hugs2day

Coromega from Kirkmans tasted like a melted starburst and you can mix in mango sauce or just take by spoon. Theralac powder has no taste and can be mixed in water or apple sauce. Culturelle also used.

Does LYME have symptoms in which, you feel like someone is poking your eyes with a needle from the inside out, it is an intermittent sharp pain that will go away for weeks and then come back. Also, I have my right cheek feels like its gone paralyzed for a few seconds then the feeling goes away. My right eye has been twitching intermittenly for days. When all these weird symptoms started I got a weird bump over my right eye, its under my skin and you can feel it but not see it. Sometimes it hurts a little but not much. Oh also, chronic itching in which the itch seems to move around and can never be found. Its an itch that cannot be scratched basically. Are any of these lyme symptoms?

The urinary frequency and fears your son is experiencing is exactly my son . My son told me if I didn't get him a dog he would die. He thought when I used pledge to dust that it would get into his mouth and poison him. He questions everything that touches him, his food, his fork, etc. He was becoming very ill and that is when I told the Neuro we need to do something different because the Azithro was not doing the job. He switched to Penn VK and went into remission within 3 days. My husband and I were amazed and relieved and my son told me he got his life back. He knew too. Did you get the list of doctors I sent you? I tried to send you a PM but got message you cannot receive any new messages.

Tylenol blocks glutiathione and yes leads to methylation issues. Baby formula and many baby foods now contain prebiotics and probiotics. Manufacturers obviously jumped on the band wagon and finally recognize the gut brain connection. Congratulations on your grand baby! Not to scare you, but I think its important to share. I would echo have your daughter follow up on the infection. My son was born with an infection and given iv abx shortly after birth. the doctor just said sepsis and levels normalized and we left the hospital a few days later. There was no bloodwork follow up until he developed autism at age 3 which I now believe was Panadas. If I had known then what I know now, I would have been repeating the bloodwork and treating aggressively.

Several doctors told me my oldest ds9 had tourettes I knew he didn't then I went to a neurologist that listened and diagnosed PANDAS. I let my son do all the talking and explaining of his symptoms and sudden onset (the date he says he lost his life), etc., and I was horrified because he had been hiding a lot of his OCD from me. Anyway we tried Azithro and it helped but not enough then ds9 finally found relief with Penn VK daily and he is now in full remission (only 3 months) so I am still crossing fingers and praying. Allergies are a trigger as well for both my kids and allegra helps as well as Isocquercitin and daily supplements like: vit c, vit d, multivitamin, b6/magnesium, natural calm every other day, omega 3 (coromega), probiotic. DS9 has not flared at all since being on the Penn VK even with a loose tooth which used to send him into a tailspin. You should definitely get treatment as soon as possible as the symptoms could get much worse the longer your son goes without the antibiotics that will work for him. The longer he is sick the longer the recovery period. Azithro works very well for most kids...and sometimes its the dosage that is not working as well. My younger son also has pandas and he is on a higher than normal dose to keep his symptoms under control. There is a list of Pandas doctors on the Saving Sammy website, your in a good area to find a great doctor. It will be okay its just a tough transition to get through as you find treatment that works. He will be okay, there is help and treatment. P.S. Ibuprofen really does help decrease the symptoms and because PaNDAS hurts joints, headaches overall inflammation therefore, Ibu is a good idea to add. I also have a list of doctors that Yale University provided me, I can email it to you later tonight when I get home. Good luck.

My son did that prior to his first big episode. In hindsight I realize it was extreme anxiety and the days to follow got crazy. I don't mean to scare you, but if you are not already giving your son Ibuprofen that would be beneficial. Also is your son on antibiotics? At the time my son would cry if he heard our own dog bark which never bothered him before. Also if he didn't see me coming around a corner and I called his name, etc. Once treatment started with Azithromycin and Ibuprofen that stopped. Also a long list of supplements were introduced one by one and he has never had that symptom again. Does he have other symptoms? Are his eyes dialated? etc. send me a personal message if you want a list of supplements and what they help.

I am looking for an LLMD without a waiting list that I like in So CA, been searching websites for a few hours and came across several protocols being used to treat LYME at several clinics. Just wanted to hear from those on this journey what you know about hyperbarics treating LYME. Also are IV antibiotics better for some co-infections? Made me wonder about injections too. If you can shed some knowledge on these topics please do. Thank you.

lovemyboyz- your reviving this post is very timely and appreciated. I recently had a consult with LLMD and apparently Azithro alone is not enough and it varies depending on what c0-infection they are treating. I think the abx combo I hear has great success with lyme/Bartonella is Azithro/Bactrim this is what I suspect my son has. I mentioned that to the LLMD and she said Doxy is better but my son is only 7. Also apparently it is a long healing process, it can be years. My son has been sick 4 or 5 years only the last year and half did i know about PANDAS and now its likely LYMe too. The LLMD I spoke with has a 6 month waiting list so I couldn't get treatment for my son but I got a great phone consult and a referral to another and we are waiting test results. Also I read the book Lyme treatments it has about 13 different LLMD synopsis of how they treat lyme that helped me a lot. My DS7 is currently dealing with a flare up I think due to allergies, shiners under eyes, extreme hyperactivity and stuffy nose and he won't sleep and ALSO HAS A HUGE SWOLLEN LYMPH NODE BEHIND RIGHT EAR. I had to give him benadryl to sleep last night in addition to his normal melatonin. He clearly has more going on then just PANDAS. I will be anxious to see what the experienced LYMe/Pandas parents will chime in and help. Thank you and good luck to you also.

What is interesting to me is that your DD got better after vomiting for several days. This happened to my son in November he was in a bad PANDAS flare, OCD, intrusive thoughts, dramatic neck and shoulder shrugs. He got a stomach virus and vomited for 2 days until dry heaving. After the illness all his PANDAS symptoms remitted just like your child. They did come back within 3 days but it made me wonder what bacteria was in his stomach that he hacked out. My assumption is that once the bacteria repopulated the symptoms returned or was it a normal immune response temporarily anyway. I did not stop his abx (azithro daily) and the symptoms as I said came back within a 3 to 5 day period. Two months later he did go into full remission with Penn VK and is currently holding onto remission.

My ds9 went thru something similar all of Oct-Dec 2011. He worried daily he was going to die even from swallowing toothpaste accidentally. He was on azithro at the time for 9 months never could get him in remission just holding stable. In January, the neuro switched him to PennVK he went into remission on day 3 and is still holding strong. He talks openly know about his past fears and pandas. He says he knows that all those thoughts, rituals were his brain playing tricks on him. He still sees a child psychologist and is really back to enjoying his life. I guess my only advice is Pandas needs antibiotics in my opinion and finding the right one is key. I held strong with Azithro as the drug of choice and it never did for my son what PennVK did. So you may want to try another. By the way my son had the same tic throat clearing issue for nearly 15 months.

Yes, he is technically on the spectrum which makes PANDAS all the more complicated when it comes to him vs. his older brother. Personally I think if he didn't get started in life with chronic infections he would not be autistic, because when we started treating for PANDAS he changed dramatically for the better and we had many moments of seeing a typical kid but when PANDAS hits he demonstrates more dramatic autistic behaviors and PANDAS symptoms. Thankfully he is more stable than not these days. He is so complex... it is truly exhausting. BTW he seems happy upside down (he makes sure he is comfortable) it is likely an OCD compulsion or a stim or maybe they are the same thing for him in this case. He even tells me to look at him and brags I am watching tv upside down. Goofy but as long as he is happy its a good day.

Hi, Just doing my research and finished another book on LYME. I read from several doctors that state if Bartonella is suspected and being treated do not use oral magnesium because it feeds the spriochetes. I use lots of magnesium on my kids for tics and constipation, both PANDAS kids with history of chronic strep. Can anyone confirm if your LLMD is saying this as well? Maybe I need to remove the magnesium supplement until all testing is complete. Very concerned, please share what you know about this topic and lyme. thank you.

mY DS7 is also doing this. He likes to watch movies upside down, or watch them in the reflection of the window instead of directly looking at the tv. He likes to study reflections of himself or objects in mirrors, windows, but not computers. He finds computer screens scary and also blue screens. He tells me he does not like the color blue on television when the whole screen is blue like at the start of a movie. The upside down thing started after an excaberation when he got in two permanent teeth which is now over 2 months of upside down. He also likes to watch covering one eye. I think it is an ocd thing, because he had his eyes checked not too long ago and they were fine. It somehow has to do with anxiety or ocd because he runs to get in an upside down position at suspenseful or exciting parts of movies. Also he started chewing his shirt around the same time this behavior started which I know is fidgety anxiety.

I have been exploring lyme for my ds7 whom is antibiotic dependent on azithromycin and recently had some great gains by adding flagyl which was prescribed to treat cdiff. Then the doc wanted to switch him to PennVK because my other son has had great success with pennvk for pandas, (full remission). So, we added the PennvK for two days and he broke out with bumps on his forehead they are small. I took him to pediatrician and he prescribed keflex for staph (that is what he thinks it is). So at this point my son is on Azithro 250 mg daily for pandas, flagyl for cdiff, stopped the effort to switch to PennVK and instead added the Keflex for the staph outbreak. Well within a few hours of administering the first dose of Keflex my son has panic attack and rage attack. Ibuprofen calmed the situation and this morning he seems okay, maybe a little fragile. Was this a herx response? It appears we are treating more than PANdAS. Also his urine is dark and smells again real foul. He had got over the frequent urination for several months now, but I think its coming back and there is some kind of die off. Of what? I don't know. Any thoughts on wether or not I should continue with the abx combo or pull the flagyl he had been on that for 14 days now. Keflex scaring me to administer again. Any advice would be appreciated. Thank you.

My son chewed the front of his shirt constantly and put holes in them or sometimes sucked/licked or chewed his fingers for months. When he went into remission I asked him why he did it and he said he didn't know. I think it was anxiety based. My other son watches tv upside down, we don't know why, I think its less scary for him from what I can tell. He doesn't know why he has to do it.

My son takes Penn VK also, give immediately after food& Water. Also you can give pepcid 30 minutes before dosing to protect stomach.

My older son ds9 primarily a ticcer does have triggers making tics worse like video games for sure, they are banned when in a flare, fantasy tv, yes to chlorine, artificial colors, allergies, stress, etc. But and this is a big but... he is now in remission with PennVK only 7 weeks (very hopeful and excited) and he is playing video games, eating what he wants, staying up late on weekends, etc. and no tics. So although those things are not causing the tics when in excaberation but they contribute to making matters worse.

Both my kids suffer constipation and gerd, worse when in flares. They also have +ANA titers. We have adopted a very good protocol to treat gastro issues since jumping on the PANDAS nightmare rollercoaster. I will share a couple things here and if you want to know more details just PM me. First of all high dose VIT C helps, Probiotics, oxypowder (mag oxide) moves bowels quick and is a better alternative than miralax, aloe vera juice, sacchromydes boulardi, fiber with inulin, enzymes for tummy DIGESTION and pain, pepcid for gerd. Believe it or not there is more. My kids are complicated cases and they have a very long list of daily supplements all of which are helping. I was in a living h**l when this started like all of you, but it does get better, not perfect, but better. The video that EAMom posted in another post touches on the many bacteria that can live in the gut mucosa and get into blood stream. 70% of our immune system is in our gut, so addressing the gut issues aggressively has helped my kids tremendously. I have one son that is typical and another with autism both have the gut issues and PANDAS. Both have suffered chronic infections since very early in life. DAN doctors, our regular ped, regular ped neuro and a gastro doc have all helped us along this journey. The gastro doc did not feel it necessary to do a scope he has been treating on clinical symptoms. We did do stool samples that were normal, but the gastro dr. stated their could still be bacteria overgrowth with normal results, so he treats. Thank goodness.

Lilly, When my son was in crisis and he couldn't sleep we used clonodine, ibuprofen for pain (likely to have headache if your not sleeping) and natural calm timed a few hours before bed. Clonodine is not an antipsychotic and is safe for children when prescribed by your ped or pandas dr. Clonodine sedated my son to give him some rest. We also gave ibuprofen 3 x's daily because clearly he was in pain, I slept with him and still do. we switched to 1 mg of melatonin after he stabilized. Occasionally in the early days of recovery I gave him benadryl and melatonin timed about an hour apart. FYI- I give all meds with food and water to protect stomach. I know you see Dr.J, but maybe the abx combo is too much for your son, just something to consider. My son got better when we switched his abx to Azithromycin from Augmentin. I pray your child finds some relief soon.

2 capsules of Sach B which I believe = 6 billion and then probiotics 200 billion of multi strain of the acidophillus family. My son does not do well on other strains like bifido. MY ds7 weighs 58lbs and seems to be sensitive to supplements. Thats great your daughter is warding off cdiff with that combo. what your doing is working and that is a good thing. Clostridia was a trigger for my son and flagyl warded off a crisis. We use Saccromyces Boulardi preventatively, and my daughter has hung in with mepron, zithromax, and cefdinar, as well as tindamax most recently. How much do you give your daughter? She is taking 5 pills two times a day, and also 280 billion 15-35 probiotic at bedtime. No idea if that is enough, I came up with it on my own.

My son is currently dealing with this and his symptoms improved dramatically with Flagyl and Sacchromydes Boulardi. Flagyl is 10 day abx but dr said we could go longer if need be. Sacch Boulardi is a probiotic that is known to kill Clostridia and crowd out yeast. My son improved within a few days on this regimen. As the clostridia is killed off you will smell it in the urine (ammonia) and also bowel movements noticable as well.

My son has had this a few times and it comes with small bumps on buttocks as well. We use bactrim cream and it clears up within a day or two.

Many of you have been helping me over the past few weeks sort through the decision to pursue LYME or any other co-infections for myself and children. Thank you by the way. I have reached out to several LLMD in CA for appointment, but meanwhile I went ahead and had a consult with another doctor that treats pandas/lyme/autism and he said he is very concerned that my ds6 is dependent on azithromycin. He would assume that by now he would be on a dosage of 2 or 3 times weekly, not a high daily dose. I have never been able to reduce his dosage or put him on prophyaltic dose, its been 15 months. Therefore, he said it could be the azithro is treating something other than strep like LYME. He also felt the dosage for my son was high 200mg/5ml he takes 8mls daily so that is like 325mg daily. That is what we found is required to keep him 90% stable. (he is 6 and does not swallow pills) So many of you have been at this a long time and have access to some great doctors, do you think that is high? Also my son is responding very well right now by adding Flagyl, do you think that is indicative that LYME is being treated not just strep? He said it could be wiping out clostridia as well which he felt my son could likely have since he has been on azithro so long, but I read Flagyl is used in LYME treatment also. I'm guessing yes, but I want to hear your experiences to validate my suspicions. Thank you.

I have been posting the past week about how symptoms were creeping in daily on my DS6 and I was confused why things had turned on him. Anyway, after stopping steroids 3 days in because we were getting close to crisis and no help. The regular ped dr. prescribed Flagyl based on strong gastro symptoms like bloating/constipation and stomach pain. He thought maybe he had cdif due to prolonged use of azithro. Anyway within 24 hours of starting flagyl my son was so happy and not the miserable, cranky, fearful, anxiety ridden child he was on Friday. He couldn't even leave the house on Friday and would not let me go room to room to put away laundry. Yesterday was good, today is great!! I hope this lasts. The Flagyl script is for 10 days. His eyes look good and he has so much energy and laughter. I just had to sing the praises of flagyl and wanted to share incase its ever an option for one of your children. I have yet to research why this is helping, just feeling really grateful right now my son has some peace. Please share if any of you have witnessed relief from this antibiotic. Thank you.

My DS 6 got his tonsils out at 5 because they were so infected with strep they were touching he couldn't eat or breath. Well the ENT didn't send him home with antibiotics and I assumed we were done with the strep. My son suffered so bad from Pandas afterwards (when we discovered Pandas existed) his recovery time was nearly 9 months and he literally had to relearn how to ride his bike. It was awful, in hindsight I would have asked for IV antibiotics during surgery. I talked to docs months later and they said when the anesthiolgist puts the tube down thier throat it can push any bacteria or infection into their stomach and go systemic. The doc told me this later, but he said he saw no risk since my son had just finished a 10 day course of antibiotics prior to surgery. Wrong wrong WRONG... IT WASN'T ENOUGH. His strep did go systemic. Side note: my ds9 has pandas and his tonsils were not touching,I did not do the T&A on him even though it was recommended for chronic strep and his pandas is not as severe as my younger child. This is just my experience.