RACING THOUGHTS/CONFUSION

[MamaOnAMission]

My child has racing thoughts and tons of confusion. She holds it together for awhile and then she snaps. I believe the thoughts and confusion get too much and she just can't control herself. It is very unsettling because she comes out of left field and flips and scares you to death with her confusion and racing thoughts. You just never know when it will happen. Anyone relate?

[rowingmom]

I can relate every day. Our piano teacher had to quit because he had never seen a child with such a short and unpredictable fuse. Pounding her head and legs if she made a mistake. Before her treatment started she used to bolt from the classroom several times a day because she could not handle the sound and light stimuli, and could not concentrate on anything if there was any sort of distraction. Any noise would cause ear pain. She was grouchy all the time and being around her was not fun. To escape she would head to the computer or ipod, or stick her head in a book. She never read the books through though, just jumped around reading favourite parts.

 

DD is doing fairly well at the moment. We have switched from treating lyme/bartonella with biaxin/rifampin/tindamax to lyme/babesia with azithromycin/minocycline/malarone. Although I am not sure if it is the antibiotic properties of these drugs that is doing the trick, or whether they are having some anti-inflammatory effect.

[MamaOnAMission]

I can relate every day. Our piano teacher had to quit because he had never seen a child with such a short and unpredictable fuse. Pounding her head and legs if she made a mistake. Before her treatment started she used to bolt from the classroom several times a day because she could not handle the sound and light stimuli, and could not concentrate on anything if there was any sort of distraction. Any noise would cause ear pain. She was grouchy all the time and being around her was not fun. To escape she would head to the computer or ipod, or stick her head in a book. She never read the books through though, just jumped around reading favourite parts.

 

DD is doing fairly well at the moment. We have switched from treating lyme/bartonella with biaxin/rifampin/tindamax to lyme/babesia with azithromycin/minocycline/malarone. Although I am not sure if it is the antibiotic properties of these drugs that is doing the trick, or whether they are having some anti-inflammatory effect.

[MamaOnAMission]

I am truly feeling for you rowing mom. I was wondering about the inflammation thing too. I don't think so in our case. It is so dang confusion. I had her on full dose of the mino and bactrim and she was starting to sleep but OCD was horrendous. She was hoping around on squares on the floor all day long. Counting things as she passed. She was a mess, but she started to sleep. So do I want her to sleep or do I want her to have severe OCD where she can't walk from point A to point B without it taking an hour to do it because of the OCD. :0(

And the biggest problem is that nobody can tell if it's PANDAS or Lyme/Bartonella!!! I want to to do the IVIG but insurance does not cover it. It is so sad. If psych. drug worked and didn't make her worse, I wold use them.

[rowingmom]

Our LLMD has told me she thinks that lyme/bart is causing the autoimmune PANS reactions my DD11 has. She feels that treating the lyme/bart will address the PANS. It seems to be working so far - DD has been in treatment for almost 1.5 years now and is much better than she was when we started out. Although whenever we remove even one abx from the mix there is a relapse within 3 months. It scares me to think of having to take abx for years.

 

We are some of the fortunate ones in that DD has only a very low level of OCD (drawing the same picture over and over, lining up Barbie dolls for days on end). Her PANS problems mostly involve motor/vocal ticcing (along with the other symptoms of age regressive behaviour, urinary frequency, enurisis, rages, frustration, loss of gross/fine motor control).

 

We are Canadian and are not covered by any insurance so IVIG is definately out for us.

 

I think with this round of abx either the minocycline or azithromycin is improving brain inflammation because DD is slowly improving from her last baseline, but with no herxing. There does not seem to be the die-off reactions we cycled through while pulsing tindamax, or when we started bactrim or biaxin.

 

Glad to hear your daughter is sleeping. Sleep is so important, I don't think a child can heal without sleep.

[MamaOnAMission]

Actually she is NOT sleeping. She is on Doryx and her confusion is better but it does not help severe insomnia. The mino. and bactrim helped her to get to sleep but she was REALLY mean on it.

Our PANDAS specialist says her PANDAS left her vulnerable to Lyme/Bart. She has a Cam kinase of 166 but titers are fine. Then her lyme/bart. test comes back possitive then negative. Always changing. Not accurate at all. So I don't know what this girl has. All I know is the lyme/bart. treatment seems to not make her as wild crazy as PANDAS antibiotics. It's not die off either. It never goes away. Ugh! Do some of the antibiotics that treat Lyme/Bart. also treat PANDAS? I think I heard that doxycycline works on both.

[MamaOnAMission]

rowingmom - what is the mino. and azith. treating? is it the bartonella?

[rowingmom]

Azithromycin (Wikipedia):

 

"Azithromycin is used to treat many different infections, including acute otitis media, nonstreptococcal bacterial pharyngitis, gastrointestinal infections such as traveler's diarrhea, respiratory tract infections such as pneumonia, cellulitis, babesiosis, Bartonella infection, chancroid cholera, donovanosis, leptospirosis, Lyme disease, malaria, Mycobacterium avium complex disease, Neisseria meningitis, pelvic inflammatory disease, pertussis, scrub typhus, toxoplasmosis, and salmonellosis.[5] It is used to prevent bacterial endocarditis and some sexually transmitted illnesses post sexual assault.[5] It is also effective against localized dental infections.

 

It has a similar antimicrobial spectrum as erythromycin, but is more effective against certain Gram-negative bacteria, in particular, Haemophilus influenzae.[citation needed] Azithromycin resistance has been described[6] and is endemic in many areas. Long-term use in treating Staphylococcus aureus infections with azithromycin may increase bacterial resistance to this and other macrolide antibiotics.[7]

 

Azithromycin has been shown to be effective against malaria when used in combination with artesunate or quinine; the optimal dose for this is not yet known.[8]"

 

Minocycline (Wikipedia):

 

"Minocycline is also used for other skin infections such as MRSA[9] as well as Lyme disease,[10] as the one pill twice daily 100 mg dosage is far easier for patients than the four times a day required with tetracycline or oxytetracycline. Its activity against Lyme disease is enhanced by its superior ability to cross the blood–brain barrier.

 

In various models of neurodegenerative disease, minocycline has demonstrated neurorestorative as well as neuroprotective properties. Neurodegenerative diseases such as Huntington's disease, amyotrophic lateral sclerosis and Parkinson's disease have shown a particularly beneficial response to minocycline in research studies; an antipsychotic benefit has been found in people schizophrenia and minocycline is proposed as a possible addon therapy for some schizophrenics.[33] Current[when?] research is examining the possible neuroprotective and anti-inflammatory effects of minocycline against progression of a group of neurodegenerative disorders including multiple sclerosis (MS), rheumatoid arthritis (RA), amyotrophic lateral sclerosis (ALS), Huntington's disease, and Parkinson's disease.[34][35][36][37]"

 

Although I also found this for minocycline (Wikipedia):

 

"Occasionally minocycline therapy may result in autoimmune disorders such as drug related lupus and auto-immune hepatitis; minocycline induced auto-immune hepatitis when it occurs usually occurs in men who also developed minocycline induced lupus, however, women are the most likely to develop minocycline induced lupus. Significant or complete recovery occurs in most people who develop minocycline induced autoimmune problems within a period of a couple of weeks to a year of cessation of minocycline therapy."