Mayzoo
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Posts posted by Mayzoo
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My kiddo loves water and would 8-10 glasses a day or more, unless she is flaring. Then it is GREATLY reduced for whatever reason, she has verbal delays to no speech at all
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Can you describe the odor? I have heard yeast has one odor and other issues other odors. Is it all over, or stronger in one area? I know staph can have an odor as well. Any new meds/herbs/foods introduced lately? Any rash anywhere or unexplained itching?
Look over some of these links and see if they help any:
Infection body odors:
Medication Body odors:
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We use klonopin (anti-anxylitic) and Emla cream (reduces pain) prior to the draw. Other than that, I tell her it is not optional, and in the beginning, we had to hold her down (4 people) but then again my kiddo was only 11 then. Now, with the klonopin only, she is still upset, but understands that it is not optional and she will be held down if she does not "allow" the draw. She also understands this is the only way to "see" what is going on inside her body and we cannot help her if we cannot "see" what is going on. Now, it just requires one person to hold her draw arm and I put her in my lap and hold her other arm. This is more for safety than anything else now.
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I would say if you have no choice in the matter (ie doc stops prescribing no matter what you want), then I would start now and have herbal abx on board, at full doses if possible, and only then begin to wean off abx. You do not just stop abx, you must wean off very slowly IMO. I put kiddo on herbal abx (cyrptolepsis, sida acuta and alchornea) all at full doses before I began weaning abx off at 1/4 tablet per 3 weeks until she was completely off traditional abx. She eventually did flare again, and we are back on traditional abx for now. I would also suggest you make sure you have some traditional abx on hand so you restart them ASAP should a flare begin rather than having to wait to convince a doctor she really really needs them. That could take weeks and flares spiral quickly.
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I know Dr. Rao (Plano, TX) will skype with current patients if the need arises, but I do not know if he will skype with new patients. It cannot hurt to ask:
972-964-7374
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I am assuming you have blood work to rule out most other bacterial or viral infections? If an infection is undiagnosed or unresolved prior to IVIG, I have heard that you may not see any results or the results you do see do not last long.
We are holding off on IVIG until we see what kiddo is like with almost normal viral titers, then if she is not stable, we will pursue IVIG. It can be very frustrating investing that much time, energy, hope and money into a treatment and have it not work. I am sorry.
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My kiddos doc recommended what he called "regressive therapy" (not looking for past lives LOL) for her lack of speaking/speaking in a whisper. I have not begun researching it since I have not been able to get the person's phone number from him yet (she is another mom). Other than that, I do not know anything yet. I will try to post back if I learn anything.
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How long ago was the IVIG?
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I will send you a pm today or tomorrow. We really like him.
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Blood work does not make or break a PANDAS dx. I absolutely agree as my kiddo has NEVER had high ASO or anti-Dnase. Hers have always been low, even in the middle of a 60 day bout with strep.
However, it can help you ferret out any other infections/viruses you may be dealing with that also need to be resolved. Read a few siggies around here and you will see the most common issues our kids face. There can be sadly a lot more to being diagnosed with an autoimmune disorder than just strep and lyme.
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Sorry, nope. I used one course of zithromax and the Rhogam shot. One excedrin here and there. Other than that, I do not believe anything else. Keep researching, odds are an affected family will find the cause (s) before science does.
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It took about a month for us, but then she had a strep infection that did not clear for 60 days at the time. One of the many unfair parts of this disorder is that onset can be drastic and overnight, but it takes months to years to resolve the symptoms. We saw improvements after 30 days, but it was slow and steady improvement.
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It is likely OCD. I have intrusive thoughts as the main symptom of my OCD I and I take an SSNRI (Cymbalta) that helps me a lot with them. Makes them much more manageable, but I do not have the slew of other issues our kids have.
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I'll read the article soon. Over on an autism board, they use zinc to stop "mouthing" of objects (shirt sucking, chewing on hair, chewing on everything).
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Minocycline can discolor teeth (due to changes in the saliva). It is a surface stain the the dentist can polish off fairly easily. When kiddo was on minocycline, our dentist gave some extra containers of that flouride/pumice tooth polish to use once a month at home. Not all dentists will do this, but you can ask.
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Many of us pay out of pocket for our pandas docs. I pay for all kiddos doc appointments and I never meet her deductible for out of network, so none of it is refunded. It is "unfair", but it is really my best course at this time.
We used to travel about 1500 miles (one way) for kiddos neurosurgeon for another rare condition she has. I am fortunate in that our PANDAS doctor is only an hour and half away. Many folks travel much more than that, across a state or several states. PANDAS docs are just not that prevalent yet.
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In my experience a flare during treatment could be allergies, viruses, stress, fatigue, a bacterial infection not responsive to the abx you are already on, or just exposure to a virus or bacteria. I know this not very helpful, sorry. You just have to work through and eliminate them each one at a time.
My kiddo will also flare right before I am about to get sick even if she is well.
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Here is a doctor in Canada. Not sure how close it is to you:
CANADA
http://pandascanada.wix.com/pandascanada- Dr. Ayla Wilson, ND
Naturopathic Medicine
Vancouver, BC
604-988-1411
Email available through contact page of office’s website
- Dr. Ayla Wilson, ND
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I did not mean to bash Obama about the care of the doctors. I am getting increasingly frustrated in my healthcare. I have had the same insurance plan for several years now, and due to Affordable Care Act, my premiums are rising and less and less is covered. It is extremely frustrating to have to think twice before doing a necessary procedure, which was previously fully covered and now we are getting hit with copays, and coinsurances through the roof. I, personally, do not see what is "affordable" with this healthcare act ;(.
Ours has gone down significantly because previously kiddo was deemed un-insurable in our state, so she had to be on a plan grouped just for un-insurable people. We paid 450.00 just for her, for that group. Had we gotten her a private policy (after they made it illegal to reject on pre-existing conditions but before healthcare.gov), we would have paid 950.00 a month just for her. Hubby and I were uninsured because we could not afford both her healthcare and ours, so we simply did without any medical care or insurance. We qualified for no assistance for any of us, but could not afford care either.
Now, we pay 116.00 a month just for her. We have a catastrophic plan for us. We do get very minor subsidies for this, but that all the help we can get, and we will lose those when/if I can get a job from home.
Sadly, we are one of the reasons you are paying more, but it was not our choice of course. We would not have chosen for anyone to suffer for us to get a "better deal."
If hubby quits his job, we could ride on the coat tails of our kiddo's vast disabilities, but because we choose to try to do the "right thing" we are ineligible for any help, yet we can barely make it by ourselves (we barely earn above the limits). We would be better off financially for him to quit and us get medicaid, welfare, SSDI, food stamps etc...... That is not how we believe we should live. If we can work, we should work even though we are penalized for doing so. Her best friends parents both have never worked (but could) to my knowledge and have always lived off the state for their disabled 18 yr old. She goes to public school too. They can afford cable, chips, sodas, etc..... Things we would not likely have anyway, but can not afford.
We know others who choose to live off their child's ADD etc.... and receive SSDI, food stamps, medicaid, etc because they will not work.
I have to be at home to take care of her and home school her. I am trying to get a legit job I can do from home right now to help us out. If she went to public school, we were told she would never read etc..... Now, she reads at about a fifth grade level. She is still behind in everything, but I expect more than life skills from her.
This has been an issue for kiddos entire 13 year life, so not just obamas fault. End rant, and I know you were not ranting about us btw. I was just ranting kinda with you and not at you
.Sorry for the rant folks
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It has gotten so bad, most lay folks I speak with are unaware psychiatrists are medical docs first and psychiatry is their specialty
. Sorry you are going through this. Kiddo had/has anorexia at first and in a really bad flare, BUT my kiddos is usually short lived (4-6 weeks) and is helped greatly by abx or steroids.
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How is she doing now?
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If I had trusted doctors, Kiddo would be blind in one eye, deaf in both ears and have needed a liver transplant by now
.Good thing for her, I don't trust them. I have lofty goals I guess. I want to get her to 18 with her original organs in decent to good working order.
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I literally have tears running down my face. Mayzoo's post cracked me right up ...then powpow
it is kinda pretty-- did you notice the other views, where they show it on the wall with furniture around (priceless)
Now those are some people that I would like to party with. Good conversation there!
Mazoo I've been dying for a giant lymphocyte decal. Could you keep an eye out? I'm thinking
the 2nd one down on the right. Would look great over the fireplace
Glad I am not the only one with an odd sense of humor, I know we all need comic relief around here!!
I will certainly keep an eye out for ya
....maybe two would be better .Now, if you are trying to encourage them to go up, you could post the lymphocyte decal with a big up arrow next to it, and if you want them to go down, use a big down arrow. Heck, health all starts in the mind first right
? Rather like a visual cheer for lymphocytes.
, so she cannot adequately explain most things to me.
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....maybe two would be better 
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? Rather like a visual cheer for lymphocytes.
Where to donate for PANDAS research?
in PANS / PANDAS (Lyme included)
Posted · Edited by mayzoo
Since I buy so much stuff for my kiddo from amazon.com, we donate through their site. A percentage of every order we make goes to Pandasnetwork.org.
You can sign up to have them as your go to charity here: http://smile.amazon.com/gp/chpf/change/ref=smi_cyc_pf_redirect?ie=UTF8&ref_=nav_youraccount_cyc#q=PANDAS&page=1&ref=smi_se_cycsc_srch_cycsr&orig=
I hope that works anyway
. If it does not, look under your "account" and choose a charity or google it.