Ehlers-Danlos, Fibro, Cfs, MCAD and food allergy

Made a big pain/nausea connection last night. My son and I have many food sensitivities. Mine seemed to start early thirties but he was born with them. He’s been having much less pain and nausea since starting Mast cell activation disorder treatment, but I’ll still check in a few times a day to ask his pain/nausea level. He hasn’t been above a three in either (down from 7/8s) since starting MCAD Tx.

Was googling my Fibro muscle pain during mild insomnia last night and saw Dr Myhill references to lactic acid/d-lactate. BINGO. We have been trying to sneak in some dairy now and then to ensure good calcium levels and no more broken bones. Turns out dairy causes quick path to lactic acid overload in folks with mito challenges. In neck/shoulder for me due to old scar tissue from work injury; tightness in that location used to lead to chronic migraine til I had insane amount of Sarapin/B12 trigger point shots to get the spasms to ‘let go’. For my son, dairy seems to be correlation between rising from 0 to 3 in both stomach pain and nausea, as well as random muscle aches in legs and shoulders, and very noticeable fatigue. Daiya fake cheese, we are coming back to you!

Report on food allergies/EDS connection: https://www.medpagetoday.com/meetingcoverage/aaaai/31471

Dr Myhill link: http://www.drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS

Superlearning

Today at lllt treatment the doc mentioned a book ‘Superlearning’ which had a profound effect on his life, going from ADHD barely passing high school to implementing certain techniques during college which helped him graduate with a 4.0. My whole happy family (and our extended families) struggle with ADD inattentive type as well as EDS related poor health. I cannot read this book fast enough (wish it was on Audible) but we have a brand new homework & reading-time ritual: “Alexa, play Super Learning music.”

Luckily there are some bedtime music options available as well, also on YouTube. Excited.

Pediatric EDS POTS MCAD Hypothyroid connection

I’m making progress on CFS symptoms and have found resolving thyroid issues to be a critical component of feeling better. While both my son and I were feeling subpar last week, it occurred to me to hand him one of the Ph strips I use to check urine- we discovered his was also very abnormally alkaline – around 9 when typical is 6-7 range. Since he was feeling better the next day I exited panic mode and this info has been rolling around the back of my head.

Today I was completing ADHD paperwork for his school’s 504 eval and realized I should include the MCAD diagnosis because so many days were missed this past semester. Looking for the allergist doc with the diagnosis I came across blood pressure readings from sons 2 appointments. Early December when symptoms were terrible (he ran out of Drs office thinking he was going to barf, ended up with diarrhea and then felt ok) – blood pressure was 105/62. I googled 11 year olds BP and this is way low, nearly off charts. THEN, I noticed recent January appointment when he was not even symptomatic had bp of 95/55: way off the charts. Can’t believe they didn’t mention it.

Scrambling for next steps for him. During my overalkaline bout I increased thyroid and took care of business. Hard to find thyroid instruction for kids but I’m on the case.

Ldn for ADHD, IBS, Fibromyalgia, Migraine, CFS, MCAD, MCAS

About 6 months ago my brilliant naturopath suggested I research low dose naltrexone or LDN as an optional tool in my healthcare. I gave it a try, and only in hindsight after letting prescription refill linger for 2 months did I realize what a huge positive impact it has had on my health. I restarted taking LDN daily about a month ago and had immediate improved energy, concentration and lessening of food sensitivities. I am attempting to get a prescription for my son (recently diagnosed with inattentive ADHD and MCAD) – it is an uphill battle. There is quite a bit of data online supporting LDN for pediatric chrons, PANDAS and autism behaviors. I am determined to find help for him. Thank goodness for the Internet.

/// Update regarding low dose naltrexone::: the medicine helped in so many ways, my favorite being ending shingles recurrences (10 plus outbreaks last year! Grr) However– since discovering iodine deficiency and supplementing that, I’ve dropped ldn and have even better results. Ldn did bridge the gap! ///

Pediatric mcas / mcad

We’ve been at wits end past several months with eleven year old sons constant tummy troubles. Finally got in to see an allergy specialist that I requested referral to specifically because of seeing mast cell disease mentioned on his website bio. Son was diagnosed with mcad- tentatively as we try out meds and await his serum tryptase results. I wanted to post the prescribed meds because if I had ANY idea of what was safe for an 11 year old I would have already tried this and saved him waiting for months and months. Recommendation was one zyrtec daily and twice a day a 75mg Zantac. He already is taking 100g ketotifen at meals and bedtime. I hadn’t been sending the lunchtime tab to school but doing so now!