P_Mom

I wouldn't panic (lol..would I??)....I am sure whatever it is will resolve with time. It does look like, from the link Pam posted,that it could be some form of hepatitis, drug induced or whatever. I think hep produces the quickest, largest increase.

No need to apologize! Just brainstorming. Gulp! Make sure they rule out hepatitis.

Jill....yep, that is exactly what I am wondering. Does anyone out there have any AST and ALT results for themselves or anyones else (non PANDAS) in the family? Just curious what they are as mine are so low...so are hubbys and so are my other sons....yes, he is PANDAS but very mild. (in fact no noticeable flair for him this school year for the first time ever!) Pam...interesting....so, in the beginning, he had higher end AST...5 more points and he would be flagged. My question is...why??? (top range is 40)...ALT low...no antibiotics. Same for next one...still no antibiotics....(but PANDAS is going on...like in the first reading) When antibiotics are given, the ALT, liver specific rises, along with AST (which is now flagged high) but then that could be picking up brain inflammation AND liver stress......right? Same with last one.....raised ALT and out of range AST...perhaps fo the same reasons? Am I making any sense? I am just thinking that raised AST may mean more than liver stress...maybe brain "stress" in our kids. Anyone got some control numbers? I'll dig up mine, hubby's and others sons and post in a few.....but, I know they are low. Okay...actually found the rest of ours. Mine (these were actually taken while I was getting IV Rocephin every day for my misdiagnosed Lyme...grrrrr).....they took labs every week. 4/01/09 AST 13 (low) ALT 14 3/25/09 AST 16 ALT 14 3/18/09 AST 13 (low) ALT 9 Older sons most recent hep. profile........AST 22 ALT 14 (on exactly same meds and supps. as younger brother...and for the same time frame) Hubbys most recent....... AST 19 ALT 25 (My younger PANDAS sons numbers are in first post) See what I mean? These are supposed to be low.....why are our kids on upper end or elevated???? How can two 42 year olds have better numbers than a 4 year old???

So, could it be possible that brain inflammation from PANDAS could be playing a role?? (mainly in the AST?)

Jill...I have read to discontinue meds for two months...then retest. But, I still wonder if high AST is directly related to the liver. It is not specific for that. ALT...most specific for liver. Pam...that is good to hear! Thanks. Meds were not involved in my sons first "high" AST....he was only 4 and on no meds. It just doesn't seem right to me that these kids have higher levels....(unless they are on high doose antibiotics known to aggravate the liver..and/or ibuprophen/acetominophen, etc. That link gives a good list of meds) You'd think their livers are fresh and new......especially at 4 years old and never on any meds, etc.....why these higher enzymes that shouldn't really be there in the first place? Mine are always low, low...bottom range and sometimes off range low.......seems strange to me for the kids to be higher, but I could be on a goose chase. Could it have somethng to do with growth?

This is a good link for causes of raised ALT and AST. http://www.medicinenet.com/liver_blood_tests/page3.htm

Jill... albumin, Alk Phosphatase, Bilirubin, SGOT/AST, SGPT/ALT, total protein, gGtp are the standard liver tests. I could be wrong, but, I do not believe these tests are part of a CBC. My boys liver results were always part of a Hepatic Profile. DcMom.....I would definitely ask about that 98 result. (was that ALT or AST....you put ALT for both)

Thanks.......problem is, I don't think my son can atriculate what a tic is. He was never a big ticcer....most tics occurred when he was 4.....very mild and intermittent ones since then. He is now 8. I asked him....he kinda explained what I thought seemed like a tic. He said he gets this weird feeling in his throat and then he spits up. Once he almost did it when brushing his teeth but he told me he was able to "keep it down." Sounds like a tic...doesn't it. Gastro wants to do a endoscopy next.....ugh...I hate to test if it is just a tic.....

Thanks! Chemar.....how did you determine they were tics and not GERD or something like that? We are in the midst of trying to figure out what is going on with my son as far as this spitting up thing goes.

Can tics be internal? Can it be possible to have a "spitting up" tic? Like when a kid eats, the sensory stuff happens and causes a tic that makes the stomach and/or esophagus contract and "spit up" food into mouth? Thanks!

Hi everyone... Okay, I am throwing this out there because I am interested if any of you see the same pattern. We are in the midst of trying to figure out why my younger son continues to "spit up" in his mouth a lot.....especially shortly after eating. We are seeing a gastro at CHP......he is great, by the way. Motility, spasticity, structure abnormalities, rumination...have been ruled out. GERD is highly questionable because it doesn't really respond to meds (but, maybe we didn't try them long enough)......the regurigitation tastes like his food...not acidic yet...doesn't burn. Anyway, just got some labs back and everything is normal. (I am almost thinking a tic...or something related to PANDAS...as is the gastro, believe it or not)....well, all is normal except I noticed his AST was upper end. (but still normal) I immediately thought the Augmentin...but, don't think so anymore. My levels are rock bottom end of normal...his brother's are low...they have been on the same meds. He is only on 250 mg Aug. daily. So, I went looking back through his labs. 4 years ago when PANDAS hit...he had labs done when he was just a month or so out of bad episode....his AST was 40....can't get any higher without being flagged....ALT was 28. Two years later...after being on Penicillin for a year and Aug. for a year....his AST was was 28 and ALT was 14.....(he was doing really well at this time)...now, a week ago his AST is 32 and ALT is 29. Not a huge difference, but, still in the high range when these enzymes really shouldn't be there...they are normally confined to the liver and , this is the interesting part, the AST is found in the liver and other organs..the brain being one of them. So, right after bad episode it was at its highest......it is released when tissues are damaged, including the brain. Could this be a way to possibly monitor PANDAS? Do PANDAS kids tend to have higher AST? Anybody else see this? That is why I am not thinking meds....his AST was at his highest before he even started antibiotics...he doesn't take Advil, etc.....and the AST was at its lowest after 2 years of antibiotics.....and his PANDAS was in almost complete remission at that time. The AST has crept up a bit this time...just a little, but strep exposure is rampant and he has been a bit touchy lately. So, could the AST be picking up brain inflammation and have nothing to do with the liver AST (SGOT) is normally found in a diversity of tissues including liver, heart, muscle, kidney, and brain. It is released into serum when any one of these tissues is damaged. For example, its level in serum rises with heart attacks and with muscle disorders. It is therefore, not a highly specific indicator of liver injury. ALT (SGPT) is, by contrast, normally found largely in the liver. This is not to say that it is exclusively located in liver, but that is where it is most concentrated. It is released into the bloodstream as the result of liver injury. It therefore serves as a fairly specific indicator of liver status.

Bumping for Philly.....will probably continue to do so for the next couple of days. I think the best thing to do would be to contact Philly privately with explanations and apologies. Such a difficult thing to see happen as a parent.

I am just throwing this out there based on my experience...maybe relevant, maybe not. But, when I was being treated for misdiagnosed Lyme, the multiple, high dose antibiotics put me into "bone marrow supression" and my white blood cells completely plummeted. I started to get infection after infection which I could not clear. (lack of white blood cells) They pulled me off antibiotics immediately until my counts recovered. I think IF this would happen to a PANDAS child, it couldn't be good. I would just recommend a CBC every couple months to monitor blood counts...maybe the high dose antibiotics are making her more susceptible to infection?

BELIEVE IT!!

Thanks for all the replies. Jill, yeah...I think they just want to get things under control for now. For those doing monthly IVIG...what dose are you getting? There is a concern about the monthly lower dose the doc is suggesting for her son.

A year or so ago? I'm still here, 4 years later! I think I have become obsessed with PANDAS after what happened to our family....just can't let it go!

I have a friend who has a son diagnosed with PANDAS a few years ago. She visits this forum regularly, but, does not post. Anyway, her son received two high dose IVIG's so far (good improvement with first...not so great with second....neither was lasting), proph. antibiotics (with some full doses thrown in there for a month or so).....and 2 steroid bursts. (some improvement) Long story short, her son (and the entire family as a result) is really struggling. He is now unable to attend school due to severe rage episodes, some OCD issues, etc. Her doc is now recommending Abilify (one of the docs she works with)...does anyone have experience with Abilify? What were the results? Her immunologist is recommending monthly IVIG starting at 1 mg and tapering down over time. (I hope I got that right) She is torn as to whether she should start Abilify or wait and do the monthly IVIG. Can she do both at once? If so, and she sees improvement...how will she knows what is working? Any suggestions would be greatly appreciated as her family is really in distress right now. She will be looking for your opinions and experiences. PHILLY.......what dose does your son get and how often? (my friend would like to know) Oh...her son has had extensive testing....no co-infections or Lyme involved.

Exactly,Eljomom! What pot is being stirred? Good conversations and differing opinions? Sounds like a good pot to be stirred to me. It has potential to save a child! LLM, "You and I have had this conversation before and I don't want to have it again"....don't remember it and I am not keeping track......but, responding to a specific person's post, mine, invites response and conversation...right? By the way.....that post was not mine that you were referring to...it was Philly's...however, I bumped it because I feel it gave great insight and people should read it very carefully.

I don't understand why, when someone posts their views, opinions and experiences that don't flow with Lyme......why is it considered "drama"?

I tried to pm you....in box is full. How are you doing?

Thanks Vickie! Couldn't have said it better myself!

Thanks for the link, Norcalmom! It is quite an interesting read....I thought this was significant regarding the Lyme specific band 31 that many speak of. (looks like antistreptococcal IGM antibodies recognize and react with this band) " We found amino acid sequence similarity between B. burgdorferi OspA and streptococcal M protein, which suggested that B. burgdorferi and S. pyogenes share epitopes which cross-react with self-components. This reactivity was investigated further by Western analysis. Infected NZB and DBA/2 mice both demonstrated anti-B. burgdorferi IgM reactivity with a band at 31 kDa (marked by recombinant B. burgdorferi OspA) (Fig. 7). In addition, the antistreptococcal MAbs recognized this same 31-kDa OspA protein." Jennifer...to answer your questions directly. No, presence of band 41 in and of itself is of no diagnostic significance for Lyme. It is a very common finding in the general population. The presence of band 41 on Lyme Western Blot also has nothing to do with whether PANDAS exists or not. PANDAS does exist in and of itself. Yes, Lyme is generally treated with high doses of multiple antibiotics.

Norcalmom, Hi. This is really interesting to me. I do know that Cunningham did a mouse study on mice and strep antibodies, showing that strep antibodies alone can produce sudden onset repetitive/obsessive symptoms, but, I was not aware she did a mouse study of the sort with Lyme antibodies! Did she find the same results with the Lyme antibodies? If so, this information would help a lot of people who are struggling to accept the correlation of sudden onset ocd/tics associated with strep (PANDAS) to also be associated with Lyme antibodies. Could you please provide additional info. on that study? THANKS! And, for newcomers, Norcalmom is right. Cunningham has been studying Lyme for some time. It is her strong belief, as a neutral researcher, that after a certain amount of time from onset of symptoms (roughly 4-8 weeks)... a positive IGM alone in the absence of a positive IGG should not be used or regarded as diagnositc for Lyme. The likely of a falso positive IGM is high in the group. Just giving all sides so newcomers can be informed. I know many debate/refute this finding, fair enough, but, I think it is important for everyone to be made aware of the differing opinions so that they may make an educated decision. I am also curiou how many diagnosed with Lyme are being diagnosed because of only positive IGM?

Peg...is she due for another IVIG? When was her last one?