Exhausted

[LNN]

Queenmother - my DD also flips out from NAC - turns out she has a CBS gene mutation and NAC should be avoided for this. You will also want to avoid alpha lipoic acid, even tho it's a glutathione precursor. Yucca and a small dose of molybdenum is helping her feel less run down (removing ammonia and oxidants).

 

Makes me wonder if your DD also has a CBS issue? Like your DD, mine has a COMT issue but is only COMT+/- but is also MTHFR +/-, so like you, we've found that a small amount of methylfolate every other day works better than a daily dose. I found this 50 pg article very helpful - http://www.heartfixer.com/AMRI-Nutrigenomics.htm (scroll down past the diagram)

 

Tu4four - you may find it helpful to look into some sort of genetic testing. We used 23andMe, which is only $99 but the downside is it takes 8 weeks to get results. But it's made a big difference in what my kids take in terms of supplements and also in how they feel. Not everyone feels they want to go this route and I respect that. I toss it out in case you hadn't heard of it before.

[queenmother]

LLM,

Yes, my daughter sounds like CBS but no mutation. And we can't figure out just why she acts like CBS. She totally can't handle Alpha lipoic acid either!!!! She always shows elevated taurine, too. Still trying to figure it out....along with everything else.

QM

[filinha1]

One final thought on rispeerdal vs. lamictal. Several people have weighed in on the use of psych meds and referred to lamictal as the drug of choice for mood stabilization and I agree. This opinion about the preference for lamictal is fairly unanimous on some of the other forums I read.

Our psych originally wrote for lamictal but because our situation had gone downhill hard and fast he switched to risperdal, which is much faster acting - hours instead of weeks. Dd did so well on it the psych voted to keep her stable and stay on that.

 

Heather

[tpotter]

 

if these are symptoms as they appear to be, treat them like symptoms. I am not sure why you would not go for IVIG.

 

In the meantime, as a bandaid you can try NAC, said to help with rages. for us, getting of gluten and dairy helped somewhat, too.

If you have not already, you can try to be extremely nice when she rages. give her compliments and redirect her mind to something else. it is difficult at first and then it gets easier gradually. participating in her rages is the worst (i am telling this to myself not just to you).

 

I cannot speak for tufour, but my concern with IVIG is that it is a blood derived product and as such would be a very last resort for us. Kiddo's doc has already recommended it at the first visit even before we found she has PI. Now, we also find she had kidney disease of some type, which makes IVIG even a more distant possibility for us.

 

It seems IVIG helps some and does not help others. Also, from my limited understanding, the chance of success is far greater if you have other infections under control before beginning IVIG.

I haven't tried it yet, but am strongly considering, but what about trying camel's milk. It is said to work like IVIG. You can research it online, and there is also a facebook page (it's a close group...you have to apply to be accepted) https://www.facebook.com/groups/225663314116369/?fref=ts. Just another thing to consider.

[tu4four]

if these are symptoms as they appear to be, treat them like symptoms. I am not sure why you would not go for IVIG.

 

In the meantime, as a bandaid you can try NAC, said to help with rages. for us, getting of gluten and dairy helped somewhat, too.

If you have not already, you can try to be extremely nice when she rages. give her compliments and redirect her mind to something else. it is difficult at first and then it gets easier gradually. participating in her rages is the worst (i am telling this to myself not just to you).

Yes, I believe these are symptoms as this is/has been pretty much a constant thing. We've had a period or two of three good days, but other than that, this is it. So yes, symptoms. I do think IVIG is worth investigating after we get Lyme and other chronic infections under control (if possible). At this point, however, she's got so much other stuff going on that I don't think we could give IVIG a fighting chance yet.

 

We are gluten free and try to be casein free (and sugar free and yeast detoxing....). She's angry at me about all that, too, not ever buying anything she likes....i guess i can understand that part.

 

I have been thinking about NAC and will try that. I've gotta' try something else. As far as redirecting and being super-nice, though, my very presence (or how I am breathing) offends her and sends her over the edge. Maybe NAC will do something good. Thanks for the ideas. I am so thankful that when I am at my wit's end, you all get it.

[tu4four]

Hi, I'm so sorry you are going through this. How long has this been going on? If it's more recent, or has gotten a lot worse recently, I wonder if she's herxing. I read some of your recent posts and it sounds like you added a lot of things in rapid succession recently in order to be ready for your next LLMD appt? If so, maybe its too much for her body or maybe she is reacting to one or more of the things you added. Just a thought. Hang in there. You will get through this dark time.

Oh, I pray for herxing....Unfortunately, this does not seem to fit that pattern. We've had a couple of short-lived good spells, but other than that, it's been going on like this for 3 months since she got off of Abilify and Lithium (which were causing so many side effects and not conrolling irritability and aggression. Thanks for the encouragement. That means more than you know.

[tu4four]

I so completely hear you, I don't really have good advice except to tell you that you are not alone. My DD regularly tells me she hates me and that I am awful. Usually when I am giving her medicine. Her psychologist tells me that she associates me with being sick as I am the primary/only caregiver - husband does not participate. My husband (not going well either) frequently tells me how much I suck. Work is another disaster. DD's school situation is just awful, apparently her grade is the worst her teacher has seen in 10 years. Many days are very very hard. What I have gotten out of this is that DD and I are much closer. Enjoy your 3 YO, mine gives me lots of hugs. I hope that you can start to get some relief from treatment soon

Big hugs to you and to all of us. This stinks. I'm sorry that anybody else is going through it, too. Glad you get those little hugs from your 3 yo!

[tu4four]

Hi there,

 

I'm not sure which meds your daughter is taking and this will probably be an unpopular opinion, but I think there are time when psychotropic meds have a place in your arsenal. Yes they deal with the symptoms and not with the problem. Sometimes though, that is the best you can do in a bad situation.

 

I will say unreservedly that a low dose of risperdal saved us when my dd was at her worst. Most important, it calmed her down enough to take the many abx and supplements required to get beyond the symptoms to the underlying problem.

 

She is still on risperdal and of course that is its own problem; is her remarkable improvement due to risperdal or the PANDAS / PANS protocols we are following, or both? Against the advice of the child psychiatrist, who believes she has a mood disorder (read euphemism for bipolar disorder), I have been steadily lowering the risperdal and gauging her reaction.

 

I don't think any decision about medications, psychotropic or otherwise, can be taken lightly. With that in mind our choice was to weigh the good the bad and ugly of all the meds we give, and do what we have to to keep the whole family functioning, not just our sick child.

 

Good luck with your daughter - this stuff sure ain't easy.

 

Heather

Yes, dd was on psych meds for 4 years....Risperdal, Lithium, Abilify, Seroquel, Pexeva, Carbitrol, Stavzor, Depakote, Intuniv....a couple of them at a time. We weaned her off because she was having so many side effects and very little improvement--sometimes it was the opposite direction. We knew that she had PANDAS and Lyme (for 2 years) and went back to pursuing that as the cause. i have not wanted to put her on any psych meds now for fear that I wouldn't see the improvement or know what caused it. But I think we may have to go back to at least a low dose of Abilify or something like Lamictal. I can not live like this day after day any more.

 

Thanks.

[tu4four]

BTW, dd is now taking Mepron, Cefdinir, Azithromycin, paromycin, yodoxin, noni, mora, viragraphis (anti-viral), engystol (sp?) (anti-viral), nystatin, probiotic, vit c, magnesium, stool softener, milk thistle, mudipur.

[tu4four]

 

Hi there,

 

I'm not sure which meds your daughter is taking and this will probably be an unpopular opinion, but I think there are time when psychotropic meds have a place in your arsenal. Yes they deal with the symptoms and not with the problem. Sometimes though, that is the best you can do in a bad situation.

 

I will say unreservedly that a low dose of risperdal saved us when my dd was at her worst. Most important, it calmed her down enough to take the many abx and supplements required to get beyond the symptoms to the underlying problem.

 

She is still on risperdal and of course that is its own problem; is her remarkable improvement due to risperdal or the PANDAS / PANS protocols we are following, or both? Against the advice of the child psychiatrist, who believes she has a mood disorder (read euphemism for bipolar disorder), I have been steadily lowering the risperdal and gauging her reaction.

 

I don't think any decision about medications, psychotropic or otherwise, can be taken lightly. With that in mind our choice was to weigh the good the bad and ugly of all the meds we give, and do what we have to to keep the whole family functioning, not just our sick child.

 

Good luck with your daughter - this stuff sure ain't easy.

 

Heather

Yes, dd was on psych meds for 4 years....Risperdal, Lithium, Abilify, Seroquel, Pexeva, Carbitrol, Stavzor, Depakote, Intuniv....a couple of them at a time. We weaned her off because she was having so many side effects and very little improvement--sometimes it was the opposite direction. We knew that she had PANDAS and Lyme (for 2 years) and went back to pursuing that as the cause. i have not wanted to put her on any psych meds now for fear that I wouldn't see the improvement or know what caused it. But I think we may have to go back to at least a low dose of Abilify or something like Lamictal. I can not live like this day after day any more.

 

Thanks.

 

 

 

 

if these are symptoms as they appear to be, treat them like symptoms. I am not sure why you would not go for IVIG.

 

In the meantime, as a bandaid you can try NAC, said to help with rages. for us, getting of gluten and dairy helped somewhat, too.

If you have not already, you can try to be extremely nice when she rages. give her compliments and redirect her mind to something else. it is difficult at first and then it gets easier gradually. participating in her rages is the worst (i am telling this to myself not just to you).

 

I cannot speak for tufour, but my concern with IVIG is that it is a blood derived product and as such would be a very last resort for us. Kiddo's doc has already recommended it at the first visit even before we found she has PI. Now, we also find she had kidney disease of some type, which makes IVIG even a more distant possibility for us.

 

It seems IVIG helps some and does not help others. Also, from my limited understanding, the chance of success is far greater if you have other infections under control before beginning IVIG.

I haven't tried it yet, but am strongly considering, but what about trying camel's milk. It is said to work like IVIG. You can research it online, and there is also a facebook page (it's a close group...you have to apply to be accepted) https://www.facebook.com/groups/225663314116369/?fref=ts. Just another thing to consider.

Will definitely read up on that. IVIG without the IVIG? Sounds promising.