scoobymummy

I do have two questions about a fibromylagia dx - first, I'm not familiar with it being something that effects kids. Am I mistaken? And also, if you do get dx'd with fibro, what is the course of treatment? My understanding is that it's more about symptom management than cure. Any info you have would be appreciated. I don't have a fibro dx yet, just seems that the list of symptoms is the closest to what both of us are experiencing. Yes, there is pediatric fibro http://www.mamashealth.com/book/kfibro.asp. I don't know much about treatment yet, I've just started researching, but I think you're right that it is mostly about controlling symptoms. Trigger point massage is a big one (fabulous by the way). I'm still at the tip of teh iceberg of info. Once I've read more, gone to my naturo, my ped, I'll have more of a direction for treatment, but for now I'm just trying to gather information and see if there are others out there with similar symptoms.

We've both had most of the blood work over the last couple of years. He has very few food sensitivities. GFCF diet had no result, although he does take enzymes to help digest and that helps a lot. Somehow probiotics slipped by me - that's an obvious one I should have thought of. With a mamma with a foggy brain it's a little like the blind leading the blind sometimes. Thanks for reminding me of that. I have a great DAN ped here and a an excellent naturopath. I know my DAN didn't believe that Lyme can be passed on from mom to baby, but she's willing to test for it if I want (she's very receptive to any new ideas). We just didn't want to interfere with the abx at the time. I'm seeing the naturopath in a few weeks and the ped in June, so between them I'll run the lyme and check out your other suggestions. Just wondering about fibro, though, as those symptoms seem to ring more of a bell to me with our symptoms.....unless Lyme is one of those disorders that has an incredibly long list of symptoms and looks different in everyone(?).

I haven't been on here for awhile. I've been treating my son for PANDAS for the last 6-10 months with prophylactic antibiotics and it's helped a lot with certain symptoms - certainly the ocd behaviours and tantruming have decreased significantly. So that's left the myriad other symptoms on the table. So here we go.... Both my son and I have the strep titre in our bloodstream. After abx treatment, our levels are normal. DS continues on prophylactic abx. We both suffer from the following: - muscle knots throughout the body that are very painful. Respond well to trigger point massage, but never go away. - fatigue and lethargy - brain fog - anxiety -extreme sensitivity to weather - prior to weather change, we get very hyper/anxious, then incredibly tired (I had mono in the past and that's what it feels like), muscles knots start to ache, start to see spots, vision is wierd, eventually get a headache. - extremely sensitive to light and sound We'll have periods, usually when the weather is stable, but it always returns. - I've had migraines since puberty, always low energy, endometriosis, digestive issues - DS was 'colicky', needed to be held constantly, had digestive issues as baby, as toddler had extreme tantrums (like many a day, lasting up to an hour in duration) I've recently been finding many of these symptoms, with the addition of wierd allergy-like symptoms, itchy bumps, in my siblings and found out that my grandmother had many of the symptoms as well. I'm starting to think fibromylgia. I've been looking at Lyme, but a lot of it doesn't seem to fit. On the other hand, I live in Ontario where there is a lot of lyme (born here) and lived in Mexico where there were lots of ticks (I remember finding them on the floor in our house). Just starting to read about congenital lyme..... Does anyone know if fibro can be passed from mother to child? Sorry, that's a ton of info, but I'm slowly trying to figure out the layers of what ails us. Treating the PANDAS has been a huge help, but want to go to the next step.

Just to clarify -- Igenex testing - do they automatically test for coinfections, or do I have to request that specifically?

SF Mom - found your post from my earlier email. Now that i've read a little more, it makes more sense to me (when I first read it, I was a little overwhelmed lol). I'll request the lyme testing, and go from there.

OK - onwards to Lyme disease testing. Argh. Sometimes I feel like a hamster on a wheel. Started with the SPD label, spent a year researching that, got changed to ADHD, spent two years researching that (including gfcf diets, therapies, etc), now PANDAS and , as usual, it's more complicated than it first would seem. I feel like my head is going to pop off. Deep breath. One thing at a time. Can someone direct to an info source that starts at the begining? I need to understand the difference/connection between strep and lyme and what tests I should use as a starting point. Does anyone know a PANDAS doc in Ontario?

He's tested positive twice for strep titers - throat culture negative. 3 out of 4 of us have the strep titers. We haven't done the other two mentioned. The doc we're seeing is a DAN doctor - very well read and open-minded to investigate new ideas. Not sure how much experience she has with PANDAS specifically, but I know she'll be open to doing other tests if I request it. Ds responded beautifully to the azithro the last time we did it. I suspect he's reacting to the dye in the antibiotic (he looks a bit better this morning and that's 3 days away from the meds). We start the three days a week dose today, and I'll still be using the red goop, so we'll see what he's like tomorrow.

bm's and digestion are normal (apart from naseau from the antibiotic - last time that cleared up as he got used to the meds)

Haven't checked for lyme yet - what is herxing? Also, can he have the lyme test while on zithro? I don't want to stop the treatment.

He seemed to get worse. I was expecting the upset stomach, but he's really spacey adn looks awful. The doc will be back from a conference end of next week, so hopefully a switch off the red goopy liquid will help. He doesn't have any of the signs of yeast, so don't it's that.

Do kids using zithro get worse before they get better? Ds took 7 days of zithro, he's been off for two and starts to take it three times a week tomorrow. I thought he was reacting to the red dye, so I'm waiting for the ped to find us an alternative, but he hasn't had the syrup for two days and he looks awful (worse than before he started the antibiotics) - circles under his eyes, pale, anxious.

OK - now I'm really spinning How do the treatments for PANDAS and LYME differ????

Where did you grow up? Where do you live now and what are your symptoms to believe you might have passed along during pregnancy? I moved a lot - lived in Ontario, Grand Rapids Mi and Mexico. My thinking that I may have passed it on inutero is only that he's had issues since birth - he was the baby with 'colic', who grew into the unhappy baby that never slept, who grew into the toddler that had 5-6 extreme (I'm talking anywhere from a half hour to an hour and a half per episode) tantrums a day to the boy who struggled with transitions and noisiness in school to the point where we pulled him out and started homeschooling. Also, I test positive for the strep as well and have had a lot of unexplained health issues over the years (depression, extreme fatigue, lethargy, migraines, anxiety). I'm just wondering because there is no clear starting point to the PANDAS. RE Lyme - those symptoms don't seem to match us - thank god. I don't think I could handle any more.

Thanks all - is it possibly for the strep to be contracted during the pregnancy? I'm just wondering because he has been 'different' right from birth (I could never put him down, which I now understand was the sensory issues - he spent the first three months pretty much lying on me or being rocked by dh).

I'm fairly new to the diagnosis of PANDAS and I'm feeling awash with information. I apoligize in advance if I'm asking questions that have been covered already, but my brain is spinning from all the reading I'm doing. My ds is 9 and has recently had his second 'occurence' of PANDAS. He's had symptoms for years and years - I got the brush off from pediatricians as a 'worried mother'. It was until I moved and found a physician that treats Austistic children with the DAN approach that I was finally taken seriously. She initially diagnosed him with ADHD, but as some of his symptoms reminded her of PANDAS patients, she tested for it. Bingo. So, unlike a lot of you, there was no definitive moment when things started to go 'wrong'. From birth I've known he's different (digestive issues, sensory issues, unbelievable tantrums from toddler into childhood years, noise sensitivity), so his PANDAS symptoms get mixed up in the rest of it. This last recurrence took me awhile to recognize, because it happened gradually. His 'tics' are different, not so much physical....he gets a bit manic, can't stop his brain from working overtime, talks non-stop, can't sleep because he can't stop thinking. So catching it quickly is hard. Initially we just thought he was approaching a growth spurt (often he's anxious and 'busy brained then too), but it got progressively worse. Does this sound familiar to anyone? The last time we treated the PANDAS, he was given Azithromycin (I can't remember the dose) for 9 days and then once a week for a month. This time it's 200 mg for 7 days and then 3 times a week for 3 months. For those of you that do a phrophylactic dose, is it everyday or 3 times a week? How long do you continue? Is there a worry about the strep becoming resistant to the antibiotic? With repeated infection, does it get worse? Do you do prophylactic antibiotic for symptom relief or because it's dangerous to risk repeat infections? What do you do for prevention - do you do any vitamin supplementation or naturopathics to help boost the immune system? Thanks for the help - I'm trying to read through posts and suggested web sites, but some direct answers would help a lot.