deby
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Posts posted by deby
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I don't know which way to go.
But he only puts patients on prophylactic antibiotics if they have evidence of heart involvement, and I don't know that he knows anything at all about PANDAS. We are in a very PANDAS ignorant/hostile area of the country.) She was unable to go to school or have a normal life. She has zero stamina. Her doubts, intrusive thoughts, and worry have all but destroyed her social life. We were told by one integrative physician that she has PANDAS (he was following her ASO titres, and at that time I knew nothing much about PANDAS. I know now for certain he was RIGHT. PANDAS, without question), but he does not prescribe antibiotics for PANDAS, as he would rather fix her immune system over the long term. He has also advised us against IVIG, as he feels it should be reserved for life threatening illnesses only. I trust him, because he has helped us in so many other ways, but I feel that she needs more immediate help. My gut tells me to find someone who will put her on prophylactic antibiotics, despite the harm they can cause, because I never ever want her to get strep again and go through any of this, both the physical and the mental destruction, again. But then, I hear that, because she is an older child with PANDAS, maybe IVIG is the way to go.
Thank you for reading this if you have gotten this far. I guess I am hoping for insight, experiences, anything that can help me.
Pam
Hi Pam,
I am in the same dilemma as you. In that I don't know which way to go. I prefer natural means, but when we got the pandas diagnosis it was by a conventional pandas doctor so we started the antibiotics that day. My daughter is 12. She is severe. She also would not be able to attend school. Fortunately we homeschool. You are lucky that you have an integrative doctor that knows pandas. Our naturopath and integrative MD are only vaguely familiar with it. Both advise to stay the course (with antibiotics) and even support steriod burst (though we are not likely...reserving that as a last resort) We are doing natural remedies along with antibiotics. Fortunately, our pandas doctor is natural remedy friendly and feels our daughter is on good supplements. You do not have to be restricted to the doctors in your area. There are people on the board who drive out of state to see a pandas doctor. Did you check the list of pandas doctors? The author of saving sammy also has a list of doctors. Dr. Nancy Mullan of Burbank, CA does natural remedies she told me that the success rate is better than conventional medications. I sent her an e-mail and she called me. She said that she would start with gut work. That is what we are doing. I always say go with your gut, though, in this situation I feel my intuition is affected by my fear... Anyway, I wanted to let you know that you are not restricted to natural verses conventional and that you are not restricted to the doctors in your area. (None of the pandas doctors in our area accept insurance anyway.)
May
Hi Parent4eyes, did you treat your child with Dr. Nancy Mullan ?what is your opinion of her? We live in Woodland Hills and I'm trying to find a PANDAS Dr. that also is open to check other connections as allergies/environmental that could affect the immune system.
Thanks.
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Is Dr. Mullen also a pediatrician? I would love to find a ped. who is also PANDAS literate.
We are in So. Cal, so Burbank would be great. Do you recommend her?
Thanks.
(And anyone else, a recommendation for a PANDAS literate ped in Pasadena/Glendale/Burbank/Duarte.... would be awesome.)
Thanks!
My advice is- If you are thinking of cutting back, just cut out one thing at a time and try to have an objective measure of behavior for several months before you remove another element.I highly agree and be sure to leave a significant amount of time in between.
I do not feel that supplements are a complete waste. Even if it turns out that, for example, the omega-3s didn't help with the pandas, it certainly is very good for your child. Many people with no health issues see these benefits and take omega-3s, probiotics, antioxidants, vitamins, etc.
A Pandas doctor, Dr. Nancy Mullan, in Burbank CA would respectfully disagree with the doctor who states that supplements will not help with PANDAS. She feels strongly that natural remedies are far more effective. A lot of theories and opinions... leaves us in the middle without any studies to show us the way. Good luck.
Hi! we also live in L.A, did you find a good PANDAS Dr. to treat your child?
thanks!
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Which medicine & amount it is recommended for steroid burst?
My Ds8 is 55 lb. Thanks!
prednisone or prednisolone
I don't have experience with Dr. K's 5 day protocol...so I don't know the doses.
My daughter took pred for a month--twice. The first time she was approx 42lbs and her highest dose (1st week) was 20mg broken into (2) 10mg in the am & pm.
The second time she was about 50lbs and her highest dose (1st week) was 30mg broken into (2) 15mg in the am & pm.
The tapering was a little different each time...but generally after each of the next three weeks the dose gets cut in half and/or every other day the last week or so...
I hope this is helpful.
Thank you Karen, very much for your response.
I was reading your posts, because I was wondering what was the treatment for your daughter, since it is the first time that I see that someone gets more steroid than 5 days.
We are currently been treated by Dr T. that he's not so responsive lately, and we don't know how to proceed.
It makes very sense to me to do the steroid for more than 5 days, and see if there are improvements, before rushing to IVIG.
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Which medicine & amount it is recommended for steroid burst?
My Ds8 is 55 lb. Thanks!
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My Ds8 started with tics 2 months ago, we brought a new dog to our house around 6 months ago.
I tested him for allergy (RAST) test for dog hair and it came negative.
Still, how can I be sure that he is not allergic to dogs saliva/urine/other?
Any possible treatment , besides giving the dog away ?
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Lynn,
As mentioned before there are some kids that food coloring and corn syrup really aggravate the tics, but I wanted mention another thing.
It is regarding the therapy, are you with him during the session? do you know if they talked yesterday about the tics?
What happen with our son, is that when we open the subject, and we started talking about tics, also the therapist talked about that, then tics came to his conscious, and then became really bad.
We decided (and we got this advise from the neurologist) not to talk anymore about the tics and to ignore them completely. Continue whatever we are doing at that moment.
I don't know if that is your case. but I just wanted to pointed it up.
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Deby - thanks so much for posting this.
I think they bring up some very good points that we often do not like to think about. What if my kid does not really have PANDAS and the relationship to an infection is just coincidental?
I agree with Kim - I know my son has increased reactions (including tics) when his allergies ramp up. Does he have PARC in addition to PANDAS - or do the allergies set up inflammation that allows a breach in the Blood Brain Barrier? I'm pretty sure about the PANDAS part because of his response to antibiotics over several exacerbations and his CamK scores. However, I also know that when we are very careful about his allergies he has fewer exacerbations.
The best part of this article is that they really worked to find a solution for THIS PARTICULAR child. They started with PANDAS, but the antibiotics did not make a difference, so they moved on. That is what evidence-based practice should be - start with something that seems most plausible based on the evidence - then reassess and move on if it is not working. The problem most of us have had is just the opposite of this child - docs seem to start with something OTHER than PANDAS and when that does not work they do more of the same.
What you wrote is exactly my feeling, I don't have an answer for your question, I'm pretty new at this (my son started with the tics 2 months ago).
I know that my son has allergies, and I know (by the titers) he had an infection.
Right now is on abx, but the question till when? he is not 100% yet.
What is affecting his tics right now? the allergies/the infection/both?
The problem as you said, that I couldn't find a doctor that keeps trying, that is open to different things.
I took my DS8 to an allergist, and she doesn't believe that allergies can cause tics. Still there are so many doctors that don't open their eyes to other possibilities.
Very frustrating.
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I was wondering if anyone treat their kids in the Drake Institute and what are the results.
Thanks!
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Happy New Year. What a great writeup and outline. I can't wait to read your new paper. Your paper with Pavone from 2006 was excellent and I love the reference to the Exorcist variant since I think many parents on this forum can relate to what seems like demonic possession.
The classification seems good and it might be worth a poll to see where we'd each put our kids. The treatments are really consistent with what many of us have tried.
What's been a bit unusual on the forum is that we've seen:
- kids who have ASO/Anti-DNAse B associated with exacerbation (i.e. Swedo classic - ASO/AntiDNAse-B )
- kids who seem to react to others in house who have culturable strep (i.e., seems like more an allergic reaction - elevated IgE or Eosinophils)
- kids who have non-pharyngeal strep A (e.g., vaginal or skin strep -- no ASO but elevated Anti-DNAse B )
- kids who seem to react to non-strep triggers (e.g., viruses, other bacterial infections, ...)
In addition, we seem to have two camps of those with primarily tics and those with primarily OCD.
All seem to respond to antibiotics or short term prednisone bursts. The exacerbations seem to last 4-6 weeks (i.e., an episode) but if another trigger comes in, they last longer...
My wife and I wonder if perhaps this is really a blood-brain barrier problem and all the variants are really just different manifestations of how the BBB gets inflammed -- or how antibodies cross the BBB.
It sure seems like the antibodies that are causing CaM Kinase II activation are in the blood stream for some time. Some trigger then opens the BBB and symptoms emerge. I appreciate this is still not proven, but it sure seems to explain things.
One of the other symptoms we've seen (don't know if you've seen it) was elevated monocyte counts and elevated CD4/CD8 ratios. This made us wonder if perhaps the immune system is just confused about whether the bacteria is extracellular or intracellular and choosing the wrong type to attack. This would have the same effect of not being able to clear an infection. This seems to us to explain the carrier state, the folks with low IgG, and those with CD4/CD8 imbalance with no ASO rise. Those with carriage aren't clearing the colonization leaving what is essentially a low-grade infection. Those with low IgG aren't clearing the infection leaving a low-grade infection. Those with elevated CD4/CD8 ratios but have an intracellular strain of strep wouldn't clear the infection and wouldn't have the elevated ASO/AntiDNAse B. We wonder if this is the common theme. None of this, of course, changes your recommendations, but it's something we've been wondering if others have seen.
I love the "Idiopathic antibiotic-responsive neuropsychiatric disorder" -- and even if that was a "separate syndrome" it sure seems a ridiculously good risk/benefit argument. If it cures kids, try it. If it doesn't, then move on to other stuff. It sure seems less risky that these anti-psych drugs that seem easier to get than a 30 day supply of antibiotics.
Anyway, I share the enthusiasm of others on the forum about your outline, post and advice.
Best regards and thank you for the post,
Buster
Dear Buster,
I read your reply to Dr. T and I saw that you talked about
"kids who seem to react to others in house who have culturable strep (i.e., seems like more an allergic reaction - elevated IgE or Eosinophils)"
I am interested to know if this is a common case, since this is exactly our case.
My husband and other non pandas son were tested positive for strep. My pandas son has extremely high titers, elevated Eosinophils, IGe on the upper limit.IGg sub 4 elevated.
Do you know how to interpret this combination of indicators and how to treat this.
My son is on abx (zytromax) for ~40 days. There is some improvement but very far yet to be 100%.
Thank you!
- kids who have ASO/Anti-DNAse B associated with exacerbation (i.e. Swedo classic - ASO/AntiDNAse-B )
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perennial allergic rhinoconjunctivitis can cause tics very similar as TS and PANDAS, does anyone knows about this?
Please read this link:
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21 days is half life of donor antibodies... 6 months for the rest. I'd wait 6 months to do any additional testing. From now until then, you really have to look at clinical picture to determine effectiveness of IVIG. There has to be a baseline adjustment downward over weeks not days to determine success or failure (another IVIG treatment is required).
We strongly believe our success post IVIG has been the use of high dose multiple antibiotics (more of a Lyme protocol) and treating other family members that have titers with antibiotics.
Our son who is now 50 pounds is on 250 m.g. Azithromycin and 600 m.g. Omnicef. We are 6 months post his last treatment and recently tested the following: Mycoplasma, ASO, Anti-DNase-B and Immune Complexes. ALL NORMAL!!!!!! We have decided to move forward with Igenex Lyme Testing (just to rule out additional co-infections) and are awaiting results currently.
FOR THE RECORD: My friends son who had RF, diagnosed with PANDAS and is included in our cluster recently tested positive for Bartonella and one other co-infection to Lyme. He is also 50 pounds and on 500 m.g. Biaxin and 300 m.g. Ripfampin daily...... I do not expect this antibiotic course to change for several months.
-Wendy
Hi Wendy,
Looks like there are no co-infections in the case of my son (only very elevated ASO, anti DNASE and streptozyme titers)in this case, with your experience in this forum, which abx is the best?
I am giving him only Azithromycin. Is Omnicef usually prescribed for strep only too?
Thanks!
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I went to see Dr. Stiehm around 3 weeks ago, he treated some kids with Pandas ( not many) and did some IVIG to some of those kids.
He is not an aggressive doctor, means that if your kid show signs of pandas (high titers + ocd/tics that appear suddenly) he will give abx for a short period of time, then he will prescribe some prophilactic abx for some time (around 4 months) and then if nothing help maybe he will start talking about IVIG.
He will not go fast to that approach. He complained a lot about the insurances giving him hard time and a lot of bureaucracy to approve and IVIG.
I can not say that I was really happy with him, also because his social skills specially with the kids are not the best.
He also recommended some medications for the tics (Neurotin) something most of the people are against, proven that it doesn't really help, and there a re a lot of side effects for taht.
In the other hand, I don't have other option that I know here in around LA.
I wonder if any one knows a good integrative physician, somebody who can guide me in nutrition, supplements etc.
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Thank you all for your advises, tomorrow I'm taking my DS8 to an allergist, we will start with the skin test and then probably the blood test.
I know that it could show no allergies, but if it shows at least I have a direction .
I'm also starting to suspect that he has candida/yeast so maybe I'll ask the allergist to perform some OAT tests.
Will see tomorrow, thank you!!!
Rchan, yes, Magnesium seems to help tics (at least this is what lots of people in this forum say, we didn't see improvement just by giving Magensium), we are giving Natural calm and epson salts baths.
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My now-16-year-old son had severe tics that started as throat clearing and eye squeezing in 1st or 2nd grade. These came on gradually just after we tried him on 10 days of the stimulant Ritalin for attention deficit problems. He developed both small tics like jaw stretching and finger to thumb rubbing, and full body tics, like doing pirouettes while walking and painful stomach tics. One of his most difficult verbal tics was when his speech became interspersed with "t-t-t-t's". Most all of his motor tics, however, were bilateral - he'd do them on both sides of his body simultaneously and symmetrically. Also, an important part of his history is that he had had numerous ear infections while an infant as well as fluid behind his ear drum that wouldn't go away. His doctor had prescribed him a continuous regimen of antibiotics to try to lessen the fluid, but of course that was useless and he had tubes put into both ears at 21 months old.
After he would eat, I often thought that I noticed my son’s tics would worsen. Sometimes, his tics would seem to be taking a break, but they would develop again after a meal or snack. After a while, I could pinpoint certain foods in particular that would cause him to tic. Anything made with milk (like cheese that he loved), sometimes made him repeat a “hmm, hmm, hmm” sound, sometimes so quietly that I had to be very close by to hear it. We took away milk and milk products from his diet for a while, and if perchance he ate any dairy by accident, he’d get a violent reaction, clucking and almost retching. Also, whenever he had a food or candy colored with artificial dyes, these also caused his tics to accelerate. Worse, he’d behave uncharacteristically antsy, literally unable to sit still, and would wander around after ingesting these dyes for hours. Bright lights also were a trigger for him, as was even a tiny amount of MSG.
When he was in 3rd grade we began to work with an MD here who practices holistic and orthomolecular medicine. She's also a DAN doctor. For a long time I gave him Bontech vitamins which seemed to help some. Through lab testing. we found that neither allergies nor heavy metals were causing him problems. Rather, he had a heavy overgrowth of both yeast and clostridia in his gut as well as other parasites (like Dientamoeba fragilis). The Microbial Organic Acid Test through Great Plains Lab was the check we used to see the levels of yeast and clostridia metabolites. Needless to say, he also didn't have enough good bacteria - all this was probably due to the excessive use of antibiotics. We tried large amounts of probiotics and also nystatin, but though we continued the probiotics neither of these helped reduce his tics or the metabolite levels. What did finally help him were a series of three different homeopathic drops by Pleomorphic that very gradually reduced his yeast overgrowth (they were Pleo Alb, Pleo Forte, and one other I've now forgotten) and oil of wild oregano that reduced the clostridia overgrowth. I was quite disbelieving that the homeopathic drops worked but they clearly did, because his tics gradually diminished as we verified that the yeast overgrowth kept getting reduced as shown through repeated Microbial OAT's by Great Plains. The oil of oregano was so strong that he couldn't abide it, so I put drops of it inside empty capsules that I got at the health food store. When the Microbial OAT results showed that he no longer had either yeast or clostridia overgrowth, his tics were at a very very low level and eventually they went away completely. By then he was in 5th grade.
He has just completed 10th grade and has not tic-ced since probably the beginning of 6th grade. He can now enjoy dairy again with no repercussions. Bright lights (fluorescent or other) no longer affect him. He sometimes has food or candy with food coloring and they also no longer bother him. I believe that it was the lack of balance of good bacteria and the overgrowth of yeast and clostridia that made him sensitive and caused him these issues. We don't have tourettes in our family history, but do have some ocd. This site was very helpful to me back when he had tics and I still come here at times to check on things. I'm glad to have the chance to contribute and hope this can help someone.
Phyl,
Could you tell me who was your son's DAN doctor? did she recommended the Great plains tests?
I'm starting to think that my son has the same problems.
Thank you!
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Hi Cheri,
How did you know your son had yeast overgrowth? did you do any Great plains test?
I'm suspecting my son has something, his tummy is kind of big (inflate, like the babies) and he is a skinny boy. Besides he has a lot of gas and complains of tummy ache.
I started with a good probiotic around 10 days ago, but he still takes antibiotic and he used to take a lot of antibiotic when he was a toddler.
Which type of doctor recommended all these supplements?Is it a nutritionist/allergist? how did you decided what things give your son?
Thanks!
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Thanks, I will try. If indeed he has got strep infection, how long does he need to take antibiotics to see any improvement?
To see improvement maybe 10 days, to be cured completely, who knows?
My son is already 30 days on abs, and still not 100%.
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hi,
What you said is exactly what I wanted to say. IT seems we have so many in common except my son is eight. My son's tics got suddenly worse from May and his nature has changed ever since. He becomes even more sensitive, fearful and constantly worried. Has your son made improvement so far?
He is doing better, he is on abs (already 30 days), we discovered high titers and strep in some members of our family.
I'm starting to suspect candida or yeast, I think the mayor improvement started to happen when I added pretty high doses of a good probiotic.
I think I'm going to do some of the tests that Great Plains offer.
We also trying to avoid artificial food/buying organic/ we do epson salts/multi vitamins/fish oil.
We removed the carpets from his room too.
From all these things I think(but it is hard to tell) what helped the most in this order: antibiotic, probiotic, taking out all stress, then the rest.
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When our dd 1st started azith. she was 44 pounds. She got 250mg/day Azith. (so about 12.5mg/kg). Advil also helped (200mg/day). After 5 days, we didn't notice much of a difference, except she was yelling at us a bit less. We almost didn't continue, but Diana P. encouraged us to keep at it. After 14 days, her OCD was much better (she said she wanted to get better and started eating again). By 6 weeks her tics/movements were gone. After 1-2 mo. she still had an "edginess" to her, but she was much much better 80-90%.
EAmom, when you say "she is 80-90% better", do you still continue to give her antibiotics? I am in that state right now, my son is also ~80 better, and I'm not sure if I should continue or start giving him the prophylactic dose (twice a week). For how long we need to continue giving them the abs?
In one hand i don't want to stop in the other, I know that giving abs for so long it is not a good thing.
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My DS8 is on Azithromycin for 1 month, and we saw a great improvement, I can say he is 85%.
But he is around 85% for 1 week, and I don't see that he continues to improve.
For how long he should get the abs if we don't see real improvement anymore?
Are there other alternatives other that IVIG?
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It is really confusing to try to understand the azithromycin packaging for young children. It has three different amounts to give based on the illness, such as for one illness give 10 mg per kg etc. My son finally started on azithromycin, but it is already two months after all of his things started happening after illness after illness. Should I see any difference with him on a 5 day course of azithromycin at 7.5 mg per day or around 1 1/2 tsp? How old was your son when he started taking it, and how long did it take for you to see any difference? YOu said to the other mom to try azithromycin if she doesn't make headway after 6 weeks of augmentin. Does it take that long? What typically happens? I think in an earilier post you said that you saw a difference after 10 days. Did he stay on it after that?
I'm sorry...I am working at learning how to navigate around all these posts and remember who posted what information. I'm still a newbie!
My son took 10 days of Augmentin and now he is on his 20th day of azithromycin, we started seeing improvement after 15 days.
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My pediatrician said that my son needs to do the the TB (tuberculosis) skin test. Now that my son has pandas and I heard that vaccines might aggravate the situation, I'm afraid of doing that.
Any input? is it safe? does any one did it for your PANDAS kids?
Thank you!
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hi,
I am so glad that you son is doing well. I hope it will happen to my son as well. I will do the blood test as you suggested. By the way what antibiotics are your son taking? How long has he supposed to take it? Thanks.
He took Augmentin (high dose, I think 1800mg a day) for 10 days.
Then the Dr. switched to Azitromach (I don't know how to spell that).
But it depends of what type of infection they find, some abs are better for strep and some are better for other infections.You need to consult a doctor.
Total, looks like he will taking the regular dose for 1 month (ending in 5 days), and if he continues to improve, switch to a prophylactic dose (twice a week) for prevention.
Who has seen Dr. Nancy Mullan in Burbank Ca
in PANS / PANDAS (Lyme included)
Posted
Did you see Dr Mullan? I would like to know your opinion, I'm trying to find a PANDAS Dr That is open to a natural approach too.