Kayanne
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Posts posted by Kayanne
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Here's the second part to the article,
He lists cases that he has been involved with.
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We've been at it for more than 2 years and things aren't perfect . . . yet. But they are night and day away from where he was at his worst 2 years ago, and he continues to make small but measurable gains, almost on a daily basis. Most importantly, though, today he's HAPPY again, and so DH and I are happy again. And relieved, and grateful, and cautiously optimistic, and knocking on wood with nearly every breath.
MomWithOCDSon, You've hit the nail on the head here. In eclairuse's thread, the intention of the parents who posted was to stress the importance of early treatment in order to relieve the family's suffering SOONER. If you know about PANDAS very early on, then it has been my experience (and others) that relief can can come as early as the end of a 10 day course of antibiotics or a month of prednisone. Sadly, for those children who go a long time without a PANDAS (or even Lyme) diagnosis, the recovery is longer and more involved.
Elijomom, this is what was being put forth in the other thread. I'm sure no one who has posted on that thread feels that giving up is what you should do.
Obviously, this is all my conjecture from my experience with Dr. L -- but I just want to say that she believes that PANDAS is an AUTOIMMUNE disorder, triggered by infection. If there is no evidence of ACTIVE infection, she is not going to prescribe full-strength antibiotics. She told me this is "immune-mediated". It, therefore, makes sense that she will want to move on to immune therapies.
Her first line of treatment is steroids. The first time she prescribed them to my daughter (and only 100mg of azith daily) she told us that if we don't see significant improvement by the end of the month, then we would need to consider moving on to the other heavier treatment such as PEX or IVIG. Now, this is just an assumption of mine, but I would venture to say that she tries everyone at steroids first. She's just not going to skip an important step in a treatment protocol. One that is cheap, and has a relatively good chance of actually being the only treatment needed. I think this protocol makes MUCH more sense than a doctor who will diagnose a child as having PANDAS, and insist that they go right into IVIG. Using, a cheaper less invasive treatment approach is acceptable in all kinds of diseases and disorders, why should PANDAS be a IVIG/PEX "only" treatment protocol?
I'm curious if there is anyone who can report that she didn't try steroids first, but moved them right into the heavier treatments?
I also want to point out that I think Momofgirls had an excellent observation, about your daughter's negative reaction to Augmentin possibly being Lyme.
(((hugs))) and prayers
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Philamom - I agree with you. My line of thinking was for pure pandas cases only. And you are right, every case may be different. That is why I think a study should be done. Co-infections, Lyme disease - that complicates everything in terms of steroid use.
But I don't understand how you can figure out who is a pure pandas case! -- until there is a test, I guess. (I'm not talking lyme,mycoplasma,exc) So many don't have positive throat cultures or rise in aso/dnase, so do you go by clinical picture? But then my daughter was coined "classic pandas" by her clinical picture before we found lyme. You can't go by Cunningham's labs -- my daughter was elevated in every marker.
Not starting an argument - just thinking out loud. :-)
Philamom, you are right that PANDAS is just a clinical diagnosis right now. The thing that really stinks, is that it can also look like so many other things so the likely hood of being misdiagnosed is really good...probably depending on what specialist you see, and what they are most familiar with treating.
The only thing that makes me say my daughter is a pure PANDAS case is hindsight. Every one of us takes a leap of faith when we follow a doctor's orders, it's only when we see success, can we be sure we've done the right thing. If my daughter was still struggling, I would turn over every rock to see how I could help her.
Eljomom, you have peeked under the known rocks, and are struggling to decide which rock to actually turn over. From reading your posts, may I humbly make a suggestion?...Turn over the rock that has the least potential side effects, since that seems to be your main concern. IMHO, that would be to pursue and rule in/out Lyme. What is going to happen, if you see an LLMD? I'm not really sure because I know very little about Lyme, but my guess would be more tests, and antibiotics and some supplements. That course of action sounds rather benign to me (but I could be completely way off on this). If you are concerned about being taken advantage of, then perhaps another lab? I think MDL is a well respected lab.
If you don't see improvement with Lyme treatment, than you can add that to your hindsight.
((hugs))
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((hugs)) I'm sorry that you are seeing these side effects. If you don't mind, I'm wondering what your son's dose was (and his weight)...since your doctor seemed to think it was high?
Thank you...sending prayers your way.
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yes, yes, of course....steroids only under the direction of a doctor. I would consult with my boys PANDAS doc before giving my son(s) a steroid burst out of my "stash"
...their weight has dramatically changed since the last time we needed to do steroids and I know the dosage would be different. I don't mess with that. I didn't mean to imply to anyone that I give steroids ramdomly at will. (if I did...sorry) I have actually only given my younger son 2, 5 day bursts in over 4 years....older son never got any steroids. Now, I will be honest and admit that I do up my boys abs from 250 mg once a day to either 250 mg twice a day, or, 500 mg twice a day, (for about 5 days) on my own, if I see a concerning sudden increase....which usually means strep is somewhere. This has worked for us. Is it smart to do without a doctors approval? Heck, I don't know......but sometimes I feel I know what my boys need better than anyone.......and I don't feel an increase in abs is dangerous.Anyway...Elijomom.....we do just want the best for you and your girl!!
PMom, no, you didn't imply that at all...I was just trying to express that I think steroids are serious medications, yet that alone shouldn't preclude them from being a valid treatment for PANDAS.
LOL...I've had pred in my medicine cabinet too. Boy was I tempted to try it on my son, who I think is really mild...but I figured, if he isn't symptomatic enough to make an appointment with our neurologist, then he isn't bad enough to try the steroids.
Elijomom....(((hugs))) This is just so crappy all around. You're entitled to be cranky sometimes.
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I just wanted to say that I agree with DCMom and PMom's posts, they've articulated things very well.
Also, I wanted to just put steroids in a bit of a perspective. Remember, steroids are not some controversial drug that is only being used in the PANDAS community. They have been in use since the 1950's. Ask your pediatrician, any other numerous specialists (allergist/immunologists, ER, rheumatologists and neurologists) how often they prescribe it, and what are the side effects for a short term use - which a month is considered short term.
I, too, believe that steroids are serious medications, and it should ONLY be given under the direction of a doctor. But I have spoken to all of the specialists above and none of them seemed concerned about 1-2 times a year taper.
Obviously, EVERY drug/supplement/treatment has potential side effects. It is hard to weigh the risks vs. benefits, but that is what needs to be done. If you are not comfortable with the risks, accepting where you are at is important in moving forward with your life. Whatever direction you go is up to you and your husband.
I wish you the best of luck.
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Never happened here. My son never had a 'rebound effect'......only improvement. And he never got worse after steroids...nor have his symptoms ever returned to the degree they were before the burst.
The same for my daughter. She needed the second burst because of strep exposure. Again, we had long-term results.
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We gave my daughter Pen vk from Aug '09 to February '09. It was 200 mg twice a day, she was 6 yrs old and her weight was between 45-50 lbs. She had some strep exposure in school throughout the fall of '09 with no PANDAS exacerbation, but when my other 3 children tested positive for strep she continued to test negative on the rapids and culture even though her symptoms came back. She was just about 50 lbs, and (I think-going strictly by memory) we were going to ask for a dosage increase by the time she hit 50 lbs...but her reluctance to eat caused her to lose about 3 lbs in 2 weeks.
Based on symptoms alone, my pediatrician gave us Omnicef 150mg 2x/day, and we saw improvement. Dr. L prescribed a month of prednisolone and continued on the same dose of Omnicef. August of '10, we dropped her to 150mg Omnicef daily as a prophylaxis, and that has prevented another exacerbation. I would say, though, that we can hoover between 99%-100% without OCD....depending on school exposure, allergies and stress. Frankly, having sub-clinical OCD is negligible--my husband & his family, have tendencies toward OCD anyway...so it's our normal.
We didn't go back to Pen vk as a prophylaxis for 2 reasons...we did try a week of amoxicillin in March '10 when we saw Dr. L, but my daughter broke out in a rash (she had one a year before in '09 too). So every doctor I have spoken to since said that the penicillin's are not an option for her because of a possible allergy, secondly, I felt that if it didn't protect her when strep came into our home, it was a failure. So I am happy to have her on a different class of antibiotic.
Penicillin is a narrow spectrum antibiotic, so essentially, you have minimal risks against your gut flora, but I think probiotics should be given with all antibiotics anyway.
For my daughter, the difference is so stark that I feel obligated to protect her from strep, and as long as a doctor will prescribe them, I will give her antibiotic prophylaxis.
I also have an uncle who took penicillin for over 20 years because he had rheumatic fever as a child. He told me he never had any side effects from the penicillin.
Good Luck.
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The disadvantage to liquid abx is that you have to go to the pharmacy more often to get refills, as they generally only last 10 days before they start to break down.
I use a locally owned pharmacy, and they give me 3 bottles of dry antibiotics and 3 bottles of distilled water. I mix them every 10 days at home and only need to go to the pharmacy once a month.
My daughter is 8 and can swallow small pills, but we give her the liquid mostly because it's easier to get the correct dosage with the liquid.
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150mg of Omnicef daily as a prophylaxis.
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I believe my boys peed at night because of mild PANDAS...it seemed to last off and on for months after we had strep.
I just deal with tons of laundry...but as far as the mattresses go they still look brand new. We put vinyl fitted sheets, and then a mattress pad so it doesn't feel too much like sleeping on plastic, then the regular fitted sheet.
Here is a zippered one:
http://www.target.com/p/Vinyl-Zippered-White-Mattress-Cover/-/A-10107583
I have ones that are just like fitted sheets.
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First taper: (she was 6yrs old and weighed about 42-43lbs)
Day one—20mg
Week one—10mg 2X/day
Week two—5mg 2X/day
Week three—5mg 1X/day
Week four—5mg 1X/day
Second taper: (she was 7yrs old and weighed about 47lbs)
Week 1- 15mg 2x/day
Week 2- 15mg 1x/day
Week 3- 7.5 mg 1x/day
Weeks 4 & 5 - 7.5 mg every other day
I would say that she was definitely more angry the first 2 weeks during the bursts. I was happy to see her put on the weight because she had lost quite a bit from her reluctance to eat. The first burst was actually extended by 2 weeks to a total of 6 weeks, and she did get a pimple and fuller cheeks that didn't return to normal for a couple of months.
There were no obvious physical side effects from the second burst....other than her recovery to 110%.
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Hi ZJsmom,
I'm very sorry that your family is suffering right now.
I just wanted to add that my daughter, too, stopped speaking because of OCD. What brought her back to us was a month of prednisone prescribed by the same neurologist that TMom mentioned.
We've never tested or pursued lyme, so I have no advice in that area.
Also, feel free to pm me.
Best of luck.
~Karen
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When my daughter's corners of her mouth get cracked, I assume it is mild thrush. She mostly had it when she took azith 2 years ago. I buy plain, unsweetened yogurt and after she brushes her teeth at night she swishes that around her mouth, and we put some around her lips too. She then goes to bed without rinsing it.
I've had the same thing happen to me when I was on azith, and the yogurt did the trick for me too.
I do want to add that some antibiotics can deplete vitamins, so IMHO, it is a good idea to supplement with a multi-vitamin anyway
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My MIL was told years ago to make ear drops from equal parts of vinegar, alcohol, and water--then add a couple drops to each ear after they swim. It readjusts the ph of the outer ear canal. Swimmers ear stopped being a problem after she started that. But this is just a preventative measure, I don't think it will make a lot of difference with an active infection.
Good Luck, I hope your daughter feels better soon.
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I have no idea if this would be helpful, but my sister works for a doctor who often prescribes Levaquin for mypoplasma.
You'll have to google it if you want more information because I think there can be side effects.
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I'm sorry you are going through this! I wish I had more to offer...
((hugs))
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Is this a spinal tap that is needed. If the treatment is similar to the PANDAS, why do we need 2 test 4 it????
To be sure you are treating your child for the right thing.
TwinCitiesMom,
No, I am not pursuing NMDA. My daughter is 100%.
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Can Ingenix do this test?
No. I think the only lab that is testing for this is at the University of Penn, and it is a spinal so it can't just be done at any lab.
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I don't know a lot about it, but this type of autoimmunity has been posted here a few times. I believe the test is a lumbar puncture that tests for the auto-antibodies. IMHO, it is certainly worth considering getting done because the treatments are very similar to PANDAS and if you get a NMDA-receptor encephalitis diagnosis insurance covers it.
Here are some other threads:
http://www.latitudes.org/forums/index.php?showtopic=8301&st=0&p=68425&hl=nmda&fromsearch=1entry68425
http://www.latitudes.org/forums/index.php?showtopic=7617&st=0&p=61949&hl=nmda&fromsearch=1entry61949
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I have only taken my daughter to Dr. Latimer. I would highly recommend her.
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Someone once posted something that said that the anesthesia can open the Blood Brain Barrier.
I know when I got both of my daughter's tonsils removed, I had to request a culture. I also requested IV antibiotics during the procedure--our doctor didn't do this as a standard protocol, but he agreed because I was concerned about strep being released into the system. He did it for both girls.
Non-PANDAS daughter's tonsils and adenoids were enlarged, and hers were positive for haemophilus influenzae. PANDAS daughter's tonsils looked beautiful and didn't culture positive for anything. She had been on full-strength Omnicef for about 3 months before the procedure, and continued on that for approx another 3 months before we dropped her to 150mg daily.
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I consider the prednisone to be what we really used to treat my daughter's PANDAS symptoms. She has only been prescribed full strength antibiotics if she had positive strep or suspected strep (false negative due to pen vk and her siblings had strep).
Although she was kept on full strength Omnicef for 6 mos after her 2nd exacerbation, I don't consider that to be what put her in remission. We kept her on that for various reasons, we weren't sure where the strep was because she didn't test positive, she was getting her tonsils out during that time, and it was difficult to follow up with her PANDAS doctor at the time so we kept her on what was prescribed.
My daughter has been on 150mg (half of her treatment dose) of Omnicef since August, and I would say so far it has been successful at keeping the strep away, and preventing any significant "strep flare" just due to exposure. Sometimes, we do see some very, very mild increases in her anxiety and OCD, but it hasn't been enough for us to feel that she needs to increase antibiotics or take pred. I usually just get more consistent with her vitamins, fish oil, probiotics, and sleep. Sometimes, I have also given her approx 250mg of L-tryptophan at night. I've also used the "motrin protocol" a few times with some improvements.
I don't believe my daughter's PANDAS was mild, it's just that we were so fortunate to have our pediatrician suspect it right away (and be aggressive about positive strep), and then be in front of Dr. L within a month of even learning about it.
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We saw some bad days during the second week (dosage being halved) too. I would say it's better to gauge improvements in weekly increments, and not get discouraged if a bad day happens. Being more emotional and irritable were definitely side effects of the pred for my daughter too. This was mostly in the first week, but in the second and third weeks we did still see some of this break through.
...their weight has dramatically changed since the last time we needed to do steroids and I know the dosage would be different. I don't mess with that. I didn't mean to imply to anyone that I give steroids ramdomly at will. (if I did...sorry) I have actually only given my younger son 2, 5 day bursts in over 4 years....older son never got any steroids. Now, I will be honest and admit that I do up my boys abs from 250 mg once a day to either 250 mg twice a day, or, 500 mg twice a day, (for about 5 days) on my own, if I see a concerning sudden increase....which usually means strep is somewhere. This has worked for us. Is it smart to do without a doctors approval? Heck, I don't know......but sometimes I feel I know what my boys need better than anyone.......and I don't feel an increase in abs is dangerous.
TONSIL REMOVAL?
in PANS / PANDAS (Lyme included)
Posted · Edited by Kayanne
T.Mom,
I wanted to answer your question. I had both of my girl's tonsils removed in Jun 2010. Only one is diagnosed as PANDAS. I pursued it on our PANDAS doctor's recommendation.
At our first appointment with the PANDAS doc, she told us that the tonsil removal was not a bad idea, but not something we should actively pursue. However, if she gets better and then has another episode, then you should seriously consider it.
My daughter's second episode started when my other 3 children were positive for strep, but she was on pen vk and kept testing negative, but PANDAS symptoms returned.
Our PANDAS doctor surmised that the strep could just be really deep in the tonsils where (a) the swab can't reach it, and ( b ) the penicillin is not effective in reaching it deep in the tonsil tissue. She also observed enlarged tonsils in my other daughter.
We lucked out and found a local ENT (who is a D.O.--I just think that is key) who didn't bat an eyelash when I said I wanted her tonsils out because of PANDAS. He was supportive of that course of action. I even asked him if it is enough reason to remove the sibling's tonsils to decrease strep exposure to her, and he thought so.
PANDAS daughter's tonsils looked small on exam, were small, normal and didn't culture positive for anything. She was out of her exacerbation for approx 3 mos when we had it done, and was on continuously full-strength omnicef. We dropped her omnicef to 1/2 dose prophylaxis about 6 weeks later.
Both girls had IV antibiotics during the procedure (thanks to DCMom's advice), and the ENT just told me to continue the Omnicef for PANDAS daughter, and prescribed Bactrim (I think) for a week for my other daughter.
Non-PANDAS daughter (has very, very mild emotional lability, and some panic issues) her tonsils and adenoids were enlarged and they cultured postive for Haemophilus influenzae.
It would appear that my decision to remove my PANDAS daughter's tonsils was overkill, but I don't regret it one bit. She has not had a PANDAS exacerbation after the surgery, she has had some strep exposure in school, but the most PANDAS symptoms we have seen return during last school year are so negligible...If I knew nothing about PANDAS, they wouldn't even raise a red flag for me.
My son has had strep 5 times (twice on the skin) and my other son twice. I was also told by our PANDAS doctor that if my son has one more infection, to pursue getting his removed too...he has had some minor behavior issues, bed wetting, and poor fine motor skills off and on for a long time--just not enough to pull the PANDAS trigger yet.
I am of the mindset that I will probably pursue getting my boy's tonsils removed if we hit any more rocky spots (more infection etc..). If we continue on the path we are on right now (all of my kids doing so well)...then I won't look into it.