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My family has exploded today--including me. Actually, my husband is the one who has stayed somewhat sane through this all.

 

This has been building for quite some time...I have a dd11 who cannot/looks like WILL NOT do anything I ask. You have probably seen some of my posts about how out of control and oppositional she has become. She routinely calls me a moron a tells me to shut up stupid, destroys our home, etc. She has done all kinds of wild antics, pulls out anything that she wants and makes huge messes but will not pick up anything.

 

I know that she is sick. But I also know that we cannot live this way any more. My other children are watching and learning from this. My children no longer listen to me. I can not parent when this is going on. I was a good mom. But now I am angry all the time, many times every day being bullied my dd11 who refuses to do anything except antagonize her siblings and refuse to help in any way. My 17 yo wants to bolt all the time. I feel like we are losing her.

 

We have been treating lyme for six months. No change. She was on psych meds for four years with no consistent improvement--all kinds of things from risperdal to depakote to lithium to pexeva, etc, etc. we took her off of meds in feb due to bad side effects.

 

We have our next lyme appointment in 8 days and our next new immunologist appointment in 10 days. We had our first neurologist appointment last week and will be doing MRI, nerve testing and lumbar puncture. She has a high tpo(but really not excessive), and I was hoping our neuro would want to really look into hashimoto's encephilitis, he really did not place much value on the tpo.

 

Once we see these next two doctors. If we don't find someone to help us pursue ivig, I will be calling dr k. I am told that 1 hd ivig for my daughter will be $15,000. The thought of borrowing money to pay for something that may or may not work makes my insides crawl. I have other kids...one who has periodic joint, heart, breathing and OCD issues and a younger one who is starting to have her kind of irritability, sensory issues, and I know he has OCD.

 

In the meantime I have sent her saliva off to 23andme, and we hope to hear about her pylourria results this week.

 

Tonight I gave her a small dose of Abilify again--did not want to do that until after the neuro tests, but truly, we can't all stay under the same roof like this any longer.

 

Anybody have any other ideas--either for my dd11 or the rest of us? Sorry for the repetitive nature--I know a lot of you have read so much of our story....

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I know this is the last thing you want to hear...but I use the BEST behavior mod program out there. It works well for kids who are chronically sick, and keeps everybody else sane as well. I don't know what I would do without it. Howard Glaser, The Nurtured Heart Approach. It will help. Not make everything perfect, but it will see you through everyday. I've tried them all.

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I agree with the behavior modification. We had to do the three week intensive treatment at USF to get my daughter to stop attacking and hitting me.

 

On another note, I will tell you this, we did the 23andme and started working with methylation. Worked for months trying to fix this or that mutation. I was being ever so patient with the methylation pathway and frankly getting no where fast. I peaked in on the support group for Dr. Amy Yasko from time to time but I only take a part of that to heart as it really is a lot of money put in to her supplements. However, I finally did do a urine and hair test that she offers and found out that my daughter dumps lithium and has very low lithium levels in her hair (about the only way to test lithium levels). Without appropriate lithium you can not transport B12 into the cells in addition to other things. I'm not talking about prescription dose lithium. I mean very small sub clinical doses of lithium that you would have normally. With my daughter's mutations she has a genetic pre-disposition to naturally excrete lithium while she has a heavy bacterial load (lyme). Since we have been working on this, her defiance, anger and violence has started to disappear. Not completely gone but I would say about 80%. We are going very very slowly because going too fast causes detox and a worsening of symptoms. There were some other interesting findings on the urine that we are working on. All I can tell you is this is the best place my daughter has been in three years. I can't say she won't regress next week, but the last month has been wonderful. I think some of the things Yasko does is helpful. Just have to be careful not to fall into the money pit.

 

Dedee

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I was also thinking her lack of treatment response could be mold related.

 

Here is a link for mold testing.

 

http://www.survivingmold.com/diagnosis/lab-tests

 

The other thing to think about is testing is her Nagalase level. "Nagalase is an enzyme that prevents Vitamin D receptors (VDR) from being activated on the surface of the macrophage. As a result, macrophages are not "activated" and our immune systems are not able to properly respond to invaders". We see one Dr. who believes elevated Nagalase needs to be addressed prior IVIG or the immune system will never be able to rectify itself. It is common for Lyme suffers to have elevated Nagalase.

 

http://www.betterhealthguy.com/gcmaf?highlight=WyJnY21hZiJd

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I would highly suggest that if you are going to test for mold, spend the extra money, and have it done by a professional mold expert (you can look them up in the yellow pages.) If you are in the Philly area, PM me, and I'll give you the name of the company we used. It is very well worth the money. Unfortunately, if you find mold, you really will have to remediate, and that can get expensive, but it has made such a difference since we finally found the source of the "smell". Don't cut corners.

 

I would also look at diet. When my DS is following his diet (GF, DF, no corn, nightshades, soda, sugar...determined by muscle testing, and confirmed by 3 different people muscle testing) his mood is exceptional. He's a college student, so unfortunately it's very hard to keep in "in line", but it really has made all the difference for him. Otherwise, he can get extremely nasty, have terrible mood swings, break walls, etc. Keep in mind that what he avoids may not be the same as others (my DH can eat wheat, for instance.)

 

When we started treating for mold and diet, we started to turn the corner. We also do other alternative treatment, but these two things were the beginning of the turning point for us.

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Reading your post reminds me of my three kids....is there any possibility your home may mold in it? Do you and/or your husband have any symptoms as well?

Interesting thought.....my husband and I are both positive for lyme (as are all of our children), but we don't have any symptoms that just jump out as lyme or mold or anything out of the ordinary...right now. I have sore soles in the a.m. (our LLMD says I don't have Bart through ART, but?), and my husband has spells of migraines.

 

BUT.....when dd11 was 8 we did a yeast detox diet complete with nystatin, diflucan, a lot of vit d, vit c, fish oil (2 TSP), and although we did not completely get her off of her psych meds at that time, we were able to significantly reduce them. She was not 100 % but much better. For a couple of months that held. However, things gradually faded, and within 6 months, she was again back to the same thing. That's when we found out about PANDAS, and other than motor tics, she fit that so clearly.

 

I am thinking that since mold is a fungus, maybe there was some connection....? And.....when she was really young, we had a leak in our roof over her room that only appeared if we had a spell of really bad weather. We didn't see any mold, but when my husband moved her dresser to tear out the sheetrock, there was a piece of wood underneath that had mold under it when we picked it up.

 

Is it possible to have the trifecta of chronic illness (psychiatric, anyway)? PANDAS, Lyme and mold? I can barely wrap my mind around that. Does 23andme tell you anything about having the mold gene?

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I was also thinking her lack of treatment response could be mold related.

 

Here is a link for mold testing.

 

http://www.survivingmold.com/diagnosis/lab-tests

 

The other thing to think about is testing is her Nagalase level. "Nagalase is an enzyme that prevents Vitamin D receptors (VDR) from being activated on the surface of the macrophage. As a result, macrophages are not "activated" and our immune systems are not able to properly respond to invaders". We see one Dr. who believes elevated Nagalase needs to be addressed prior IVIG or the immune system will never be able to rectify itself. It is common for Lyme suffers to have elevated Nagalase.

 

http://www.betterhealthguy.com/gcmaf?highlight=WyJnY21hZiJd

Thanks for those links. Will check these things out in detail.

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I would highly suggest that if you are going to test for mold, spend the extra money, and have it done by a professional mold expert (you can look them up in the yellow pages.) If you are in the Philly area, PM me, and I'll give you the name of the company we used. It is very well worth the money. Unfortunately, if you find mold, you really will have to remediate, and that can get expensive, but it has made such a difference since we finally found the source of the "smell". Don't cut corners.

 

I would also look at diet. When my DS is following his diet (GF, DF, no corn, nightshades, soda, sugar...determined by muscle testing, and confirmed by 3 different people muscle testing) his mood is exceptional. He's a college student, so unfortunately it's very hard to keep in "in line", but it really has made all the difference for him. Otherwise, he can get extremely nasty, have terrible mood swings, break walls, etc. Keep in mind that what he avoids may not be the same as others (my DH can eat wheat, for instance.)

 

When we started treating for mold and diet, we started to turn the corner. We also do other alternative treatment, but these two things were the beginning of the turning point for us.

We are spending so much right now.....I guess I will try to see what her genes say first. Does that make sense to do? Can you tell me what the price range was for testing? (You can pm me.) We are in Texas, so unfortunately, I guess I'd have to go by web reviews. Did you have a moldy smell in your house? We don't have one, but if we have been gone for a few days, when we come back there is a musty smell.

 

We live in a very hot, humid climate, in a house built by a tract builder that I KNOW cut many corners, so I am not sure of how to keep our a/c vents perfectly clean....I have seen our vents look moldy and had the vents and the ductwork professionally cleaned, but who knows what that really did.

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A lot of people assume if they check their house and its clean of mold the child is not impacted. This is not true as mold exposure could come from any building, even school. I would run the tests recommended on the Shoemaker website and confirm if she has a problem first, then investigate the home and treat once the house is clear.

 

I believe all the tests recommended are done by Quest/Labcorp and hopefully covered by your insurance. Prior to spending a ton of money on IVIG I would also check her nagalase to see if its elevated. A couple of other stumbling blocks with Lyme are viruses, heavy metals and possibly a co-infection like Babesia/protozoa FLT 1953 (testing by Fry Labs).

Edited by SF Mom
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Wow, some great info. on this thread. Hate to say it, but we have been thru all of it. :/

 

One thing that struck me was the conversation about hair test. My ds first hair test, 3 years ago, his heavy metals showed somewhat high. After 3 months of detoxing, his levels had gone up substantially and I was really concerned. The doctor told us that was what she was looking for because it showed that ds was getting rid of them! I was surprised! This was before all the methalation testing so it was a good indicator that he was detoxing heavy metals properly.

 

We also did nagalese testing and found his higher than the norm by quite a lot. We are currently doing Gcmaf injections to get it down which it has. We are hoping that this treatment will train immune system and it is lowering viral numbers for the first time in 3 years. It is supposed to last for your lifetime once finished. Ds will be done when this vial is empty.

 

Oh...one last thought. Parasite/worm treatment done 3 years ago helped a ton in terms of anger...oppositional behavior etc.

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