NancyD

One other thing I would do to minimize the psyche symptoms ... Clean up his diet. Eliminate all artificial dyes and additives. Processed foods can really exacerbate the symptoms. Gluten, dairy, and soy can also be a problem, causing further inflammation. But I would start by eliminating the dyes and additives and giving dye-free ibuprofen. You may notice he is a lot calmer.

I agree with Nicklemama! Find an expert to test your DS right away and dump the psychiatrist. We've been chasing this for 18 years and are still peeling off the layers. My DD has had more DSM diagnoses than you could imagine and they were all wrong. If I had known then what I know now, I would test for Lyme through IGeneX (if positive, look for other co-infections). I would also test for mold through Shoemaker panel (Labcorp and Quest) and RealTime Labs mycotoxin panel. And lastly, I would do 23andMe genetic testing. There were many other infections along the way, but the true underlying causes seem to be Lyme and co-infections, mold, and detox/methylation problems. For so many children, PANDAS/PANS is just the tip of the iceberg.

We had a REALLY rough time with Mepron. DD18 was on it for 4 mos and it did not get any better. Wendy, Dr. N (CO) never told us to ramp up with Mepron. Maybe that was our problem! Dr. K (CT) told us "taking Mepron is a bit like letting the tiger out if its cage." OH SO TRUE! Our doctor in CA just took DD off Mepron and put her back on Artemisinin, which was so much easier for DD to tolerate. Wendy, any thoughts on Mepron vs. Artemisinin?

That was my DD's first tic at age 3.

Thought you might be interested in this radio interview with Dr. Neil Nathan, who talks about treating mold toxicity in individuals with Lyme disease and co-infections. He uses cholestyramine for one type of mold (I believe he said ochratoxin A group but I can't be sure) and activated charcoal and chlorella for Trichothecene group. He said treatment is individualized and if you are not treated by someone who knows what they are doing you could end up in much worse shape. It's worth listening to. http://www.gordonmedical.com/unravelling-complex-chronic-illness/radio-interview-with-neil-nathan-md-mold-lyme-and-coinfections/

Cholestyramine is the preferred treatment for mold toxicity. Here is a link to a lecture on mold toxicity: http://mendocoasttv.org/mcdhWellnesslecturemoldtoxicitydrnathan1.html I'm taking my DD to his clinic in CA for a week of treatment. I'm pretty sure they will start her on cholestyramine for mold toxicity, as well as IV abx and nutrients for Lyme and co-infections. They had DD do the RealTime Labs mycotoxin panel as well as the Shoemaker panel. Perhaps SF_Mom can weigh in on your dilemma.

Let me know how you make out, T.Anna. I'm hoping withdrawal won't cause other problems like when we tried Riluzole back in 2008. It caused a sudden onset of vocal and motor tics, even though we titrated down slowly. It took HD IVIg and 12 months to recover from that! I pulled the Namenda today. She was not at full dose and only 10 days into it but I wanted to get it out of her system as quickly as possible. I Googled Namenda and could not find anything about titrating down slowly. I have never seen DD's compulsions so bad as they are right now. Another piece of info I just found out is that DD is positive for Trichothecene Group via RealTime Labs mycotoxin test. Still waiting for the Shoemaker panel to come back.

So we just tried Namenda ... DD18 has high levels of glutamate and our neuro-Lyme doctor recommended it. We are in week 2 and only at 5 mg BID. DD has severe INCREASE in compulsions. Worse than ever. What complicates it is that DD decided to go off her GF diet a few days after starting Namenda. Obviously the best test would be to pull the gluten from her diet and see if the compulsions subside but it is so bad that we decided to do both -- pull the gluten and stop the Namenda. DD has never been able to take psych meds in the past. She is CYP1B1L432V++ (metabolizes meds too fast), MAO++ (unable to break down excitatory genes), and ++ for two GAD1 (anxiety). My bet is on the Namenda being the problem. Once the Namenda is out of her system we will try challenging her again with gluten to see what that does.

Teamtyrion, three reasons why we removed it: (1) we need to stay away from anything that could potentially increase dopamine levels; (2) based on DD's ++ mutations it is recommended she avoid it; and (3) it was not helping at all. Cannot say it specifically contributed to her behavioral issues. Like you, almost everything affects my DD adversely. She is very sensitive. Have you tried running the Nutrahacker report through 23andMe? I found it very helpful as to what to avoid and what to try.

We're already careful about this. Other than occasional dark chocolate no foods that boost dopamine levels.

Hi Rachel, We need to stay away from supplements that increase dopamine levels. DD's levels are already too high. I took her off curcumin and a couple other supplements for this reason. Nancy

Very true, MomWithOCDSon. It is a real balancing act.

From testing neurotransmitters and also through Cunningham test. I've guessed for years she had high levels of dopamine and Glutamate. The tests just confirmed it.

Philamom, she's been at 7.5 for ~ 3 months and her levels look good so no reason to increase. If they drop then we'll increase. I started at 15 mg a few years ago and after a while I went down to 7.5 but then my levels dropped so I went back up to 15. Then a few months ago my levels dropped again and I went up to 30 mg.

Yes, I am, Rachel. However, I am not suggesting you (or anyone else) not take these supplements. I just wanted to start a conversation about this and see what others have experienced or researched on this subject. But, I would watch for any signs when introducing these supplements if your child has high dopamine levels.

I started researching ways to decrease DD's dopamine levels, which are exceedingly high, and I was surprised to find that the following increases dopamine: vitamins D, B6, B12. Also Omega 3 in high doses, l-thiamine, ginkgo biloba, fava beans, pine bark, and grape seed. That explains why D3 causes my DD to rage. And when we doubled her Omega 3 dose a few years ago she became more dysregulated. B12 injections were problemsome. She also takes B6 and Methyl-B12 sublingual for MTHFR 677++, so now I must figure out whether they are adding to her regulatory issues. Then, if I eliminate them, will it affect her methylation cycle?? Has anyone else researched this? I know there are some parents who have commented that their children cannot take D3. Do they have high dopamine levels too? Thought I would start an exploratory discussion on this topic.

Yes, I do, philamom. Nancy- do you cut the 15mg pill in half for your daughter?

Hi Philamom, Armour Thyroid should be taken once a day ... an hour before breakfast. I started out at 15 mg / day and my DD18 started out at 7.5 mg / day. Starting out at 30 mg sounds high. You will have to check levels in 4-6 weeks. Nancy

Stephanie, I will PM you.

Thank you, SSS. Very cool story! I hope I can write something similar a year from now.

Same here...DD was IGM 31++. Our neuro-Lyme specialist says this is a marker for post-neuro autoimmune Lyme. Have you or your LLMD considered IV abx?

Indeed, it is very frustrating, especially since they do not take into consideration ratio of out-of-pocket medical expenses to income. But this will change when your DD turns 18. Then it will be based solely on her income.

Philamom, I'm not a doctor but your test results look like Hashimoto's to me. Hashimoto's is very common with post-neuro autoimmune Lyme, from what I understand. Philamom, was your DD IGM 31+ on IGeneX? There has been some controversy over desiccated thyroid (i.e., Armour Thyroid) vs. synthetic (aka levothyroxine -- brand names include Synthroid, Levoxyl, Levotroid). Desiccated thyroid is a thyroid hormone replacement drug made from the thyroid gland in pigs. The concern over dessicated thyroid was over dosing because there was no way to standardize the exact amount of dose for each batch, whereas with synthetic you can. The goal of replacement therapy is to keep the hormone levels as stable as possible. However, a lot of people have difficulty taking the synthetic -- like my daughter. She tried levothyroxine twice and both times it made her mood dysregulation and OCD much worse so we had to stop. I did not see the same problem with Armour Thyroid and with only 15 mg /day her levels seem to be in the normal range. I am also not comfortable putting anything synthetic in our bodies. Here's an article you can read: http://jdach1.typepad.com/natural_thyroid/2011/02/better-than-synthetic-jeffrey-dach.html

Are thyroid autoantibodies present? My DD has Hashimoto's, caused by post-neuro autoimmune Lyme. She takes amour thyroid and is GF. I am hypothyroid and take amour thyroid but no autoantibodies present.

So she works on a contingency basis. Interesting. I wouldn't have expected that for SSI filing. She must have a good track record if she's that confident to accept a contingency fee. I love the idea it's retro to day of filing. All the more reason to file sooner rather than later. Does she specialize in healthcare law?