started her on Mepron, Cefdinir, some antivirals, antiparasitics and some detox helps. I love this doc. He takes this stuff seriously. We saw him again in June, and I have a phone consult with him in a few days. We did see her sleep cycle working better toward the end of the second month. Some time in there, she stopped raging daily, but she was still fairly irritable. It was still difficult to be around anyone with her.

 

When we saw him in June, he switched her abx thinking that we could get at other forms of the disease better with some other abx. We did some Rifampin in there. Bactrim. Zithro, artemisinin. But she has lost the sleep situation. Stays up all night. Doing crazy, crazy things. I was already homeschooling my son (7), and now, of course, she is homeschooling because she cannot function in the classroom. To teachers it does not look like cannot. It looks like will not. I can't blame them. It looks like that to me often.

 

So, yes, in reality, we have not been treating lyme long enough to be done. But I am only seeing things worsen. I love this kid. I know that she has a soft heart in there. She was most soft-hearted kid when she was little. But I can't seem to get her out of this hole or even get on the right path. And I know that my husband is quickly losing patience with how expensive it is to treat this...not to mention that we are all positive for Lyme (including him) and 4 of 6 of us for Bartonella, all of us for Babesia.

 

Thank you for listening. I know this was a long post. I am exhausted, you all are the only ones who get it.

 

Many Blessings

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tu4four

 

You have seen ocd triggered by strep, you have had a high Cunningham test, and you have not seen positive reaction to lyme treatment. IMHO you need to follow these clues and consider having pandas treatment. This means treating the autoimmune component with something like steroids, pex or ivig.

 

I have known parents from this board whose kids exhibited similar symptoms, for more than a year, and have responded to these types of treatments.

 

My kids are well now, thankfully- but I don't doubt they could be in your daughter's condition if we did not have pandas (autoimmune) treatment. Antibiotics were not enough. We decided to "ignore" some positive Igenex bands (not CDC positive) and continue down the pandas path, as that is what onset and symptoms correlated better with. They are now symptom free.

 

Good luck!

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Seems soooo much like my girl. Bactrim turned mine into a raging animal. We added in something very strong (amphoceterin) for yeast and she is so much better on this stuff. Guess you dealt with the yeast stuff, it seams though. My girl can not handle psych. drugs either, unless she is stable with some antiboitics. Small dose of seroquel made her MUCH more manageable. PM me anytime if I can help anymore.

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Maybe the reaction is a bartonella herx which comes from Lyme and also cats. Can you pull the bactrim and try rifampin instead? My dd had a horrendous rxn to bactrim. At least two md's I spoke to said bactrim should never be used. Have you tried burbur from nutramedix? It really seemed to help with Bartonella anger. We used five drops every four hours but usually only took one dose. Also I found too much mthf brought out a kit of symptoms in my dd. my husband has given me a really hard time about drs expenses too, where I have been able I have done without his knowledge. Also maybe you can call the town about your neighbor and those cats it's a real health risk. Hugs to you

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I just wanted to post that your exhaustion, frustration, and despair caught my heart. But, so did your resilience.

 

My dd is going through a very rough physical time right now ( different for us, and we are used to more behaviour based symptoms), and am feeling at the end of my rope on what to do, where to help.

 

Your love is evident - I'm a social worker in my working life, and have a whole new appreciation for behaviours based on our experience in the pandas world. Caring for the caregiver is a massive component to managing these diseases, compounded by the trauma we parents have to face in dealing with the medical system. Always being in fighting mode for advocacy is very hard work, and very under appreciated.

 

I have started to utilize more advocates in the system - being a social worker myself is helpful, however she is my kid. Having someone on the team for advocacy/support has been helpful for me to see different paths/resources that I may not have known about. In this province in canada, there is an organization that one can access to get a medical advocate - saves me from having to have so many stupid fighting conversations with docs who don't get it - we joke between the two of us that she's like my screening answering machine..

 

Sorry I don't have any medical info - all I've got to offer is Internet hugs :)

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Tu4four, You daughter, her behavior, seems a lot like my other ds (non-pandas child), who has sensory issues....This is what I have learned, and believe, these poor children, whom have come into this world with other challenges, can unfortunately fall into a very backward, negative way, in how they relate to the world...with both my children, one pandas one sensory, I use a behavior mod program along with addressing the physical issues. It has helped immensely. I highly recommend Howard Glaser, "Transforming the Difficult Child, The Nurtured Heart Approach". It works, and help the entire situation. Even when my pandas child is flaring...He has a Cd that you can rent from the Library. I found for myself, when I had a better understanding of how life/inherent dispositions/physical challenges like pandas and sensory issues can effect my children's emotional status and how they view the world, I had a much better ability to deal with issues like lying, stealing, anger.....this program works....and is life changing.

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I'm not clear on how long you treated lyme or what led you to that (test results? rash?) but my DS did lyme treatment for 2.5 yrs before he could stop abx. So it's possible lyme & co is still a factor. Not everyone can handle bactrim - it's a sulfur drug and for some people, it can elevate toxins and possibly raise ammonia levels if you can't procees sulfites properly. Tho bactrim was great for my DS, it may be that you need a different abx.

 

 

So, yes, in reality, we have not been treating lyme long enough to be done. But I am only seeing things worsen. I love this kid. I know that she has a soft heart in there. She was most soft-hearted kid when she was little. But I can't seem to get her out of this hole or even get on the right path. And I know that my husband is quickly losing patience with how expensive it is to treat this...not to mention that we are all positive for Lyme (including him) and 4 of 6 of us for Bartonella, all of us for Babesia.

 

Thank you for listening. I know this was a long post. I am exhausted, you all are the only ones who get it.

 

Many Blessings

 

I agree with LLM about bactrim. DD had a huge herx with bactrim which went on for about 3 weeks, when she then developed an allergic reaction to it. We used biaxin from that point onward.

 

If your whole family is dealing with lyme and multiple coinfections I (not being a doctor) would suggest not going the IVIG/steroid taper route before the high bacterial loads have been properly addressed. For us this meant long-term multiple abx protocols. Steroids are contraindicated with bacterial infection, and improvement from IVIG may be short-lived because the body will keep producing antibodies to the still-existing infections.

 

Our DD flared with every strep/viral/other bacterial infection before her lyme/co treatment began. She no longer has these reactions. I really think, in our case, that the immune suppressing characteristics of both the lyme and bartonella bacteria were a major cause for these reactions.

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I would like to encourage you to stop the bactrim. My daughter is being treated for lyme also. She was also doing fairly well on a combo antibiotic and our LLMD decided it was time to switch and we put her on bactrim and rifampin. She went absolutely crazy. At first I thought it was a terrible herx. So we cut way back on the dose and did all sorts of detox things. This went on for nearly four months. We tried everything to try to hold out since the LLMD really liked this particular antibiotic combo. Finally I said ENOUGH! We stopped the antibiotics, gave her a two week break and started something different. She started calming down after about 3 days. Later, after the 23&me test I found out the she does't process sulfa drugs well. Well, actually that is an understatement! She hasn't reacted like that to any other antibiotics. We have seen herx reactions, but nothing to the same degree. I have heard of this happening to other kids. It's not to say she doesn't need lyme treatment. Just that she can't handle sulfa drugs. It's worth trying. Keeping you in my thoughts and prayers.

 

Dedee

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