momcap

lol - I actually do believe you. I watched a video clip on food and the alkaline diet not long ago. I was surprised to see a lot of acidic foods are actually alkalizing to the body's pH. I wish I could find that video it was really good. So maybe craving lemon has do to with his body pH rather than detox?

Sent you a PM.

My son has the anal itching too. Our LLMD said to treat for pinworms as a rule-out, but she believes it is yeast. You can treat pinworms with over-the-counter meds from your pharmacist, or a prescription. We got the prescription, and it's just 1 little pill. We tried that but the itching has continued. At least we ruled out pinworms. So now he is starting diflucan when the new prescription comes in.

Yes, thank you for posting this! We are 3 months into lyme and bart treatment. It's discouraging some days, but we are seeing big overall improvement. Thanks for the much needed encouragement!

Is lemon water detoxing? My DS craves lemon. He will suck on lemon slices, and even drink lemon juice straight. I worry about the acid and his poor tummy. Is his body trying to tell us something? Well I'm off to google lemon and detox...

Wilma, every time I read your posts I think our kids have much in common. My child was not limp either - super agitated from day one. If anything he was stiff as a board. He resisted cuddling, swaddling, hated clothes, right from DAY ONE! He nursed well, and doesn't fit the congenital lyme profile. He was sitting before 5 months, walking at 8.5 months, and did everything early (with lots of screaming and anger). But something was wrong from day one. My mother kept telling me so, but he was my first child and I had no idea she was right until our second was born and I got to experience "normal". DS has always been angry and frustrated. He was an extremely difficult baby!! Thank goodness I didn't know any better. Our 3rd child is similar and when he was only 2 days old I had a terrible feeling in the pit of my stomach - here we go again. I am CDC positive for lyme, and looking back I'm sure I got it when I was 12. Of course I didn't know it then, but I had a flare up of symptoms when I was pregnant with DS8. So is this congenital lyme? If so, they don't fit Dr. J's profile. We also suspect bartonella, so maybe that's been at the forefront the whole time? What does congenital bart look like?

Wilma, it's certainly worth a try! My DS also raged on bactrim and we had to stop. We tried it at night, but that didn't work for him, although maybe it will for your DD? IDK. Anyway, our doc says he's been sick so long, and we just have to take it more slowly. He's going to take a LONG time to heal. We're restarting the bactrim today. Wish us luck!!! Starting tonight I'm just going to give 1 bactrim every other day and see how he handles that low dose (the dose should be 2x a day). If that's all he can tolerate, then we'll wait it out at that dose for as long as it takes. I'm in such a hurry to make him better, but our LLMD keeps telling me to slow down and listen to his body. She says to work up AS TOLERATED. He can't handle a quick recovery, and we have to listen to his symptoms as we go. I don't know if that helps at all. My other thought is that bactrim isn't the only med out there. If our slow approach to it doesn't work this time I'm going to ask my LLMD what plan B is. Let us know how it goes for your DD. Thinking of you!

Augmentin was a bad one for us. DS raged constantly while on it. It was scary - like exorcist scary - like should have been in a hospital scary. We were treating PANDAS, and didn't know he had lyme. We also didn't know anything about detox yet. I'm still too afraid to try it again. Right now he's taking amoxicillin and azithromycin and really improving!

We are not there yet. But 4 months into treatment my PANDAS DS8 is hardly the same kid. Yesterday we went to his psych appointment at a major teaching hospital. The psychiatrist engaged DS in conversation for 10 mins, then turned to me and said, "He's not the same kid anymore, is he?" No, he's not! We discussed the improvements for 15 mins, and he concluded the appointment by saying DS would be discharged and no longer needed the support of the mood disorders clinic. He really isn't the same kid. He could barely function last year. He missed 88 days of grade 2 last year, and when he did go it was only for a couple of hours a day. His OCD at times was so bad he couldn't leave the house, change clothes, shower, sit on a toilet, etc. He had severe mood dysregulation. Today he is happily attending grade 3 full time and catching up academically. OCD only flares up on occassion, but most days is gone. So we are nowhere near the level of improvement you are talking about. He's still on combo antibiotics and we are experiencing a saw-toothed recovery. Our LLMD says from her experience he will require a minimum of 12 months on antibiotics, and quite likely longer. But I did want to share what we are seeing so far.

My son was not diagnosed by an ID, but we did see one. Since you were asking about other's experiences I'll share ours. Our pedi was open to the idea of PANDAS, but not comfortable with prescribing long-term antibiotics without a diagnosis from a specialist. So we found an ID with a reputation of having an open mind. We had to wait a few months for the appointment, and our pedi agreed to prescribe prophylactic amoxicillin until the appointment. When we saw the ID he was fascinated by the idea of PANDAS, but had not made up his mind yet. He got downright excited to see the anti-neuronals from Dr. Cunningham and told me this is proof that there is an autoimmune condition affecting DS's brain. While we were there DS growled and banged his head repeatedly against the wall. He's always perfectly normal at appointments, so I thought "great, we will finally get somewhere". Wrong. ID doc had recently been investigated by the college of physicians for prescribing long-term abx for lyme disease. So he was interested in PANDAS, but afraid to do anything about it, without clear-cut guidelines to fall back on. He told us to stop giving DS antibiotics and basically to have a nice life. Unfortunately it was a waste of time! Even worse, we had no antibiotics left. So 24 hours after stopping the antibiotics DS was in full-blown exacerbation. His principal wrote me a letter that basically stated my son was not even the same child she saw at school 2 days earlier. No kidding. It took months to get him back to the level of improvement he had been at. I'm sure ID docs come in all shapes and sizes, and with all manners of opinions. Perhaps yours will be more helpful to you. If PANDAS kids keep showing up in their offices, eventually they are going to have to figure out what to do with us! Edit to add - he was clearly frustrated by his inability to help us. He told me about writing a paper on the discovery of h. pylori while he was in med school and presenting it at an ID conference and basically being laughed off the stage. Now 20 years later the 2 docs who discovered h. pylori have nobel prizes for that discovery. He ranted about the medical establishment being so difficult to change and his hands being tied. I felt badly for the man. He was so frustrated. Sometimes it's not just us parents who are cynical.

My DS8 is currently at 95%ile for both height and weight, but has been anywhere from 95% to off the chart at each check point. DH and I are both big and tall, so no surprises there. He passed all developmental milestones very early. He had what I assume to be a normal amount of illnesses until the PANDAS started. He had his initial PANDAS onset at age 3. There were problems before that, but probably related to lyme. About a year after PANDAS onset he was constantly sick, as were all 3 of our boys. My youngest DS just turned 5. He currently has ASOs in the 700s that won't go away, and non-interfering OCD. He's happy and bright. Not PANDAS, but...? He got sick about 1 month after I weaned him, and from that moment on our entire family was always sick. He had asthma and chronic ear infections and was never ever well. He's finally well now since starting lyme treatment. He's almost 1.5 inches shorter than his brothers were at their 5 year birthdays. He's still at the 80%ile, but considering our other children's height I wonder if all the illness could have affected his growth. IDK.

We did casein-free for over a year in 2008-2009. No exceptions at all. I carried a long list of every ingredient that could possibly have casein in it, and checked every label. Eventually shopping just got too time consuming, so I started cooking everything from scratch, using only basic ingredients so I wouldn't have very many labels to check. The whole family went on this diet (because I wouldn't cook 2 meals at a time), but it was for our youngest DS who had asthma and chronic ear infections. On day 3 of the new diet his "asthma" went away and never came back. I never would have believed it if I hadn't seen it with my own eyes. And it was serious asthma too - overnights in the hospital, puffers, etc. He never had another ear infection after that either. Coincidentally, our oldest DS who has PANDAS did much better that year. He had very few colds that winter and had a good school year. He was not completely symptom-free, but much better than the years before or after. The year before that he had selective mutism and wouldn't speak at school. The year after that "the wheels fell off" and he was in one full-blown PANDAS exacerbation after another, until he couldn't attend school at all. It took another 1.5 years before I heard about PANDAS and had a clue what we were dealing with. After more than a year casein-free our doc suggested working it back in slowly to see if our youngest could tolerate it now. We added a little at a time, very gradually over the next year, and now he eats anything without trouble. I have often wondered if we should go casein-free again to see if it helps PANDAS DS again, or if that was just a coincidence. We also started taking probiotics that year, among other things, so I'm not 100% sure.

My DS8 had selective mutism near the beginning of our PANDAS journey, at the ages of 3-4. He refused to speak at all outside of our home. His kindergarden teacher had to do his mid-year assessment by charades and pointing to multiple choice written answers because she had never heard him speak. The SM improved significantly after 1 year, but still came up from time to time. Now at age 8 he will only occassionally refuse to talk to someone new, or to someone familiar if the conversation is uncomfortable (like at therapy sessions). He knows a response is required, so he grunts or hums instead of answering, which I suppose is better than mutism (???). I believe for DS the mutism was anxiety-based rather than OCD, although he has both. Your description of your DD's mutism sounds more like an OCD issue to me, but that's just my opinion. DS8 has PANDAS (chronically elevated ASO titres, CamK 176, anti-dopamine 1 four times higher than normal and obvious severe exacerbations with strep infections), and Lyme (IgM and IgG positive), and possibly bartonella (just based on clinical symptoms).

That's fantastic news! Yay! I am really happy that mold will not be an ongoing issue for you at home!

Any thoughts on difficulty regulating histamine? Is it possible to be too high sometimes and too low other times?

This thread is so far off topic. Sorry danddd! But let's face it, there is an ever-growing subgroup of PANDAS kids being diagnosed with lyme. My child has been diagnosed with both. I am certain he has both. His lyme western blot is positive. He has lyme symptoms. He's getting better on lyme treatment. But I am also confident he has PANDAS. His ASOs have been in the 500s for 2 years since having scarlet fever, with a baseline of 27. His CamK was 176, and his anti-dopamine 1 was four times higher than normal. He has obvious and severe exacerbations from strep. Something was always wrong (lyme?), but I can tell you the exact day things went from bad to really really bad (PANDAS?). I am praying that the lyme treatment will be sufficient PANDAS treatment. I've heard of some PANDAS children who have healed on antibiotics alone. So far it is working (no more vocal tics, huge decrease in OCD and germaphobia). But we take everything one day at a time. I don't doubt PANDAS as a stand-alone diagnosis. I haven't read any posts on either forum say it isn't in the many months I've been here. I don't think that issue is being debated at all anymore, unless I'm totally missing something? But I have to ask the question - where am I supposed to post? I benefit from both the lyme and the PANDAS forums. Every once in a while I feel like I have something of value to contribute both here and there. But I feel unwelcome to post anything here because of my child's lyme diagnosis. I often write a post and then delete it because I'm not sure. I think I understand the aversion to the one particular post in this thread that contained third-party information, but there is a much bigger argument going on here and I don't know where that leaves people like me, who really do want to benefit from the information available for both disorders. I HATE this line that is being drawn in the sand between lyme and PANDAS because I'm on both sides. I'm feeling forced to pick one side and keep all information about the 2 separate. But how can I separate the information when the illnesses are working together in DS8? I don't know which symptoms are from lyme, which ones are from PANDAS, and which ones are a combo caused by his particular collection of illnesses. I still think we can all benefit from sharing our experiences.

Ds8 has a very similar list of symptoms - frequent nausea, difficulty swallowing, frequent choking, heart burn. But what sticks out to me is "feels like something is stuck in her throat". Everyone in my family has had this complaint from time to time, myself included. It is a terrible feeling, and just won't go away no matter how often you swallow, or even when you eat or drink. We were tested for h.pylori and strep among other things. All negative. I keep wondering if there is an unidentified bacteria at play here. I don't really have anything to offer in this converstaion, just thinking out loud...

I have these, mostly on the back of my upper arms. I was told it is keratosis pilaris (excretion of keratin through pores). Exfoliating makes it worse. Lotion helps. I never thought about it being from toxins. Maybe I will try epsom salt baths too and see if it is a detox issue for me. My kids have them too. I just thought it was genetic.

Thanks for this great info 911RN! My DS8 also had blood in his urine, negative for UTI and a normal ultrasound. Now if it happens again I know what to ask for. He also has chronically elevated ASO and frequently had asymptomatic strep.

We're not doing KPU, but I when DS8 is not feeling well he also complains that it feels like he has no legs. Weird!!! What does that mean? It scares me.

My DS8 becomes intensely agitated and aggressive within 24 hours of stopping antibiotics. We saw this with penicillin, amoxicillin, zith, biaxin. The only antibiotic that he did better OFF of was augmentin because it made him rage 24/7. I've been told that a quick relapse indicates bartonella infection. He's currently being treated for lyme and bart.

I wonder if this website would have what you are looking for? I found a link to them on the mayo clinic website. Looks like they have a pretty comprehensive database including charts and tables. You can't get info without subscribing. I wonder how expensive it is and if it would be worth it? http://naturalstandard.com/

lol - sorry, had to laugh. DS can pitch a 3 day fit over a sock not feeling right, therefore can't put on a shoe, therefore can't leave the house, and the world stops turning!!! But he doesn't mind going to the office to take his meds either. Let's count our blessings, right?

I hope and pray he doesn't have lyme, but it sounds from your post like you are already considering it. Stomach aches, sore heels, a brother with congenital lyme, and missing answers he knows on tests - sounds like more than enough reason to at least do some testing. My DS8 has PANDAS and lyme. If it wasn't for his extreme struggles I never would have researched lyme and then tested myself. I have minor symptoms that I have always made excuses for (Raynaud's, migraine aura, etc) that I finally realized sounded a lot like lyme. My lyme test came back CDC positive. I always considered my younger 2 children neurotypical. My youngest is a smart, happy overachiever and he is good at everything he does. But I started to see little things - headaches, stomach aches, sore feet, frequent illnesses. When my test came back positive I had a sinking feeling. I just knew they had it too. So we tested them and both came back positive. If it wasn't for PANDAS and the extreme symptoms my oldest child had, none of us would have any idea about lyme. So maybe it's a blessing in disguise. Now we know what we are dealing with, and can make informed choices on what to do next.

Is your school refusing to cooperate, or are you not willing to involve them? My kids take a bunch of supplements/vitamins at first break, and medication at second break. There is no possible way I could schedule everything in without the school's help. The school just asked me to sign some forms and it was no hassle at all. But we are also at a small country school with just over 100 kids, and no school nurse. Everyone knows everyone, and they all know we have lyme, so maybe we're just lucky in our school situation. They have journeyed with us through juvenile bipolar, PANDAS, and now lyme, and have seen the transformation in my son from a child who refused to speak in JK to a boy who missed 88 days last year and could only attend for 2.5 hours at a time, to now attending full-time and thriving. He's hardly the same kid, and they are excited to help in any way. Is it possible your school would help? DS8 had major sleep issues in the past, so I wasn't willing to disturb his sleep pattern, which is finally normal. If the school couldn't help I was prepared to homeschool just so we could stick to the medication and supplement schedule. That's how desperate I was! I hope you can find a way to fit everything in. I don't know of any websites with the info you are looking for. I read all our labels and wrote out all the particulars in a chart, and then pieced them together into a schedule. And then when I was finally done I went back over everything and still found a mistake (had 1 supplement at dinner that needed to be without food). It's a lot to keep straight, but after all that work now all we need to do is stick to the schedule (easier said than done some days!).