boysrlove24

Maybe he can give a recommendation or referral????

I read a fantastic article on PANDAS by a doctor in Fort Collins - his name is Dr. Steven Rondeau. She should research him and the drive to Fort Collins from Denver is easy.

Hi, My DS9 until now has been non-PANDAS - my older son has had tics and is battling Lyme and co-infection. My younger son has had recurrent strep infections and just had one about 3 weeks ago which was treated with clindamycin. Our integrative med doc put him on a longer course of antibiotics (augmentin) after the Clindamycin to keep the strep at bay until he has a tonsillectomy next month. Out of the blue and for the first time ever he has developed a tic (head roll that looks like he stretching his neck). I'm wondering if I should ask his doc for a stronger antibiotic? Or should he just continue on the daily augmentin? Do we just ignore the tic and see if it goes away or does our history with PANDAS and tics in our other son (plus the fact that he had strep before this started) make it obvious that we're dealing with the same for him now too? I don't know if a stronger antibiotic will help...or if it's just the extended duration on the augmentin that will eventually help...plus the tonsillectomy. Any thoughts or advice??

Hi mama4, I have been hearing a lot about Cannabinoid oil as well as Cannabis. I don't know anything at all about it...but now I'm going to start researching. I had a friend tell me yesterday that Cannabis in a pill form (cooked at a low heat so that it doesn't produce the drug effect) is showing positive results for tics and OCD. I'm nervous about it...but I'm told it's safe when properly prepared. At this point, I'll try anything to help my son with his tics... Let me know if you have tried CBD oil or if you're considering Cannabis...apparently there is an nurse in Oregon that is very current on the research and studies on the effectiveness...I might have to try to hunt her down and see what she has to say about treating Lyme and tics.

Hi everyone, Thank you all for the great input on this thread. I had an appointment with our LLMD yesterday and he basically did a complete overhaul on the protocol for my DS12. DS is having a major flare in motor and vocal tics for some unknown reason and our LLMD believes we need to beef up the anti-inflammatories to address the problem. He said that ibuprofen when taken with food for long periods of time is fine...as long as he takes it with food. So, for a month he will take 400mg of ibuprofen twice a day. He has added some interesting (I have a whole new batch of research I get to do now) new herbals/binders to the mix: - Takesumi Supreme - one scoop before bed...supposed to be an excellent charcoal binder - Pinella and Burbur - 20 drops of pinella and 10 drops of burbur -- once or twice a day - Catecholacalm - I think this is a multi with B vits and some other good stuff - Chlorella - this is an algae to help with oxygen intake, etc. Down the road he wants to add mushroom immune max, A-V drops, Cryptoplus...but we have to get DS going and stable first before adding these. We also switched his abx from Cedax to minocycline...so he's now on Mino, Biaxin and slowly adding Alinia. He also suggested LDN which Rachel mentioned in this thread...he decided to hold off on that for now...but he did bring it up so it's on his mind. Let me know if any of you have experience (good, bad or other) with any of the above...I'll update after a bit to let everyone know what has helped/not helped with inflammation after we've had some time on this plan. But I sure am doing a lot of praying that this new protocol helps my son.

Hi tj21 - thank you! When your DS flares and you give ibuprofen is it just for a few days? What's the longest you've given it to him without a break. We only give 300mg once a day but I'm still worried about his liver with all of the abx and supplements as well as ibuprofen...and his gut. He takes Cyflacalm capsules and his LLMD called today and said to try Inflammatone capsules and also UltraInflamEX which is a powder. I have to look into those next...but the list of things he takes is long and exhausting and enough is enough. He takes a handful of supplements and abx in the morning, then a few more after school, then more abx at dinner, then a few more supps and probiotics before bed...it's a never ending process for the poor kid.

Hi jan251! Thank you for the tips. I was up late researching all of them. My son was on Doxy for a time and did really well on it until he got a severe sunburn in July. At that point we changed him to Cedax...which never brought the same level of 'good.' I guess that class of abx (Doxy and Mino) really do help with inflammation. I have an appt with our LLMD at the end of this month and will ask him if we need to move back to Doxy or Mino now that winter is approaching and less of a problem with sun). Thanks also for the great tips on herbals...do any of these Resveratrol, pycnoginol, etc. produce a herx? Just wondering...

Hi everyone, For anyone that is new, or relatively new, to this forum like myself - let me just tell you...it is no joke to have your dog checked for strep. I have read it on this forum and I kept shaking my head saying there's no way. I even called my vet and asked about it and he said, "Um...strep? I've never heard of that." So, I hung up the phone and moved on. Several weeks later my younger DS came up with strep again for the 5th time in 7 months and I took him to his ENT appointment to have his consultation for a tonsillectomy (because he keeps making his PANDAS/PANS brother sick). The ENT looked at me and asked if we have a dog, I sighed and said yes knowing where he was going with this line of questioning...and told him that I asked his vet about strep but he hadn't heard of that. The ENT encouraged me to ask another vet. So, like any of us on this forum would do I started researching and calling vets and found one that said she had heard of this. I took the dog in, had his throat cultured and whadoyaknow - the DOG HAS STREP. I know all of you that have been dealing with this for years are nodding your head and saying, "Duh, of course!" But, it was a shock to me that the dog actually has strep. I honestly believed that he was not going to have strep and it would be one more "idea" that doesn't pan out for us. Well...I'm happy to report my DP (that's Dear Pup) will be starting doggie augmentin tomorrow. Off to bed I go with one more piece of this insane puzzle identified. The moral of the story: Get your dog checked even if you have to call 5 vets before one will test him/her.

Hi everyone, My DS asks for Ibuprofen everyday - I give him 300mg each morning before he goes to school...he says it helps his tic and he feels better. I'm concerned about daily ibuprofen though and what it's doing to his gut. He used to take Curcumin but doesn't respond well to it so we had to discontinue. His LLMD has given him two anti-inflammatories which he takes everyday: InflamAway and Cyflacalm. These two don't seem to be doing the trick for him though, so he's also asking for ibuprofen. His LLMD prescribed Zorvolox last week but the pharmacy said it is not advised for a 12 year old so we had to pass on that option. Does anyone have any advice for inflammation? He is heterozygous for MTHFR and CBS...so not sure if that matters but something to consider when adding stuff to the mix. Thank you!!!

Hi! I just PM'd you...

Hi, My DS12 takes Ibuprofen 300mg everyday to help his tic - he says he feels better when he takes it...it helps his inflammation and his tic is improved. Our LLMD yesterday prescribed Zorvolex as a replacement for ibuprofen since long term ibuprofen is tough on the gut. Anyone else here used Zorvolex? What did you think of it? Any experience to share good or bad? Thanks!

I PM'd you with some info...

I PM'd you with some info...

My sons hover at 1800+, but only tests for moderate ragweed and dust mites. LDA is helping tremendously. Hi Gpookie, I'm pretty new to all of this and trying to get my arms around it with lots of help from the great people on this forum. Can you tell me more about LDA? I'm not familiar with that but it sounds like something I need to get familiar with soon. I will google it too but would love to get more input from you on what it is, how it works, and what it has done for your son. Did he have tics? My son is being treated for Lyme and his primary symptom we'd like to resolve for him is motor tics. Thanks! Kerry

My son's last blood test revealed extremely high IgE results - he was at 1479 and the range for normal is supposed to be less than 480. I can't help but believe this is contributing in some way to his symptoms but I don't know how. Could it be an allergy to mold that we don't know about or food sensitivities or other??? I don't even know what test/s to run to help figure it out...wonder if this allergy therapy would help him?

Hi everyone, My DS12 is being treated for Lyme and Babesia (well, we haven't started the Babesia treatment fully just yet but plan to start this week with A-BAB). Over the last week he has developed a hand tremor in his right hand. I can see it makes his fingers wiggle and then his whole hand starts to shake. He'll then try to shake it out and will rub it and open and close his hand to try to get the sensation out. This typically happens in the late afternoon and evening. What could be causing this? I've read that maybe he has a magnesium deficiency and should supplement. Could this be a herx reaction? Or is it neurological lyme taking hold? He also has tics (sudden onset tics which is how we got to this place) but has never had hand tremors before... If anyone has experience with this can you let me know what this might mean and how it was helped? Will it get better? Thanks!

Hi Rachel - I hadn't thought about his probiotic having any impact on his tics. He takes two different probiotics - ProbioMax DF and Florastor daily. Do you have any suggestions for a different probiotic that helped your sons tics? I'm taking my son in today to have his rectal area checked for perianal strep or yeast. He has a red ring around his anus that looks irritated and itchy...I think he is getting a rapid build up of yeast from all the ABX so that may be causing some issues. But since we have strep rolling through our house right now from his brother I'm also going to have them check that area and his throat for a strep infection that I'm not aware of. Since he's currently taking both Cedax and Biaxin I really didn't think he could get strep ...but maybe so?

Hi everyone, Can my PANDAS/PANS son get elevated antibodies that cause his tics just from being around someone with strep? Or does he have to have an active infection in his body for the problem causing antibodies to develop? My younger son has a chronic strep infection so I'm wondering if his strep is causing my older sons tics to remain constantly even after months of antibiotic treatment for strep and Lyme. I don't understand why his tics aren't relenting even after 6 months of non stop ABX and combo ABX. When I spoke to a nurse at Moleculera Labs after getting his Cunningham panel she said the right ABX at the right time and the right dose will help him -- but it hasn't happened for him yet. Could it be my other son is causing a problem with his chronic strep?

Hi everyone, Can my PANDAS/PANS son get elevated antibodies that cause his tics just from being around someone with strep? Or does he have to have an active infection in his body for the problem causing antibodies to develop? My younger son has a chronic strep infection so I'm wondering if his strep is causing my older sons tics to remain constantly even after months of antibiotic treatment for strep and Lyme. I don't understand why his tics aren't relenting even after 6 months of non stop ABX and combo ABX. When I spoke to a nurse at Moleculera Labs after getting his Cunningham panel she said the right ABX at the right time and the right dose will help him -- but it hasn't happened for him yet. Could it be my other son is causing a problem with his chronic strep?

Check out number 1 on this article ...just saw this tonight... http://www.drwhitaker.com/4-benefits-of-coq10-beyond-heart-health/

I have read in a number of places that low ferritin causes headaches...not sure if its true for your son but it certainly was for my son. We started supplementing iron daily and he hasn't complained of a headache for a while. Just Google low ferritin and headaches and you may see some stuff about low iron being the cause of a few symptoms one of which is headaches. To clarify though he was not getting migraine type headaches that were debilitating...his were more irritating and bothersome. I don't think CoQ10 has anything to do with headaches it was just an interesting observation for us that his CoQ10 was also really low but had been normal about 4 months prior...so we've started supplementing that as well.

Hi eamom - it's been years since you put up this post so you likely will not get this message from me...but can you tell me what ended up happening with your carrier daughter? My son is exactly the same as your DD he shows no symptoms but tests positive and keeps impacting my older DS who is PANS/Lyme positive. Would love to hear how your girls are now 6 or so years later. Thanks!

Thank you!!!! Cleaning cups and replacing toothbrushes immediately!!!! You mentioned your DH had recurring strep infections despite antibiotics...how did you fix it? Tonsillectomy? Other??? PTSD - so true. I see tics and my stomach flops over and I want to barf.

http://www.pediatricweb.com/webpost/iframe/MedicalConditions_465.asp?tArticleId=187 Which antibiotic to eradicate it? Can you get a throat culture next time with drug sensitivity testing? So that you can be sure that the antibiotic is the correct one. Or, here is the advice from pediatricweb, on recurrent strep: Lastly, about tonsillectomy. I'm a fan. It helped my kids' sleep apnea, and was less painful than I expected (especially for the 9yo, vs the 14yo). Here's what pediatricweb.com says: Of course, in your case it's less important how many your younger kid has, but how much of an impact there is on your PANDAS kid. So even if it's 4 within 2 years, you could well decide it's worth it. Not to mention, PANS runs in families, so if it was my kid I'd do it. (speaking not as an MD but purely as a mom of two PANS kids). Hi! Thank you so much for your input - greatly appreciated. I lose sleep thinking that PANDAS/PANS is lurking for my DS9 especially with his strep issues. He seems to worry a little more and loses his appetite when he's got strep which has been another clue for me that he's infected again...so it sounds like he's definitely being impacted by strep but hasn't had full blown PANDAS symptoms yet...but I fear one day it's just going to hit him. I think I will look into a tonsillectomy but I agree that I need to find the source of the infection. In your comments you pasted info on carrier status and it referred to sore throats...that's the interesting thing is he never gets a sore throat either. No symptoms at all. So that seems like he truly is a "carrier" right??? I have not changed his toothbrush or cleaned his cups...I'm frantically sanitizing now today!!! Thank you both for that tip. I also called the vet today to see if he can test the dog for strep - they said, "STREP??" Yes, I said...and they asked the vet and he had never heard of that but was going to look into it. So many days I feel like I'm completely insane. I will DEFINITELY take him in a week after his antibiotic to see if it's gone ...interestingly last time he was treated I did that two weeks later and the throat culture came back negative. 2 months later is was back - what does that mean? Carrier?