momcap

I recall having times when I couldn't taste anything, and nothing tasted good. I didn't know I had lyme then, so I don't know if it corresponded to other symptoms or not. I'm better now, and food tastes good - too good... DS7 has times when his tastes change completely - things he loved he no longer likes, and he craves strange things, like eating a dozen pickles swimming in ketchup, or bingeing on other strange things. He will also get stuck on something that he wants to eat for breakfast, lunch, supper and snacks, for days on end. I don't know if that's OCD (PANDAS) or taste. When his tastes change I also notice him putting salt on everything if he can get away with it. His issues with taste come and go, but so do all of his symptoms. We're still waiting on passports to get to an LLMD, so I don't know how treatment will affect this symptom.

Yes! DS7 takes a long pause before answering a question. Add this to the ODD behaviour and it is perceived as defiance when he won't answer a direct question. But I know that he just needs an extra minute to process before he can answer and if he feels pressured or realizes the other person is irritated he goes mute (selective mutism).

Interesting post! I took DS7 to a pediatric rheumatologist today and we discussed this very thing. I showed him pics of DS's knees and elbow, very swollen. He said it looked more like an allergic reaction rather than arthritis. He said it looked like giant hives, although he's never seen hives exactly like that. He wants a full allergy work up. Last December my younger 2 boys had scarlet fever. Then DS woke up with his face severely swollen and we had a trip to the E.R. While waiting in the ER he got the scarlet fever rash over his entire body. I could literally watch it growing. I asked the doc if he could be allergic to strep and she said that it wasn't strep, it was an allergic rash. I insisted it was scarlet fever, just like the other boys, but his swab was negative. He continued to complain of a sore throat for a full month and we somehow survived his worst exacerbation ever before he finally got a fever and swabbed positive for strep. Is it possible to be allergic to strep? According to the doc today, no. But I'm wondering. DS also tested severely sensitive to eggs, but we cut all eggs and egg products for 6 months with no difference at all, so we gave up.

The LLMD who was bullied into following IDSA guidelines is Dr. B in Toronto. The Dr. prescribing psych meds is a psychiatrist, so no surprise there. When DS got wildly aggressive and suicidal I had to do something fast. I didn't have another option. I can't wait to get our passports back and get to a good LLMD as soon as possible! I would have done this months ago, except we were waiting to see Dr. B, who I had heard was a great LLMD, so I didn't think I would need to travel out of country.

The only sport DS7 has been able to stick with is soccer. We tried swimming but he always gets fevers after we go to the pool. We tried skating, but that was a sensory nightmare with the tight skates, helmet, and the music blaring on the arena radio. When he started soccer he was moved up a league and he was very good, even with kids 2-3 years older. Last year he started out strong. He was getting goals every game and was one of the best on his team. Then half way through the season he grew fatigued and could barely even play. We noticed this happened the year before too. One day he actually walked off the field and curled up in a ball on the ground in front of me. It got so bad that I was embarrassed to even go to soccer because he was standing in the field doing nothing. But we stuck it out and the coach tried to help by putting him in goal. He refused to touch the ball (germs?). So we're signed up to play soccer again this year, starting in a few weeks, and I'm wondering (dreading) how that will go. He is not diagnosed with lyme, but we are waiting on passports to see a LLMD in the U.S. after realizing the only LLMD in Canada is not allowed to treat outside of IDSA guidelines. He has PANDAS and I am positive for lyme.

I did contact one from the ILADS list - Dr. M in Plattsburg, NY. I haven't heard back from her office yet. I also had a recommendation from another lyme forum for a Dr. R in Ohio. She's an MD/ND and uses an integrative approach. Please PM me with any comments on these docs, or any other suggestions, so long as it's close enough for me to drive there from South Western Ontario. Thanks everyone for your kind comments to keep me going. I have regained my resolve, and I know we are going to get to the bottom of this. Today DS7 has a fever, but I think that must be a good thing. Doesn't that mean his immune system is fighting back?

I was reading another thread about Bartonella, and it fits. He has 3/4s of the symptoms, at least. I still haven't heard back from the LLMD in the U.S., so I will call again today. We started the seroquel last night and it knocked him out cold even at the tiny little starting dose of 12.5 mg. I sent him up to bed and found him minutes later curled up in fetal position, passed out cold and still in his clothes. Then this morning he said he couldn't get up or go to school because the new medicine is making him so tired. I think sensitivity to medicines is on the symptom list too. I can't wait to see the new LLMD!!!!

Okay, this is mostly a therapy session for me, so feel free to skip this post. We took DS7 (PANDAS) off abx last Tuesday. We only had enough to get to the LLMD appointment, but found out later that the LLMD had recently been under medical review and was no longer able to diagnose and treat lyme outside of IDSA guidelines. Crap. That was a waste of time. So with no drugs left, and having run out of doctors to beg for abx, we had no choice but to discontinue. YIKES!!! Within 24 hours DS completely fell apart. Day 1 - teacher calls to say he is extremely agitated (he only goes to school for 2.5 hours/day). At home he is agitated and aggressive. Day 2 - teacher says again how agitated he is. Day 3 - He says he is sick and feels really bad, keeps asking me to check him for a fever. Now here we are 9 days out. This morning he attacked me and one of his brothers, and threatened to kill himself repeatedly. The principal calls to say he is obviously on the verge of completely losing it, and she's very concerned about his behaviour since last Wednesday (which was the day after discontinuing abx). He was extremely defiant all day long, making demands and threats, and kept telling me he feels really sick. This evening he threw chairs, broke toys, tried to break the glass in the door (unsuccessfully this time), went outside and shrieked at the top of his lungs repeatedly for almost 5 minutes, came back in and attacked me, and then tried to attack his brothers. After that he said he would jump out the upstairs window so he could die, since that's the only way he would feel better, and he actually tried to open the window. I had to attempt to restrain him since hubby was still at work, hoping he wouldn't fight too hard, since he's 54" and almost 70 pounds of pure muscle. By some miracle he just let me hold him and quit fighting. And suddenly we're back to the point where I don't think we can all live safely together anymore, for the first time since starting abx months ago. I didn't realize how much the abx were helping until we pulled the rug out from under him. Now EVERYTHING is back with a vengence. I contacted an LLMD in the U.S., and we're putting together our passport applications this weekend. In the meantime the doctor has prescribed seroquel, and would like to add an SSRI after 3 weeks. He says it doesn't make any sense biologically that DS would react so strongly and quickly to the antibiotics ending, even if he has lyme disease, so it's just a coincidence. I just don't understand why abx are not considered safe, but we should load up our 7 year old child with psych drugs. That makes no sense to me. How can that be safer? But I have no choice at the moment, as we desperately need an emergency stop-gap. So, I'm waiting to hear back from the LLMD in the States, and trying to keep a positive attitude. This WILL get better. Someday. Somehow. Right?

Amy, We also started with PANDAS. I'm in a similar situation, wondering about congenital lyme. I also had terrible joint pains and depression around age 12. My parents took me to every kind of doctor they could find, but nothing was obviously wrong. We didn't know anything about lyme back then, except that you got a bullseye rash from a tick bite. I can't recall a bite, or a rash. But thinking back I realize I had many symptoms of lyme, and they were all dismissed as medical annoyances, but certainly nothing treatable. Visual disturbances were dismissed as migraines without pain (???), numb fingers and toes were called Raynaud's syndrome, sore knees were Osgood Schlatters, after breaking my foot I got RSD - my immune system basically attacked the broken foot, swelling for months on end, turning purple, red, rashes, etc. It took me over 6 months to heal from a simple break. After years of doctors appointments we just quit trying to figure it out. My Mom assumed I had fibro and eventually I got better (after a year of tetracycline for acne). I've had bouts with "it" since, but nothing that lasts. So now I have DS7 with PANDAS. After treating aggressively with antibiotics for PANDAS for 2 months he ended up with so many more physical symptoms of lyme. My 5 year old (non-PANDAS strep carrier), has chronic headaches and sore feet every morning. My 4 year old catches every bug that goes around. He's constantly on abx for one infection or another (ears, eyes, throat, pneumonia). He has the creepy dilated pupils (cat eyes) like PANDAS DS, and the OCD is starting. I recently had myself tested for lyme at IGeneX and it came back positive. So I'm thinking all 3 of my kids have it. I'm assuming I passed it on to them. I don't have any advice. I'm just starting down this lyme-trail myself, and have come up against some pretty discouraging road blocks. I just wanted you to know that you're not the only one, and our stories are quite similar. We have family history of strep too (scarlet fever). Whatever it is, we're all in it together, and the lyme people on here have been tremendously supportive with ideas, information and encouragement! Best of luck,

I have hit rock bottom. We only had enough abx to get us to the LLMD appointment on Tuesday. LLMD said to take him off abx, they were unnecessary, etc. I've run out of doctors to beg abx from, and I was starting to think maybe they are unnecessary and I'm being crazy. Wednesday (24 hours off abx) DS was VERY agitated at school - he only started going back for 2.5 hours a day recently. He threatened another child. Yesterday, he was agitated again, and so aggressive. Today he is sobbing, he's in pain, he feels sick. He can't explain it, but he feels really bad. He can't tell me what exactly hurts, he just keeps asking me to check him for a fever because he says he's really sick. No fever. He's threatening to kill our cat. He won't eat. I called Stonybrook as per the LLMD's recommendation, but they told me that only a doctor can request a kit. They told me that they recently sent 10 kits to this doctor, so they don't know why he would tell me to contact them myself. It doesn't make sense. I think he was just trying to get rid of us. I am emotionally and physically exhausted, and so tired of fighting. I don't know how to pick myself back up and keep going again and again. I wish I knew 100% this was lyme - nothing would stop me then. But not knowing for sure is driving me crazy. What if I'm throwing all of my energy into this and it's wrong?!?!! Sorry, just had to let it all out. Thanks for listening. Kmom and Mama2alex - thank you for your encouragment!

Yes, I was able to watch it, but I'm not in the U.S. Sorry, I didn't know it didn't work there. At least it was worth a try.

I was planning to purchase "Under Our Skin", but here it is online for free: http://www.knowledge.ca/program/under-our-skin

I don't know about ILADS since we're not in the U.S., but he was recommended by a lyme group. I've also talked with one of his patients who is being treated aggressively for lyme disease. It all sounded good before I went. I don't want to push lyme if it's not lyme, but what else could it be? I looked at the requisition for bloodwork and I recognized some of the tests - bartonella, erlichiosis, so he is testing for co-infections. He said if the WB from Stonybrook is positive we would do 3 weeks of I.V. antibiotics if DS can tolerate it. Are I.V. antibiotics not generally given to a 7 year old? We stopped abx because we only had enough to get us to this appointment anyhow. DS got strep while on amoxicillin anyway, so I'm just not sure what to do next. I guess we wait on the bloodwork and pray hard for positive results if this really is lyme disease.

Thanks for your kind words Kara. I heard about PANDAS back in August and asked the doctor for an ASO titer. It came back at 512, so he gave us 10 days of penicillin. On the 4th day DS literally woke up a different person. My miserable, ODD, mood-disorder, OCD child actually woke up singing!!! He had been refusing to go outside for weeks. That day he woke up singing he went right outside, found a toad in the garden and played with it. He couldn't even touch our pet dog the day before. The toad peed on him and he just washed his hands, changed his shirt, and went back outside - no meltdown, no rage, no hysterics. Previous to that day his germaphobia prevented him from even going in our bathroom. The improvement was dramatic to say the least. He started sleeping through the night, had no pain complaints, etc. After the 10 days ended he went immediately back to knee pains, chest pains, nightmares, up half the night, and miserable behaviour. So we did another 10 days and the same thing happened. After that I contacted a PANDAS doc who put DS on 1 month of high-dose Augmentin. Within 24 hours he turned into a raging monster. He was literally growling at us. He became violent. We had to pull him from school after he attacked another child, trashed his classroom, threatened his teacher and ran away. After an unbearable month on Augmentin we tried 1 month of Biaxin. It was only slightly better. He was still raging, and put holes in our walls, only it would come and go with the biaxin instead of constant like the augmentin. Also while on biaxin he complained of vision problems, numb feet, his elbow turned purple and swelled up, his knee swelled several times, twice he spiked a fever that month, he had several rashes, his arms were "stinging and shocking him". I could go on. I was so convinced this HAD to be lyme. Is this not a typical presentation? What about this would point to a metabolic disorder??!! I'm baffled. I convinced our pedi to keep him on amoxicillin until we saw the LLMD, which was about 2 months, during which time the physical stuff continues: his joints continue to swell, he's had 2 more fevers, rashes, a day where his short term memory just turned-off (scary day!), etc. I was so convinced that we would leave this appointment with a diagnosis and finally know what's wrong. Not that I want it to be lyme, but I would really just like to know WHAT it is!!! Ya, I thought all that was herxing. What else could it be? Am I way off-base? It just feels like I'm back to square one after I thought I was going to finally arrive somewhere.

DS7 finally had his first LLMD appointment yesterday. I'm really disappointed, as the Dr says he can not rule lyme in or out based on clinical presentation. He said if it is lyme this is not a typical presentation. He ordered a bunch of bloodwork, and asked me to contact Stony Brook and send blood there for a WB. Has anyone else used Stony Brook? I haven't heard it discussed here at all. Just wondering. Dr. quit using IGeneX about a year ago because of their indeterminate results. He says a maybe is not useful. I had to bite my tongue pretty hard since that's exactly what he gave us - a useless maybe. He is not willing to treat without positive labs, and told me to stop giving DS (PANDAS) antibiotics. He said if the labs come back positive we will move to I.V. antibiotics, but in the meantime to stop oral abx. He was unconcerned about my positive IGeneX result, saying if I'm not sick now then my immune system obviously handled it already. He was impressed by our Cunningham results, especially the anti-neuronals and told me that the results confirm an autoimmune process. So, overall I'm feeling at a loss. If it's PANDAS then why did DS get 100x worse on high dose abx? Why during the 2 months on high dose abx did he get swollen joints, rashes, fevers? I didn't think this could be anything else but lyme. If it's not lyme what next? Dr. says to look at genetic metabolic disorders. I feel like I'm back to square one. I guess I built this appointment up too much in my mind, so of course I'm disappointed. Hopefully the bloodwork comes back showing something. Discouraged

I think all you can do is wait and see. I doubt a placebo effect would last very long. And having a possible reason for feeling so out-of-control must be a huge relief to her. Let us know how the rest of the med trial goes. Thinking of you!

We suspect DS7 has congenital lyme - first LLMD appointment tomorrow. He was born with a patch of skin on his knee that looks like goosebumps. He never feels the cold, but I suspect that if he ever got real goosebumps the patch would blend right in and be unnoticeable. It is EXACTLY like goosebumps. It was not discoloured in any way until recently. After a month each on augmentin and then biaxin it turned a tiny bit darker. Has anyone heard of anything like this? I never thought about it being lyme-related until the change in colour. Now I'm wondering.

Oops, forgot to add that DS also had an amazing and dramatic positive response to pencillin - everything went away completely after 4 days on it. When the 10 day script ended he went immediately back to being miserable. So we tried again and same thing, amazing dramatic turn-around. After that we got aggressive with abx and things went bad. Also, his CamK was 176 with anti-dopamine 1 at 4x above the mean. So I'm certain his "bipolar" is infection-triggered. I hope your DD's symptoms are infection triggered too, because there are more options and more hope for healing, rather than a lifetime of psych meds.

My DS7 is diagnosed with mood disorder-NOS, Generalized Anxiety Disorder and Sensory Processing Disorder. He goes to a mood disorder clinic for children with bipolar disorder. When I read your description I could have wrote it about my DS: difficult child, colicy baby, major separation anxiety @ 2, temper flares, sleep disturbance, night terrors, OCD, germaphobia, mania, depression, etc. Their histories are remarkably similar, except that DS does not have any motor tics, only verbal tics. When we first tested him for strep it was completely negative - throat culture negative and ASO 27 (negative), and our doctor dismissed PANDAS without even mentioning it to me. Meanwhile DS was in the worst exacerbation he's ever had, and we almost had to hospitilize him. A week later both of his brothers had scarlet fever. An unbelievably brutal month later and he had strep throat. Fast forward 6 months to another bad exacerbation. This time I knew about PANDAS and I asked to repeat the blood work - this time ASO in the 500s, and 3 months later it was even higher (he was not ill during these months). Last month he had "scarletina" rashes coming and going in different places on his body a week before both brothers got strep throat again. So we have major strep issues in our house, despite those initial tests being negative. One negative strep test doesn't necessarily mean anything. Based on your DDs response to abx I think it is reasonable to say something infectious is going on. The best 2 pieces of advice I got on this forum were to find a PANDAS doctor and to rule out other infections - especially myco p. & lyme. The PANDAS doc knew what bloodwork to order and prescribed more aggressive treatment than our pedi was willing to try. After a month each on high dose augmentin and then biaxin my poor DS had so many more physical symptoms - rashes, pains, swollen joints, rages, numb feet, feeling like he was dreaming, etc. His blood work came back negative for lyme, but with these additional symptoms and the fact that he was difficult and colicy from birth, I was told to test my blood. Sure enough my blood is positive for lyme, which I may have passed to him in utero. So we're seeing a lyme specialist this week. I'm not saying your DD has lyme...many different "bugs" can cause neuropsych symptoms (PITAND). I learned the hard way that ASOs can be negative even with a strep infection (maybe it was done too soon, or maybe ASO just didn't rise), and lyme tests are terrible for false negatives and can also give false positives. These tests can be good tools for diagnosing, but they are not infallible. That's why so many of these illnesses (like PANDAS and lyme) remain a clinical diagnosis. Which is another good reason to find a PANDAS doctor and get an expert opinion. BTW- I'm pretty sure my DS only goes manic when he's exposed to strep. I started journalling and charting and was amazed at the "coincidences". I was also diagnosed bipolar after sudden onset of symptoms around age 14. But by my early twenties it just went away. I've never heard of bipolar disorder just going away. But I have heard of many children who outgrow PANDAS. Good luck and keep us posted!

Don't despair!! You've had 14 years of wellness and you WILL be well again. You have been so brave and worked so hard! We are so grateful to have you on the forum. You are inspiring all of us! I am praying for you. Please let us know what happens on Tuesday. (((((((((((((((((((((hugs))))))))))))))))))))

Sarah Jane, We can't get myco p labs in Canada. But he has elevated ASOs. My DS7 did the major plucking at night too. I saw him pulling a couple of strands on the couch a few weeks ago, and again the day after the big bald spot. But the big bald spot happened at night when he couldn't sleep. He refused to get up in the morning saying he was sick, and at the last second ran outside to the bus. Now I realize he was just making sure I didn't see his head. I sent him to school the next day but he was so upset about his bald spot that he convinced the principal to drive him right back home. Never mind that he's already missed over 2 months of school this year, and is now only going for 1.5 hours a day. Grrr. He's also been stuck in the house for weeks at a time - the black widow and brown recluse spiders might get him if he goes outside! Then he was convinced the spiders were in the bathroom and he couldn't go in there. That was not fun. We're in an area that is too cold for these spiders. We still have snow on the ground! But I couldn't convince him. The really strange thing is that he's not scared of spiders when he's not in exacerbation. He picks up the harmless ones and plays with them. We're in a marginally better place right now, although he's backsliding pretty fast. Just wanted to sympathize. I wish I had answers for us all.

I had this same discussion with my Mom last night. Yes, DS7 can hold it together for a while, but it takes every bit of effort he can possibly muster. And the explosion of symptoms afterwards makes it hardly worth the while. When he was 4-5, he did well in school for an entire year, but he would start screaming at the top of his lungs after the bus dropped him off, while still walking up the driveway! The rest of each day was nightmare. He would always save his worst for me, and only had serious rages when DH was at work. I started to seriously wonder if I was the problem! But DS couldn't hold it together forever and when he was 6 he could no longer cope at school, and he raged in front of DH, and now he doesn't function well anywhere except at my parents' house. I had to video some rage episodes before my parents really understood what we were dealing with, and how I was attempting to handle it. He's had several rages at school now too, and all of a sudden the psychiatrist and therapist started taking it seriously. I wanted to scream - this is what I have been dealing with all along and I've been asking for help for years!! But I was just thankful to finally get some help and to have DH finally on board. I'm taking DS7 to see an LLMD in Toronto, recommended by the Canadian Lyme Society. I know that IF he has lyme there is no magic fix and treatment is long and there will be herxing. And I don't know how much of the psych stuff is caused by lyme and if it will be reversible and how much damage is done by patterns learned, etc. He's been this way since birth, so I don't even know what lies underneath the illness. But we've seen glimpses of a happy, delightful boy when we first tried antibiotics. It was amazing and gives me hope. I'm feeling more hopeful than I have in a very long time. I will post an update after we see the LLMD on Tuesday. And I agree wholeheartedly with your comment about saving positive energy for your child. We're going to need it!

Thanks Melanie. I will definitely google NAC and see if it can help!

That's very interesting about allergies. He could hardly get out of bed this morning; said he was sick and was very congested. I thought, here we go with another virus. He went to school for an hour and a half. When he came home he was no longer congested. Could this be an allergy to something in his room? Dust mites? IDK...I've never pursued the allergies, but I know he has them (itchy red eyes from time to time, esp in the fall). With all of his other issues demanding immediate attention, allergies got pushed to the back-burner. He always has a really bad time in the spring and fall. I thought that was more connected to the mood disorder. I don't know anything about allergies since I've never had any. Spring allergy season / fall allergy season: I guess I have something new to start researching. <Sigh> We are also pursuing lyme.

DS7 now has trichotillomania. He's plucked a quarter-sized patch of hair off the crown of his head. It is very noticeable. Even his teacher and principal asked me about it today. I was able to bribe him into a very short haircut, which is a miracle since hair-cuts are a world-stopping crisis for him. I'm hoping with his hair so short he won't be able to pluck at it for now. He says he's not leaving our house again until he has his whole head plucked bald, so that it matches. Agh! Then DS5 asked me if he had a bald spot too because his brother was in his room plucking HIS hair last night. So DS7 is plucking his own hair AND his brother's?!?! Is there anything I can do? I don't want to draw any more attention to this than I already have, but it needs to stop! Please help!!