Sirena
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Posts posted by Sirena
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GABA helps our kiddo alot. But we had to get enough of it to see the difference. We give it with l-theanine and ibuprophen. The response was so striking it led to testing for antiGAD65 autoantibodies which are positive 😂. We give every 3 hours.
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How is kiddos immune system? Babesia is also very hard to treat...
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If you are at the food refusal stage—she may be too sick to get the most. And imho, you can still learn about exposure response therapy and implement the basic idea at home (small, safe incremental exposures to things that raise anxiety. We had progress on some fronts but not all bc we hadn’t hit all the infections.
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I have used this little trick successfully a few times. Fill tub with warm water and bubbles. Take kid into bathroom while talking about something else. Keep talking to him while taking off clothes with no reference to bathing and then put him in...so basically no discussion about it just do it...another twist...when kid said didn’t want to then I said okay you just have to stay in bathroom for five minutes. You don’t have to get a bath (with warm bubbly tube already filled) and I set a timer, walked away and closed the bathroom door. Kid put himself in tub before timer went off—lol. We have to get creative! Another comment that worked for gaming kid was to say “oh no— your at low hygiene! Better get a bath quick!
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We did t&a recd by Dr L with ds at age 6. Gave us three weeks of relief and then an upper respiratory infection put us right back in the flare zone. Eventually we did igenex lyme work up for tick born infections and that treatment is what has gotten us traction. (And he did have strep at onset too). So in hindsight I wish we had done a full panel of tests for Lyme (Dr L doesn’t typically) before tonsillectomy but they may have needed to go anyway.
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Also get Horowitz lyme book..and yes lyme & co can run through families—right now my Dh, ds and dd are all dealing with it and DS has pans. The sooner you get on it the better. Look for another land or convey seriousness and pans symptoms to land and ask to be put on the cancellation list to get in sooner. Stomach and swallowing issues sometimes occur with anaplasmosis...
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You can pull the lyme panel tests from the igenex website. Note that it may be out of pocket depending on insurance. You will want lyme IFA, western blot, and serum pcr tests. You should also test for the co-infections especially Babsesia (do antibody, pcr, rna fish tests) and Bartonella panel. Mycoplasma also commonly an issue. Medical diagnostics laboratory also has a good reputation and is more often covered. The IMPORTANT thing to know is that many of the typical Lyme &.co tests are based on antibodies and in tick borne illnesses the immune system can be down regulated so that you don’t make the needed antibodies—and so tests are negative even though the infection is full on raging.
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Yes-sounds like PANS complications from tick borne infections and yes you can be strep positive with out symptoms. You might look into using Alinia in your protocol —but get a detox support in place first. Dr Horowitz’s books are good guides for the big picture.
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So autoimmunity is in play...have you screened for food sensitivities? Any IVIG?
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Sometimes extra calcium (like Oscal or similar) seems to calm down frequency.
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Perhaps food sensitivities? Our SPD /bartonella kid also has strong food sensitivities so gluten and dairy seemed to be culprits...
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According to Dr. L, many times kids can't evening really remember the details of the rages. Please remember that it is their "brain on fire" and at some level it is beyond their ability to control it. Thus, looking for remorse is misplaced because it presumes that they made a choice. Kiddos often don't want to talk about it because it is scary and upsetting.
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T&A got done near onset and there was inflammed tonsil and lymph nodes. Post surgery we had a 3 week reprieve and then it was back full force. In hindsight, I wish we had done the full lyme & co-infections work up first because that ultimately seems to have been the driving culprit (Babesia duncani in particular).
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You might try a couple days of Tagamet for the itching. Also check for food sensitivities and adjust diet before trying Abx or antimicrobials again. Also check IgG levels. One big question you need to answer is whether your son's immune system is compromised--which ironically can happen even while creating autoantibodies. Limeade with xylitol has been a favorite detox for headaches for us.
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If lyme and strep—make sure that there aren’t other tick borne co-infections at play. Check out lyme book by Horowitz as a good overview.
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Better make sure bartonella, Lyme, Mycoplasma, and c. Pneumonia aren’t also on board....
Get inflammatory markers checked... learn about Moro Reflex integration...seems to have been effected which we see with one of ours.
You will likely need BOTH an infection fighting strategy and an immune system modulating strategy. Gettting well will be more important that school—which may be too stressful.
I recently found a program that helps adults help kids self-regulate which I think will be helpful with the knowledge that there brains are under attack and that they (and we) need lots of support. It’s called conscious discipline and they have a “safe space” concept that might be a tool to try to teach.
Lastly, if you aren’t doing it already—try to track temps over the course of the day. We found low grade fevers linked with behaviors and ibuprofen helps some.
We are 2.5 years in and just last month starting to see the light...
Hang in there.
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My advice—get to a lyme literate doc, they are more familiar with Mycoplasma treatment.
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Visbiome, florastor, VSL3 in our rotation...
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Yes--that's the idea.
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We have been on for over two years now. Still helping...
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YES--that's how major onset presented-oral strep B...
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For what its worth, I developed hyperaccussis--extreme sound sensitivity which responded to Aleve at prescription doses for 5-10 days or so to get it to calm down and if it starts to act up again, I go back on the aleve (naproxen sodium).
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Xylitol limeade or alkaseltzer to alkalize can help. Works fast.
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Other detox things that have been helpful--take the edge off have been:
Charcoal pills (time dosing away from other meds)
Zen (glutamine & L-theanine)
Alkalizing drinks (xylitol lemonade or alkaseltzer gold (DS didnt like taste)
Ibuprofen around the clock
Has anyone tried GABA for tics (vocal and motor)
in Tourette Syndrome and Tics
Posted
3200mg (3 x 750mg pills) GABA; 3 x 200mg L-theanine. 65lb DS