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lfran

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Posts posted by lfran

  1. That is wonderful. Congrats!

     

    I wonder what it feels like inside the heads of these children. When my low thyroid is untreated, I feel all foggy brained and can't concentrate at all. Then, with the right dose of meds, everything is easy. I wonder if it is like that?

     

     

    A great way for me to start my day....I asked my son how he was feeling this morning 1 day post IVIG- His response- "Good it's all better now." I said what do you mean- he said "I don't know but it's all better now... it's all gone"( Did I mention the smile?) I don't know what that means for an 8 year old but I will take it.

    Now I know this can be sawtoothed but I will take that for day one post IVIG!!!

    Thanks for all the support and information I would not have been able to get all this accomplished so quickly without you!

     

    Brandy

  2. Also, ask for their best ped. phlebotomist -- call ahead and go there when he/she is there. We did that and travel over 30 minutes to the lab with a phlebotomist that my son likes -- he goes very willingly to her and terribly for others.

     

    Thank you for the suggestions! I'm going to ask their doctor for the EMLA script when I pick up the lab orders and then get the bandage while they fill it. Maybe between that and bribing...the drama will be less; at least I can hope!

     

    You all are the best!

  3. Are you in the LA area? We're in Pasadena.

     

    I had called her, and her nurse questioned her and she said she would treat PANDAS with abx in addition to going the whole natural route.

     

    I used to want the natural route, but now that I think it is PANDAS, I would rather just live a more "normal" life and have abx and other medical treatments. I am looking for a local doctor in this area, too, and am considering her but haven't gone forward with it.

     

    Several people have really liked Dr. Lin in Irvine.

     

     

    I had made an appointment but cancelled because I asked a few questions in later phone call, getting the impression that she is mostly into more of a natural approach, and ivig was not a possibility with her.

     

     

    Help!!! I am looking for someone on this forum who has experiences with Dr. Nancy Mullan. I know she is currently treating 2 Pandas patients. I am trying to find them.

  4. My DS9 has also had PANDAS for many years -- just about 5. He presents mostly with tics. His episodes do not seem to have gotten worse with time but vary in intensity.

     

    He just started antibiotics a month or so ago. He is 76 pounds and was put on 500 mg azith per day at first and he just switched to 500 mg augmentin 2x day a few days ago. They have both been helpful. I think the Augmentin may be really working, but it is a bit too soon to tell. He just told me last night about several of his PANDAS related anxieties that seem to have disappeared (his words) and was "reminiscing" about some of his tics as though they were gone for good. He has NEVER done this before, ever. (This conversation started because he *wanted* to watch the tub water go down the drain and he has always leaped out of the tub well ahead of that occurrence so that he could be far away from it). I am very cautiously hopeful that this may be a real turning point for him.

     

    The rest of us (DH, DS6 and myself) are all asymptomatic strep carriers. We are still trying to get someone to help us clear our carrier state. This is also someting to look into for yourself, perhaps, as several other families have posted the same.

     

     

     

    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.

  5. How can I tell if a boy has yeast? Or, I can put him on candida clear or other OTC just in case?

     

     

    He's 76 pounds, and if I did both, he'd be on 1000 Augmentin and 500 mg zith. each day. Is that similar to what you did?

     

    Yes, that's the same doses we gave. My daughter weighed @ 100lbs at the time. Except for the yeast, she did well on it. In fact after we went back to zith and got the yeast under control, she had improved considerably. Its hard to see improvement during yeast.

  6. Thanks.

     

    He's 76 pounds, and if I did both, he'd be on 1000 Augmentin and 500 mg zith. each day. Is that similar to what you did?

     

    And, did you spread them throughout the day?

     

    Also, the tongue tic that's coming through seems to be only when reading, which is when all of his tics break through. However, he is a total bookworm and would read all day long if he could, so it's sometimes hard to judge. But we just spent half an hour playing a game and I saw almost nothing. So, that's good news.

     

     

    We,ve done both. It was after we had success with rifampin/aumentin and we wanted to do it again shortly after, but Allie's pediatrician felt that the rifampin was too hard on the liver to do it too much, so he switched to zith/aumentin for a couple of weeks. Then we just went back to the zith only. Augmentin always gives Allie massive yeast problems (vaginal inferno). Zith helps w/ intracellular organisms and aug. w/ extracellular- so that's why the combo.
  7. Has anyone been told to give both at the same time? I *think* that's what we were told to do, but I can't get confirmation and I am not going to do it until I am sure that's what was prescribed.

     

    I was told to switch him from azith to Augmenting, so DS8 went of azith two days ago and onto Augmentin (500 mg 2x day). I think things are getting worse. I am seeing a tongue-movement tic that is pretty worrisome to me -- he keeps sticking it out, but sort of sideways. He's had a tongue thrust one before, but not like this.

     

    I'm out of azith, so I can't even really switch back at this time.

     

    Any thoughts, anyone, please? He was doing so well.

     

    Thanks.

  8. Looking to hear from anyone whose main PANDAS issue is tics.

     

    My daughter's main issue is tics (although rage, mild OCD and fears are part of her PANDAS package). At her worst she had a tic-cough, throat clear/grunt every few seconds all day long while awake...so upwards of 10000 times per day. It was so easy to track her tics b/c we could hear them. A steroid burst in April brought an end to her 6 months of vocals, and she did great for a few weeks. Then slowly we started to see new tics creep in like eye rolls, and shoulder shrugs. Because these movements affected the way she looked we could still track/count them easily. This past month her tics have morphed again to mostly include hand squeezes and toe scrunches. Between these two tics she is doing one or the other at least once every 15-30 seconds...so A LOT. The tics are hard to notice if you're not looking, and can easily be thought of as normal movement or odd 6 year old behavior. Still, I know they're tics, and I know they're frequent...they just don't seem nearly as bad as when she was having the vocal tics b/c they're so quiet.

     

    My understanding, however, is that a tic, is a tic, is a tic. It's just pure luck that she's dealing with quiet ones right now, which give the overall appearance that she's much better off than 6 months ago. If the tics are caused by an assult on her brain I really need to be concerned with the amout of tics she's having rather than the annoyance factor...right? I think I'm just getting nervous b/c in our recent visit with Dr. B we started to discuss IVIG, which scares the death out of me. I'm terrified of doing something so invasive that may not even work for tics that aren't super noticable. On the other hand, I don't feel right doing nothing as there is no guarantee that the vocals won't come back at any second if the underlying cause is still there.

     

    Am I on the right track or way off base with this?

    My son has had motor and vocal tics for almost 5 years. They switch every few weeks or so to something new; as you say, some are more obvious and/or annoying than others. The worst for us were jaw-dropping (I was afraid he would choke on food or while swimming) and cheek slapping (loud and obvious -- could hear him from rooms away). The "best" were the quiet ones -- abdominal tensing, etc. But I agree that the frequency is probably what is important to track, since our history shows that they morph from one to another to another with no rhyme or reason. (Although I wonder, since almost all kids seem to start off with eye rolling or blinking, maybe these take the least amount of stimulation and can be considered more minor than ones which involve limbs or larger muscle groups? Just a thought).

  9. Our family of 4 is all high, although only DS9 is PANDAS.

     

    We are trying to start abx tx for the rest of us.

    This is something he is just noticing a trend in families. We investigated titers on our own initially and I've been reporting back to him. My husband had some unexplained GI issues as well as prostrate pain. My father-in-law is also a Urologist and we heard too many horror stories about what strep can do to the testicles. Madeleine Cunningham felt my husband had shared the illness with our 3 children, etc. We opted to treat and ASO came down indicative of an active infection. He definitely said to focus on ASO being sub negative.

     

    -Wendy

  10. 95% better! Wow, congratulations!!! For Lyme, most experts seem to suggest the Igenex tests - they are just more complete. They are a little pricey & often not covered by insurance, so if you can maintain gains, you may want to wait. We use azith too - doesn't work for everyone, but pretty awesome when it does! Gotta love that immune modulating element of abx.

    Thanks! Yes, I am excited...and also cautious....hoping hoping hoping it lasts. He is on a 30 day trial of azith....now I need to get a new rx to continue it.

  11. We've bounced between #4, 5, and 6 all day.... less than an hour to go and we're back at #4, shhhh...super job, it's really tight, get some sleep so you have fresh voting fingers tomorrow. gnight.

    Out here in AZ, I start voting at 10:00 PM- the beginning of the voting day!

    This is so awesome!

  12. Per request of Dr. T, my HMO supposedly ordered a Lyme Western Blot for DS9.

    What I got back was a Borrelia Burgdorferi Antibody, EIA test. His blood was non-reactive. This is *not* Western blot, right? Is this ELISA? Is this useful at all?

     

    Also got results for streptococcs pneumoniae IGG (14 serotypes) back. There are no reference ranges, bt most are less than 0.3; others are 1.2, 6, 3.2 and 27.3.

     

    He is old enough that I think he was vaccinated with the 7 serotype strains, not 14 strains. Sooooo...any thoughts on what this means?

     

    I will be sending the results to Dr. T, but wanted your thoughts, too.

     

    Also, DS9 has been on 500 mg azith for about 3 weeks and he is doing so well for the last 5 days or so. 95% better, I'd say. Maybe even higher. I will keep posting as the time goes on.

  13. My son is doing really really well on 15 mg/kg of zithromax. It took about 18 days to kick in.

     

    Keeping my fingers crossed for you! What Zith dose did you start out with? We are about to start zith to treat PANDAS. Dr. prescribed 1-1/4 tsp 100mg 1x/day for 20 days, then weekly dose for 3 months. My son is 7, weighing just under 48 pounds. Anyone have any dosing advice? DS was also constantly on abx from birth through several years for ears and upper respiratory infections - never seemed to clear up well.

     

    My fingers are crossed- I think we are finally seeing some progress since we upped the zith to 500mg last week. 2 or 3 days after we upped the dose he had a MAJOR outburst that in the scheme of things was not that bad but still lasted about 30-45 minutes & wet his bed that night-thinking it was a HERX. He was a little more emotional for a few days and more touchy.

     

    Last night when my son came home from his Dad's- exhausted (he had been swimming all day) that normally is a condition ripe for an outburst or hand rituals etc....he was rather subdued( a word I have NEVER used with my ds- LOL!) did a little bit of I want to be with my Dad after telling his Dad he wanted to be with me- very normal 8 year old boy stuff-but this regularly turns into a cognitive inflexibility exercise :( and when we were eating dinner he did not do ANY rituals with his hands-the dinner table is one of the places I see it he MOST!!! He does a lot of different even and pattern touches- we call it his "touchy" thing..... last night I saw one small one and that is it!!!!!!

    He did a little bit of arguing about going to sleep- but once again I think it was normal 8 year old boy stuff and then he went to sleep.

    This morning- he was nice and did one of the "touchy" things at breakfast but it is not as pervasive as it used to be- once again I saw it ONCE. I am keeping my fingers crossed that we are finally making some progress!!!!

    We have our phone consult with Dr K this week- very excited!!!!

    Brandy

  14. Yes, and for those who don't know, any health professional can sign off on the request for this test, not just an MD. For me, it was easier to get my chiropractor to request the great plains tests that I wanted than to make an MD appointment. It may depend on the state, though. You can call great plains and ask.

     

    Suzan - Yes, I am gluten free but I don't have Celiac's. I'm hoping to see a gastroentonolgist soon. In all honesty my abdominal pain symptoms sound a bit like Chron's but I'm hoping for something less severe.

    & all of those symptoms are really, really widespread. A lot of them apply to me but a lot of them don't at the same time. Is there a test for Candida??

     

    You can get a test here...

     

    http://www.greatplainslaboratory.com/home/eng/yeast_test.asp

     

    This is for the stool test but you can also look at the OAT test that tests for yeast too. Your doctor can do a test for yeast too, I think, but it is not a common practice.

     

    Susan

  15. No mycoplasma, no rages. Just tics.

     

    I am just wondering, I read about a lot of our children having the rages and a lot of times it seems that Mycoplasma is involved.

     

    I wonder if we could sound off here just to get an idea if it is just children with Mycoplasma P that have the rages?

     

    If Mycoplasma P comes up on your blood test is it high Igg or Igm?

     

     

    If Mycoplasma does not show up for you and you have rages could you also respond.

     

     

    I will start. Mycoplasma P High Igg negative Igm Yes rages.

     

    Thanks.

    Kay

  16. This is a little early for me to post, because I have only seen improvements for two days, but...

     

    DS8 is on 3rd week of abx and we were seeing lno improvement -- actually it was getting worse. He was also doing a nose snort tic. We changed probiotics from kefir (included strep probiotics) to a pill that didn't and added xylitol nose spray and xylitol gum (am still searching for toothpaste with a flavor he likes). Saw an immediate and dramatic improvement. These things are easy to try at home. (Thank you to the person who posted last week that xylitol has anti-strep properties!)

     

    Also, I make sure that DS8 also has his own toothpaste, so as not to spread any germs from toothbrushes back and forth.

     

    Thanks Kim and Isabel.

     

    You are right, I should sign myself "impatientmom" It is really hard to wait for things to work or not work!

     

    I am seeing Dr. B, who ordered all my various tests. We got a second blood draw after DS had been on Augmentin for a month and we will get the results today--they will include the Western Blot test (the lab unaccountably didn't run it before) and the C3 complex as well as a rerun of the titers. Mycoplasma was previously negative. Dr. B also thought there might be a sinus infection, but wouldn't 2 months of antibiotics have at least calmed it down? Or do I sound like one of the anti-PANDAs Drs? He is still making a sniffing/snorting noise, which I always thought was a tic. Anyone know a good ENT in NYC?

     

    I really appreciate everyone who posts on this board. You are the only people that I don't have to explain things to!

  17. When you find that out, please let us know. I'm pinning my hopes on antibiotics!

    We live in Texas and after the run around from psychologists, neurologists, psychiatrists, and mentions of hospital settings (we were unable to find any PANDAS doctors here in Texas)...our pediatrician was able to get a phone conference with Dr N in NJ. She was very nice and helped in getting our pediatrician "on board". We were new to all of this and after all of the refusal to acknowledge our desperation and being told over and over "controversial" and "don't believe in this illness"...quite frankly she was the first one that began the turn around on getting help for us. Our pediatrician put out son on Augmentin XR 1000 twice a day and he responded right away. Within a week the “Tourretts like movements and behaviors” and face tics began to fade and are now gone. Each day he improves, however we are planning on contacting Dr. K because we want to run our information by a true PANDAS specialist to see if maybe we are missing something. Dr. K's website says that eventually ALL patients become non responders to antibiotics....would like to know more about what that means and if he is returning to us...do we still go with the IVIG or is that for children that are not responding to antibiotics? Still so much to learn!
  18. No, no eating issues at all (eats everything and always with a good appetite. We joke that he's been eating like a teenager since he's been a toddler. But he's no at all overweight -- just has a high metabolism, like I do.)

     

    No SSRIs, no other meds at all.

     

    A more gradual onset of symptoms -- not classic overnight -- but always a high DNASE. Only one positive culture in 5 years. But whole family just showed high ASO and DNASE levels and we all had negative throat cultures. Go figure.

     

    But, vis a vis serotonin, he has always been a very deep and very heavy sleeper. Even as an infant. Slept way more than the other babies in his daycare. Think there's a connection?)

     

     

    Buster did a compare a while back of results- a very nice, organized chart! One of the things that was noticed (from our small sampling)was that kids on SSRIs seemed to have higher D2, although my daughter was not on an SSRI, she was on Lamictal, which I think does have some effect on serotonin. Its not clear if the meds are responsible for

    elevation of D2 or if kids w/ high D2 are more likely to be prescribed those meds. But, I'm wondering if your child has had eating issues?

    And I didn't think my daughter was in exacerbation at the time of her Cunningham blood draw- but have w/ more aggressive treatment (she was on a pretty wanky prophylactic zith regimen at the time) found that she can be way better than she was at the time-and we had a + strep test not too long after that.

    Okaaay.

     

    And this was from a blood draw when he was at a very low level. Sent it in then because we were drawing for other reasons and I really wanted to see his results. (And we just saw an infectious disease specialist last week who pretty much blew us off vis a vis PANDAS).

     

    He mostly presents with motor and some vocal tics. I wonder if there's a correlation.

     

    Do you guys think Dr. L would be interested in these levels? Or Buster? How do we start gathering and comparing all of our data?

  19. Okaaay.

     

    And this was from a blood draw when he was at a very low level. Sent it in then because we were drawing for other reasons and I really wanted to see his results. (And we just saw an infectious disease specialist last week who pretty much blew us off vis a vis PANDAS).

     

    He mostly presents with motor and some vocal tics. I wonder if there's a correlation.

     

    Do you guys think Dr. L would be interested in these levels? Or Buster? How do we start gathering and comparing all of our data?

     

     

     

     

    Her antiD2 was 16,000- wow never heard of anyone w/ a 32,000!

     

    Would you mind sharing what your "very high D2" levels were?

     

    My DS8 had a D2 level of 32,000, a cam K of 139 and everything else at the top of normal range.

     

    Thanks.

     

     

    Thanks. This was, I think, our last appointment in our six year relationship. I won't go back. I will just have to drive an hour one way (and then 5 hours one way after we move this month!) to see Dr. Lin as our pediatrician from now on? The most amusing part was, after saying this about the CaM test, I mentioned that the other titer tests will come back in a week or so (anti tubulin, lysoganglioside, D1, D2), and he said, "Send them to me. I will want to see those."

     

    When we went to see Dr.L w/ a very high CamK (242), that number intrigued her, but she felt that she couldn't make treatment decisions based on that, however, she felt that the very elevated antiD2 was something that she could "hang her hat on" because it was very clear, study or not, that high antineuronal antibodies just should not be there and, so she could justify treatment based on that finding- so, I kind of see why the doc might be more interested in seeing those- as an indicator of autoimmunity.

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