Mayzoo
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Posts posted by Mayzoo
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I have spent roughly six or more MONTHS trying to STOP my child from spitting, which is either a new tic, or a learned behaviour from T-ball. Now, I want her to do the 23andme test, so I have to ask her to go spit in a tube
. Gotta grab life's little ironies where ya can LOL.I allow spitting in her bathroom sink ONLY, so to "appear" consistent we are going to be filling the tube up over her sink, but still........kinda funny.
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I am curious as well. I have not called our insurance yet. Get the CPT codes from Cunningham lab, possibly off the website, then the insurance co. can tell you how much they would pay. We just spent almost 700.00 for just the urine tests (not sure how much the blood test will be yet) so another 1000.00 is out of the question right now and likely will not be an option period. If the reimbursement is anything like the tests we just ran, the cash out for one test set was 225.00, and the insurance will reimburse me 19.00. Out of network labs can charge what they wish, but reimbursement is based on what the insurance would have allowed had you gone to an in network lab. For the test I mentioned, the insurance allows 33.00, but the lab the doc insisted we use costs us 225.00. We will likely not be doing the Cunningham test simply because we cannot afford $1000.00 more on top of what is an absolute necessity for our child.
Through the contact page I did request the CPT codes. If I hear back from them, I will post the CPT codes here so we all do not have to ask
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We started the Lemon Balm on 03-01-2013 and it is still working quite well for us. Kiddo is much happier, and able to be left alone in a room without anxiety for varying periods of time. Whereas before, she was within 2 feet of me at all times. We have also gotten off zoloft in that time frame (two weeks ago). We were on a very low dose as it was, but it did not seem to be helping, certainly not with her anxiety which is what it was prescribed for. The lemon balm (500mg twice a day) has helped to reduce nightmares as well.
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Probably not for everyone, but it may well be informative for those just starting out on this journey of autoimmune diseases. I do not have a kindle, but they have a kindle reader app for computers, so you download that and you can read this on your computer.
The purpose of this course is to provide healthcare professionals with the information necessary to diagnose and treat the most common autoimmune disorders according to evidence-based or guideline-endorsed recommendations in order to improve patient quality of life. In addition, members of the public may use this course to enhance their personal knowledge of the subject matter presented.
Upon completion of this course, you should be able to:
1. Describe the impact and pathogenesis of autoimmune diseases in the United States.
2. Recognize genetic and environmental risk factors for autoimmune diseases.
3. Evaluate the general characteristics of autoimmune diseases, including the difficulty in reaching a diagnosis.
4. Identify approaches to the management of autoimmune diseases, with special attention to considerations for patients with limited English proficiency and/or health literacy.
5. Analyze the epidemiology, clinical manifestations, and diagnostic criteria of autoimmune thyroiditis.
6. Select the appropriate treatment for Hashimoto's disease and Graves' disease in various patient populations.
7. Appropriately identify and diagnose rheumatoid arthritis according to established diagnostic criteria and clinical manifestations.
8. Outline the recommended treatment of rheumatoid arthritis using pharmacologic and nonpharmacologic interventions.
9. Discuss the important of follow-up and patient education in the treatment of patients with rheumatoid arthritis.
10. Evaluate the impact and diagnosis of systemic lupus erythematosus (systemic lupus), including indications for appropriate referral.
11. Analyze the available treatments for systemic lupus, including considerations for follow-up and prognosis.
12. Apply the available diagnostic criteria to identify and treat Sjögren's syndrome.
13. Outline the diagnostic criteria established for fibromyalgia, and discuss potential difficulties in establishing a diagnosis.
14. Identify appropriate treatment modalities for fibromyalgia patients and patient education and follow-up needs.
15. Evaluate the clinical manifestations and diagnosis of celiac disease.
16. Select the appropriate treatments and follow-up plan for patients with celiac disease.
This 15-hour continuing education course is available for download for professional development; if continuing education credit is desired, please see instructions included in eBook. -
No viable suggestions, sorry. I could come up with lots of flowery ideas that sound good, but in reality they are not viable. Feel free to call me tomorrow up until 4:30 pm or Saturday anytime if you want to rant for a bit, hubby will be at work then. We do not have to worry about my kid interrupting us in the background since she totally stopped talking AGAIN
I am so sorry that your kiddo has stopped talking.
. I may take you up on that offer tomorrow.....I'll have to see how the day goes. Thanks!Well, we have been here before with the not talking, and this disease seems to work like a pendulum, so we will likely be here again some other day. We will get through this, I try to tell myself her writing skills will improve during this (not handwriting, but spelling and structure) and her sign language will be refreshed now too.
Yeah, seriously, feel free to call. Maybe we can brainstorm an idea or two, or just maybe venting will help you feel better.
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if these are symptoms as they appear to be, treat them like symptoms. I am not sure why you would not go for IVIG.
In the meantime, as a bandaid you can try NAC, said to help with rages. for us, getting of gluten and dairy helped somewhat, too.
If you have not already, you can try to be extremely nice when she rages. give her compliments and redirect her mind to something else. it is difficult at first and then it gets easier gradually. participating in her rages is the worst (i am telling this to myself not just to you).
I cannot speak for tufour, but my concern with IVIG is that it is a blood derived product and as such would be a very last resort for us. Kiddo's doc has already recommended it at the first visit even before we found she has PI. Now, we also find she had kidney disease of some type, which makes IVIG even a more distant possibility for us.
It seems IVIG helps some and does not help others. Also, from my limited understanding, the chance of success is far greater if you have other infections under control before beginning IVIG.
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No viable suggestions, sorry. I could come up with lots of flowery ideas that sound good, but in reality they are not viable. Feel free to call me tomorrow up until 4:30 pm or Saturday anytime if you want to rant for a bit, hubby will be at work then. We do not have to worry about my kid interrupting us in the background since she totally stopped talking AGAIN
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This FREE therapeutic play kit really helped my child prepare for and get through her 1st IVIG:
http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html
And I think the dose is 1.5g/kg administered over 2 days.
Thank you very much for posting this resource. Kiddo was dxd with PI recently, and her doc was pushing for IVIG even before he got the results. My kiddo does soooo much better when a procedure is explained to her, and she has time to work it out on her stuffed friends. I am not sure if we will be going with IVIG since I am still very hesitant, but time will tell. Regardless, thank you for the resource since they also have magazines and another book that could help her realizing she is not alone in all this and help her cope.
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Thanks Linda
. I will try to get in touch with them today. -
My daughter was PANDAS, and just was switched to PANS due to very low strep antibodies. Are they only interested in those with traditional PANDAS, or is PANS okay? If PANS is okay, do we have to know the triggers since we have not finished testing yet?
Thanks
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My daughter's ASO was 6 one time and 8 the next, while her Dnase was 95 one time and 86 the next. The first set of numbers was while she was in an active strep infection. Her immune panel shows she is immune deficient in IGG and IGA. All these means is that her body does not make antibodies to strep, and she has PANS instead. Her trigger is not strep after all, but something else.
What test result showed the 150?
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I am not sure if it is fixed or not. I runs the first six minutes then stops. I am sure he is working on it.
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He is having some tech difficulties, but I think it is fixed now. Try refreshing your screen and see if that works.
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Medications are not given based on age; they are given based on Kg of weight. The formula to convert lbs to kg is lbs/2.2=kg. Here is a web page that gives prescribing information for azithromycin. If you are not used to reading monographs for meds, then you could post his weight and I can let you know if it is right. My daughter was given 250mg per day at 52lbs if that helps you any.
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ditto, ours checked for many viruses IE coxsackie (well he forgot this one, but he will do it next go around), HHV-6, EBV, etc...and many bacterial infections. He also checked titers for the major immunizations, TSH, T4free, and T3free, and quite a few other things. They drew 10 vials of blood and the results are 8 pages long, plus I had a few results from previous work already.
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Blood work shows on top of everything my kiddo already has to deal with, she also has kidney disease, mononucleosis, HHV-6, hypothyroid and the doc forgot to test for coxsackie virus so she may have that too
. I do not have her heavy metals test, neurotransmitter test, and a few other tests back yet, BUT will the adding on of diagnosis' ever end for my poor kiddo (all of our kiddos)?The doc who did the blood work has still not called back, but a reagent test strip test at home shows a moderate level of protein in the urine which added to her very high lactic acid blood results equals kidney disease. I will be testing every day this weekend to make sure I have good data for the urologist.
I do not know the degree of damage or cause yet, I will be calling to make an appt with a urologist on Monday.
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As long as you keep probiotics, kefir and/or yogurt in him (2-3 hours apart from the antibiotics), he should be fine. My daughter has had to be on antibiotics daily for the last 15 months. Many children must be on long term abx for medical conditions such as rheumatic fever. Some multiplesclerosis patients are on abx for years. Some teens have been on abx for years on end for acne. I am not saying there are no issues with long term abx, but this is not the only condition treated in this manner.
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I am looking for help for my daughter. We live in Little Rock, Arkansas. Any one know any doctors that work with PANDAS in Arkansas? . She is currently on her first round of Cedfinir 250mg for 10 days. Her pediatrician was willing to listen and start antibiotics, but she really did not know much about PANDAS. Any help would be greatly appreciated.
Dr. Matthew Crouch
Psychiatrist
479-442-KIDS
Fayetteville, AR
This is the only one listed as a specialist (though there may be others). This one is a psychiatrist, but some psych are writing abx or consulting with the pedis to get them to write them. I do not know if this is close enough to you.
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If anyone has a contact person there, I did notice one small typo that may confuse a newbie:
"studies that show IVID and plasmapheresis to be effective in reducing symptoms"
Should obviously be IVIG, unless I am missing something.
Otherwise, yeah a fairly good article
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Enhansa is bio-enhanced so it absorbed at a higher rate than plain curcumin, and it is more bio available than plain curcumin. However, there is a product called BCM-95. Bio-enchanced Curcumin 95. It is not the same as Curcumin 95%. It must be BCM-95 for it to be bio-enhanced.
There are many companies selling the BCM-95 in varying strengths (I have seen 250mg to 750mg). I started kiddo on the progressive Labs 400mg and gave her half a capsule then titrated up.
Here is a link to various brands on Amazon:
http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=BCM-95
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My daughter became symptomatic in Sept. 2011. She stopped talking entirely for 3 months. When began to speak again, she only whispered. She was diagnosed and we began abx treatment in Jan 2012. We finally got her strep infection (rapid positives) under control at the end of Februrary. We continued zithromax. In July, for one month, she spoke normally. Then regressed with an infection back into a whisper, with reduced communication, and has continued that since. She tells us it hurts her ears to use her normal voice, and I can believe that. She now runs out of the bathroom when she flushes the potty saying it is too loud.
We saw a specialist for pandas a few weeks ago and he said he has a handful of patience who whisper and most say it hurts their ears to talk louder. He also said he has one patient who will only speak in a cartoon voice. I am grateful I do not live with elmer fudd or daffy duck
. I assume, hope, and pray that when we get her back on track she will begin to use her normal voice again and no longer be in pain from "normal" sounds.Her vocal tic is loud (out of her control), but her words are whispered (despite my attempts to bribe a "big girl voice" out of her). We had her vocal cords checked during her T & A and they are fine. It is a self defensive choice is the best I can discern to minimize the pain she feels due to loudness around her.
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Yes, but if you have insurance, the cost is likely the same. I got them both ways, whatever the pharmacy had on hand, and it was a 30 day copay regardless. The pharmacy may be losing money, but your copay should be the same.
If you do not have insurance, then it is likely cheaper to buy a 30 dose bottle.
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We grow our own lemon balm and one can also make a soothing tea with fresh leaves or even just chew a leaf when feeling stressed!
I am getting a medicinal herb pack soon. I have a pot all picked out to grow them in. Lemon Balm will be one of the 9-13 seeds I buy in the package.
Until it is ready to harvest, what I buy is dirt cheap and works wonderfully for my daughter and myself. She had severe separation anxiety and nightmare. Today I had to go look for her since she was playing outside without me
. We have a large yard that is fenced all the way around with two big dogs to watch after her when she outside for a few minutes, and today daddy was hanging out in the area to keep an eye out too, but mommy worries after all this time of her being right beside me. I take it with excedrin for headaches and when I need a boost for my patience. I am amazingly pleased as you can tell LOL.
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I will do some reading, but my first thought is whether you can take this while on an SSRI? Both DD and I are on one but this sounds like something I would like to try.
So far as I can tell, it would be fine:
"
Possible Interactions:Lemon balm may potentially interact with the following medications:
Sedatives, thyroid medications -- Lemon balm may interact with sedatives and thyroid medications. If you are taking sedatives (for insomnia or anxiety) or medications to regulate your thyroid, ask your doctor before taking lemon balm.
HIV medications -- It is not clear whether lemon balm interacts with antiretroviral agents. At this time, avoid use of lemon balm if you're taking medication for HIV."
. Gotta grab life's little ironies where ya can LOL.
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. I may take you up on that offer tomorrow.....I'll have to see how the day goes. Thanks!
. I will try to get in touch with them today.
. I assume, hope, and pray that when we get her back on track she will begin to use her normal voice again and no longer be in pain from "normal" sounds.
Cunningham Panel and insurance coverage--experiences so far
in PANS / PANDAS (Lyme included)
Posted
In our case anyway, we have other known conditions, IE autism, that we needed to run some tests for as well. Not all her tests were for are for PANDAS. We also strongly suspected that she had PI, but we needed the blood work to back that up.
As it turns out, we found out she has some kind of kidney disease that was not even on my radar and I doubt it was on the docs since he never discussed this at all, so that was a good thing we discovered since the sooner you treat this, the better off the child will be.