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That is great news. We just had bloodwork done (before insurance, $2,200+ worth! gulp).

 

I will call tomorrow.

 

Thanks for the heads up!

 

I believe you can get the results directly from the lab in all 50 states (https://www.federalregister.gov/articles/2014/02/06/2014-02280/clia-program-and-hipaa-privacy-rule-patients-access-to-test-reports). It is possible not all labs allow online access, but you should be able to go to the lab and get them yourselves. You do not have to wait on the doc to get back to you. You may not understand all the results and need the docs help with some of them, but I find it less frustrating to just get them from the lab. We use labcorp here, and I can log on to their site and get the results the same day they are done (I receive an email from labcorp saying they are done).

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  • 3 months later...

Just want to add that low IGA is common and often causes no issues.

HHV6 is poorly understood and tends to get elevated when there are other infections. Most labs don't really test for it, if there's suspicion you need proper testing because valcyte is only "cure" and it has extreme side effects. But having elevated HHV6 is not a sign of infection. You would need a fourfold rise in titers and actual symptoms.

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We no longer go to him either. If anyone wants to know why, they can PM me.

 

Ironically (or not), on our long 6-year road, after countless naturopaths, medical doctors, homeopaths, many many "specialists", who, I will say, each initially felt confident that they could help (and felt perfectly comfortable taking thousands of dollars), the main things that have genuinely helped our daughter, have been things I have learned from other mothers on boards like this one.

 

I'm not saying that we are done with the "professionals", but that I will be very judicious and never again completely acquiesce to any of them. They have many other clients vying for their time, and absolutely no one cares for our daughter, and wants to see her healed, more than I do, and will do the time and research necessary for that to happen. Even if they care, the bottom line is that this is a business for them.

 

Incidentally, we have our daughter on a combination of herbs, mainly those found in Stephen Buhner's books, and she is improving in ways that I never thought possible. We are not out of the woods, but I feel empowered as a mother not to have to sit on pins and needles waiting for a "professional" to call me back when we are in crisis mode. There is something to be said for that.

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We tried working with Dr. T and got the same treatment, but at least he followed through with the blood tests, but after a second consult, he stopped communicating.

 

I didn't like being held hostage. The thing I did, prior to contacting Dr. T, was get DD's PCP on board with using Dr. T's consultation. It was suggested DD might have hashimoto's encephalopathy because of results and said it was a possibility. DD's PCP didn't know what to make of the results because he'd not seen the odd thyroid numbers before.

 

A visit to the endocrinologists, turns out it wasn't, and DD's Autoimmune system was actually attacking her thyroid. We got lucky at Children's Hospital Seattle and finally got connect with a Pandas Doc. Very thorough intake forms asking all the questions needed to obtain enough info before we stepped through the door to be able to make a clinical diagnosis. A copy of the Cunningham Panel results and she confirmed it. No wasting of time, just quick to the point getting so much done in one visit. She even did the blood draw in her office because DD was a little anxious.

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  • 4 years later...
On 5/24/2015 at 11:21 PM, 4Nikki said:

A visit to the endocrinologists, turns out it wasn't, and DD's Autoimmune system was actually attacking her thyroid. We got lucky at Children's Hospital Seattle and finally got connect with a Pandas Doc.

 

We are deep within the Seattle Children's network and currently stuck with a number of specialists there saying "this is PANS" and also we are unable to treat or acknowledge it. Would you be willing to share the Endocrinologist's name you had luck with? Thank you for your time! 

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  • 2 weeks later...

I can't recall the name off the top of my head. Its been a while. But shes at children's. Anyone can read the tests and provide insight if something needs help. The numbers are pretty basic to them and they are properly trained. Unlike us desprate parents!   We got confirmation of Pandas through the Cunningham panel. Maybe getting it, it helps with stress relief as well?  Vital kids medicine Dr G or Dr Rhoy at center for healing neurology Is a good place to get good direction toward tracking down the root causes of your child's issues. The build up of ensimes and anti-bodies in the brain, reported by the Cunningham panel is a result of something else. We have to find the something else. In our DD's case, at least part of it, is deficient mitochondrial cells. Once we got DD on support for mito, her symptom became more manageable. 

Some Doctors are better at deductive reasoning than others. I like the ones that have a D.O. acronym behind their name. DW is a surgical nurse and she likes the Dr's that are the best surgeons. She's changed many pcp's. I think the best doctors are the ones that give good advice. I've had one doctor in Washington for the last 7 years. In Southern California, I had one Doctor. My Dr. Is also DD's primary even though DD has a great pans/pandas doc. Our kids have very complex cases and its a good idea to have checks and balances when seeking treatment so there is plenty on concise reasoning behind our decision making. It also helps keep the expenses down, while seeking solutions that are hopfully the right choices.

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