Rough Day with no Zithro

[tu4four]

Today has been a rough day. We have been on zithro for about 2 weeks, and as crazy as this sounds, our local doc (love her, but not a PANDAS doc--we have 2 appointments but a long time to wait) suggested that we give zithro every other day after the initial week or so. Yesterday was her first day of no zithro. Today was horrible.

 

It was her birthday and she started raging almost from the instant that she got up. She wrote on the bathroom wall ("unhappy birthday--all because of MOM!!!) She was initially upset because she didn't have the shirt that she wanted to wear. She went on to throw things, hit her brother in the face with a water bottle, scream and yell insults at everyone around. Then she went outside. I went out after her, and suddenly she was gone. My neighbor and I looked all over the neighborhood. I came into the house a couple of times and told my 16 year old, if we don't find her, I'm going to have to call the police.

 

Finally, after I called my husband's supervisor and got him out of class (he teaches at a nursing school), i saw her....under our dining room table where she heard everything I said about calling the police-- and did not come out.

She came out and then got to a pretty agreeable place--I was going to take her to school. We went to the car, she was fine, then she couldn't focus to get her shoes on, then she couldn't stand the way they felt---eventually she kicked my windshield and made a small crack a very large one.

 

I had already given advil and today's dose of zithro--which i think helped her to get herself together initially. But at this point, she couldn't get herself back together, and I had to give her a med that her old psych had given us in case of emergencies like this one. She slept the rest of the day.

 

So my question--for those of you that have pretty straight-forward PANDAS, do your kiddos go through this? She is also positive for Lyme, but negative for bartonella and babesia. Regardless, this behavior seems to suggest bartonella. Any thoughts?

[tpotter]

Today has been a rough day. We have been on zithro for about 2 weeks, and as crazy as this sounds, our local doc (love her, but not a PANDAS doc--we have 2 appointments but a long time to wait) suggested that we give zithro every other day after the initial week or so. Yesterday was her first day of no zithro. Today was horrible.

 

It was her birthday and she started raging almost from the instant that she got up. She wrote on the bathroom wall ("unhappy birthday--all because of MOM!!!) She was initially upset because she didn't have the shirt that she wanted to wear. She went on to throw things, hit her brother in the face with a water bottle, scream and yell insults at everyone around. Then she went outside. I went out after her, and suddenly she was gone. My neighbor and I looked all over the neighborhood. I came into the house a couple of times and told my 16 year old, if we don't find her, I'm going to have to call the police.

 

Finally, after I called my husband's supervisor and got him out of class (he teaches at a nursing school), i saw her....under our dining room table where she heard everything I said about calling the police-- and did not come out.

She came out and then got to a pretty agreeable place--I was going to take her to school. We went to the car, she was fine, then she couldn't focus to get her shoes on, then she couldn't stand the way they felt---eventually she kicked my windshield and made a small crack a very large one.

 

I had already given advil and today's dose of zithro--which i think helped her to get herself together initially. But at this point, she couldn't get herself back together, and I had to give her a med that her old psych had given us in case of emergencies like this one. She slept the rest of the day.

 

So my question--for those of you that have pretty straight-forward PANDAS, do your kiddos go through this? She is also positive for Lyme, but negative for bartonella and babesia. Regardless, this behavior seems to suggest bartonella. Any thoughts?

 

I agree with everything you have said. Definitely get hold of your doc ASAP, and get her back on that azith daily. I would hope your doc would listen to you about these symptoms, and possibly be willing to try upping her dose to see if the symptoms decrease. FYI, Azith is used to treat bartonella.

 

Another thing to do in the meantime (and during the ragey types of behavior) is to try a handful of peanuts and/or 1 - 2 T of peanutbutter. We stumbled on this purely by chance, and it took about 2 years before I found out that pb is full of tryptophan (precursor to seratonin) and also being high in fat, may take the tryptophan straight to her brain (this is all my theory, incidentally...not based on an research...just my personal observation. But, when my son would get that way (and he would get violent, too), the pb (which, he hated, so it certainly wasn't a placebo effect, because I had to fight him to take it) would kick in within 1 - 5 minutes!

 

I would also suggest that you give her 5-htp (available from vitamin shoppe and other places.

 

Do you have an LLMD? She very well may have bartonella and others, as well...just may not test positive yet. Does she have any stretch marks anywhere on her body? These can actually be a rash from bartonella (if she does...look online for pictures to see if they look similar.) DS had them for several years, and of course we thought it was only because he had gained weight. The decreased 50% when he was put on IV abx for an enlarged spleen, elevated liver enzymes and high ASO (the first 2 were symptoms of babesia.)

 

If you don't have an LLMD, and want the name of one, let me know. I'll PM it to you.

 

Good luck. We've been there, and it's very scary.

[beeskneesmommy]

My son was straight forward PANDAS for acouple of years, but tested for borderline Lyme and Bartonella in July, 2011. This is also when we started the combo of Azith and Augmentin (after almost a year of Augmentin or Cefdinir alone, at diff. times). We see a multidisciplinary team of PANDAS docs. Here is what I have been told, and what I have observed to be true. Azith/Augmentin combo was prescribed by Dr. Bouboulis. Azith was to address any Lyme/Bart in there, and Augmentin for the Strep. DS did well, but herxed on and off for the 1st 2-3 weeks. Dr. latimer recently told me that herx is more likely to be seen with Lyme than with strep. After the initial 2 weeks, he began the long road to recovery. That abx combo has taken him very, very far. Dr. Bouboulis told me that starting/stopping abx can actually cause a disassociation betw. the immune system and antibodies, causing worsening of the autoimmune process. We have stayed steady on the abx combo. long term, which has made a huge difference. Long term abx, in my opionion, are needed to knock out the infection(s), before IVig can be as effective.

[smartyjones]

So my question--for those of you that have pretty straight-forward PANDAS, do your kiddos go through this? She is also positive for Lyme, but negative for bartonella and babesia. Regardless, this behavior seems to suggest bartonella. Any thoughts?

 

 

so -- my ds started out as "pretty straight-forward PANDAS" -- sudden onset, high titers, positive throat culture, 100% remission in about 3 days when he got on the right abx (horrible reaction to azith, remission seen with keflex). he did have wild tantrums needing me to whole-body restrain him, much screaming and yelling, cognitive inflexibility, hding under things or liking to be in small spaces.

 

the remission didn't hold once he went off the abx - symptoms returned about 30 days after the 30 day course was over. that sent us on our healing odyssey we are still on today. we discovered many other bacteria, viruses, parasites, copper/zinc imbalance.

 

my sister is currently being treated for lyme. i am quite sure she tests neg for bartonella (likely thru quest or labcorp); however, her doc believes her symptoms to be indicative of bart and is treating her for it. i do believe that can happen quite often.

 

i am a huge fan of the book "The Explosive Child" by Ross Greene. Have you read it? I don't so much recommend it for you to change her behavior as i do for you to have suggestions on how YOU react and interact with her when she is explosive. It helped me immensely to be with him in a positive way at such trying times but not get dragged into the tantrum.

[T_Anna]

So sorry you need to deal with this. DS is on Azithro. every day. When he would go off abx he would fall apart. Crying, sad, etc.

 

I had the audacity to clean up our hallway by the entrance door and he flipped out. I got a note similar to yours, but mine had a curse word : (

 

Hang in there.

T.Anna

DS 14.5

[tu4four]

Today has continued to be rough with raging that seems to get more and more out of control. I'm afraid that she's going to hurt someone and don't really know how to hold out until our March 15 appt.

 

Tpotter, thanks for your info about HTP-5. I will definitely get some. Do you use it during a rage or just daily? I used the peanut butter during her rage today along with 2 advil, and I do think it helped some, but after she calmed down some, she continued to alternate between hateful rage and screaming, yelling for me to help her, why can't i help her. I feel for her. At the same time, I am exhausted and tired of being told I'm the worst mom in the world, she hates me and having her tell her younger siblings how horrible i am and that i really hate them, too. She doesn't tell them these when she is reasonable, but when she is yelling, screaming, etc.

 

We saw an LLMD in MO 2 summers ago, but he was absolutely no help. He has a good reputation, but I took 3 of my kids and myself to see him (I have 4 kids), and he read off the same laundry list of things that i could do or not. He was helpful in that he gave us a ton of antibiotics, but not a lot of direction. I have that appt in March in Plano and then I have one with a doc in Colorado in June. He is not listed here, and I cannot rec him or not as I have no firsthand experience, but my good friend with a PANDAS/Lyme daughter had success with him. Til march 15, I'll be trying to hold off putting her back on psych drugs. I feel like I won't know what's what if she's being treated for Lyme/PANDAS and on those heavy drugs.

 

Thanks for your responses.

[TOaksMom]

How much azith are you giving your daughter? It's sad how Dr.'s will give our kids Zyprexa and Abilify by the boatload indefinitely but tell us to give antibiotics every other day for a short time. My daughter had horrible rages from what we suspect is bartonella and they never subsided until she started combination antibiotics which Dr. Burrascano recommends: http://www.lymenet.org/BurrGuide200810.pdf

 

Her rages stopped on a combo of aztihromycin and bactrim DS which is sulfamethoxazole and trimethoprim. In an attempt to keep from taking her to a psych hospital, I had read this and tried it:

Other recent clinical experience has shown that Zithromax, which should have activity against Bartonella species, does not work here by itself. BUT, the combination of Zithromax with Bactrim has shown success in suppressing the small gram negative bacteria. http://lymemd.blogspot.com/2009/04/bartonella-first-lyme-second.html

 

I had both azith and bactrim available and we were lucky in that there was a very noticeable improvement in a couple days and remission of the rages in a couple weeks. From what I've read, Rifampin/Rifampicin is considered the best antibiotic for bartonella but it should never be taken alone or else the bart will build up resistance to it.

 

Bartonella can be found in fleas, ticks, biting flies, mosquitoes, lice, mites, and chiggers. http://www.betterhealthguy.com/joomla/blog/264-physicians-round-table-2012

[Hopeny]

If you are dealing with Lyme/bartonella I have found that burbur and parsley drops from nutramedix help a lot. You can put five drops in a little bit of water and wait one minute, then drink. Our doc said up to four times per day. She also suggested charcoal for rages but I have not tried yet. Sorry I know how hard it is. I also find baths are very soothing, when all else fails I put her in a bath with ahava Dead Sea salt (we are now using Hope flower salts) and that seems to do the trick. Finally I think it's fine to use melatonin to get them to sleep.

[Hopeny]

To add, my daughter tested negative for Bart but had symptoms, rages/foot sole pain. Four days after age started rifampin several stretch marks appeared on her arm. She is a thin child. The tests, except for galaxy, are not reliable for Bart. I am glad we treated her and did not rely on the test but went by symptoms, rage is a common Bart symptom.