missionmom

So sorry, I should read more carefully before replying - I see you use goat kefir!

Yeast side effects are very nasty indeed. Do you use a strong heavy dose probiotic? That will help. Dietary changes can help huge too - but your naturopath has probably given you all that info. I am wondering if anyone has used coconut oil on this site for its natural antibiotic properties, in lieu of a prescription antibiotic (even temporarily)? Before all this PANDAS stuff, another of my DS had strep and we used coconut oil for 4 straight days, 2x day, successfully. Lots of great info out there on it. Just wondering if anyone on the forum has tried it?

Yuck

One DS, now 19, had chronic constipation with occasional diarrhea mixed in. Lots of gas, discomfort and "pain that went up to his heart". After I insisted they test, labwork showed food sensitivities. Altered diet and found cyclic pattern that prompted deeper testing.....found klebsiella pneumonia, pathogenic levels of candida, and blastocysts hominis (parasite - not too uncommon implicated in all sorts of disease processes) growing in gut. Awful, but treatable. Used big gun antibiotics, antifungals and probiotics. Took quite awhile but he became "regular" and much healthier.

Is she on any probiotics to control candida/yeast build up during a course of antibiotics? One of my DS was way out of control emotionally whenever the candida was out of control. This would be followed by a heavy brain fog and achey flu-y feeling for a couple of days as the probiotic crowded out the bad stuff and created a die-off reaction. Hope whatever it is calms quickly.

Ah.

Have looked in the acronyms and can't find LLMD or DAN doctor. WIll someone define these for me please?

I believe we were told that there was one result that may be slightly skewed if not fasting, but it wasn't the IgG subclasses. I'm pretty sure it had to do with cholesterol?

Very curious about this also. Sounds like me from the google search description. 2 miscarriages before giving birth to DS with PANDAS. Do you have any other references?

BTW - DS also really likes GABA to control anxiety and tics. He uses sublingual or chewable during the day and a stronger dose to calm down to sleep at night.

We have used SAM-E, l-trytophan and 5HTP. LIke them all, all helped. Stuck with 5HTP as it is cheapest and has same effect as l-trytophan. We just use the SAM-E situationally for depression type symptoms that sometimes arise.

Were your titer raised before and after the surgery? What changes did you and family members experience post-surgery?

Hair twirling is a huge symptom in 2 of my 3 DS.

Thank you

Thanks to all, have found this so helpful and inspiring. Need more than 24 hours in the day to keep up with researching, though! Son has started zith (getting the acronyms, and yes, nocturnal enuresis), although it is a short term prescription. DS already wants to try ivig or PEX but we are meeting with speculation and resistence moving forward from the ID doc, rheumatologist and neurologist coming up though. Not sure if I mentioned earlier that he also had a full seizure last summer. Nothing conclusive, chalked up to an aberrant drug interaction......although it is being looked at anew now. Luck to you and us all

emmally - pm to you was rejected. Just says you can't receive any. Would love to talk more.

Hi, still brand new here....I'm the one with the 21 yo ds just being diagnosed (me - 100% sure). This has always been a part of my ds life, as well as intermittent NE. It is probably the most bothersome symptom for him. Been to many urologists over the years - no diagnoses ever - just said he'll probably grow out of it (ha!) Anyway, I read somewhere in the last couple of days that there is a connection between the basal ganglia and the first internal bladder sphincter. With this type of disorder the first sphincter is supposed to remain closed until the bladder fills to a "normal" full capacity, opens early, causing pressure on the second sphincter that tells the body its time to go NOW. Hence, lots of visits to the bathroom with little production and the feeling of never being quite fully empty. Hope I did this justice!

HIs is nocturnal only, although he has always had the daytime urgency as well. Interesting to ready why that happens in connection with this illness. The NE goes and goes with flairs, as do his tics/OCD. But, as I mentioned, from freshman dorms to full time college + work - he has been sick a lot. I also wondered..........has anyone identified a non-strep illness trigger through medical tests? I think my DS may have a pneumonia trigger, his brother was found to have klebsiella pneumonia growing in his gut as a 6yo.

First, I am so grateful to find this site. Have cried happily many times in the last 2 weeks since finding info on PANDAS. I have a 21 yo son who is a poster child for this disorder. He was very sick as a 3 year old, ran many courses of antibiotics - and ended up with clostridium difficile. For many reasons since then we have used mostly alternative medicine to deal with health issues - with much success - but not all. I am so sad I didn't find this earlier in his life. I've always noticed the link between his symptoms and illness! Anyway, he did pretty well until college. With the increase in illness his symptoms have flaired continually. It has been so hard for him to be a 21 year old with enuresis! No doctor every thought of PANDAS in connection with this symptom. Last summer he had a seizure and extreme increase in tics. Doing research I ended up finding all of you (thank you). He is now undergoing testing. I have to say the medical group, although skeptical, has spent a lot of time on him. Current results show: ASO 641 but throat swab negative. He was just diagnosed with IgG 2 and 4 deficiency, as well as IgM. We are researching a familial component with that. He is scheduled for further tests - for Lyme as well as others, and has appts with the allergist, ID dr, upcoming with a rheumatologist and neurosurgeon. Brain MRI was normal. So, OKAY, my questions: Does anyone know how to get the anti-basal ganglia antibody test going? Should we push for Ivig for the enuresis symptoms - have read some of you having great success - and allergist mentioned it as an option. Does anyone know if there is a forum aimed at adults not diagnosed as children with PANDAS? I am soo grateful for any input or advice.