thoughts on what to do

[bmom]

It seems that we are back on a roller coaster of symptoms and I was hoping to get some opinions. We had IVIG close to a year ago. Things have been pretty good over that year even when we all got strep. Everytime we had an increase of symptoms, we did a full dose round of Augmentin on my son and things seemed to settle down to his base line which was little to no tics and night time separation. These symptoms were not bad and we were fine. His usual dose of antibiotic is 500 mg a day of Augmentin. When things act up, we go to 1000 mg of Augmentin for 10 - 14 days and then back down to usual dose. In August, he lost 2 teeth and right after had a tooth cleaning. Things got bad again, and we did full dose. Things slowly settled with some minor ticcing in Augut. September hit and we seem to be on a roller coaster of symptoms. He started back up with around 3 tics continuously. I took him for a strep culture which was negative. He didn't seem to be sick, so I couldn't put my finger on why he was having problems. We got a full round of Azith in case and did that. That seems to have gotten things back to baseline, but only for a few days. 4 days after full strength Azith ended, he was back to ticcing. I upped the Augmentin, which didn't seem to settle things and then he got the H1N1 flu while on full dose. I figured that the symptoms were due to the flu and he just started having problems a few days before. I continued with full dose for 10 days and things went back to base line, flu gone and down to 500 mg Augmentin. All was well for 6 days post full strenght (approx. 8 days past flu symptoms). Now we are back to ticcing for the last 2 days. He is showing no signs of sickness currently and it feels like we are back to roller coaster of symptoms with barely anytime of base line. I emailed Dr. K with several questions. 1. If he is reacting to flu, does this mean IVIG is not working? 2. We are almost at 1 year post IVIG and will healing continue or is this it? His response was "Let's just hope it is a bump in the road and see what happens in the next few weeks" My question is on the antibiotic. I upped it again yesterday. I do not know if upping it is helping or hurting things currently. Thoughts? Do I keep him on full dose for a longer period of time? Is 1000 mg of Augmentin ok? I do 500 mg in the morning and 500 mg. in the evening 12 hours a part. We have never done a steroid burst as it somewhat frightens me with the adverse responses. Any thoughts would be helpful. I do think this time of year is difficult for him as this is the time we resorted to IVIG last year, but shouldn't the antibiotics and IVIG be providing him with some sort of buffer? Thanks all that has thoughts!

[pixiesmommy]

First of all, ((hugs.)) Time of year is a BIGGIE for us too. I'm no expert, but it may be that you just have to ride it out a bit. Have you tried any supplements in addition to the abx? Flax seed oil and Magnesium (Kid Calm) in particular are supposed to be helpful with tics.

 

-Manda

[bmom]

thanks, yes he is on daily supplements of: Daily Multi high quality vitamin, 1000 mg of vit c, 200 IU of vit. E, 2 coromega fish oils, probiotic, 50 mg vit. B. We used to have him on Mag. and then mag taurate. Suprisingly, this has never seemed to help in the past. We also follow a pretty good diet with min. dairy.

[faith]

bmom,

could you just clear up the abx that you give? Do you mean you give Augmentin daily, but when he gets sick you change to Azith? or vice versa? do you do this on your own or the doc tells you what to do? Is it just tics that are roller coasting or other symptoms too?

 

 

thanks

Faith

[bmom]

He is on daily 500 mg. Augmentin per Dr. K. He used to be on 250 mg daily, but he got strep on that (positive on rapid and culture) so it was upped to 500 mg. daily. He is almost 11 and close to 100 lbs (95 I think). When symptoms increase, I either up it to 1000 mg of Augmentin for 10-14 days or sometimes can get the local doctor to prescribe a round of Azith. The Azith is just my own theory as to maybe it helps, but the local doctor will only prescribe it occasionally. His Augmentin prescribtion if for 1000 mg daily so I can up it as needed. I also add Advil when he has trouble. Do you think Augmentin is the best choice? I do not want to go to Azith daily unless he continues to have trouble for a longer period as I would like to keep him on lowest dosage of lowest antibiotic possible. Although I do hate when he has symptoms! The tics have always been his main symptom, but suffers from frequent urination periodically (not this time around except one night during flu) and constant night time separation that has never resolved even after IVIG. Prior to IVIG separation was worse and sometimes in the day and fears.

[sf_mom]

I would definitely switch antibiotics as a trail and consider another round of IVIG. Have you done the immunological work up yet? Did he fail the majority of the STREP PNEUMOCOCCAL ANTIBODY TITER serotypes? If so it would be difficult for his body to fight off any type of strep bacteria still. AND, it might warrant re-running to the test to see how he is covering. Have you rerun Cunningham's test post IVIG to see if his level of CaM Kinase has changed?

[dcmom]

SF mom- for my information: Strep pneumae is a different bacteria from GABS- correct? Where did you get the information that if those titers are low, the child cannot fight GABS? I thought pandas was a case of creating antibodies to strep that (for lack of a medical term) got confused and turned on oneself (autoimmune). Do you think that is not correct? or that I am just trying to understand...

[colleenrn]

Could you do daily Zithromax for 3 weeks and see what results you get?

 

Colleen

[EAMom]

Hey Bmom...where do you live?

 

I would switch to Azith and get current Cunningham blood tests (I forget if you've done this).

 

It is my impression that tics (vs. OCD) are more difficult to erradicate with a single IVIG. I don't know if pex is a better option or if another IVIG plus azith would do it.

[EAMom]

btw, Our dd did have an exacerbation from H1N1 (pre IVIG) and that was helped with steroids.

[sf_mom]

Wouldn't it be obvious that if they have no antibodies that a child would have no ability to fight off future infection and what little they have misfire, i.e why donor antibodies are required 'IVIG' and why some are being classified with PIDD and receiving monthly IVIG. Again, certain strains of strep are resistant to certain types of antibiotics. Based on conversations I've had with Diana and who visited Madeleine, in a petri dish Penicillin has been known to just rolls right off certain strains of strep. Specifically, the coccoid bacteria has a capsule surrounding it which is difficult to eradicate as a result. AND, as Buster stated in his post "But the point is that antibiotics just slow down an infection and rely on the immune system to mount enough macrophages to surround and destroy invaders or take out infected cells". Again why donor antibodies are often required.

 

Taken from Wikipedia.

 

Streptococcus pneumoniae, or pneumococcus, is Gram-positive, alpha-hemolytic, bile soluble diplococcus aerotolerant anaerobe and a member of the genus Streptococcus.[1] A significant human pathogenic bacterium, S. pneumoniae was recognized as a major cause of pneumonia in the late 19th century and is the subject of many humoral immunity studies.

Despite the name, the organism causes many types of pneumococcal infection other than pneumonia, including acute sinusitis, otitis media, meningitis, bacteremia, sepsis, osteomyelitis, septic arthritis, endocarditis, peritonitis, pericarditis, cellulitis, and brain abscess.

 

S. pneumoniae is the most common cause of bacterial meningitis in adults and children, and is one of the top two isolates found in ear infection, otitis media.[2] Pneumococcal pneumonia is more common in the very young and the very old.

 

S. pneumoniae can be differentiated from other members of Viridans Streptococci, some of which are also alpha hemolytic, using an optochin test, as S. pneumoniae is optochin sensitive. S. pneumoniae can also be distinguished based on its sensitivity to lysis by bile. The encapsulated, gram-positive coccoid bacteria have a distinctive morphology on gram stain, the so-called, "lancet shape." It has a polysaccharide capsule that acts as a virulence factor for the organism; more than 90 different serotypes are known, and these types differ in virulence, prevalence, and extent of drug resistance.

 

Coccoid Bacteria Clinical Significance

 

Important human pathogens caused by coccoid bacteria include staphylococci infections, some types of food poisoning, some urinary tract infections, toxic shock syndrome, gonorrhea, as well as some forms of meningitis, throat infections, pneumonias, and sinusitis.[4]

 

Hopefully all the above information helps.

 

SF mom- for my information: Strep pneumae is a different bacteria from GABS- correct? Where did you get the information that if those titers are low, the child cannot fight GABS? I thought pandas was a case of creating antibodies to strep that (for lack of a medical term) got confused and turned on oneself (autoimmune). Do you think that is not correct? or that I am just trying to understand...

[Kayanne]

Keep in mind that it also takes some time for the offending autoantibodies to subside...even after the infection is cleared. It is the antibodies causing the problem, not the infection directly.

 

Antibiotics are not going to give "overnight" results....that being said, how do you really know the infection has cleared, if it is in an inaccessable part of the body? or what if there is such a thing a "cronic strep" that is never fully cleared? (it seems to me, in these cases you are needing to look into an immune deficiency)

 

The only way to know is by observation of symptoms.

 

I do not want to go to Azith daily unless he continues to have trouble for a longer period as I would like to keep him on lowest dosage of lowest antibiotic possible

.

 

I personally feel that if you think there is a strep infection, then you should hit it hard with the largest allowable dose, for at least 10 days, and then follow up with a full strength until you see the behaviors subside.

 

In the spring, my daughter took:

---5 days of OMNICEF

---10 days of AMOX

---10 days of AUGMENTIN w/RIFAMPIN on days 7-10

---10 days of Clindamycin (300 mg/3times a day)

 

That final round of Clindamycin cleared the strep for her...she was only 42 lbs. 900 mg is the high end of dosage for adults

 

Not adaquately treating the infection, just causes the autoantibodies to continue being made and contiue causing the misfiring/inflammation in the Basal Ganglia.

 

I didn't fully understand (I still don't) much about PANDAS, when my dd6 started with all of her behavior issues, and of course hindsight is 20/20, and I feel that her ped. got it right in the end. I didn't quite realize how aggressive they really were being, but I am grateful.

 

If you are still seeing some issues after being on Augmentin for so long, then yes, I would switch antibiotics.

 

My ped told me that Clindamycin is not routinely prescribed for children because the liquid is NASTY.--and it was...dd had horrible crying fits for two days while we forced her to take it...my Husband went to a pharmacy to ask about flavoring or something...they gave us capsules, which we carefully opened and added to a spoon full of chocloate pudding.

 

There is not a lot of mention of Clindamycin on this forum...so I thought that I would bring it up again, it may be the antibiotic that helps your son.

 

I personally felt that clearing the strep was top priority, and that I would deal with any yeast issues later.

 

Good Luck,

Karen

[EAMom]

Our ped originally rx'd Clindamycin (3x day for 10 days) for our strep carrier younger dd after Augmentin didn't clear her. Needless to say, the taste was EXTREMELY nasty and we didn't make it past 2 doses. (Tears for over an hour before she got that dose down). We switched to 5 days of Azith. (once a day) which cleared her sucessfully. Easy as pie.

[peglem]

SF MOM:

Wouldn't it be obvious that if they have no antibodies that a child would have no ability to fight off future infection and what little they have misfire, i.e why donor antibodies are required 'IVIG' and why some are being classified with PIDD and receiving monthly IVIG. Again, certain strains of strep are resistant to certain types of antibiotics. Based on conversations I've had with Diana and who visited Madeleine, in a petri dish Penicillin has been known to just rolls right off certain strains of strep. Specifically, the coccoid bacteria has a capsule surrounding it which is difficult to eradicate as a result. AND, as Buster stated in his post "But the point is that antibiotics just slow down an infection and rely on the immune system to mount enough macrophages to surround and destroy invaders or take out infected cells". Again why donor antibodies are often required.

 

But, if they have PANDAS, they HAVE to be making antibodies to at least some strep antigens or there would be no antibodies to cross react with the basal ganglia cells. My daughter has chronic strep and has some IgA and IgG subclass deficiencies, yet she passed the pneumoccus titers test (she responded after 2 vaccines) So, her body is able to mount an immune response to that, and yet can not clear itself of GABHS, and yet shows an immune response to GABHS (if the Cunninham tests are any indication. I just think there is not enough known about the relationship of the pneumoccal titer response to GABHS to make any definitive judgements. But, if failing that test gets you the treatment your child needs to recover from PANDAS...YEA!

[bmom]

We live in northern Nevada. I was considering a phone consult with Dr. Latimer. Does she do that? Is the immune testing to get IVIG paid for? Is that all that it is good for? Can they actually help immune issues? We did do 5 weeks Azith prior to IVIG that did not help. Considering steroid burst if things continue. I just worry as it sometimes seems to make tics worse and I just want to "Do no harm!" At over $10,000 cost for IVIG, we do not take it lightly. But of course would do it again if needed. I would just love to know for sure it would help.