justinekno

My son is currently taking Pennicillen VK (have a call into the dr to try to get something stronger but for now...) and the pharmacist told me that pennicillen is better absorbed on an empty stomach. She suggested one hour before eating or two hours after. Put that together with timing the probiotic (2 hours after the antibiotic) and it gets complicated! I have had to create a spreadsheet for all supplements and antibiotic). Has anyone heard this from their dr or pharmacist? I know some people have mentioned giving the antibiotic with food which to be honest, I have always done. I also remember reading in the Saving Sammy book how his mom made sure she spaced out his meds properly, i.e., twice a day would be twelve hours apart, three times a day would be every four hours...

I don't see any information about the tests on the website for Dr. Cunningham. Is it just a best kept secret? I was curious if she is still offering the tests. Has anyone received a test from her recently?

Fortunately it was my GP and not the dr that my son and husband see. That dr is totally on board with PANDAS and so I have left a message with his office to see if we can all get the culture.

My strep rapid test came back negative. Interestingly, my dr's office doesn't do the 24 hr test - they say their rapid test is 98% accurate versus a accuracy rate of 92% for the longer test. Is that true for anyone else's dr? Since my only symptom is a sore throat, my dr gave me a prescription for Zith thinking that it is probably bacterial. While I was there, I asked him about PANDAS - at first he thought I wanted to talk about the animal but then said he has heard of PANDAS but didn't know much about it. He offered to do some research for me but since we are working with an integrative dr who seems to know more on the subject, I didn't pursue the offer. What I did find out from my dr, which I found interesting, was that over 90% of ear and sinus infections are caused by strep. The dr's don't typically do a throat swab, instead they just prescribe an antibiotic since they would do that even with a neg strep result. I started thinking of how many sinus and ear infections we have had in our house not just with my younger son.

From reading various posts, the most recent from "wornoutmom". I am wondering if it makes sense to do the Cunningham/ Cam Kinase test before you do anything else? We are fairly new to this and don't have a true PANDAS diagnosis as yet. From listening to others, it sounds like the Cunningham test somewhat justifies going down the path of getting a PANDAS diagnosis. Any thoughts? Justine

Thank you for the article link. Yes, I did read it. I am actually on my way to our local dr (our integrative dr is the one who is an hour away) to get a culture. I will make sure they do a rapid and regular culture. I usually never ask for the regular one but will from now on. I plan on asking our integrative dr to put my son on a different med. We did see improvement for a couple of days and now day 5 we are back to square one.

This is where it gets somewhat confusing to me. I've read that it can take several doses of an antibiotic before you see progress but that could also mean that the antibiotic isn't working or that it's not PANDAS. Also, if we're assuming his exposure to strep was seven years ago, how can a strep culture come up positive? His symptoms have never changed. Maybe I'm not clearly understanding PANDAS? The tic seems to be back to where it was before the antibiotics. He was doing great yesterday - hardly any tics. An ironic side note, I have had a horrible sore throat (no other cold symptoms just a bad cough) for the past three days. All of this talk about strep and now I'm wondering about myself! I was just telling my husband the other day that I have never had strep (he gets it all of the time). I did put a call into our dr just now. He is an hour away so it's a little trickier to run in for a culture.

That could describe my son - difficult at times, short tempered, and easily frustrated. My son does struggle with math and writing though. But I never really thought I saw OCD behaviors until I started thinking back to how he has to have the cans lined up just so in the cupboard when he helps me unload the groceries or how he straightens things in stores. I always tell him he doesn't work there and so he doesn't have to clean up! Now I wonder if that's an OCD characteristic.

No, he has never had a negative strep. The two times he did test positive for strep were totally surprising to me. He didn't have a sore throat, just a fever. We actually went to the dr to check his ears. When the recent bloodwork was done, our dr didn't do a throat culture. His Anti-dsDNA was 27 (ref range <150) and the Anti-Streptolysin Ab titer was 97.8 (ref range 0.0-200.0). Our dr felt it was worth trying the antibiotics regardless of the results. Should he have done a culture as well? Has your child ever had a negative strep test?

I apologize for seeming ignorant but I am trying to wrap my brain around this and boy it's overwhelming. From what I have read on the PANDAS Network "there will have been a strep event up to 4 to 6 months prior to onset" then does that mean that since my son's symptoms allegedly started at age 3 - and have continued for the past seven years with no major wax and wane (other than when he is sick), that his initial strep exposure would have been when he was 3? I do know he has had strep twice (positive culture) - at age 5 and age 8 - but the tics have always been there.

I did read this book. Well actually skimmed through it. I'm not one to read stuff (or watch movies) about kids suffering either but this one was from the boy's perspective and some of his own stories were funny. Of course I had to first skip to the end to make sure he was okay now and then I read it! I might run to Borders today and poke through their medical books. I am trying to understand the whole immune system and antibodies, etc. I was never good at science so this journey is really confusing to me. I see how much you and all of the others on this board know and I just feel so far off from having that knowledge. It's frustrating but I will keep trying!

Are there any good books on PANDAS? I read "Saving Sammy" but I'm wondering if there is more of a medical book explaining PANDAS in more detail. Justine

Here's another strange thing - whenever my son gets sick, a fever or a stomach bug, the tics go away - completely. That led us to believe that it was perhaps food related since when he's sick, he doesn't eat much. Now I'm wondering if there's something else to it. Hmmm. So much to understand. He can take ibuprofen so we could try that "experiment" but to be honest, he's been on the antibiotic for four days and the tics have lessened quite a bit. More to understand. No wonder I'm always so tired!!

My concern with trying to peg this as PANDAS is that he has had this eye tic since he was 3yrs old. We have seen a neurologists for the past 7 yrs and was just told that he will outgrow it. After doing alot of research I got to thinking that there has to be some reason for it so we went down the road of seeing an integrative dr who brought up the idea of PANDAS after ruling out some other things. We do have days where the tic is less than others but nothing more than days. It was so long ago that it started it's hard to remember if it was an "overnight" thing. He definitely meets all of the other PANDAS symptoms so I think it is worth exploring. If this antibiotic doesn't work, I think I will ask my dr at our visit in March if could consult with one of the PANDAS dr's. Thank you for the advice. It is so hard to travel this road - I feel like all I do is research but if it will help my son then it will all be worth it.

Thank you both for the replies. I was looking through some labwork that we had done for gastro issues and I noticed that he was at the high mid-range for alpha & gamma haemolytic streptococcus. Is either the same "strep" that is at the root of PANDAS? He is also very deficient in zinc but I'm not sure if that plays any part in a diagnosis other than the sensitivity to light that I read about on the PANDAS website. We will have the rest of the family tested for strep too.

This is my first time posting under the PANDAS board but I have posted on the tics board. My youngest son has had tics since 3 yrs old and after many tests and treatment for gut issues, we are exploring the possibility of PANDAS. Our dr has ran the bloodwork for strep and felt he was borderline so it made sense to do a round of antibiotics. We just started three days ago. My question is - can PANDAS cause constant tics and ocd tendencies or does it have to come in waves? At what point do you confidently say it's not PANDAS and move on? Thank you so much for all of your stories that you share. It's very comforting to know we're not alone Justine

The pharmacy did mention taking it out of the fridge 15-20 minutes before giving the shot. We are using the MB12 nasal spray with my son who has an eye tic and showed a B12 deficiency along with many gut issues. I can't say I see a big change (it's been two months) but my son says his head feels less "busy" so I guess we will keep with it for a bit longer.

Do you have any problems with stinging? My husband is taking them for a deficiency. He had his colon removed three years ago (history of Colitis) and the dr (integrative) he is seeing is trying to help him get some nutrients into his body.

Can anyone tell me if MB12 injection shots should be refrigerated? Our doctor says no but the pharmacy says it helps to reduce clotting. Thanks, Justine

I have been reading this board for quite a while and am really amazed at how much you guys know! I feel like I need a chemistry degree to understand any of it. My son is 9 yrs old and has had an eye tic since he was 3. He also has a history of petit mal seizures (and a febrile one shortly after a series of vaccines) but his last two 24 hr EEG and a couple of shorter ones have been normal (done two years ago). He has not been on medicine for almost three years. Apparently the area of the brain that was affected by the seizures is an area which develops towards puberty and that is why these types of seizures are outgrown. One thing to note - the eye tic and the petit mal seizure were the same characteristic - blinking. You couldn't tell which was which unless he was attached to an EEG machine. The neurologists tells us that the eye tic is something that will go away and is common with kids who have the kind of history my son has. We have a family history of seizures (I had a febrile one at 2 yrs old and my sister had grand mal ones as a child, outgrew them and they returned when she turned 40). We also have a family history of migraines and intestinal disorders. We have no history of tic disorders that I know about. The interesting thing was that if my son got a stomach bug and didn't eat, the eye tic would go away, start him back eating and it would return. We started to think it was food related - even the neurologist suggested keeping a food diary. Even our pediatrician agreed. This started us down the path we are now traveling. We started first with the Feinghold Diet and we do seem to see more blinking when my son eats sugar or alot of fruit (he loves fruit). We have started seeing an integrative dr who did some recent testing. My son's IGg testing showed 33 sensitivities and his stool testing showed bacteria (enterobacter cloacae) in the gut (we have constipation issues too) and the metabolic analysis profile showed B12 and folic acid deficiencies and a relative need for vitamin C. The profile also showed bacterial dysbiosis and mild amino acid malabsorption. The dr has my son taking the following: Vit C - 500 mg. Vit D - 1000 IU (blood test showed normal but since this is wintertime and we live in the Northeast, we are supplementing Zinc - 40 mg (these levels were very low) magnesium - 480 mg (levels were low) Folinic Acid - 800 mcg - twice daily - this seems high and I am concerned about some reports I read (which was very confusing to me) about Folic Acid lowering the seizure threshold. Is that true? Or can a deficiency cause seizures? Enzyme Complete Dpp-IV - one with every meal Saccharomyces Boulardii - one - twice a day MindLynx Probiotic - 1/4 tsp twice a day MB12 - nasal spray - daily The other thing the dr wants to have my son take is an antibiotic for the bacteria. My concern is that the recommendation from the lab was Septra. I did have it compounded to remove everything my son is sensitive to but I am not comfortable with the side effects. The other choice is to use herbs - Plant Tannins & Uva-Ursi - but with my son's seizure history, I am not sure if this would be a good way to go either. So confusing! So that's our story. Any thoughts, comments or suggestions are welcome. I feel that you guys probably know so much more than I do. I just want to help my son. Thanks, Justine