momaine
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Angela,
could I ask if this is the first abx she's been on, or is this just the first time on this high dose? how did she fare before this? you mean she showed improvement right away on the 2000?
my guy is not really doing anything great on a month of augmentin and now azith. funny, I corresponded with his teacher via e-mail yesterday telling him how his ocd and behaviors seemed to be on the rise and joked that he seemed to have PMS!..... I actually feel like he's worse on abx......
thanks
Faith
Dd was a week on 1000mg of regular Augmentin then we upped it to 2000mg augmentin xr. its been 3 weeks on the higher dose. she's had PANDAS for 3 years though, but she had a couple really long spells in the middle where things were mostly controlled. This fall is the worst exacerbation ever and it was just a month ago that i figured out it was pandas. This is the first antibiotic she's ever been on in her whole life. She is 13.
We started Advil a few days before Augmentin and she drastically improved right away on the Advil. Then we added Augmentin and I did not see more improvement other than what I saw from the Advil until 10 days into the 2000mg dose when she stopped her tics completely for 10 days. Now they are back yesterday and today. Her ocd is horrible yesterday and today. =(
I called Dr. Trifiletti's office today and left a message. I plan to take her as soon as possible. The antibiotics that she is on now were prescribed by our family physician. I need an expert on board. 6 hour drive. will be worth the peace of mind.
Angela
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We just use a plain old acidophilus now. We used to use a probiotic that did have the strep ingredient in it - we did not realize it until later
Can you elaborate on what this ingredient is?
Angela
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Thank you Vickie,
Every story like this is helpful to me. This is the worst day we've had in a month. Even the day she got the H1N1 Vaccine was not this bad for this amount of time straight. I gave her an extra Advil but it still hasn't helped. Sigh...
Angela
If it means anything, my son did not do high dose Augmentin, but I did notice through his recovery he would be improving then I would see a setback wthat would last a few days. Then the odd thing was he would eventually "snap out" of the setback and not only be back to where he was pre-setback but even slightly better. I compared it to watching a computer defrag itself. If you've ever watched a computer defrag itself, it reorganizes info to make it work better and faster. During the process so much gets shifted around and to the human eye it doesn't make sense what's going on. It takes a long time to completely defrag a computer, butin the end it's works better and faster. I can see the brain being similar. -
I'm using the adult version, once a day between antibiotic doses. Dd is 13 years and 93lbs.
Angela
Allison, when you first started the azith what was the dosage that you used for the 15 days. When you say that he is now on 500ms every5 days do you mean he takes 500mgs on one day and then takes nothing for 4 more days? I ask because the dr who is helping me does not know anything about PANDAS and only goes by what I tell him for dosage. We are on 600mgs augmentin twice a day and it has stopped working. She has been on this dose for a month now and it only worked for a few days. She has OCD issues but is mostly ADHD and Tics.Melanie
Also, what probiotic do you use. They all seem to have strep in them.
What do you mean, they have strep in them? We use Culturelle. It is what the doctor recommended in the book Saving Sammy.
Angela
Angela - We are also using the Culturell. Are you using the dosage for Kids that are in powder packets? Are you using it once a day?
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Hi Worried Dad,
Thanks for responding. We've been dealing with some of the ups and downs which I did expect, but with this particular symptom having been GONE for ten days, it made me really worry to see it resurface. I'll hang in there and see what happens. I hate this freaking disorder! Makes me want to scream. My poor girl is having such a crappy day. grrrrrrrrrrrrrrrrrr.
Angela
Hi, Angela:Our son's been on the 2000 mg augmentin XR for 2+ months now. A couple of weeks ago, he hit a snag - complained of feeling hot and sweaty and his forehead did feel slightly warm to us. (Could have caught a bug from one of his brothers.) He didn't relapse, but his progress stagnated a bit.
I spoke with Beth Maloney to ask about Sammy's healing pattern. She reassured me that it was not linear: followed that sawtooth "2 steps forward, 1 step back" pattern. She said there were good days and bad days... but, over time, the good days steadily outnumbered the bad. She also said that, for Sammy, recovery came "in waves."
Well, I was a little worried (because about this time last year our son caught a sinus infection and had a relapse post-IVIG round 1). But this week, he's making progress again! Started walking around the house barefoot and let Mom cut his hair - probably seem minor, but these were both firsts since his March exacerbation. His progress appears to be back on track!
So you might want to hang in there a little longer with the augmentin. I guess it's a judgment call as to when to switch to something else, but Beth M definitely said Sammy's recovery was uneven.
Hope that helps, and best of luck!
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Allison, when you first started the azith what was the dosage that you used for the 15 days. When you say that he is now on 500ms every5 days do you mean he takes 500mgs on one day and then takes nothing for 4 more days? I ask because the dr who is helping me does not know anything about PANDAS and only goes by what I tell him for dosage. We are on 600mgs augmentin twice a day and it has stopped working. She has been on this dose for a month now and it only worked for a few days. She has OCD issues but is mostly ADHD and Tics.
Melanie
Also, what probiotic do you use. They all seem to have strep in them.
What do you mean, they have strep in them? We use Culturelle. It is what the doctor recommended in the book Saving Sammy.
Angela
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Hi Angela,
No - when tics return for short periods of time I don't see it as the antibiotic not working - we still had ups and downs for many years - there were always other factors - we found anything that bothered his immune system could cause a tic to emerge, be it being overtired, coming down with a cold, raining (molds), seasonal allergies, and most recently we find growth spurts. I think the antibiotics just help keep things leveled out a bit - the immuno modulating effect of the azith I think is key - I used to always talk about the bucket theory. Their immune system is like a bucket that can fill up so much before it overflows - an illness is like a hole being nailed in the bucket - so it leaks right away - the other stuff - allergies - food, environmental etc also fill the bucket and can make it overflow. We found when tics emerged due to other issues - we would become very strict again with food/tv watching etc - all other known triggers to try to empty his bucket a bit.
It is when tics get quite bad and the antibiotics are not making a dent that I think it is time to try another antibiotic. We have been on azith for 3 years and he certainly has tics in that time and at no time have I considered taking him off the azith and trying something new. I used to hope that antibiotics would just make it all go away and we would be done with PANDAS and tics - but that did not happen for us - it was a slow process but worth the journey. The antibiotics have been a crucial part of his treatment but so has all the other stuff that we did and still do. (still no gameboys etc and we still limit watching tv and florescent lights still bother him - but not nearly as badly as they used to - he would almost convulse when we went into stores with lighting - it was pretty shocking.)
I am assuming you are having her take probiotics (I didn't early on - had never heard of them back then!) Yeast could be an issue if you are on a full round of antibiotics.
Thank you very much for responding Allison. Dd is on a probiotic as well as 8000mg vitamin D3, Omega 3's, Advil (which reduces her symptoms a TON), and 40mg Celexa, as well as a regular multivitamin. I'll try to hold off panicking just yet. =) Wish this road were a little easier. Happy Holidays!
Angela
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Hi,
Anyone have any experiece with a tic going away for a period of time and then returning? Dd was ten day with no tics from about the tenth day on 2000mg of Augmentin xr to about the 20th day. The last few days have been more difficult than the couple weeks previous. Saturday she started her period so I blamed the difficulties on that....but today, the 5th day of her period I'd be expecting her to be returning to her "norm." But instead, she's really struggling today and she was ticking while trying to dress today.
I am wondering if that just happens some days while healing from this or if it is indeed a real set back and I should consider another antibiotic at this point. She'll have been on the 2000mg Augmentin XR for 3 weeks tomorrow.Angela
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Hi Allison,
Thanks for posting in order to give us some hope. I have a question for you....My dd is 13 years old and she started 2000mg Augmentin XR 3 weeks ago (tomorrow will be 3 weeks) She improved for the most part during that time. (improved mood, less tactile defensive, less reassurance questions) Her issues are mostly ocd but this fall she started with a vocal tic that shows up when she is under stress with ocd issues. It is a soft vocal tic. On about day ten of that dose of Augmentin her tic went away and stayed away for about ten days until today.
She started her period on Saturday and since that day things have gone down hill. I was attributing that to hormones as she always had worse symptoms during the first few day sof her period. But then the tic started back today. (5th day of her period) I thought that by today things would be smoothing out again. In your experience when a tic returns (even for one day) is it a sign that the antibiotics are no longer working?
Thanks,
Angela
Hi All,I used to post here many years ago....it was here where I found so much help, support, etc. Chemar, Claire, Kim, Mustang Carol, and Ronna along with many others helped me find my way during very dark times. I do still check in every once and a while (but I find the new format of threads difficult to follow - I much preferred the old way!). There is also so much more discussion about IVIG etc which was not discussed too much back then - I did ask our doctors about it and they would not even consider it in Canada at the time, same with the steroid boosts. There also seems to be more focus on OCD on the posts I read.... tics were the big issues for us.
My son was diagnosed at 6 with PANDAS (almost 6 years ago) after a sudden (overnight) and SEVERE onset of simple and complex motor and vocal tics (tics by the second) - along with personality change, emotional lability, separation anxiety....etc.....we also discovered he had become photosensitive so lighting and tv became big triggers. It was a very difficult time, antibiotics helped but did not bring him back to the way he was pre-PANDAS. We also did lots of vitamins/supplements and removed many foods based on testing. There was little info out there - but I searched all I could and would go to my doctors with info from sites like this. Fast forward....my son is now 11 - he is a joy, he has been on azith since he was about 9 (after trying to go off amox and do a trial of no antibiotics - which was a disaster) - it then took about 6 tries with different antibiotics and combos of antibiotics - then I read about azith and begged for it - I was told it was the last one they would try...it was a miracle! In the last year he has started to get sick the way normal kids get sick, fevers, chills etc - no longer is illness presented with an increase in tics. He is a competitive hockey player - plays 4-5 times a week, and does well in most sports. He also does well in school and no one would know he has anything wrong with him. He does still have tics (only eye ones) but they are quite subtle, I notice them all but others don't. I recently started him on some vitamins from Kirkmanlabs - as I was feeling like his eyes were ticcing more - and he is at an age where this could affect him socially - I am sure it is because he is going through puberty....the vitamins seem to have settled things down. Our plan is to keep him on azith until he is 18. His diet is much more lax now - he has wheat and is allowed dairy at parties etc. At home we just drink almond milk.
I am still in touch with Ronna and I am sure she would not mind me updating that her son is tic free, he is 2 years older than my son. Her story was most like mine (he too is on azith). I hope to give others hope that these kids do get better. 5 years may seem a long time to wait, but the progress has been slow and steady - each month a little better than the month before - we have had a few blips over the years - but nothing significant for the last 2 years. Every once and a while we do a full round of antibiotics if tics emerge due to illness and don't settle down on their own. Again, these tics are minimal - not complex and not vocal. I remember the months of squeaks, coughs, sniffs etc - they would drive me crazy - I would know the minute he was asleep as the house would become silent.
Anyway....just wanted to touch base and give others hope. I always wondered what happened to other posters kids - I hoped the fact they were no longer posting meant they were no longer in a crisis and their kids had got better. This is the case for us.
Wishing all of you mom's and dad's much happiness and love over the holiday season. I think back and my only regret is probably not enjoying school concerts etc as all I was focusing on was my son's tics....if only I had known they would eventually all go away. I hope this gives at least one of you hope....
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I was told that children with PANDAS have tics or would develop them quickly. I was wondering if this was accurate? My son doesn't have tics
My dd has only ocd symptoms for 3 years but then developed a tic this fall during a terrible exacerbation of symptoms.
Angela
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Dd's symptoms have always(3 years) been primarily OCD until this fall. She had a terrible exacerbation and that was when she developed two tics. One facial and one vocal. They usually only showed up at night when she was really stressed and having difficulty with the OCD, but sometimes during the day too if she was having a hard time. She's mostly a repeater. Repeats steps, doorways, words, etc. and asks a LOT of reassurance questions.
She is still on Advil. The advil instantly brought her relief from a good chunk of the ocd. It made it managable. She doesn't' rage or cry much while on Advil, except occasionally, like the night before last when it was the first day of her period and she was having trouble going to sleep...and had a friend over...and felt like an idiot. Before the Advil she raged and cried daily up to 5 hours a day.
When we started the Advil it did not affect her tics. She still had the tics, so the only thing I can figure is that the Augmentin xr has started to work. Honestly, It's hard to tell but that was my reasoning.
Other changes I have noticed in the last week or so but have yet to give credit to the Augmentin just yet are the fact that she's less tactile defensive. I've kissed her a few times and she did not begin her normal routine of hugging and being unable to stop...and frustrated...asking me to not do that. Other subtle changes too.
Angela
Dd stared Augmentin at the higher Saving Sammy dose 2 weeks 3 days ago. (for one week before that shew as on half the dose) I believe it has been about 7 days since I've seen her tic. It was almost always at night when she was having a difficult time. She still has a hard night sometimes (last night was one...first day of her period) but there was no tic.Hopeful.
Angela
Hello Angela,
Is your DD still on Advil? so do you think all the improvement should owe to Augmentin XR? Or Advil helps some? What dose of Advil do you use? times/day?
Thanks,
Jack
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Dd stared Augmentin at the higher Saving Sammy dose 2 weeks 3 days ago. (for one week before that shew as on half the dose) I believe it has been about 7 days since I've seen her tic. It was almost always at night when she was having a difficult time. She still has a hard night sometimes (last night was one...first day of her period) but there was no tic.
Hopeful.
Angela
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My dd had the H1N1 about a week after she started taking Advil which reduced her symtpoms a LOT. (like 80%) That night (13 hours later) she did 3 hours of compulsions with crying and raging, unable to stop. She had not had a night like that since starting Advil. The next day was also difficult but not as bad. By the following day she was back to her normal self with Advil, which is fairly even keeled....with some (but managble) repeating walking/shuffling, doorways, reassurance questions.
Angela
I'm curious how PANDAS kids are reacting to vaccines. If your child has received any vaccinations since their PANDAS surfaced, can you let me know your experience with them? Did they have a setback due to the vaccine? Did they do fine?Can you please tell which vaccine the child received?
How long after their last PANDAS exacerbation did they receive the vaccine?
If they had a setback, how severe or mild was it and how long did it last?
If they had a setback, could there have been any other contributing factors?
Thanks!
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This will be a fantastic resource.
Another thought I had was discussing the exact doses of antibiotics that helps these kids. When I first asked our family doctor for a HIGH dose of Augmentin she put dd on 1000mg per day. Then I read Saving Sammy and asked for more and specifically the XR which is extended release with a different ratio of Ammoxicillan to Clavulonic Acid. (the regular augmentin had too much clavulonic acid if you upped the dose to 2000mg per day....based on her body weight.)
And maybe how Advil can help....and other things to benefit the immune system like Vitamin D. and the benefits of Probiotics while on antibiotics.
Thank you !
Angela
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Do any of your kids have raging tantrums or crying spells?
If we get off Seroquel and Prozac what would you recommend? Namenda?
Will antibiotics stop this if it is PANDAS?
Thanks Laura
yes, many of these kids have rages and crying spells that they did not have before PANDAS, mine included. Sometimes ssri's don't help pandas kids and sometimes they do. My dd was on zoloft for a couple years before we knew it was pandas. It helped at first then stopped working. then she started celexa which also helped some. Then we figured out it was pandas and we started her on 2000mg augmentin xr per day two weeks ago. The dr. did not want to make more than one change at a time so she is still on celexa. Antibiotics alone allow some of these kids to heal and some need more. We've also started her on 8000mg per day vitamin D (from the d3 family) and Omega 3's. Plus probiotics between antibiotic doses. Advil reduces her symptoms a lot so we giver her 400mg of that per day. We're getting by hoping for good news. I was thinking she had been on the antibiotics longer but it has only been 2 weeks 2 days at 2000mg per day so it's still early to tell.
Angela
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This is fantastic! A big thank you to those of you who have given your time and energy to make this disorder known. I am still struggling with the day to day care of my dd. This is invaluable.
A revised version, see what you think...What is PANDAS?
PANDAS is a pediatric autoimmune disorder characterized by the dramatic onset of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection.Signs and Symptoms:
Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder. In addition, these children may have some or all of the following sudden onset symptoms:-
Emotional lability (e.g.,sudden unexplainable rages, fight or flight behaviors)
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daytime urinary frequency/enuresis
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Personality changes
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ADHD
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Anorexia (particularly fear of choking, being poisoned, contamination fears)
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Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)
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Age inappropriate behaviors particularly regressive bedtime fears/rituals
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Separation anxiety
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Tactile/sensory defensiveness
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Marked deterioration in handwriting or math skills.
Diagnosis of PANDAS/OCD is generally a clinical diagnosis, marked by the sudden onset and extreme exacerbations, such as a mean increase of +18 points on the OCD CY-BOCS score during an exacerbation. The abrupt onset and remission after eradication of streptococcal infection separates the child from non-PANDAS OCD. Many parents can pinpoint a day or a week when behaviors changed.When a child has primarily vocal and motor tics, the symptoms may appear to overlap with symptoms of Tourettes Syndrome; however, the children can be differentiated by observing symptom exacerbations over time. In PANDAS children, a streptococcal infection precedes symptom exacerbation and once treated, initial exacerbations generally remit. The rapid onset with significant remission is characteristic of PANDAS.A throat culture for Group A Beta-Hemolytic streptococcus (GABHS) at time of exacerbation onset is recommended to diagnose a pharyngeal streptococcal infection. If the culture is negative, a blood test may be able to test for streptococcal exotoxins. A common blood test is Anti-Streptolycin O; however, this test is affected by many factors and in one study over 46% of children did not have a rising ASO titer despite having colonized strep.For children affected by PANDAS, a GABHS infection is considered to be the triggering event that causes an initial episode. However, as is the case with Sydenham’s Chorea, subsequent PANDAS exacerbations may be triggered by recurrent GABHS, or by other bacterial or viral infections (ear infections, sinusitis, pneumonia, meningitis, impetigo) further complicating diagnosis.Treatment:
Streptococcal infections are treated with antibiotics.Cognitive Behavioral Therapy (CBT) has been shown to be effective on some children with PANDAS and to provide families with coping strategies during a PANDAS flare. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such casesand there is a a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for PANDAS children.Several reports have shown effectiveness of immunomodulating therapy (IVIG and PEX) in combination with longer term prophylactic antibiotics,or longer term prophylactic antibiotics alone. These treatments are still considered experimental and have several risks. Some physicians will use anti-inflammatory drugs for a short period of time to assist in diagnosis. Immunomodulating therapies are not effective for Tourettes Syndrome or other non-PANDAS OCD cases, again separating the child with PANDAS.Getting Help:
PANDAS was only identified in 1998 and as such is a recent disease. Additional research is needed to identify the most effective treatment protocols. Taking copies of recent studies to your doctor may help them diagnose and treat your child. You may need to interview pediatricians, neurologists and immunologists. For referrals to local doctors with experience, one source is a parent’s support group at.Research:
PANDAS is thought to be caused by the following sequence of events in this order:-
The production by the immune system of an antibody that can interact with neuronal tissue
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A failure of the immune system to suppress this antibody
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A breach of the blood brain barrier such that the antibody reaches neuronal tissue
All three areas have active research results and require duplication of experiments to help reach consensus in the research community.Other considerations:
Other autoimmune illnesses that may cause sudden onset OCD and other neuropsychiatric disorders include: Lyme Disease, Thyroid Disease, Celiac Disease, Lupus, Sydenham Chorea, Kawasaki’s disease, and acute Rheumatic Fever. Some children have been found to have Immunology challenges such as IgG subclass deficiencies. Children will need to be evaluated for this issue by an immunologist. In addition, while there is good evidence of anti-neuronal antibodies in PANDAS, the diagnosis remain controversial primarily due to the observations by Johns Hopkins researchers who have not been able to detect such antibodies in their research subjects.References
[swedo1997]S Swedo et al, “Identification of Children With Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections by a Marker Associated With Rheumatic Fever”, Am J Psychiatry 154:1, January 1997[Kirvan2006]Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9.[swedo2004]Swedo SE, Leonard HL, Rapoport JL.” The pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) subgroup: separating fact from fiction”, Pediatrics. 2004 Apr;113(4):907-11.[Moretti2008]Moretti G, Pasquini M, Mandarelli G, Tarsitani L, Biondi M (2008). "What every psychiatrist should know about PANDAS: a review". Clin Pract Epidemol Ment Health 4: 13.[swedo1998]Swedo SE et al., “Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases”, Am J Psychiatry 155:2, February 1998.[Murphy2004]Murphy TK, Muhammad S, Soto O, et al. “Detecting pediatric autoimmune neuropsychiatric disorders associated with streptococcus in children with obsessive-compulsive disorder and tics”, Biological Psychiatry, Volume 55, Issue 1, Pages 61-68, January 2004[Pavone2006]Pavone P, Parano E, Rizzo R, Trifiletti RR (2006). "Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants". J Child Neurol 21 (9): 727-36.[shet2003]Shet A, Kaplan EL, Johnson DR, Cleary PP, “Immune response to group A streptococcal C5a peptidase in children: implications for vaccine development”, J Infect Dis. 2003 Sep 15;188(6):809-17.[storch2006]Storch EA, Murphy TK, Geffken, G et al, “Cognitive-Behavioral Therapy for PANDAS-Related Obsessive-Compulsive Disorder: Findings From a Preliminary Waitlist Controlled Open Trial”, Journal of the American Academy of Child & Adolescent Psychiatry: October 2006 - Volume 45 - Issue 10 - pp 1171-1178[Murphy2006]Murphy TK, Storch EA, Strawser MS, “Selective serotonin reuptake inhibitor-induce behavioral activation in the PANDAS subtype”, Primary Psychiatry, 2006;13(8):87-89,[Perlmutter1999]Perlmutter SJ, Leitman SF, Garvey MA, “Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood”, Lancet 1999; 354 : 1153 – 58[snider2005]Snider L, Lougee L, Slattery M, Grant P, Swedo S. "Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders". Biol Psychiatry 57 (7): 788–92. 2005[Nicolson2000]Nicolson et al, “An Open Trial of Plasma Exchange in Childhood Onset Obsessive-compulsive Disorder Without Poststreptococcal Exacerbations. " J Am Acad Child Adolesc Psychiatry 2000, 39[10]: 1313-1315[Yaddanapudi2009]K Yaddanapudi, M Hornig, R Serge, J De Miranda, A Baghban, G Villar, W I Lipkin Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection Molecular Psychiatry August 11, 2009 doi:10.1038/mp.2009.77[schneider2002]Schneider R., Robinson M., Levenson J., “Psychiatric presentations of non-HIV infectious diseases: Neurocysticercosis, lyme disease, and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection”,Psychiatric Clinics of North America, Volume 25, Issue 1, Pages 1-16[Martono2007]Martono D, Church A, Giovannoni, G, “Are antibasal ganglia antibodies important and clinically useful?”, Practical Neurology, 2007; 7: 32-41 -
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I started giving her 8000mg of vitamin D (for the d3 family) plus 1 Omega 3 fish oil capsule per day starting 2 days ago. I just looked up DHA (never heard of it) and it is affordable enough so I'll pick up some of that next time I'm in town. Thank you for your thoughts. It hasn't been a month yet and so I"ll try to be more patient. On the good days I am so hopeful but on those difficult days I worry.
Angela
Even if you didn't change your name, my brain is too fried to keep everyone's "stories" straight.Some have said that it took even up to a month to truly see improvements.If you had to try to put a percentage on improvement, what would it be?
As for how long it takes, I feel bad when I say this, but it really does vary child to child. Also, some kids may eventually, need to take further steps to go into remission.
For my son, the first two strep triggered exacerbations took about 6 weeks to overcome. The last strep triggered exacerbation took 5 months to completely overcome.
In my opinion, as long as you continue to see some improvement, that's good. It's when you have dramatic setbacks lasting awhile or reach a plateau in recovery and you still don't consider your child back to themself that you need to question what is going on.
Also, give supplements to help the brain heal from all those years of inflammation. Omega 3's, DHA, are good for the brain.
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Thanks Buster. There has been some improvement but then she'll have a tough day and I'll worry that it isn't working. The improvements are small things but they all count. I kissed her cheek both yesterday and today and it did not set off a bunch of repetitions that she could not stop. (That's a sweet one, I miss kissing her and haven't been able to for 3 years) I haven't seen the tic for at least 5 days. Her mood has improved over all. She has slept upstairs (couldn't even go up the stairs a few weeks ago) of her own accord 5 times though it was difficult.
Today she asked a LOT of reassurance questions. But that was one of her first symptoms and one of her worst. It hasn't been half bad lately. It used to be the first thing out of her mouth in the morning and the last thing she said before going to bed at night. I keep telling her we need to see these little improvements and focus on those rather than the difficulty she is still having. But at 13 it's hard to be patient. Besides, I'm not patient and I'm much older. I just want that smilely little funny girl back full time.
Angela ~ trying to be patient
Here's our time table (and I can send you a graph it it would help :-) )
OCD symptoms remitted 2 weeks after azith
movement disorder/motor tremor remitted 4-6 weeks after azith
vocal tic remitted 6-7 weeks after azith
We were then stable for the summer. We have some other items that happened, but the general rule has been 4-6 weeks for any dramatic improvements.
Buster
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Did your daughter have a vocal tic for three years? any other symptoms? was there any strep to erradicate in the last month or you just trying antiboitics? just curious.... (sorry, I am confused due to the name change.......... )
No, the vocal tic began this fall during the worst exacerbation she has had so far. I haven't seen it for at least 5 days now.
Angela
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Dd started on Augmentin XR 2000mg about 2.5 weeks ago.(and a week beofre that was on 1000mg regular augmentin) It was around that time that she started on Advil and we saw big improvements from that. It does seem thatin the last 4 or 5 days that her tic is gone. (vocal tic which only showed up under extreme duress and which was also the last symptom to show itself) In writing it, it doesn't sound like its been a long time but I was hoping things would move along a little more quickly. She has had this for 3 years though.
How quickly was it before those of you who have been successful treating this were able to see your old child back? Am I hoping for too much?
Angela ~ wishing her dd had NO symptoms
by the way, i changed my user name. same Angela that has been posting recenlty.
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Dd started on Augmentin XR 2000mg about 2.5 weeks ago.(and a week beofre that was on 1000mg regular augmentin) It was around that time that she started on Advil and we saw big improvements from that. It does seem thatin the last 4 or 5 days that her tic is gone. (vocal tic which only showed up under extreme duress and which was also the last symptom to show itself) In writing it, it doesn't sound like its been a long time but I was hoping things would move along a little more quickly. She has had this for 3 years though.
How quickly was it before those of you who have been successful treating this were able to see your old child back? Am I hoping for too much?
Angela ~ wishing her dd had NO symptoms
I am wondering if that just happens some days while healing from this or if it is indeed a real set back and I should consider another antibiotic at this point. She'll have been on the 2000mg Augmentin XR for 3 weeks tomorrow.
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Too late for PANDAS dx?
in PANS / PANDAS (Lyme included)
Posted
I know someone whose dd suffered for 12 years with this and with proper antibiotics she's doing very well now. It's not too late but there isn't a test to prove she has it, that I know of. (someone can tell you more about the Cunningham tests) It's sort of a set of symptoms that makes it likely or not. Some kids respond positively with Advil which reduces inflamation of the basal ganglia. Sometimes doctors will do a steroid burst and if they respond, it is more likely PANDAS. If it is PANDAS many kids do well on antibiotics. (only certain ones though) Keep reading this site. Lots of info to glean. I'm in the middle of this myself. good luck.
Angela