advice needed

[pr40]

We have a dd8 who has PANDAS with restless leg syndrome. She is doing better thanks to abx. I am writing about her little brother, ds4 whose behavior has drastically changed in last few months. In September he had a terrible sounding cough, during which he became extremely irritable and aggressive. He would attack us and hide in dark places where he would stay for a long while. By the end of September, we got him on a gluten free diet (his father has Celiac) and on Penicillin, 250mg x2. Slowly, during October his situation improved. Gradually, he became no longer extremely irritable and aggressive, but neither one went away completely.

Two days ago, after 30 days, we stopped abx. These were as bad two days as we know with him.

We did a blood test back in September, checking for ASO, DNase, ANA, and so on, before we put him on abx and all results were fine.

He is worst in the morning and around dinner-time and his mood and behavior can turn on a dime. We have no bi-polar disorder in the family but do have auto-immune stuff.

After reading Explosive Child which was recommended here, we tried some of the strategies and had some results. But, he does not fit this category 100%. He seems to be seeking your “no” and doing everything in his power to get it.

As far as we know, he has no history of strep. He was bitten by a tick but no lymes.

We are not sure what direction to take with him? Any thoughts?

Edited October 22, 2012 by pr40

[LNN]

My DD was very bipolarish before we zeroed in on the proper treatment for her MTHFR mutation. Have you check him for this?

[pr40]

No, we did not check MTHFR mutation. I know little about that mutation and how it might influence behavior. what was the proper treatment for it?

[smartyjones]

did you check for mycoplasma? from your post, the "terrible sounding cough" at the time of onset seems very suspect to me! not sure where you live, but i do think i remember hearing of many cases in late summer/early fall. we see an integrative MD who tests energetically. in july, on a trip, ds10 developed a bark he couldn't seem to kick. doc believes myco to be at the root.

 

i am a huge fan and promoter of Explosive Child. I know you say it does not fit 100% and i certainly encourage you to continue searching for root causes, if you feel they are there. i also encourage you to continue using techniques from Explosive Child. When we were in the thick of things, my mom was discussing it with a friend who started using techniques on her difficult husband with great success!

 

 

i did beieve i would see it with my ds and i know it has been discussed on this forum -- that hunger and longer stretches of non-eating can aggravate things. perhpas make sure he has small snacks through the day and see if that helps.

[nicklemama]

My DS was so "bipolarish" a neuropsychologist dx'd him. Attacking us, hiding in dark places, horrible mood in the evening. I can relate to this. My DS also never had strep that we know of. This all started suddenly, after a FluMist vax at age 5y9mo. He was diagnosed PANDAS a year nearly to the day later. Abx and IVIG have stripped him of these behaviors. He still has some lingering behaviors but they are milder, in comparison to what we and he suffered prior to dx.

 

He did have a couple of colds that lingered into ear infections prior to all this. PANDAS docs think he had undiagnosed strep. He has not had a known strep infection since dx either.

 

Edited to add, my DS has been found to have MTHFR mutations, as well, but treatment for PANDAS got him better. We have been treating for MTHFR since Mar and have seen some improvement, but he got sick this summer and some behaviors have returned, so I cannot say MTHFR treatment has helped w/ everything.

Edited October 22, 2012 by nicklemama

[MomtoJake]

My PANDAS DS got the "horrible sounding cough" as well in late August-- It was Myco P and it has been our worst flare to day with the exception of his initial exacerbation. It also has lingered the longest even compared to the initial exacerbation. Wouldn't be a bad idea to get titers checked. You will likely miss seeing the rise in IGM at this point, but I would see if you can get treated if the IGG is positive. Good luck to you-sorry you are going through this.

[EmilyK]

My DS has mycoplasma along with strep. Cough, rash, and he was forever turning off lights to have it dark in bad flare ups. The rages are the worst. With Augmentin, Zithromycin, and prednisone taper, we're having a really great day finally

[pr40]

EmilyK, if I may ask. You are in Rhode Island, we are in New Hampshire. Did you use dr B or someone else?

[EmilyK]

Dr B after much frustration with others. I'd drive out there weekly if I had to. He's getting the whole family well - finally!

[LNN]

No, we did not check MTHFR mutation. I know little about that mutation and how it might influence behavior. what was the proper treatment for it?

 

MTHFR is a gene that plays a role in many biological functions that rely on folate (vitamin B9). Your body takes in folate (dark green veggies, fortified cereals, multivitamins) and then converts it (methylates it) into a form that's needed (methylfolate) to keep certain body processes running smoothly. Your MTHFR gene influences your risk for heart disease, stroke, macular degeneration and certain cancers. But it also effects your body's ability to produce serotonin and dopamine. There are other genes that also play a role in this, but the MTHFR gene is well studied and easily tested, so there's been much discussion on this because we can actually do something about it pretty easily. It's low hanging fruit.

 

You can have a hundred different mutations on this gene. But the two you can test for are called C677T or A1298C. Each mutation effects how well your body methylates at different parts of the cycle.

 

As Nickelmamma points out, it's not the be all and end all answer for Pandas symptoms. But it can be an underlying condition that adds to the problem. My daughter does not have an official Pandas dx (my son does). She's always hovered in that in-between place where something is clearly not right, infection clearly makes things worse, but her issues seem independent of infection. Her issues weren't classic Pandas. She had bad thoughts about herself but no compulsions - not true OCD. Her rapid mood cycling was closer to bipolar than to Pandas. She would provoke fights and push every one of my buttons, deliberately trying to get me to lose it. Very oppositional and defiant. Would try to self harm or ask to be spanked because she "deserved" it. Very very upsetting.

 

She tested with one mutation on her C677T allele. So to treat this, we eliminated her multivitamin that contained regular folate and now give her a small amount (200mcg) of methylfolate every other day. Initially, I was giving her too much methylfolate (800mcg every day). Initially, she got better but then it all got worse. Too much of a cure can give you the same effects as too little. Once the light bulb went off and we decreased the methylfolate, she's been very stable and steady. It's a very delicate balancing act, and her needs change - during an illness, she may need a little more, during the healthy summer months, she may need less.

 

I do think testing for a chronic infection is also wise. My DD was treated for possible Lyme for 10 months and this did seem to help. But even when infection seemed to be taken care of, her "change on a dime" behaviors remained until we addressed MTHFR. So I think both are worth looking into.

 

FWIW - both my kids used to see Dr B until Lyme came into our picture. They now see an osteopath LLMD who's been very helpful in exploring all these non-Pandas aspects with us (he also helps us with the Pandas). Let me know if you want his name. He'd be about 90 min closer to you but is also in CT.