One step forward... 3 steps back

[nomoz]

Hello, everyone. I'm updating (and venting) about my 7 year old daughter. She has seen Dr. T a few times now and was on Biaxin (successfully) for about 3 months. In mid May, I got worried about Biaxin, as it's not a favorable choice for long-term treatment, and I weaned her off.

 

It doesn't take long for things to go haywire, does it? First, it's just an occasional rage episode, and then, as time goes on, things just get progressively worse, until you realize this poor child needs treatment.

 

Here's the frustrating thing - Some doctors say antibiotics, some say IVIG, some say IVIG doesn't work long term, and some say antibiotics don't work long term. So, at the risk of making her a guinea pig for research, I'm left wondering... WHAT WORKS????

 

She tested positive for mycoplasm, lyme, and had high normal strep titers. We recently ran the bloodwork again, looking for a possible Hyper IGM problem, which may contribute to a weakened immunity. So, without a doubt, her symptoms are illness-related. Yet my husband is now pushing for Tenex.... I'm not sure if I agree. Why mask a problem you are trying to solve??? It's so easy for these docs to write scripts.. but they are not the little bodies these scripts are affecting..

 

I'm so frustrated - I wish there were a doctor out there who could be "on call" for discussion. So few even know their stuff with this - to ask for that, I know, is out of the question. My daughter's pediatrician, at her most recent appt, spent most of the time arguing with me over Dr. T's bloodwork orders, saying they were unneccesary and costly (we needed her to ok them through our insurance). How can you put a price tag on a child's health?

I'm ready to find a new pediatrician for her, that is for certain.

 

Just feeling sad.. My daughter is ruling the roost again (really her illness is) and it's turning us upside down. She lashes out at everyone, without cause or good reason, as if on a rage cycle, and behaviorally, I know she can't help this, but how do you ignore the scratch marks on her 3 year old sister, or her throwing phones, or kicking and biting? I am left with my hands tied, my husband angered, and my daughter worn out.

 

I think the next antibiotic (for mycoplasm should her levels be high) may be Azithro.. But for how long, and what, if anything else, should I be looking into????

 

Thanks, and best wishes to everyone else who is living this ######.

Noelle

[danddd]

I have the same question,, what to do next? sorry I dont have an answer. My 9 yr old has rages, mostly against me and her 4 yr old sister. It IS terrible to see the affect on the whole family. we are looking into ivig, waiting for the results of more bloodwork too (myco, immuno etc). so sorry to hear she has positive lyme, myco p, ect. someone must be able to sort it all out. as people keep telling me "never give up"!

there will be lots of good suggestions from others............

[Doug]

Call Dr.K

He is the best(I Think so anyway)

Tracie

[Phasmid]

Azithromycin appears to be working for my son. He has been on 500 mg/day for 2 weeks, and he will be on for another 2. Today was the best day so far. We had no structure to the day, dissapointments, nobody to play with, a late lunch, and he never had a meltdown. I hold my breath, as we know things go up and down daily anyway. But I do think I see improvement at the core. So, is it an option to try azithromycin?

[dcmom]

nomoz and dandd-

 

I don't really know your backround stories. But, I will add some thoughts that may help you. Unfortunately, with pandas, you really need to take charge of their health. Peds DON"T get it (for the most part), even if they say they do. The only docs that get pandas, are those who have been with their patients through thick and thin- Dr K, Dr L, Dr T, and Dr B (now). And even then, different docs have different strategies, you need to go where the treatment you want is. It stinks- I agree- but that is just how it is going to be for some time (I think).

 

That being said- you are on the right track. Testing to rule out (or rule in) infections. Start on an antibiotic- my suggestion is zithromax. Give it 30 days full strength. See if you see any improvement. If yes- give it two more weeks, if no- switch it up (try augmentin - high dose, or maybe biaxin). Do not at any point, until your child is healthy (meaning NO pandas) for who knows how long (years?), go without antibiotics.

 

If the antibiotics are not doing the trick, stay on them, and also progress quickly to a 4 week, tapered, prednisone burst. At some time during that month- hopefully you will see improvement. If so, hopefully that improvement will sustain.

 

If your child cannot sustain the improvements made, it is time to consider IVIG or PEX.

 

SOME low level symptoms just take time to work themselves out. So, the other thing is- if the child is happy and functional, but hanging onto some minor cognitive inflexibility, or residual ocd, etc- give it time. In my opinion, time is as much part of the equation as treatment.

 

*** I don't know anything about lyme- except that it is VERY serious. Lyme disease could certainly cause pandas to be chronic. If you test positive for lyme I would immediately seek the help of an ILADS trained doc- no one else. Lyme mom on this forum could walk you through this. I would not treat the pandas at all, untill you got with the lyme doc as I believe steroids are contraindicated.

 

We, thankfully, never had to consider psych meds. If it were me- I would not consider them until you have thoroughly explored and treated pandas and lyme. I think they will really blur the clinical picture of either of these illnesses. I would strongly suggest some therapy, either for the child or you and husband (to give you strategies to handle issues). I also do recommend smartyjones technique of repeating back what they yell about. It is from the book The Explosive Child.

 

Hang in there- it is a long road- but the good news is, that they will get better.

[Fixit]

besides trying another abx....

if you have lyme...that takes longer than a month of abx.....

you may need years and also iv abx....i am not the expert or have to deal with it....

also myco p.....for some it goes away with a round of abx...there have been papers where it takes 6 months of abx and ivig

and her strep might still be high.....

AND IF you get all that cleared up...it might turn out that her system was sent into overdrive with no brakes and the system will need to be artifically stopped,,,possiblely with ivig or pex

oh and if that's not enough...now that you are on abx....

we have found we now have a great deal of problems in the gut...with bacteria, yeast and fungus...the digestive system truely plays into this.....

 

So you still have a lot...IMHO to work with, through(assuming you don't aslo have food allergies and other things)

[LNN]

*** I don't know anything about lyme- except that it is VERY serious. Lyme disease could certainly cause pandas to be chronic. If you test positive for lyme I would immediately seek the help of an ILADS trained doc- no one else. Lyme mom on this forum could walk you through this. I would not treat the pandas at all, untill you got with the lyme doc as I believe steroids are contraindicated.

 

I was going to say the same thing, but DC mom beat me to it. You absolutely need to make 100% sure the lyme is gone or you will never beat this. Treat this first and agressively, then see what's left. go to www.ilads.org to the contact us tab and send them an email asking for a lyme literate doctor in your area. They got back to me within hours.

[nomoz]

Thanks, everyone.

We did get the lyme re-tested via the Western Blot, and we are awaiting those results. My daughter has been on antibiotics, during the course of her life, far more than the average child. (for varying reasons, including several strep infections pre-tonsillectomy).

Recently, for mycoplasm and lyme, she was on Azith and then Biaxin since the end of January, so it has been longer than a month.

Again, with lyme, there are several different opinions on how long to treat. I remember my daughter having two tick bites - her PANDAS symptoms were present before them - however, I'm certain the co-infections in her system play a huge role in her behavior.

 

Tonite, we all pretty much cried ourselves to sleep over here. I'm so fried. Her outbursts are SO angry, her words are really mean, and her physical strength is amazing for a 7 year old child. And things that used to help her are now becoming triggers. We take her often to a local farm (my husband's place of employment) where she has unlimited access to all the animals, streams, etc. But now she is becoming "obsessed" with it - ie. if we are there 7 hours, it's not long enough..

 

Lastly, I am just so at my wit's end (as it's summer) on how to deal with her and my younger daughter together. She's downright mean to her sister - not always - but much of the time. Again, this behavior subsided on Biaxin - it's just a tough drug on the gut -

 

Our next venture is to see an allergist (Monday) to determine if these play a role. I find, from what I have read, that in many of the PANDAS cases, October is a bad month, and May and June are problematic. This definitely coincides with allergy seasons. There may even be something at the farm which is not good for her (though overall that is her place of refuge..)

 

Thank you all.

I'll keep everyone in my thoughts and prayers.

Noelle

[LNN]

You mentioned seeing Dr T at one point. Ask him to be the ordering doctor for an IGENEX lyme test. The western blot is inconclusive. I also highly recommend "Cure Unknown", which describes the Lyme war in a way that is so close to what's going on with Pandas. It exlpains a lot about Lyme in a way that's way to understand. Lyme could be behind the rages. Like Pandas, you want to get to an expert. Time is not on your side with Lyme.

[nomoz]

You mentioned seeing Dr T at one point. Ask him to be the ordering doctor for an IGENEX lyme test. The western blot is inconclusive. I also highly recommend "Cure Unknown", which describes the Lyme war in a way that is so close to what's going on with Pandas. It exlpains a lot about Lyme in a way that's way to understand. Lyme could be behind the rages. Like Pandas, you want to get to an expert. Time is not on your side with Lyme.

[nomoz]

You mentioned seeing Dr T at one point. Ask him to be the ordering doctor for an IGENEX lyme test. The western blot is inconclusive. I also highly recommend "Cure Unknown", which describes the Lyme war in a way that is so close to what's going on with Pandas. It exlpains a lot about Lyme in a way that's way to understand. Lyme could be behind the rages. Like Pandas, you want to get to an expert. Time is not on your side with Lyme.

 

 

Yes, we have seen Dr. T twice and had a few phone consults with him. I think he's wonderful and I only wish he were easier to get hold of.

I will ask about that test, thanks. I believe, as I have stated, without hesitation, that the co-infections are creating the rages. She raged before her tick bite, though (we may have missed a bite - but I don't think...) - 3 months before she had her tonsils out was a pretty rough time here - I can remember pretty far back, and I'd say there was a turning point post MMR shot (#2). She had a rash, fever, and was extremely irritable from it. Of course, the ped at the time said.. just give her Motrin, she'll be fine. IMHO, that was the turning point for her immune system.

 

Also, I wonder what role mycoplasm has in all of this. It seems this is another difficult infection to get rid of. I have a niece with similar rages (she's 18 now) whose myco levels are ridiculously high (somewhere around 3000). She is currently on antibiotics and does not show overt signs of being sick - and I don't know if there are definitive treatments for "chronic" mycoplasm. My hunch is that is a big factor here.

 

Thanks!

Noelle