This has been a long haul.

JC, my 6 year old son, has been on iv rocephin (3 months) and zith (2months). He never had a psychological problem before we started abx. Just cognitive.

JC has been getting steadily worse psychiatrically and his progress for neuro/cognitive Lyme has plateaued/regressed. He's also started to display new onset severe depression.

The LLMDs think the keets are alive and well and fighting back and/or he also has bart/babs and/or the lyme infection caused so much trauma to his frontal lobe it's made him a 6 year old rapid cycling bi polar psychotic with adhd and transient autistic spectrum disorder.

He has finally settled into a cycle: almost every day is bad at some point. Usually at night or when he's tired. By that I mean he just mentally and emotionally collapses and goes postal.

Sunday it lasted from 2pm to 4 am. He was paranoid, hallucinating, terrified and was becoming violent towards himself.

I actually asked the LLMDs if abx could make someone crazy. They said no, but Lyme and co-infections can.

Hey, the good new is he's not stuttering lately and doesn't have "accidents" every day. He also has happy, albeit not terribly self-focused, days.

He's generally out of it in terms of any ability to maintain focus or understand what to do in his class of 10 kids. Needs one-on-one all the time.

They just can't cope with his "special needs". He hasn't gone postal at school yet but has sat in the corner and cried.

His school and I have basically waved the white flag on on his attending half days and now I just take him if he seems to be having a good day.

That, for now seems to be working out.

He's just hanging on so I frankly don't have the heart to push him into the IEP at our infamously bad special needs program at the public school.

In the last few weeks he has seen 3 of the LLMDs who are working as a team on his case.

We are starting him on Rifampin
in the event that this lack of progress and severe psychiatric decline is due to a nasty Lyme/bart combo.

In the meantime we have been trying to help him with psych meds for the adhd but they have thus far just made him much more unstable.

He now has a prescription for an antipsychotic; we see the LLMD/Psych again on Friday.

Any insights continue to be appreciated.

What can we expect from the Rocphin/zith/rifampin combo?

What anti-psychotics have people used with little kids with lyme? He has been prescribed risperdal but I heard serequel is gentler?

Any natural, safe ideas. You know, maybe there's something called "Groovy Baby" or something...lol.

I asked about neurotoxins and Dr. J said in his exerience the safest with little kids is time, water, time, baths, time and rest.

Which I'm going to do right now.

later,
love,
andie & JC

I wish I was there right now to give you a big hug and watch JC so you could just rest for a while.

You are one totally amazing mother do you know that?? Well you are!

I wish there was something I could say to help you but I have no info on this except ya'll are in my prayers.

If there is anything I can do please let me know.

Starr

[This message has been edited by beach4so (edited 27 October 2004).]
 

I don't have experience with Rifampin, but it was one abx we considered. I guess you know that one of the adverse effects can be toxic psychosis--although that was listed as a rare effect on the info I read. Our LLMD was concerned about it given my husband's Lyme-induced volatility, which is why the hubby took Levaquin. Which has it's own awful adverse effects.

I don't want to overplay the psychosis -- I do know that people have had good succes with bart on Rifampin, and have gotten through with nothing worse than extreme irritability (which seems to be unavoidable). I think Mo and her kids were on Rifampin and tolerated it quite well (but you better check with her).

About 2 weeks after I first started the babesia treatment I started experiencing some extraordinary bouts of intense anger, more than I recall ever experiencing before, (and I've had some serious Lyme rages) and lots of major brain fog. No hallucinations, though. It really did clear up, but it took 4 months of tx before it started going away.

Just a thought -- but is there any music he finds particularly soothing? Or smells? Sometimes music and scent can affect areas of the brain when not much else can get through.

All the best.
 

Hope things go better .
Green Darkness
 

dr. jones said that sometime when kids go throgh puberty they get old symtoms reupted again. well, this happedned with jordan..at age 12, just recently, jordan started to get some old rage stuff back..so we started him back on the old regime of rifampin and mino about 4 months ago, adn he's doing great...no problems..
we go back to dr. jones in dec..will see what he says then...

hang in there...the rifampin should help..but it will be a bumpy road...email if you ever have any quesitons..i can give you my phone number then to call if you ever need to ...k?

lisa
 

We live in a parallel universe..only my Ry Guy is older.

I know I already conveyed our journey through similar terrain, and Rifampin helped greatly, mainly with rages and the scary world he was trapped in within his mind at the time.

I myself, and my three year old, experienced an initial exacerbation ..of mainly this exorirdinary anger, but within that initial Herheimer, we had periods of happiness and clarity that gave hope. After the initial phase, things improved slowly and steadily.

Ryan.. did not experience an exacerbation, it simply started helping and calming almost immediately.

For him, we had waited for the major psychotic episodes to subside on Rocephin before starting, though, but he was still psychologically and cognitively severely impaired upon start up of the Rif.

It's anybody's guess, I'm afraid, as to which way it will go for JC. However, the Herx from Rifampin in our (daughter and my) cases was not hours of "rage"..it was "flashes" throughout the day.

I can say from what we know, and what I know of others cases with CNS Lyme and Bartonella, Rifampin is very effective. Appahrently, it consists of very small molecules..which is why can be so effective in intracellular infection. Children with TB are treated for nine months to a year, with monitoring of liver function.

I was also discussing psychiatric relief for children with a non LL Doc at the ILADS conferance. This suggestion I have not checked out fully yet, just passing it on..
As you know, we have had no luck with psychiatric meds. They only made Ryan much, much worse. I think it had to do with the state of his brain during these times.

Even though we were working with a mosr wonderful and knowledgeable LLpsych to sry and deal with these symptoms, the symptoms were refractory, the drugs can be very dangerous (though sometimes there is a need that outweighs that)..and in the end, Ryan
had the most rare of the documented severe adverse effects with each one tried. Not to say JC then will, but to alert you. If the Docs feel an ant-psychotic is necessary..perhaps you might do better to find out what the adverse effects are (as this is hard to discern in an already ill child) and also to know what a dystonic reaction looks like, and what the plan would be should it happen.

We did not know..and thought Ryan was having seizures. It is quite sifferent from that, and there are treatments, depending on whether this must be managed at home (rather than hospital) which was the case for us.

Feel free to e-mail me, though this house is also in upheaval, to a lesser degree, and I will gat back asap.

Dosing with liquid ionic Mg seemed to help SOME. We neded more, but couldn't find it. Anti-psychotics caused a severe dystonic reaction. I refused to try anything more after seeing the reactions to Abilify, Klonopin, and Xanex.

This weekend, I was discussing with this Doc the possibility of changing therapies. Right now, Ryan is relapsing, and experienceing anxiety. When/if we do shift therapies down the line to help him vamp out of the necessary aggressive treatment he is on now, we will need something in place for the transition that will deal with the dangerous psych symptoms in case they temporarily resurface.

He impressed the use of Valium. He stressed brand name, the tablet with the little V in it. This ones been around a long time and is studied in children ..whereas the new ones have not.

But..in his work, he has found it very effective on severe psych trouble. This as a transitional/temporary tx during the rough period.

For some reason, he said, the old brand name works much better than most of the new stuff. Again..I have not researched it thouroughly yet, and have not talked to Doc J, I have no idea if there is any glaring contradiction in kids with LD. I am just telling you of the conversation I had recently. He said you'll know if it's working..and the patient will be sleepy.

All the best in getting through this very difficult time. You ARE doing a wonderful job, and I'm so glad JC is in such good hands between you and the Docs.

Big Hug,

Mo & Ryan

[This message has been edited by Mo (edited 27 October 2004).]