Mayzoo
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Posts posted by Mayzoo
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I used a product called "Thum" (My link) to help kiddo stop biting her nails during her worst flare. She had never bit her nails before, nor since. It is a clear liquid you would put on the fingers he uses (or all of them) and it tastes bitter. Since he seems to want to stop, maybe he would allow its usage.
As for the teeth, we have always brushed kiddos for her first (despite her being 10 now), then let her brush afterwards. She does not do a good job alone, and I feel it is too important to just let her do alone (no cavities yet). When she decided she no longer wanted her teeth brushed at all during her bad flare, I told her I would not read a book at bedtime if she did not allow me to brush her teeth. When she refused, I would just say "okay then, no reading tonight" without making a huge deal about it. It took about a week, but she reluctantly started letting me brush them again. Kiddo is verbally and developmentally delayed, so she could not tell me why she did not want them brushed, but I suspect it may actually have hurt at that time, so I was all the more gentle then.
Good luck.
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Free program for kiddos and adult with working memory issues and/or ADD. I have downloaded it, but not tried using yet. As I try it, I will let you know how it goes for kiddo with impulse/ADD issues and myself with a minor TBI leaving me with minor long-term and short/term memory loss and focus issues.
Website Excerpt:
"Brain Workshop is a free open-source version of the dual n-back brain training exercise.
What if a simple mental exercise could improve your memory and intelligence?
Brain Workshop screenshot
A recent study published in PNAS, an important scientific journal, shows that a memory task called dual n-back improves working memory (short term memory) and fluid intelligence. These findings are important because fluid intelligence was previously thought to be unchangeable.
Those findings have since been replicated twice with strongly positive results, and two more times in smaller studies with weaker, but still positive, results.
Brain Workshop implements this dual n-back task, and enables you to improve your working memory and fluid intelligence."
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Oh, sorry to ask a silly question; but what is "HD IVIg"?
Thanks for indulging me~
HD= High Dose
IVIG= Intravenous immunoglobulin
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Does dad still have his tonsils? Maybe strep is hiding in there if he does?
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Just like SSRIs, I would suspect this is child specific, not condition specific. It may work well for some kids and not at all well for others.
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Since the psychologist cannot prescribe meds or tests, maybe a compromise would work (depends on the age of your kiddo)? See the psychologist for your daughter to talk to and get advice from, but see the psychiatrist just for the meds and tests. It would likely not be twice the amount of visits, but it may a few more than if you just went to the psychiatrist; however, if DD will not allow psychiatrist to help her, all those visits will be a waste or detrimental. Psychologists and psychs frequently work together anyway. Have the two docs communicate with each other well if possible, and you can cart records back and forth as needed. This way your child feels that they have a say in their care and you may get the best of both worlds this way.
Oh, and if you really want to stick just with the psychiatrist, maybe the psychologist (in the best interest of the patient) would recommend she see the psychiatrist and hopefully she would be less resistant.
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We started on 12.5mg Zoloft and doc asked me to increase it in two weeks (or was it one??). I reminded them that the medication did not take full effect for 6 weeks and I would not increase it until we saw what a base line was at that time. The higher the dose, the more likely side effects are. We ended up staying on 12.5mg for the last 6 months. DD was/is in the 55lb range. No real side effects that I can tell, but my kiddo is expressively delayed.
Now I am off to find out how much Doxycycline to put in my fish tank.....when it rains it pours---my fish are now sick too (not strep at least HAHA).
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Thanks for all your replies. Children who are asthmatic cannot take the mist, so we would be looking at the live virus. I look forward to hearing more followup from Hopeny. We do not see any of the major PANDAS specialists, so it is good of you to share what their view have been. Does Dr. Swedo have a recommendation one way or another? Again thanks for giving me so much to consider.
The injection is the "killed" virus. The mist is the live virus. Good luck.
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I have known you for several years and across two or three web boards. I know you have helped a lot of people and have been a great resource/support for many.
Guardianship sounds like rough paperwork. Try to look at this clinically and remove all emotion from the procedure. Your goal is not to allow the reader to get to know the whole Allie, you are only letting them understand the reasons why she is unable to independently care for herself. In doing this, you are doing what is both necessary and in Allie's best interest. This has nothing to do with how wonderful Allie is as a person or how much you love her, it has to with the logistics of her care only.
If her doc made the policy, it is her doc who can make an exception to the policy if he so wishes. Some pedis see folks until they are 21. He was an MD first then got his specialty, so there is no real reason he cannot continue to see her if he wishes. Otherwise, see if you can get a phone conference or web conference with you, him and a new doc he recommends in an effort to get the new doc on board with Allie's basic care (after new doc gets and reviews her records).
If you think there is any thing I can do to help ie just listen, web research, etc... feel free to let me know.
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Flumist is the "live" vaccine, and the injection is the "killed version" My link. I am not sure if that matters in your decision or not. I suspect even the "killed version" can cause a flair in some.
Hubby and I never seem to get the flu, and so far I can tell kiddo has never had it either so far, so none of us get vaccinated. We do home school, so that reduces our risks as well.
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I will try to update on here if/when I see results in case anyone is interested. It may take a few weeks to see any results, or of course, I may never see any results.
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Somewhat unrelated to PANDAS, but has anyone tried the homeopathic med BrightSpark (My link)?
Kiddo also has autism and has always had some degree of impulse control issues. Since PANDAS, they are much, much worse. She cannot seem to control herself even for 5-10 minutes of anything but watching a movie or playing nintendo. If her mind is not completely preoccupied, she has very little self control.
My best friend's 13 year old told me lately that this remedy helps her focus quite a bit, so I am going to try it, but was curious if anyone here knows anything about it?
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DD just turned 10.
Started Zoloft 12.5 for 7 days then increased to 25 for last 12 days.
For 1 week now her ANXIETY and PANIC and OCD fear of dying is nonstop, unrelenting, causing her to curl up in a ball and cry, whether at home or out in public!!
It can last for hours and hours and hours...(you know)
SO is this what can happen to kids on SSRI's???
I've read that our kids can not tolerate SSRIs -- is this why??
Dr T also said to watch for hyperness, mania and increased anxiety...
Just when I think she can't possibly have any more INCREASED anxiety....
I will call her Psych on Monday, until then I will hold her doses (I guess???)
Kiddos doc wanted to increase her Zoloft after 10 days, and I reminded them that it does not reach peak effectiveness for 6 weeks, so I was going to wait until then to see where we were at that point. The higher the dose, the more likelihood of the side effects. She is doing pretty well on just the 12.5mg.
Why so many docs want to increase the dosage prior to seeing if a low dosage will work is beyond me. When I questioned kiddos doc, they said since it takes so long to reach peak, they increase it so parents feel like the doc and they are doing "something" to try to help until the meds can actually kick in rather than feeling "helpless." I have no idea why other docs do this.
Sadly, most meds can create an exacerbation of symptoms they are trying to treat as a side effect.
Zoloft side effects (just a few):
"agitation, hallucinations, fever, overactive reflexes, tremors;"
"sleep problems (insomnia); or"
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http://tinypic.com/r/15qyd5e/6
It appears that maybe the butterfly is for the adult version and an owl is for the kids version. I tried to post the pic, but not sure it will show or not.
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Apparently there is an adult version as well. There is a video on this link near the bottom.
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My only real concern with this is strep is killed in the stomach by the higher acid level. Reduce the acid level and the strep is not killed as efficiently which may lead to a strep infection.
I will have to find the article for this later.
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Here is a link I found, hopefully it is the one you are looking for (but only speaks of two levels):
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I can pm you some of the information Deb gave me.
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Have you checked his titers yet? He may not even "need" to be vaccinated as his titers may be high enough. My rubella titers were through the roof during my pregnancy and I had not been vaccinated in over 20 years.
Because we home school and kiddos medical issues, we have been very selective on vaccines.
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Amphotericin:
Amphotericin B is fungistatic or fungicidal depending on the concentration obtained in body fluids and the susceptibility of the fungus. The drug acts by binding to sterols in the cell membrane of susceptible fungi with a resultant change in membrane permeability allowing leakage of intracellular components.
Nystatin:
Nystatin is an antimycotic polyene antibiotic obtained from Streptomyces noursei. Its structural formula. Nystatin is both fungistatic and fungicidal in vitro against a wide variety of yeasts and yeast–like fungi. Candida albicans demonstrates no significant resistance to nystatin in vitro on repeated subculture in increasing levels of nystatin; other Candida species become quite resistant. Generally, resistance does not develop in vivo. Nystatin acts by binding to sterols in the cell membrane of susceptible Candida species with a resultant change in membrane permeability allowing leakage of intracellular components. Nystatin exhibits no appreciable activity against bacteria, protozoa, or viruses.
Diflucan:
Fluconazole is a highly selective inhibitor of fungal cytochrome P450 dependent enzyme lanosterol 14-α-demethylase. This enzyme functions to convert lanosterol to ergosterol. The subsequent loss of normal sterols correlates with the accumulation of 14-α-methyl sterols in fungi and may be responsible for the fungistatic activity of fluconazole. Mammalian cell demethylation is much less sensitive to fluconazole inhibition.
All similar, but slightly different. If you have a more specific condition or question, maybe I can answer more clearly.
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An outer ear infection, they should be able to see signs of it. An inner ear infection, the only possible sign to be seen is a bulging ear drum. The only test that comes to mind would be a CBC checking for elevated white cells.
Ear pain coupled with out of control asthma makes it sound to me like it also could be allergies--yes allergies definitely can make asthma out of control. Allergies cause increased fluid in the ear canal pushing on the ear drum causing pain. They can even lead to reduced hearing or deafness in one or both ears. Check with your doc about what antihistamine he might recommend, and try it for a few weeks to see if your ear feels any better. Warm olive oil frequently works short term for the pain and ibuprofen might help as well.
My kiddo exhibited signs of an ear infection for months when she was pre-verbal. Pulling on the ear, rubbing her ear, etc.... I tried to get it across to her pedi over several visits that she had a problem with that ear. They looked in her ear and dismissed my concerns for months. I took her to an ENT specialist, he took one look in her ear, wanted to run a test that indicated ability of the ear drum to move freely as it should (required to hear sound), and told me that if the pedi considered her being completely deaf in that ear not a problem, then she did not have a problem. He prescribed an antihistamine for 30 days and on the recheck she had normal movement and appeared to have normal hearing again as well as all the symptoms resolved. We kept her on the antihistamine for a few years as it helped with her mild asthma as well. Had I not taken her to the specialist against my pedis wishes, hearing in that ear could have been permanently damaged.
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I realize it was a true story- perhaps my dislike for it was the child suffered horribly for years
(close to home)
Then, and it's been a while now, so this is the impression I am remembering, it was like:
Poof! He turns 18 or something, realizes he can control this somehow, or he somehow grew out of it.
I didn't find that story a good example, KWIM?
JMO.
Yeah, kiddo has a neuro who is convinced everything that is wrong her is all in her head or bad parenting....so I KWYM. IE...kiddo has a condition (Chiari) that something like 96% of patients with Chiari suffer with headaches. Kiddo has headaches. This neuro says *if* she has headaches they are unrelated to her Chiari
. She is not only in the 4% that does not have Chiari headaches, she is in the infinitesimal percentage that has unrelated headaches . It grates on me badly so we are going to have to replace him. We have not even broached the PANDAS aspect. We started trying to figure out what was up with her by seeing him. He decided she had horrendous nightmares 4-5 times a night and stopped talking for 3 months (among her pages of other sx) for the attention *head smack*.I may still get the book, but thanks for the heads up.
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Thanks, LLM! I might like some of the colorful ones myself for my run-around-town tennies!
My DS, too, grew up wearing velcro shoes, and now because he has a wide toe box and narrow heel, he finds Merrills or Keens to be the most comfortable. But sometimes even those brands come only with tie laces. But with DS being hard to fit, it was getting to be a hard choice to make.
We found these bungee-style laces a few years back; used to have to order them off the web, but now I've seen them in places like ######'s Sporting Goods and Target. They work well, even for "dressier," dark-colored shoes, and they're adjustable so as the shoes get worn and stretched out, he can tighten up the laces to keep 'em comfortable. So now we just buy DS whatever feels good, confident that I can change out the laces without a problem.
I just bought two pairs of these. A set for kiddo and a set for myself (and hubby will want them too when he sees them
). At least in my opinion, with everything else we all deal with, mastering tying shoes seems so trivial and a wasted battle. Especially since I have ruined uncounted amounts of socks slipping my tied shoes on and I mastered tying them decades ago, I just don't untie and tie them . -
I'm a fan of some James Patterson fiction books, so I read this one awhile back.
I did not care for it, and I'll tell you why-
the boy 'just seemed to grow out of it'
'mind over matter, and it was fixed'
This was my impression.
Not realistic, IMO.
I have considered this book for some time. I may go with the kindle version as I do not seem to have the time anymore and I misplace books now days. It is supposed to be a true story, not fiction. Not sure how true to the actual story they were, but still non-fiction none the less.
. She is not only in the 4% that does not have Chiari headaches, she is in the infinitesimal percentage that has unrelated headaches 
. It grates on me badly so we are going to have to replace him. We have not even broached the PANDAS aspect. We started trying to figure out what was up with her by seeing him. He decided she had horrendous nightmares 4-5 times a night and stopped talking for 3 months (among her pages of other sx) for the attention *head smack*.
). At least in my opinion, with everything else we all deal with, mastering tying shoes seems so trivial and a wasted battle. Especially since I have ruined uncounted amounts of socks slipping my tied shoes on and I mastered tying them decades ago, I just don't untie and tie them 
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Questions about yeast
in PANS / PANDAS (Lyme included)
Posted · Edited by Mayzoo
I do not know anything about Syntol, sorry. I do know we just reintroduced probiotics to kiddo after a almost 6 months off and for almost 10 days she had a definite increase in pandas behaviours, which I assumed meant that it was working. The verbal tics would peak about three to four hours after her dose, then abate a little for the rest the day.
She is back to stable if not a bit improved now and her sleep cycle is better. This is the one we use My link