LNN
-
Posts
3,384 -
Joined
-
Last visited
-
Days Won
84
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by LNN
-
-
I don't want to appear insensitive to everyone who is really struggling right now. But I was reading Mom MDs post about the eyes and some of the responses and it struck me that my family has much to be thankful for this Thanksgiving -not in spite of PANDAS, but in part because of PANDAS.
"This has forced me to slow down and focus on my family. This has also made me realize each day is a blessing, especially the normal ones that are often forgotten. It has made me more thankful for what I have and protective of it." MomMD
"I am so glad you are getting to just be a normal mom for once". It made me cry. I do find such joy in small things. Maybe having reminders of that time will help me keep that simple joy in our lives.
I wonder what each of us will now contribute to the understanding of this disease, in small and large ways. There is an odd sense of "calling" in the recovery mode, that I hope we can hold onto." Meg's Mom
As we help my son recover and fight tooth and nail to keep him healthy, I can't help but remember last Thanksgiving, which was by far our worst exacerbation ever. My son crawled under the coffee table in a fetal position, crying and screaming that we were going to hurt him. He raged over not being able to script an event that involved making apple pie. His hyperactivity and lack of impulse control meant we couldn't leave our 3 yo daughter alone with him for a second for fear she'd be hurt. We were living a scene from the Exorcist.
But my joy this year isn't only that we're now in remission/recovery. It's that in the past year, my family has been transformed, largely for the better. We are wiser, stronger, and more understanding of mental illness and disabilities. We try to be more patient with each other. We take more time to try to understand each other. We remind ourselves that we're all (usually) trying our best. We take the time to talk to each other. We are more free from the misery of trying to keep up with the neighbors (who also have their own hidden burdens to bear). Most of all, I am constantly reminded to be thankful that PANDAS is treatable. There are so many families struggling to raise children who have permanent physical, emotional and mental disabilities. So many families raising children on the autism spectrum who know they have a bright child trapped inside and have even less answers than we do in trying to free their children from disease.
So I am thankful for the lessons PANDAS has taught me, in spite of the heavy price my son has paid. I am thankful that I have him back again. And I am thankful for the PANDAS community and the special individuals who have helped me get through this.
Laura
-
I can only say we won't be using Tamiflu for my son again. I couldn't tell anyone else what do. On one hand. you could try it and see - or talk to Dr Latimer about it, as she knows your particular situation. On the other hand, I was surprised to learn in the pamphlet that Tamiflu only shortens the flu by a little over a day. I thought it was more effective than that. So you have to personally weigh the risks and benefits. As I said, I don't think our side effects - if they are from Tamiflu - are long lasting. But it's a personal call.
As for the mood improvement - that's a great sign. As I said in another thread, weeks 2-3 were bad for us. But then things got better each week.
-
We were 10 weeks post pex when the family got the flu (not sure which kind). Our pediatrician prescribed tamiflu for my Pandas son. We gave one dose and saw side effects of vertigo and dilerium - both documented side effects in the pamphlet. We also saw leg jerks and rapid eye blinking that are not documented for tamiflu but seemed connected to either the flu or the tamiflu. So we discontinued after one dose.
The symptoms largely subsided within a day. Two weeks later, we still see occasional eye blinking, some vertigo at bedtime. Hard to say what the cause is. Suspect the tamiflu but will never know. He's on prophylactic abx so don't believe it is bacterial. We are riding it out and it seems to be diminishing.
-
Ok, so I hate to be a naggy mom, and this is a reminder to me as much as anything - this child's parents may very well end up on this site in the near future, looking for help. Whatever the level of experience of a parent that is new to this forum, everyone is always very helpful and considerate as they learn more. There are no stupid questions - when we are hit over the head with this, we do the best we can. I'm sure there are moms that would laugh out loud about how long it took us to understand what OCD actually is. I thought spitting was a tic for a month before I understood that it was a compulsion and a habit tangled up together. I actually reprimanded my child for imaginary confessions and spoke to her very sternly about cheating - when actually she had Scrupulosity. We told her a million times to quit baby talking. She ran to her room in tears of frustration. If I could take that back now, I would. So to me, that sneeze is clearly a tic. But I am a different person now, than I was before PANDAS. I can't judge anymore what should be obvious to others that don't live in my house. My eyes widen frequently, and I have to bite my tongue and find careful words when I see clear OCD or tics in other children.
I love the humor on this site, but I just think we should keep that for those of us that can handle it - and leave the newbies out of it until they are past the point of panic. I want her to feel very welcome if she comes here - and that we are grateful for the publicity.
For some this is a mild disease - but for many it is debilitating to the point of severe anorexia and hospitalization - or being pulled out of school. One of our primary roles is to help each other. But just as importantly, this site stands as the portal for most parents to learn about PANDAS. When you google PANDAS, this site comes up the majority of the time.
Well said!!
-
We did PEX in August. Things absolutely got worse for about 3 weeks. Then they got better - much better. The major difference we saw was that pre-pex, PANDAS episodes would be a bell curve. A ramping up, then the "healing in reverse' where symptoms would dminish in the revers order they appeared.
Post-pex, we saw symptoms, but they were more like fireworks - a half day of something here, then quiet, then an hour of something else a few days later. Never the bell curve of multiplying symptoms. By week 6, DS was better than he'd been since he first got sick in Fall '08.
We did have a brief relapse in mid-Oct when a friend got strep. Saw a mild buildup of symptoms. We treated aggressively with a change in antibiotics and within two weeks we were back to baseline.
For some, it absolutely gets worse before it gets better. But when it does get better, it gets much much better. I would do it all again in a heartbeat.
Laura
-
This is the email I sent to the Today Show...
"Dr. Snyderman,
Thank you very much for your story this morning on the possibility of PANDAS being a cause for the young girl's sneezing tics. However, please be aware that while an ASO/Anti-DNase B titer test is an excellent way to detect a recent strep infection, it is not a definitive test. A negative titer test cannot be used to rule out a strep infection. It is only useful to confirm one.
My son had scarlet fever, a positive rapid strep culture and a clinical diagnosis of strep two months in a row. Yet three weeks after his second infection, his titer test came back "negative." It is well documented that many people will not produce positive titers following a confirmed GABHS infection.
Attached is a a study published by Edward Kaplan et al that illustrates this point. (Shet Anita, Kaplan Edward L. et al. Immune Response to Group A Streptococcal C5a Peptidase in Children: Implications for Vaccine Development. JID 2003:188 809-17.) The study itself was not focused on titers. But during the research, Dr. Kaplan documented a high percentage of research participants who failed to have rising titers. I call your attention to the first paragraph of page 812.
By all means, a child without clinical presentation of GABHS should have an ASO/Anti-DNase B titer test as a way to confirm a recent strep infection. My only concern is that a negative titer test may be incorrectly used to rule out PANDAS. This would be a huge disservice to a child who truly has PANDAS. For more information, you may wish to contact Dr. Madeleine Cunningham, an immunologist at the University of Oklahoma who is well versed in streptococcal infections and PANDAS. "
I provided Dr Cunningham's email. It is great that the media, especially the Today Show, is presenting PANDAS without controversy. Now we just have to keep the reporters informed. Perhaps the tide is turning and Kaplan et al will finally find themselves on the wrong side of history. Nothing would make me happier than to have my grandchildren be incredulous that PANDAS was ever controversial.
Laura
-
Here is my plan for protecting my son post-PEX:
-- give him daily Zith, 250 mg, and worry later about explaining how I've gone through a year's worth of prophylactics in 3.5 months.
One question I had about the PEX (and others have wondered too, I know)... if they remove all the antibodies from our kids' blood, aren't they then like newborn babies with no immunity to anything? Strangely, no one at Georgetown could answer that.
I know my post will not be received well by some, but I have to respectfully disagree with your plan to give a dose of antibiotic not prescribed by your doctor. If you have found someone to support you and get you pex and give you a year of prophylactics, then why would you jeopardize your relationship with your doctors by sending a message that you don't respect their medical knowledge? If you feel strongly that 250mg/day is appropriate, then argue your case and provide evidence. But if I was a doctor and my patient decided she knew better than I did, I'd fire that patient. If this happens, you will be doing your child a world of disservice and you will be leaving him vulnerable in the middle of the winter without antibiotics.
I strongly urge you to work with your doctor, not against. We have to partner with the few doctors willing to support us.
As for your question about the antibodies, it was explained to me that while you are throwing out the antibodies circulating in the blood, you still have memory T cells that know how to re-create antibodies to something your child has already been exposed to. Sort of like having a reference library where you body can pull out the recipe for how to fight chicken pox and whip up a new batch faster than it did the first time the body was exposed.
In pex, you are throwing out the body's "standing army" You do need to give the body time to replace its serum. But it's not like it stays that way forever. The body replaces its blood roughly every three months. The reason people who are over the age of 60 may have better resistance to swine flu isn't because they still have antibodies floating around from an exposure they had when they were younger. It's because they have the recipe in the resource library and know how to make a new batch of antibodies faster than the rest of us.
I asked if all of this meant that the next time my son was exposed to strep, would the body whip up a new batch of renegade PANDAS flavored antibodies, since this was what was in the recipe book. No one could give me an answer. But based on the relapses some have seen post pex and the argument in favor of doing prophylactic abx until puberty, I think the answer is that the body will always have the wrong recipe. So our goal becomes finding a way to keep the recipe from ever being needed again by preventing any future infections. Providing your doctor with this sort of explanation (in a far more scientific manner) may well help get you a stronger daily prophylactic. But personally, I would encourage you to not bite the hand that feeds you.
-
Yeah, that's what I found interesting about this article. This site has so many kids failing pneumo titer tests and it makes you wonder - are they immuno-deficient because of some genetic factor or simply because the pediatrician suggested tylenol for comfort...
-
The site administrator for OCDParenting on yahoo groups posted this article about how Tylenol may interfere with the effectiveness of vacinations. I thought some of you might find this interesting...
This study will appear in the medical journal "Lancet" tomorrow.
Prophylactic Acetaminophen Reduces Immunogenicity of Childhood Vaccines
Children given acetaminophen with vaccinations have lower rates of fever in response, but the vaccinations produce a lower immunogenicity, reports a Lancet
study.
Researchers, including some from the sponsoring vaccine manufacturer, followed over 400 infants receiving primary and booster immunizations. Half received
acetaminophen via suppository in three doses over the first 24 hours after vaccination, and half received no prophylaxis.
The percentage of children with a temperature of 38 degrees C or higher was significantly lower in the acetaminophen group by some 40% to 50% both at
primary and booster immunizations. However, vaccine immunogenicity was lower in the acetaminophen group — significantly so for some antigens, e.g., all 10
pneumococcal serotypes after the primary immunization. The authors hypothesize that the effect could result from acetaminophen's preventing inflammation.
Over 95% of all children had seroprotective antibody levels, but researchers argue that antipyretics "should ... no longer be routinely recommended" with
vaccination. Editorialists agree, calling the case "compelling."
Articles
The Lancet, Volume 374, Issue 9698, Pages 1339 - 1350, 17 October 2009 <Previous Article|Next Article>doi:10.1016/S0140-6736(09)61208-3Cite or Link Using
DOIEffect of prophylactic paracetamol administration at time of vaccination on febrile reactions and antibody responses in children: two open-label, randomised
controlled trials
Original Text
Prof Roman Prymula MD a , Prof Claire-Anne Siegrist MD b, Roman Chlibek MD a, Helena Zemlickova MD c, Marie Vackova MD a, Jan Smetana MD a, Patricia Lommel
BScb d, Eva Kaliskova MD e, Dorota Borys MD d, Lode Schuerman MD d
Summary
Background
Although fever is part of the normal inflammatory process after immunisation, prophylactic antipyretic drugs are sometimes recommended to allay concerns of
high fever and febrile convulsion. We assessed the effect of prophylactic administration of paracetamol at vaccination on infant febrile reaction rates and vaccine responses.
Methods
In two consecutive (primary and booster) randomised, controlled, open-label vaccination studies, 459 healthy infants were enrolled from ten centres in the
Czech Republic. Infants were randomly assigned with a computer-generated randomisation list to receive three prophylactic paracetamol doses every 6—8 h
in the first 24 h (n=226) or no prophylactic paracetamol (n=233) after each vaccination with a ten-valent pneumococcal non-typeable Haemophilus influenzae
protein D-conjugate vaccine (PHiD-CV) co-administered with the hexavalent diphtheria-tetanus-3-component acellular pertussis-hepatitis B-inactivated
poliovirus types 1, 2, and 3-H influenzae type b (DTPa-HBV-IPV/Hib) and oral human rotavirus vaccines. The primary objective in both studies was the
reduction in febrile reactions of 38·0°C or greater in the total vaccinated cohort. The second objective was assessment of immunogenicity in the
according-to-protocol cohort. These studies are registered with ClinicalTrials.gov, numbers NCT00370318 and NCT00496015.
Findings
Fever greater than 39·5°C was uncommon in both groups (after primary: one of 226 participants [<1%] in prophylactic paracetamol group vs three of 233 [1%] in
no prophylactic paracetamol group; after booster: three of 178 [2%] vs two of 172 [1%]). The percentage of children with temperature of 38°C or greater after
at least one dose was significantly lower in the prophylactic paracetamol group (94/226 [42%] after primary vaccination and 64/178 [36%] after booster vaccination) than in the no prophylactic paracetamol group (154/233 [66%] after primary vaccination and 100/172 [58%] after booster vaccination). Antibody geometric mean concentrations (GMCs) were significantly lower in the prophylactic paracetamol group than in the no prophylactic paracetamol group after primary vaccination for all ten pneumococcal vaccine serotypes, protein D, antipolyribosyl-ribitol phosphate, antidiphtheria, antitetanus, and antipertactin. After boosting, lower antibody GMCs persisted in the prophylactic paracetamol group for antitetanus, protein D, and all pneumococcal serotypes apart from 19F.
Interpretation
Although febrile reactions significantly decreased, prophylactic administration of antipyretic drugs at the time of vaccination should not be routinely recommended since antibody responses to several vaccine antigens were reduced.
Funding
GlaxoSmithKline Biologicals (Belgium).
-
MomMD-
I'm curious about post-pex immuno testing. If pex removes nearly all antibodies to everything, then how do you know the test results are accurate? I'm not trying to be argumentative- this is a sincere question. I know you retain "memory" cells that will remember how to fight an infection even if you don't have the standing army of antibodies in your blood stream. So you'd still be able to fight chicken pox if you were exposed, even after pex (assuming you had chicken pox or the vaccine prior to pex). Your body would just have to take an extra step of creating new antibodies instead of calling on a standing army.
But let's say you had an immuno workup to test for a proper immunity to chicken pox prior to pex and you passed. Then you had the same test post-pex. Would you still pass or is there a chance that the test would show insufficient immunity because you've removed the pool of antibodies the test is looking for? Even tho the memory cells still retain the knowledge needed to create new antibodies if the need arose, my limited understanding is that a test would be looking for a pool of existing antibodies, not testing the memory system.
We are 8 weeks post-pex and I've been under the assumption that it's too early to do any immuno testing and have any confidence in the results. That the tests might reflect a condition we created by doing pex rather than any underlying deficiency of the body's abilities. Can you help me understand what I'm missing?
Laura
-
Thanks. How old is your child who uses it? Do they have to bend their body to use it? Just since school has begun, I've gotten my boys to do XClear nasal spray - you can hold the bottle upright and it has finger holds - very easy to spray. They love to watch me use a netti pot but would never try it! I think I'll have to try this too.
My son just turned 7. I don't think my 4 1/2 yr old would use it, but more because of a wimp factor than because she's too little. My son and I both bend over the bathtub and squirt away. Then turn on the shower to rinse away the evidence. It works best if he blows his nose first to empty the sinuses as much as possible. Oh- and yes, my son makes sure he gets to watch me go first - a certain misery loves company kind of thing...
-
Just wanted to share a positive experience we're having with Nasaline nasal washing. It's like a Neti Pot, but it's a syringe with a large bulb at the end so you can't put it too far into your nose. And you don't have to worry about getting the right angle like you do with a Neti pot. They have a kid's size and adult size. My son and I have been using it for about 5 months. It hasn't kept us cold-free, but the colds are gone in 2-3 days instead of 5-7. And since lingering colds are great incubators for bacterial infections, it's been a good way to keep those at bay. (you know how fluid build up from a cold can lead to ear infections, bronchitis, sinus infections...) It's also one step we take to ward off H1N1 - maybe make it harder for the virus to attach and incubate.
Anyway, with cold and flu season upon us, I wanted to let people know about it. It seems to help. Here's a link at Amazon for $12. You can also find them at your local health food store.
http://www.amazon.com/gp/product/B000U3OJ0...MJDSTWCFDJ0WZZ1
-
I think you need to read some of the post-pex postings. There are several families - Alex, mine and others I know - who did not see immediate improvements with no setbacks. Even MomMd posted about a saw-tooth recovery pattern. We are 8 weeks post-pex. Week one had only subtle improvement. Weeks 2-3 were way worse than before pex (not as bad as our worst exacerbation, but much worse than the day we went into the hospital). We then saw symptoms we hadn't seen in months. Finally by week 4-5 we saw symptoms greatly diminish and most even go away entirely. But then week 6 we saw a mild regression. Now things are good again. It's been up and down. Each down has been less severe than the one before it. and each up has been higher than the one before it, so it's an upward trend. But hardly without its nail biting moments. Hardly an instant recovery.
I've never really understood what "turning of the pages" means. So I can't speak to that. We've been told to expect 6 months of serious recovery, then another 6 months of more subtle healing. But it's not linear. It's more two steps forward, one step back.
-
We had a neuropsych evaluation scheduled for my son because of his learning struggles. But when we met with Dr Latimer, she told us not to have him tested while he was ill. That the results we got wouldn't necessarily be "true" in the respect that many if not all of his problems could be caused by Pandas and not an underlying "permanent" issue. She had nothing against testing. But felt we'd be steered down the wrong path if he were tested while sick from Pandas. Her advice was to get him better first and then see what, if any, issues remained. Then we'd know whether testing was still needed.
Since the testing was a going to be between $2K-$4k, it seemed like good advice. We are 2 months post-pex and see some problems resolving. We saw a similar response to prednisone. So I strongly believe it's the Pandas and not a second issue. It's just going to take time for all of it to shake out. In the meantime, my son gets reading help at school and his teacher cuts him slack when she can. But we have no plans to do any testing - at least not unless he's still struggling a year from now.
-
.
PEX not only removes antibodies but it also replaces them with donor IgG's-same as IVIG.
Shae's Mom
I need to comment on this - the terms plasma exchange and plasmapheresis are often used interchangeably. I think most on this forum use the abbreviation PEX to stand for either. However, Dr Latimer uses plasmapheresis, not plasma exhange. So those of us who have gone to her for this treatment Did Not get an IVIG infusion as part of the treatment. They took my son's blood out, spun it in a large centrifuge, skimmed off the clear serum with the antibodies, and returned the rest of the blood plus some albumin and protein fluid, back into my son's body. They threw away the antibodies. They did not replace them with donor ones. He will need to build his own over the coming months.
So when I refer to PEX, I really mean plasmapheresis and it did not include any sort of IVIG with the treatment. Everything in my son's body is his own - and his quantitative IG workup scores were all solidly in the normal range ( Dr Latimer did not test sub-classes.) (tested prior to the plasmapheresis). So we don't consider him immuno-deficient.
We haven't done any pneumo titer testing. Post-pex, I don't know what would show up, if anything. So I'm not trying to enter the debate in this thread. I just didn't want to leave everyone with the impression that the treatment Dr Latimer is doing involves replacement donor immunoglobulin.
-
Our LMFT (Licensed marriage & Family Therapist) diagnosed my son. We'd never heard of Pandas. But we started seeing the LMFT for severe anxiety and tics following a strep infection. Our pediatrician dismissed the dx as did two neurologists. We fired the pediatrician and the new one was willing to entertain the idea (eventually agreed it was infection-triggered but was only willing to do episodic abx). 10 months into the nightmare, we found Dr Cunningham and had our "smoking gun". We then went to Dr Latimer and after a T&A and PEX, are hopeful we have the upper hand on this thing.
BTW - my son's ASO/anti-dnase titers were "negative" three weeks after the rapid strep test turned positive in under 30 seconds and he had white blisters on his throat. I know titers can be convincing, but in our case, they have zero meaning. Our Cunningham CAM Kinase II results were 183% above normal and ds is on the low end of SC.
-
Alex,
If it's any consolation, after 2 1/2 weeks without any physical symptoms, my son just came home from the grocery store and has been humming intermittently for the past half hour. Also saw a flash of chorea. However, he continues to be very nice to his sister. So all I can do is wait and see. We are hoping it is just a blip as part of the healing process - another "firework" - tho admittedly it's always the tic that terrifies me, as it is always "symptom 1". Only time will tell. But please let us know what Dr Latimer has to say.
Laura
-
Alex,
I don't want to sound like I'm offering false hope. Obviously the one to ask is Dr Latimer. I just want to mention what we've seen.
We are 6 weeks post-pex. Weeks 2-3 were bad - tics were worse and the cognitive fog was way way worse than before pex. But during a regular Pandas episode, our symptoms would be a bell curve. Symptom 1 would show up, then symptom 2, 3 and 4. Then he'd heal in reverse and symptom 4 would disappear, then 3, 2 and finally 1 would go away or at least subside.
Post-pex, we didn't see the bell curve. We saw fireworks. We'd see symptom 1 get worse. Then a flash of symptom 3. Then a half day of quiet. Then a few flashes of symptom 2. It was the same symptoms, but not the same pattern. Now, 6 weeks out, we are on a fairly steady course, even after a viral infection that fortunately didn't trigger anything.
I don't know that anyone knows what to expect because there hasn't been adequate tracking. But it does seem that it's not uncommon for there to be two steps back during a part of the recovery process.
I'm not trying to say there isn't something going wrong. I'm just trying asking about the pattern of symptoms in the hopes it gives you something to consider until you're able to reach Dr Latimer. Your family will be in my thoughts,
Laura
-
Here's another Swedo webcast from last fall
Dr. Swedo webcast Fall 2008 autism conference
”Progress and Pitfalls & Notes on PANDAS”
http://www.autism.com/danwebcast/video-lis...erence=SanDiego
you have to scroll down to find the specific talk by the title above. This link just takes you to a page with 20 or so presentations. It's a great 30 minute investment of your time.
-
EA Mom - my son also reads more when he's feeling better. It's like he can finally enjoy the sense of accomplishment instead of dreading it.
T. Mom - you may be right about age of onset effecting different subject matters. My son was a beginning reader when he was first diagnosed (start of 1st grade but probably had milder episodes even as a preschooler) and never had this skill under his belt. He also has yet to lose his first tooth, tho he just turned 7. His teacher thinks that kids don't really grasp reading until they've lost a tooth. Something corresponds with the body's development and the ability to process reading with ease. You hear about Pandas causing age regression in behavior and baby-talk. I sometimes wonder if it doesn't also slow down other types of physical development (e.g. losing the tooth, enuresis, etc), which in turn delay certain cognitive developments/achievements.
As I mentioned, I am collecting questions for a questionnaire. If anyone has questions they'd like to suggest, please feel free....
-
I'm curious. When my son was first diagnosed with Pandas, I thought he was the only one who struggled with reading. Unlike the published symptoms, he's strong in math. I'm now coming across others who are in the same boat. So I figured I'd try out this polling option to see what sorts of challenges everyone faces in school. This is my first attempt, so apologies if I screw it up.
-
Just want to echo what MomMD has experienced. We are 5 weeks post-pex. Our first few weeks saw symptoms get worse - sometimes much worse- than prior to treatment. But this week, my son went 3 days completely symptom free - except for a continued struggle with reading. But during previous periods of convalescence, we've seen his reading improve significantly, so we're hopeful this will improve again. That issue aside, the changes we see are huge. Some days it feels so strange to realize we haven't heard a hum, grunt, or seen a twitch all day. He's even having a lovefest with his sister right now (probably won't last). It feels like I'm living in someone else's house!
He's had two colds since school started. One only lasted 2 days and this one is looking like a normal cold. Aside from that half-cough some of you know so well, no Pandas symptoms. And the half-cough is mixed in with real coughs, so maybe it's become a learned habit of sorts. Will be keeping a hawk's eye on it to see if it subsides with the cold. But his ability to fight a cold seems better. He seems stronger.
We expect slow healing. We keep trying to remind ourselves that occasional set-backs don't mean "it" is back. Just that things are healing. But it's so hard to not freak when you see the smallest symptom return.
It took us a long time to reach the decision to do Pex. But I'd encourage anyone considering it to go ahead with it. It's indescribable to see my son coming back. And no one is happier than he is.
Also- for anyone who's done Pex or IVIG, I am working with another mom to gather some info so we can present a clearer picture of recovery. No one has done any follow up. If you you wouldn't mind sharing your contact info with me, please pm me so we can contact you once we have our act together with some sort of questionnaire. Thanks!
Laura
-
Jules,
I agree with your Pediatrician that it sounds as though your son has Pandas, especially given his improvements on antibiotics. My 7 yo son has Pandas and went thru repeated strep infections throughout last fall and winter. Tics were his dominant physical symptom. In the beginning, all symptoms would disappear between episodes. But eventually, every time he started to get better and came off of antibiotics, symptoms would exacerbate. Eventually, episodes started to run together and the tics stopped going away.
I too struggled with whether I should accept a TS diagnosis. In May, we had my son's blood tested by Dr. Cunningham at the University of Oklahoma in the US (see the Pandas forum for tons of info regarding her tests). His results put him on the high end of Pandas kids and very close to Sydenham's Chorea. At his worst, my son's tics were so severe, he would "freeze" in mid-sentence or mid-stride for 3 seconds before he would resume his activity. It was terrifying.
In August, we went to Georgetown University and had plasmapheresis. 4 weeks after treatment, his tics completely disappeared. He does not have TS. He has/had Pandas. He is now on prophylactic azithromycin.
From reading your past posts, I wonder if you ever considered scarlet fever as an explanation for the rash.
I don't want to get off-topic on the Tourette's forum. But if you would like additional information, I'd be happy to discuss specifics with you privately.
I do want to encourage you to not give up on the Pandas dx. Tics can be very difficult to eradicate and often Pandas kids need IVIG or plasmapheresis to eliminate them. But if Pandas, the tics do not have to be a residual, permanent symptom.
LLM
-
Two weeks ago, I spoke with a mom whose daughter was the last of the 50 in Swedo's original study. If you pm me your email, I'll forward to her and ask her to contact you directly.
The day I spoke with her, her 18 yo daughter had gotten a plane to spend a year living abroad. She too had recovered very well and is now living a full and healthy life. Her daughter had PEX. Had a very rough recovery, but did recover without any long lasting issues.
New International OCD Website
in PANS / PANDAS (Lyme included)
Posted
Peggy,
I saw the same thing last night when Louis posted the new link. The old OC Foundation site had a page devoted to PANDAS - didn't go into more than just an overview, but at least it informed parents of the disease. The new site has nothing on PANDAS and doesn't have a "search" box to query the word (which I found strange). Personally, I like the old site better.
I have a friend who's pretty involved with the organization and I emailed her this morning to see if she can ask about the sudden disappearance of the PANDAS information. My understanding is that OCF is fairly supportive of PANDAS, so I don't want to read too much into it without getting more of the story. I'll let you know what I hear back.
Laura