Lighthouse Complex Care Ltd

10/18/2024

https://primaryimmune.org/resources/news-articles/gene-therapy-makes-headway-pi-treatment?utm_source=feedotter&utm_medium=email&utm_campaign=10-18-2024

New gene editing strategies for addressing PI-causing gene variants show promise for conditions that can't be treated using tradition gene therapy, which adds a working copy of a gene to blood-forming stem cells.

08/25/2024

06/18/2024

If you know, you know!

Last year, our daughter had the most severe PANS flare ever, which lasted a few weeks.
She became aggressive and completely out of control. 💥
On the worst days, she didn’t communicate (just hissed instead) or leave the room (we just brought her food).
She was like a wild, scared animal, and it was terrifying. 😟

Then, her first baby tooth fell out, and a few days later, she suddenly got 90% better. 🦷
We didn’t know at that time that there was a correlation

It turns out, primary tooth shedding and the eruption of new teeth are known triggers in PANS. Tooth exchange involves inflammation, and any inflammatory process can be a potential trigger in PANS. 🔥

Physiological root resorption, as it’s officially called, involves the formation of an inflammatory microenvironment in the gums:
- Immune cells such as macrophages enter the area and release inflammatory cytokines, e.g., IL-1β, IL-1α, and TNF-α
- Additionally, a loose tooth exposes an open wound in the gums. Oral bacteria around the wound can stimulate the immune system further.

Unfortunately, nobody has researched the topic of PANS flares triggered by tooth exchange yet.
That’s why:
- Many doctors who know PANS don’t know about this correlation, and they question PANS diagnosis if a child flares without a known infectious trigger.
- Many parents are not aware either, experiencing extreme stress and confusion (just like we did) when their PANS child suddenly flares ‘for no reason’

We need awareness, and we need research! 🔬

Some good news: 🎉
- NSAIDs can reduce the length and severity of such a flare 💊
- Tooth exchange is not forever :)

This is # 10 of my series.
Follow me for more.

06/02/2024

If you haven't seen Dr. Glaucomflecken, his skits nail it! They're both hilarious and infuriating at the same time.
We all need a little comic relief, right?
This one sums up a lot of our days around here! ;)

Day 1330 Days of US Healthcarehttps://www.youtube.com/playlist?list=PLpMVXO0TkGpdvjujyXuvMBNy6ZgkiNb4W

04/17/2024

More good stuff from Beyond PANS!

Last year, after an infection, our daughter suddenly lost the ability to fall asleep. 😵‍💫
At bedtime, she rolled in bed for hours, agitated, until she finally collapsed into sleep out of sheer exhaustion around 1 a.m. 🛌

She’d never had sleep issues before.

We didn’t know it was one of the typical PANDAS/PANS symptoms. 🐼

The neurologists downplayed this symptom, calling it behavioral, and recommended a ‘regular bedtime routine’ as a solution. 👩🏻‍⚕️

If they had, instead, done a sleep study (polysomnography), they would most likely have found proof of a biological rather than a behavioral disorder. 💤
Research shows that ~80% of kids with PANS have clear sleep abnormalities in polysomnographic tests (links in the comments).

They are thought to result from the impacts of inflammation and abnormal immune responses on brain circuits that regulate sleep. 🧠

An important sleep circuit involves melatonin. Sufficient amounts are required to induce and maintain high-quality sleep.

Melatonin results from tryptophan metabolism through the serotonin pathway (tryptophan > serotonin > melatonin).

An abnormal immune response to an inflammatory trigger, such as an infection, can lead to a switch in tryptophan metabolism from the serotonin pathway to the kynurenine pathway (tryptophan > kynurenine > kynurenic & quinolinic acid). 🦠

This can lead to decreased serotonin production and, as a result, insufficient amounts of melatonin. ⤵

Additionally, the metabolism of tryptophan along the kynurenine pathway can lead to the production of potentially neurotoxic compounds, such as quinolinic acid. ⚠️

Obviously, problems with sleep in PANS can additionally have psychological components (anxiety, OCD), but these are also rooted in neuroinflammatory processes.

So:
1. Don’t let your doctor tell you that your child’s sudden-onset severe sleep issues are due to your parenting style. 👪
2. In many cases, melatonin supplementation may be extremely helpful, especially, as it’s also been shown to have a neuroprotective role. Please discuss this with your pediatrician. 💊

This is # 11 of my series.
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03/12/2024

PANS/PANDAS? We can help.
Great graphics to understand PANS/PANDAS coming from Beyond PANS

01/15/2024

Great speaker line up with no charge to attend!

https://autoimmune-encephalitis.org/

12/23/2023

Neat service for people with immune deficiencies that also includes an advocate to help sort through meds/issues.

https://www.myigsource.com/?fbclid=IwAR0SC_89tM8p6y_foR2BhYtqr9KQI32_NdRHBbfsS4Wv8h4UseFfWQBvXwo

We're committed to helping you and your loved ones manage a life with PI.