Leaderboard

I think it ultimately depends on the doctor. But I believe that one could be diagnosed for being just below normal. I do not know if PANS can screw with the numbers but I do know that the numbers are changing and fluctuating daily. Are you hoping for a diagnosis? If you believe a deficiency may be an issue I think the doctor would be open to addressing that due to the on going infections alone. You don't want to make a problem if there isn't one, but I can tell you low igg surely would not be helping with the infections and treatment would hopefully help! The normal range is still a range and just because one is within range doesn't mean that they are equal to someone who is also in range with a much higher value. Both are normal but they aren't equal and the low one might not be sufficient. I've always looked at it like every little igg counts. This is a reason that some people don't like IVIG and prefer other methods such as Sub Q, IVIG loads you with a big amount of igg but as the month goes on the level falls and right before the next infusion you find yourself on the low end of the range. You stay in range, but there is a noticeable fluctuation. Whereas Sub Q for example is weekly so you are able to maintain that level at a steady, stable, median level within the range. Igg levels are always fluctuating so if someone happened to be just below the normal range one day this wouldn't necessarily be a cause for concern. However, if someone tends to live at that low level outside of the range then treatment might be key to help that person maintain enough igg to live a healthier, more infection-free life. Doctor's also definitely take the patient's ability to fight/prevent getting infection into account.. for me the diagnosis came from a combo of low levels of igg and my chronic sinus infections that I could never seem to fight off. It sounds like the on going ear and sinus infections would be a big factor in a potentially getting this diagnosis. I was also low in SubClass 1, not crazy low, just under the range I believe, but I was pretty low on the IGG total. At the end of the day there are people that naturally sit on the low end of the scale and do not receive treatment, it just depends if your comfortable living at that low end. I think its a question for an immunologist since its always good to be on the safe side. I think they would have very valuable input. My immunologist has always felt very strongly that I need treatment and so it never fell on me to decide wether or not I feel I really need it, I don't like to make those decisions anyway! I also want to note that I have seen different normal ranges on different tests that different doctors have used so keep this is mind.

To your pledge to "improve my quality of life by exploring all measures possible", and for the sake of those golden years: I consider it wildly "lucky" that you have a psychiatrist that wants to try antibiotic (abx) therapy. I say lucky only that it is one of those "measures possible". On the one hand, we have Dr. Trifiletti in New Jersey, who has suggested abx to a ticcing parent of a PANDAS child he was treating, and finding it resolved the tics in that middle-aged person. On the other hand, we have Dr. Miroslav Kovacevic who has said "ultimately, all abx eventually fail", as if to say, it works well when caught really early, but not so well after a long time untreated. If it were me, I would first trial a good probiotic for at least a week (to know it doesn't make it worse), and then I would go for the abx. You don't know for sure until you try.

My kids have been kinda-sorta REID for a while. REID is more than just low glutamate but also targets meat consumption at 20% (I think) and lots of raw greens, vegetables etc...among other things. Its super expensive to do this. And like the posters above we found it super difficult to do, given all of other things they have given up, and it has a lot of social impacts on the kids. We have made progress reducing free glutamates (REID does NOT worry about glutamates in vegetables, they are bound) We try not to have processed meats, e.g. use fresh pork sides and salt them afterwards. They only drink raw milk. We try to do lots of greens but mainly in the summer out of the garden (cost.). No processed foods, which means we eat whole foods. Very little sugar. But I can say that we do see improvements. To us the big question is their seasonal PANDAS spikes. If we chart their symptoms they begin to increase in October and peak in December and then have another shorter spike in the March or April. We used to think it was allergies but wonder if its something else like diet. For example we used to let the kids do Halloween candy but noticed they would be awful afterwards.

Hmmm...this really has me thinking today. Our son was gf/df for years before his PANS diagnosis. The diet changes definitely helped with his early PANS flares in toddlerhood (which we didn't know were PANS then). Reintroduction of gluten and dairy in the past caused a major regression which was improved again by changing his diet. With such past success with diet changes, we followed the recommendation of the first DAN we consulted after our son received his diagnosis, to remove all grains. But in removing the grains we've found we've actually increased his intake of processed meat and vegan "dairy" products such and cheese and yogurt - major glutamate offenders. I've really struggled with giving him so much processed meats but with his diet so restricted otherwise we've needed some convenience foods. I've really questioned whether the meats etc are making him worse and just before reading this was contemplating removing or limiting them. After reading this I stumbled online to information on the REID Glutamate free diet. I think I'm going to try it and see if it yeilds any positive results. May need to wait until school is out to jump in with both feet but I'll keep you posted on whether it has any positive impact.

This seems to be a common issue among some of his patients. If you search the forum archives (search bar is in the upper right corner of the page) under "Dr T" you may find previous discussions on the matter. The forum generally tries to avoid doctor bashing and if this thread turns too negative, it will likely be locked at best or taken down at worst. So if others have strong feelings, it's best they contact you via personal messaging (again, look to the upper right corner under your login name to access your mailbox). Many doctors seem to have polarizing effects on the Pandas parents - some love a particular doctor and get defensive when shortcomings are pointed out, while others feel compelled to share their negative experiences as a warning of sorts. The complaint about not being able to contact a doctor for follow up is a common one not limited to this doctor. But that doesn't excuse the behavior. You paid for a consult and were given a promise directly from him that he'd get back to you with instructions. You are not asking for something you didn't pay for or that he didn't offer to provide. Enough time has passed and you're entitled to the guidance you have a right to expect, IMO. I would call, every day if necessary, Stay professional and respectful but also persistent. However, if it proves to be too much work to continue the relationship, then it may become time to consider other doctors. In the 6 years I've been on this journey, I worked with 3 different specialists and had passing conversations (at conferences) with two others until I found the right partner. Each has their strengths and weaknesses. This is a bit like dating - a matter of finding the best fit. Each doctor has a different perspective on this disease and how wide a net they're willing to cast in terms of testing and treatments. The right doctor for you will be the one who's willing to look in the right place, given your daughter's symptoms/history. I would continue to contact Dr T for further guidance/lab slips but also clarify whether there will be a charge to review the results, or ask if the results can be sent to your family physician. If you ultimately decide to seek another doctor, you may want to post the things you're looking for - do you want mainstream or integrative or naturopath or homeopath? Do you want someone who can do IVIG? Do you want long term antibiotics or would you prefer to use naturals? What geographic area can you travel to? Then people can message you with their own experiences.