momcap

My DS7 also has episodes of severe chest pain. They are exertion-induced. He will drop to the floor, clutching his chest and screaming. The screaming makes it hurt more. Then he will clamp his mouth shut and writh in pain. It only lasts 2-5 minutes, but it feels like forever. When it ends, he seems completely fine. He had an echocardiogram, which was normal - of course it was not happening during the test though. The doctor says these are panic attacks, but if he ever saw one I'm sure he would know that they are not. I know panic attacks can cause hyperventilating and chest pain, but DS is happy and playing when they happen (playing soccer with friends, dancing with me, running with grandma, etc.), and he is not anxious before or after. It only happens when he is exerting himself. It just doesn't fit with the anxiety. I don't know how this fits in with PANDAS, and to be honest this is the symptom that made me seriously consider lyme. He does not have a lyme diagnosis, but I test positive for lyme and I'm assuming he has congenital lyme. Who knows?

Yes! My DS7 presented as behavioural/psychological, and was treated as such by doctors all along. I kept insisting something physical was going on because of the severity of his leg pains (docs said growing pains), and a variety of never-ending all-over pain complaints. (Which were also dismissed as psychological.) He would be diagnosed bipolar and drugged right now, if I hadn't started researching for myself. DS's presentation: sensory, anxiety, mood lability, ODD, pain, PANDAS. He also has bouts of severe ADHD. Last spring he started having chest pain attacks, and that is what finally motivated me to figure it out since the doctors couldn't or wouldn't. It was not until a couple of months of rotating antibiotics that he got hit with many more physical symptoms. We do not have a lyme diagnosis yet. We're waiting to see the LLMD. I think it's congenital lyme - I tested positive and figure I've had it since 9th grade.

I've posted about DS7 on here a couple of times, but I mostly post on the PANDAS board. I just wanted to give a little update: We heard about PANDAS in the summer, and confirmed that with high ASOs and CamK 176. I had red flags about lyme, but his WB was negative. The doctor put DS on a month of augmentin and we had a raging monster for a month. Then 1 month of biaxin, during which DS was only slightly less berserk. By the middle of the month on biaxin he had a whole new set of physical symptoms: His arms and legs get a lacy/blotchy rash that comes and goes, especially when he's cold. He NEVER felt the cold before, and wears shorts year round (we live in Canada, it was below zero F last night). The whites of his eyes are now always pink. He has a dry hacking cough, especially when he laughs. Last week his elbow swelled up like a baseball and turned purple. It faded back to normal within 24 hours. His feet sometimes "can't feel the floor". Yesterday his leg hurt so badly he wouldn't walk. This is really scary! His only major physical complaint before this was joint pain. In the middle of all of this I sent my blood to IGeneX. It's positive. He is now on amoxicillin, which has helped in the past, only now it is also making him feel much worse. We've added activated charcoal and upped his probiotics from 15 billion to 50. I'm going to start him on benadryl this week too. There is only one LLMD in my province (that I have heard of). Luckily he is only a few hours from me. But the wait is long, as he takes patients from all provinces, as well as other countries! I'm pretty much on my own for at least another 6-8 weeks until we get our appointment with the LLMD. I only have access to amox and supplements. Is there anything more I should do, or anything I should be doing differently while we wait? I just want him to feel better, or at least know he's getting better despite his suffering. I'm second-guessing everything and wondering if I should stop giving him amoxicillin and just let his body have a break? Thanks for any words of advice.

eljomom - My DS7 was a major germaphobe last year. He wouldn't touch the toilet, could hardly go in the bathroom, wouldn't brush his teeth, wouldn't touch our pets, wouldn't touch his "contaminated" brother, and was constantly talking about germs. Imagine my surprise when his teacher told me how he took off his shoe and started licking the bottom of it to get a reaction from his classmates. ??? S&S - I can totally relate! Despite DS7's high ASOs, CamK 176, anti-dopamine 4000, my blood positive for lyme, DS7 who can no longer attend school and has an alphabet soup of diagnosed psych disorders, and 2 other children who are constantly sick, I still think I must be a crackpot from time to time. That sure would be a simpler answer! Someone told me, "When you hear hoofbeats, look for horses." We've ruled out horses, looked for zebras, and now sometimes it feels like we're searching for unicorns.

Hey PKM, that's great news! I was wondering how you were doing. So glad to hear you finally got approval for your DS to see a knowledgeable doctor! Hi and welcome eplank! I'm in Ontario, and can't find anyone here. We paid out of pocket to consult over the phone with a PANDAS doc in the U.S. Our pediatrician has been supportive. You could try contacting the various pandas websites and asking about a doctor in Canada. I did that in the fall, but did not get any solid leads. Maybe things have changed since then??? Good luck!

My DS7 also flared VERY badly on Augmentin, and also on clarithromycin (Biaxin). We did each for 1 month, and just finished 2 weeks ago. Now he's back to amoxicillin, which helped him in the past, only now he's saying it makes him feel worse too. Since we did augmentin and biaxin, he has had many new physical symptoms - arm & leg rashes, joints swelling and turning purple, his feet "can't feel the floor", etc. I really think this is lyme. I have a positive western blot for lyme, and we are both waiting to see a LLMD, so I can't say for sure yet. I have no idea if you are experiencing a similar thing, I am just sharing our personal experience with Augmentin and Biaxin. You could try taking bentonite clay or activated charcoal. IF you're experiencing a herx, those should help lessen symptoms. I hope you find answers and get feeling better. Best wishes!

Hi, just wondering if you are Canadian too? I am in Ontario and can't find anyone in this country who has even heard of PANDAS!!! My DS7 is being treated for mood disorder and anxiety disorder in one of the leading children's psych programs affiliated with one of the major teaching hospitals here in Ontario. They hadn't even heard of PANDAS. Or at least that's what they told me back in the fall. Now when I mention it and they throw their hands up and have no idea what to say about it. I'm anxious to hear how colostrum goes for your family. We're still trying to figure out what exactly we are dealing with. PANDAS, Lyme, or both. (His labs suggest PANDAS, but he has other symptoms that suggest lyme, and my bloodwork is positive for lyme.) We have not had any lasting success on any antibiotic or supplement so far, despite some dramatic short term improvements.

Thank you for sharing and for encouraging me this morning! He does have a beautiful voice.

That's better than what was coming out of my nose when he said that. I was fuming! It took me until Christmas to find some humour in it. Then I decided I should bake him an apple pie for a Christmas present (i.e. free therapy for me). Now it's our inside family joke - can't afford the consult, bake an apple pie; the car broke down, bake an apple pie, etc. It's amazing how apple pie has solved all our troubles!

Pediatrician #1: "Have you ever heard of a time out?" I had just described my then 3 year old who was biting himself, banging his head against walls, and had tried to stab me. I said I've read many books on parenting and don't you think this goes beyond a parenting issue? His response, "Don't read all those books. You'll just get confused." He then proceeded to give me handouts on basic parenting skills. I went home, cried, and then made an appointment with pedi #2. Pedi #2: "He seems to be at risk for an anxiety disorder and ADHD, but he's only 4. We don't diagnose kids this young because they often grow out of it. We'll keep an eye on things over the next 2 years and see if he outgrows it." 2 years later...my personal favourite: Pedi #3: "You need to bake apple pie and make your home a happier place to be." (We still call him Dr. Apple Pie, and actually still see him. In the end he has helped us through the PANDAS diagnosis and on to lyme. Love him / hate him! Last week: Psychiatrist: Talking about DS7's mood disorder and generalized anxiety disorder in relation to PANDAS: "I'm not a medical doctor. What do you want me to do?"

My DS7 has had many PDD-like symptoms. It was very severe around age 4-5, and I'm sure he could have been diagnosed Aspergers then if we had pursued that diagnosis. Now it's less severe and more intermittent, and there's not enough symptoms there for a diagnosis.

Screaming/shrieking, oh yes! This is the symptom that I have the hardest time with. DS7 shrieks repetitively at the top of his lungs. It rattles my nerves no matter how strong I am with all the other stuff. Sometimes he does it until he loses his voice! The shrieking seems to happen when he is ramping up with increased symptoms (anxiety, ODD, etc) and I can see it coming. Then a trigger will set him to shrieking, usually a simple frustration. He also shrieks exactly the same way if he is in pain, so sometimes it takes a while for me to figure out what is going on. One time it was so bad our neighbour came over to see what on earth was going on in our house (windows closed!!!). I don't have any great solutions. When I can see he is becoming agitated I work extra hard to keep him from getting frustrated. But obviously I can't predict and avoid every single trigger. His shrieking was much much worse on Augmentin, and also worse on Biaxin. We're assuming lyme and herxing - his WB was negative, but mine is positive and he's been like this since birth. We're waiting to see a LLMD.

No experience here, but I've been wondering about it myself. I just finished reading "The Cure Unknown" and she writes about GSE being able to kill Bb cysts in a test tube. I wonder if it could also kill cysts in the body?

We have seen both extremes with fever in my DS. Sometimes when he gets a fever he is the calmest and most "normal" we ever see - the "calm before the storm" effect. But the last time he got a fever he was acting VERY strange. He was rubbing the couch and looked spaced out. He told me all of our stuff was different, but he couldn't explain it. The couch felt different and everything looked different, even though he knew it was really the same. Then he said he didn't feel real, like he was in a movie or dreaming. He kept talking strangely like this, and then he had a major shrieking fit which our neighbour could hear and came running over to see what was wrong. It upset the poor neighbour so badly she started cursing and telling me to rush to the E.R. - where we had just come from. Anyway, long story short - we have seen both extremes with fever. WAY WAY worse, and WAY WAY better.

My DS7 has raged since birth - literally. He was a difficult, angry baby and would scream for hours on end. All of his cries were the same - angry. I didn't realize how different he was until my next child was born. I believe he has had lyme since birth (I just found out I am IGM positive and have had symptoms since my teens). His WB is negative, but he has all the main symptoms: neuropsych, heart pain, joint pain, etc. He's also PANDAS - ASOs in the 500s, CamK 176, etc.

That brings back memories that I didn't even know I had. I had a PANDAS-like syndrome, starting in my early teens. Now that you wrote that, I can remember my Mom's eating sounds driving me absolutely crazy. Not that she did anything abnormal - just the sound of her chewing and swallowing made my skin crawl. Nobody else bothered me. I KNEW this was odd and didn't want to hurt her feelings, so I tried to hide it from her, usually by leaving the room. I'm sure my parents chalked it all up to teenage issues for me too. Weird. I also remember having to walk certain ways on tiles, but I was very conscious of other people and not being obvious. And I remember there was no possible way to make my pattern on the main bathroom floor, so I quit using that bathroom unless it was an emergency, and then I got extremely agitated and tried to jump across the floor and touch it as little as possible. I still have residual OCD stuff, like having to eat coloured candies in order and evening out the numbers. But now it's just annoying little things, and not interfering with my life. In fact, it's entertainment for DH, when he grabs a candy from my hand out of order just so he can watch me freak out. LOL. I also did not know my PANDAS son had OCD until recently. Once on antibiotics and beginning to heal he started sharing a little bit. I still don't know how much OCD he has. Mostly it comes out as defiance and anger when he's unable to do something he feels compelled to do.

Okay, so at least 2 hours between abx, probiotics, or charcoal. Thanks!!!

While waiting to see the LLMD I'm taking the advice of some parents here. I've upped DS7's probiotics to mega doses, and I got some activated charcoal. He's still on biaxin for 3 more days, then going to amoxicillin (because that's all I have left). He has been all over the board this past month while taking biaxin - good, bad, ugly. He's made MAJOR gains, like sleeping in his own room for the first time in 2 years. But he has also raged, which we haven't seen in a while, and has had some pretty brutal days of herxing. The last 3 days he's been HYPER (hypomanic?). I'm wondering how and when do I give the charcoal? The bottle doesn't give much info. Should it be spaced out from antibiotics and given with the probiotics? Or will it absorb the probiotics? Will it interfere with the antibiotics? The bottle says not to take it with ANY medications!!? I asked about bentonite clay, but the lady said it tastes horrible. I can't get DS7 to take anything with a taste. He will swallow horse-pills rather than taste something liquid. Thanks for any advice.

Corn is the worst though! It is in virtually EVERYTHING - diapers, toothpaste, fructose/glucose, they even use corn in the iodization process for table salt!!! I think the only option is to cook everything from scratch. I have the added benefit of living on a hobby farm where we grow our own beef, lamb, meat chickens, eggs, and I keep a VERY large vegetable and berry garden. We have mennonite neighbours who even grind their own flour and whatever I can't grow I buy from them for WAY less than the grocery store. Surely this can't be as hard as I'm fearing... It's time to get serious about our diet again. Oh boy!

I don't have any words of wisdom. I just wanted to tell you that I can relate and offer my support. My DS7 is so much like this. After a rage he is usually so sweet and kind for at least 1 day before he starts building up again. He feels so badly, even though he can't express his regret. And I'm usually too shell-shocked to truly enjoy the nice time after. It's a rollercoaster for sure!!!

I've been considering gluten-free. We had DS7 tested for food sensitivities and he reacted to casein, egg white protein, corn & peanuts. The ND was shocked he didn't react to gluten. I haven't made the leap yet, but I'm sure it would do all of us some good. DH and all 3 boys have IBS and I've always wondered if gluten is the problem. I've been holding back mostly because I don't know how to do school lunches without bread. But I guess I just have to make the leap and do it. Thanks for the encouragement!

Thank you for the great advice! I will add these things this week and see how they help. How do you get such high doses of probiotics? I got some at the naturopath's office and they have 15 bill/capsule. I can hardly get him to swallow 1 a day. Is there another product that is more concentrated, or are you just taking a lot of capsules? I have benadryl, so I will start him on that tonight. I had noticed his eyes are pink and itchy a lot. I'm sure he has some allergies going on. With everything else, I haven't made an appointment to deal with that yet. Sometimes I feel like all I do is make appointments for him. Once we're on track with the LLMD I'm hoping we will be able to drop some of the other doctors (rheumatologist, neurologist, pychiatrist, pediatrician, ENT, etc.) Hopefully I can get some bentonite clay and Bur Bur at the health store. Someone mentioned bentonite or charcoal when DS was herxing so badly on Augmentin last month. I never did get it because the Augmentin was almost done. Now I'm regretting that I never got it, so I will be picking some up first thing in the morning. Thanks again!

Hi Lisa1981, YES, this sounds exactly like PANDAS! Some of the more experienced people will hopefully chime in with some advice. I'm not much more than a newbie myself. But this forum is a great place to learn about PANDAS and find yourself supported by others who are living it too. Check out the first topic that is pinned at the top of the forum. It's full of helpful information. There are some great websites devoted to PANDAS - pandasnetwork.org and pandasresourcenetwork.org, to name 2. It is possible, if it was caught very early, that your daughter could be well again after being treated with amoxicillin. But, it's more likely that the healing process will be just that, a process. And it will probably require stronger antibiotics. Some have had success with Augmentin, Biaxin, Zithromax, among others. If amoxicillin doesn't work (and it sounds like it is already failing) then INSIST on trying something else. The same antibiotic doesn't work for everyone and it could be a trial and error process to find what works for your daughter. A knowledgeable PANDAS doctor is worth his/her weight in gold. If there is any way for you to connect with one of these experts, it may save you a lot of time, and get you to the right treatment for your daughter more quickly. My heart goes out to you and your family!

We have to wait 6-8 weeks to see the LLMD. I am terrible at waiting. Is there anything more I can do for DS while we wait? DS7 has PANDAS (ASO's in 500s, CamK 176, Anti-dopamine 4000). He is currently on biaxin and herxing. This will run out in a week. I have a 4 month supply of amoxicillin, which I'm planning to put him on while we wait for the LLMD appt. He has classic Lyme symptoms - episodes of severe chest pain, constant knee pain, elbow pain, and a whole host of other pains. He has a negative western blot, so I sent in MY blood to Igenex. IFA - IND, IGM - positive, IGG - negative (but 3 positives and 1 IND), and DNA negative. I just started reading Cure Unknown and was shocked to read about the buzzing sensation in limbs. A couple of months ago DS was shrieking at me because his arms were "buzzing" all the time. I wrote it in my journal, but had no idea this was a lyme symptom. I also suspect babesia. 2 summers ago all 3 of my boys spent weeks spiking sky high fevers with hallucinations, and drenching night sweats. I rushed them into the hospital several times at 106 degrees!!! Finally I just quit bringing them in, because at the hospital they gave them both tylenol and motrin, checked for obvious infections (ears, chest, throat) and then sent us home, saying it was something viral. So I just started giving them the tylenol and motrin at home and waiting it out. Is there anything I can do while we wait on the appointment? Any supps, diet changes, or anything else that might be helpful? I HATE waiting! It feels like I'm doing nothing while the infection(s) are doing who-knows-what inside my kids. (Ya, I'm panicking. )

Thanks for the warm welcomes! I'm going to call my doc again today about that referral, and keep bugging him until he gets it done. Susan - I was also wondering if my IgG was pretty close to positive. I'm not sick now, though I have had challenges in the past, both mental and physical. I'll discuss it with the LLMD and then decide what to do. Wow, I'm still stunned, even though I've been convinced it is lyme for a while now. I know there is a lot of controversy between Lyme & PANDAS on the board. I, for one, am thankful that both sides are passionate in sharing their personal experiences. I'm sorry about the bad feelings, but reading through those passionate threads has really helped me to learn about both PANDAS and Lyme.