Mayzoo
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Posts posted by Mayzoo
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We've looked into the K12 virtual schools for our son as a back up plan if we've ever had to homeschool. Here is the link to some of their options in PA - looks like they have a couple of online charter schools that are tuition fre
I have recently heard (this is only a rumor right now since I have not had time to look) that the K-12 program teaches creationism and nothing about evolution. This is something to look into for all curriculum depending on your wishes as to what you want taught. Each parent has to decide what teaching philosophy they want to have their child exposed to prior to enrolling in any curriculum.
Here is a link to a book I have used in the past and I like the format of it:
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Here is a PDF form analyzing the home school laws of Pennsylvania:
Pennsylvania Basic Home school laws
Some sites state you should not tell the school that you are going to home school when you remove her, but based on some of what I read on the PDF form, it appears you will likely need to at least inform the superintendent.
I will post links as I find them. Just wanted to get this one to you so you have a good starting point.
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Sorry, I fixed the link.
I am very sorry to hear DD is in a bad spot. I will do some quick research and post here in a little bit what I find.
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I may be able to help a little depending on what state you are in. Each state has requirements on how to remove a child from public school and each state has its own requirements for documentation etc for you home schooling her. If you want to pm your state, I can see if I can help with this. I can Google lots of different things to aid you. Here is a start of free online 5th grade curriculum:
We home school kiddo, BUT she has always been home schooled, so no school paperwork needed. Also, my kiddo has numerous learning issues, so we teach mainly reading, writing, natural sciences, life skills math, only relevant history, and government. We do not use a traditional curriculum because kiddo does not learn traditionally at all.
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My kiddo has them infrequently and since she was maybe 9-12 months old as far as I can tell. She used to bang her head which I attributed to headaches after we got the Arnold Chiari Malformation 1 diagnosis and then she became verbal and complained of headaches. So far as I know, the headaches are related to her ACM so unlikely that is what you are dealing with.
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It happens. Medically speaking (UTI), she should not be noticeably off track for healing with just one missed dose. Of course, PANDAS is a whole 'nother subject, but she will rebound.
Now, for the humor part of life.............look on the bright side of this..............if you were perfect, no one could stand to be around you
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This is one of the four ingredients in BrightSpark. I tried to find Hyoscyamus Niger by itself but did not have great luck in that. I just started giving kiddo BrightSpark for her impulse control issues (compulsive touching of everything and getting into everything). I have not seen a great improvement in that yet, but I do believe her focus is a bit better for her school work. I have not seen any negatives yet, but I am watching closely.
imcatim, thank you for your story. That is encouraging even though kiddo only has a an occasional vocal tic.
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NOTHING helps soothes my kiddo. No reward, no bribe, no talk, no rationale, no logic----nothing. We find it is best to simply have hubby, I and one aid restrain her in my lap with our hands, get the blood draw over with as fast as possible, then celebrate after the fact with maybe a small toy or a meal out. As soon as we drive up near Quest labs, the begging to go home begins and the screaming begins right before we are lead back and it simply breaks my heart as she has already been through sooooooo much in her little life, but she does understand that sometimes the docs need to see what is in her blood--that is until we need to draw blood she understands.
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We are using Minocycline 75mg twice a day right now. I am hoping to go down to 50mg twice a day soon (kiddo weighs 58lb).
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Hi folks
Just wondering if anyone has or is using any anxiety meds with their kids. My dd (6 next week) has PANDAS. We have had a pretty challenging summer. Right now she is on azithromycin , Cipro , Lamisil, probiotics, & Claritan. We are 6 days into the new school year and it is exhausting us. She is now in full day Kindergarten which she seems to love. However since late June when she came down with some kind of tummy bug we seem to be fighting to keep our heads above water. Dd has been battling OCD, resurfacing of facial/ head tics, and extreme anxiety. For example she woke up the other morning, crawled under our bed, cried, and said she wasn't going to school because she doesn't want to go to gym. It took lots of tricks on my part to get her out from under the bed,eat, and go to school. We emailed the teacher and contacted the school counselor to give them a heads up. We have several incidences like this one. Just spoke to my Ped. who said she would probably benefit from anti- anxiety meds.
Anyone else using medications to take the edge off the crushing anxiety? So heart breaking to watch your child fight this sickness! Looking for some wisdom .....
Teri
Same doc is prescribing the meds and not sure if liver function has been tested although she had bloodwork (lots of it) at our last appt.
Forgot to mention that dd has been on Cipro & Motrin (2x per day) since our last appt. on 8/16. She also takes .25 mg of melatonin @ night to help her fall asleep. Prior to the PANDas dx we really were against over medicating our kid. She has asthma & allergies that we always treated conservatively with meds. She had big behavioral reactions to the both allergy/asthma meds & food dyes/artificial additives. At this point though - we want whatever will help her function close to normally.
Please make sure her liver function is being tested. Macrolides (Zithromax), Lamisil, and Claritin (antihistamine) all are heavily processed through the liver and should be monitored. I am not saying you should be overly concerned with this, just that you should be informed and make sure she is being tested.
Melatonin is one of the safer chemicals out there as far as toxicity goes and it difficult to reach a level of symptomatic overdose. My kiddo (55lbs) takes 3mg delayed release melatonin every bedtime and sometimes takes a second one late in the night if she awakens. I found with kiddo the melatonin cycle of the immediate release was really working against us. It kicks in after roughly 45 min and wears off after roughly 4 hours. A person normally can remain asleep or go back to sleep easily after the four hours IF they are not having all these other issues that our kids have
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We use a combination herbal preparation when we need to: My link--sleep relax formula. It helps around here a lot for both mommy and kiddo
depending on who needs it more or for both of us if needed . And, my kiddo is on very low dose Zoloft (SSRI) for general anxiety.Is the same doc prescribing all the meds she is on, and are they regularly checking her liver function through blood work?
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Are there any support groups, get-togethers for kids with chronic illness? I have not been able to find any no matter how hard I try. I am sure there are others in this boat, but connecting has been really really hard.
Thanks
Kiddos T-ball is for special needs kids through the local Kiwanis Club. I have heard of other opportunities for special needs kiddos near me. Check with organization like the Kiwanis club, Elks Club, Masons, or any group that typically does a lot of volunteer work in the community. Scottish Rite Hospitals or St Jude hospitals, if any are local to you, may also be good contacts. Also, call your local news paper as they are usually in touch with local goings on.
If you look at my siggie, kiddo is has many dxs besides PANDAS. We are also going to look into the special Olympics, but not sure if PANDAS alone qualifies a child. I did just contact them and also asked if PANDAS alone was sufficient to participate.
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It comes in capsules also for those who do not want to drink it. 39.99 for 12-20 days worth.
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We are members ($15.00/yr + a few events cost $ though this probably varies) of a home schooling group that does both social events and volunteer events (serving cupcakes at nursing home etc). We also participate in T-ball. Check with you local library to see if they know of a home school group and your town community centers or civic center for sporting events not associated with a school in your area or google it to see if one pops up. Here is an example google search I do not know where you live, so I just picked a major town, simply put your town in place of Baltimore, MD:
Or you could use a generic home school group finder:
http://www.home-school.com/groups/
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Ditto here. A herx looks a lot like a flair. Like DeeDee, it does seem to come with more physical complaints - muscle pain, headache. But lots of anxiety and a return of various Pandas symptoms. I think the overlap between lyme with neuro symptoms and Pandas is why we annoying lyme moms keep chiming in abou tthe lyme stuff. It's really hard to tell the two diseases apart in many kids. Flairs look a lot alike. It's a common complaint that when you're herxing, you can't tell if the treatment is actually doing any good or doing nothing. The only way you know is when it's done and you can see whether you feel better or not. But during that time, no good way to tell them apart.
Like S&S, I tend to see a loss of control. DS loses impulse control and temper control. I gets lots of "I don't feel good". Lots of calls from the school nurse or mornings where he tries to stay home.
Herxing for us also comes with yeast issues - hard to recognize in a boy. So we give an odorless garlic pill at dinner and that seems to keep yeast in check.
Motrin helps, keeping the bowels moving (trufiber, miralax, magnesium), binders like charcoal or bentonite clay might help (tho timing becomes a problem b/c you don't want to bind other meds, so they need to be taken away from other things), you can also supplement with things that increase glutathione and detox - alpha lipoic acid, resveratrol, CoQ10, vitamin C, lycopene (tomatoes).
When all else fails, take DCMom's advice. She posted about tips for helping a kid face school fears - that "what if this happens" loop of fears - and her advice was to repeat the mantra "whatever happens, you can handle it". Many days, the dog finds me walking through the house muttering "I can handle this...I can handle this..."
Good luck!
I mutter Dora the fishes (Finding Nemo) motto: "Just keep swimming, just keep swimming."
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A lot of somewhat anecdotal evidence to support a link between candidiasis (yeast overgrowth) and thyroid disease, but they do not seem to be sure which came first.
Here is the web search rather than just one site since it is mostly anecdotal links.
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My kiddos symptoms started a year today, one day after your kiddo. It took me a while to find this forum.
At least with the current myco flare, you are breaking in the teacher when your son is not at his best so it is easier for her to grasp the scope of the issue rather than if he was doing great and you trying to explain to her what not good looks like when she has never seen it.
Keep trucking, and I am glad you are not drowning.
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Very sorry but short on time, I will read the whole post later when I get time, but here is an answer based on your title. Oh I read the last line: Yes, I would get him tested because he can have strep despite prophylactic abx. My kiddo has gotten it several times while on abx .
Very clinical and traditional description:
https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=161
Symptoms of Herxheimer reactions
IT unavoidably increases disease symptoms; some of them are subclinical.
The most common symptoms reported include increased fatigue, joint or muscle pain, skin rashes, photosensitivity, irritability, paresthesia, dizziness, sleep disturbances, asthenia, muscle cramps, night sweats, hypertension, hypotension, headaches (especially migraines) and swollen glands. Also reported are heavy perspiration, metallic taste in mouth, chills, nausea, bloating, constipation or diarrhea, low grade fever, heart palpitations, tachycardia, facial palsy, tinnitus, mental confusion, uncoordinated movement, pruritus, bone pain, flu-like syndrome, conjunctivitis and throat swelling.
Physicians may note objective symptoms of a Herxheimer reaction such as elevated creatinine, blood urea nitrogen, liver enzymes, sedimentation rate, gamma globulin or a decrease in white blood cells, hemoglobin, or platelets.
Any symptom, including abnormal lab results, that correlates with IT may be due to herxing.
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I usually recommend this site for exploration of a medication:
It can be used by both lay and professional people as I believe it has patient supplement information and you can access the manufacturer's package insert there as well for more detailed information. It also has a pill identifier and an interaction checker. I have never used either of these, but would hope they are accurate and complete.
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Here is something I just learned about Tourettes. Apparently Tourettes can have a strep component as well as an OCD component as well.
"Tourette's syndrome is commonly associated with attention-deficit/hyperactivity disorder, obsessive-compulsive disorder, behavior problems and learning disabilities. These comorbid conditions make the management of Tourette's syndrome more challenging."
And:
"A throat culture should be checked for group A beta-hemolytic streptococcus, and an antistreptolysin-O (ASO) titer and levels of anti-DNAse B should be obtained in patients with a very rapid onset of symptoms or symptoms that appear to wax and wane with bouts of pharyngitis or otitis media. The correlation of microbiologic and serologic evidence of streptococcal infection with a single occurrence of tic exacerbation is insufficient to make a diagnosis of streptococcus-induced, autoimmune-caused Tourette's syndrome. "
Live and learn, I am very glad I live in the era of the internet!
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My daughter's tics seem to happen on a subconscious level and she clearly cannot control or stop them, whereas stimming seems to be done consciously.
Not sure why this occurs, but here is an excert: "The thyroid-stimulating hormone (TSH) level should be measured in most patients, since tics often occur concomitantly with hyperthyroidism."
http://www.aafp.org/afp/1999/0415/p2263.html
The sentence right below that one is interesting as well:
"A throat culture should be checked for group A beta-hemolytic streptococcus, and an antistreptolysin-O (ASO) titer and levels of anti-DNAse B should be obtained in patients with a very rapid onset of symptoms or symptoms that appear to wax and wane with bouts of pharyngitis or otitis media. The correlation of microbiologic and serologic evidence of streptococcal infection with a single occurrence of tic exacerbation is insufficient to make a diagnosis of streptococcus-induced, autoimmune-caused Tourette's syndrome."
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I dose DDs Abx twice a day also, and give her the probiotic at 3pm. She has been talking about her stomach hurting, so I added 10mg of pepcid with the probiotic for a while to see if it would help any.
For us, we had to "push through" the return of some symptoms when we started probiotics after a six month break. After about ten days, the symptoms abated again finally.
Maybe ask the doc about 500mg in the morning and only 250 in the evening to see if that helps any?
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Just remember to update it at each birthday!!
Or post a birth month, year instead of an age
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Awesome!! I know the feeling since my DD is almost back for now. She has come and gone several times over the last 8 months, but I just feel the stress melt and the joy fill me every time the first realization occurs to me that she is back even if it is only for a while.
Enjoy it and consider using Ibuprofen after you are done tapering off the steroids.
:lol: 
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depending on who needs it more or for both of us if needed 
. And, my kiddo is on very low dose Zoloft (SSRI) for general anxiety.
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Home Schooling
in PANS / PANDAS (Lyme included)
Posted · Edited by Mayzoo
This seems like a helpful link on what you need to do to pull her out of school, deadlines, and the legal documents you will need:
My link
If you have any other questions you think I can help with, post here or PM me. I check in here at least once a day
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