Mould: Our story
Over the years I had never imagined we had hidden mould in our house. There were no signs of significant mould, no damp patches, no musty smells. Yet, within 48 hours of moving out of our house I saw a big improvement in my son — it was like night and day.
Before we moved out Aran was quite static on the sofa doing very little, house-bound, in his own world, paralysed with massive anxiety, very little interaction, having tics and repetitive movements. Year on year he was eating less and less, food sensitivities increased, developed seizures and poor sleep became the norm. He was miserable and things were getting worse.
In recent years, we noticed in the autumn Aran got significantly worse, ticcing with repetitive arm or head movements. He had developed PANS. He also stopped leaving the house until the summer months (when there are less mould spores in the air).
After moving out we noticed Aran was moving more freely around the new house. Within days he went out to the playground and was playing on everything — something he hadn’t done in years. I literally cried with joy. He had improvements across the board in other areas including cognition, communication and self help skills.
I missed a lot of clues which pointed to mould being an issue. These clues included no Lactobacillus on the stool test. I had asthma which was worse in the autumn. We were always battling yeast with him and he had a bloated stomach and cradle cap as a baby (which can be associated with yeast).
As the years went on Aran tolerated less and less food even though he was on a clean diet. He had a bad reaction to S.Boulardii. Behaviours including tics and gut issues got worse (especially in the autumnal months) and of course, a huge clue, developing PANS in recent years. No matter how hard we tried to heal his gut we were moving one step forward, one step or two steps back.
Not all these symptoms mean there’s a mould issue but many of them can appear with one. •Homeopathy came to our rescue a few times to help with some horrendous behaviours (meltdowns, hand biting and headbanging). One remedy eliminated these behaviours almost completely within a few days. However, homeopathy was not working for the big detoxes (eg antibiotics). Our homeopath said there was a ‘block’ and she was right and the ‘block’ was mould.
My son is now 17 yrs old and I feel that I wasted almost two decades of trying to heal his gut when I was actually fighting a losing battle by living in mould. Looking back I wish I had done a simple ERMI dust collection test (EnviroBiomics) to measure mould levels in my home which would have shown we had a problem.
To give you a bit of background, Aran was born by C-section, had trouble feeding and had colic as a baby and rarely slept in the daytime. He had cradle cap and had about five ear infections from six to twelve months old and antibiotics each time. I now think his immune system was already not functioning properly possibly due to constant mould exposure. At four years old he had an H pylori duodenal ulcer. We only found out because we happened to do a stool test privately which showed gut inflammation. Ulcers can be very painful and he showed no obvious signs of pain. The only thing he did occasionally was lie on the floor with his hands tucked under his tummy. Fortunately, we got treatment to heal it.
Last year our flat roof on a downstairs extension leaked after a rain storm. It was a blessing in disguise. When the plasterer removed the ceiling we found lots of mould which must have been there for years. We had to have significant building work and found further mould under the kitchen floor where pipes had been slowly leaking over the years and there was no functional damp proof course under the house which led to dampness. In fact, on close inspection of our belongings we found mould on books, furniture, toys, record and disk sleeves which we threw out.
When we left our home the change was dramatic — 98% PANS symptoms disappeared! Tics and repetitive movements all gone. Aran started tolerating more food, leaving the house, helping with house chores, dressing himself and he began interacting with us again. Aran was just functioning better all round and so much happier!
Living in mould had caused a massive immune response in my son which affected his brain and may have caused cognitive impairment too. Mould can have a profound effect on the immune system where mycotoxins produced by mould can have a very detrimental effect on the gut microbiome.
We returned to our renovated house recently and thankfully the debilitating PANS symptoms he gets when in the presence of mould have not returned. He still has PANS but it is much more easily brought under control. I no longer have asthma and only use an inhaler if I come into contact with mould.
I would urge anyone who has a child with PANS and those with kids who are getting worse and have many sensitivities or making slow progress to carry out an ERMI. If you have family members who have asthma and are especially worse in the autumn or if your child’s symptoms improve if you stay somewhere else for a few days can all be signs of hidden mould in the home. We still have a long way to go but I now feel we can finally start helping my son’s gut to heal but this time with a fighting chance.
Good resources
Rowyns Roots Community (Mighty Networks App)
Rowyns Roots Facebook
Mould is a massive topic and there’s a lot of differing opinions out there and the info can be overwhelming. I used the advice on the Rowyns Roots Community (Might Networks) run by Rowyn Bakwin for info on mould testing which I found to cover most of what I needed to address.
There are numerous files on the App on how to test for mould (dust test is best), air purifiers (uv lamp ones are the best), binders, how to live in mould more safely when you can’t move out, how to remediate your home safely without contaminating all your belongings and making your child more sick, how to detox from mould safely etc.
It also has excellent sections on how to deal with PANS/PANDAS flares using mostly natural anti-inflammatories and other supplements as well as numerous files pertaining to Autism. It has a £6 month subscription fee but you can unsubscribe anytime. I think it is worth it just to look at all the excellent files. You can also post your test results (eg Mould score, OATs, stool tests etc) and Rowyn will review them for you and answers questions daily. She has an incredible wealth of knowledge and experience. Judging by symptoms and our OATS test she suspected we were living in mould long before we discovered it.
Majority agree that the mould (eg on grout, plaster, floorboards etc) should be removed by removing the plaster etc and not treated with chemicals. General advice is to not use bleach or other chemicals to kill it as that can release mycotoxins into the air and can make your child worse.
EnviroBiomics Inc (mould spore test) – we did this after sealing off the mould damaged area of the house with thick plastic sheeting across the doorway and started using two air purifiers. We tested because we wanted to see what we were breathing. Testing revealed the toxic mold Stachybotrys Chartarum, Penicillum, Aspergillus and Cladosporium. The levels weren’t high but we had sealed off the significant mould area and were running air purifiers so results were probably not an accurate reading of what we had been breathing in previously.
Other useful information
The following information was again from Rowyns Roots Community (Mighty Networks) and Rowyns Roots FB group and worked well to alleviate some really debilitating symptoms before we could move out of the house. We still use these supplements to support while gut healing:
• Medium quantities of Oxalate containing foods helped with the relentless yeast symptoms. Yeast overgrowth is common in those living in mould and it burdens the PST pathway and reduces sulphate production. (Trying Low Oxalates FB group provides a good list of Oxalate levels in food). My son has been able to eat more Oxalate containing foods since leaving mould.
• Autoimmune Paleo Diet – helped to dampen some PANS symptoms. He can now eat some foods off this diet (eg seeds) without symptoms.
• Supplements to support the PST pathway have been crucial:
• Molybdenum – supported the PST pathway and helped with yeast symptoms
• Magnesium – Children affected by mould need lots of magnesium and in different forms. We found a daily Magnesium chloride footbath was the most effective at getting lots of magnesium on board quickly. We had to start with 1/4 tsp for a few days and slowly increase by 1/4 tsp every few days. We had to go slow because at first because we saw agitation and upset and after a few weeks it had a calming effect immediately afterwards. Also took magnesium threonate, Remag, magnesium chloride spray on the skin. Boron cofactor also needed to help get magnesium into cells.
• Epsom salts – After years of thinking my child did not tolerate Epsom Salts we found that we needed to started at 1/4 tsp everyday in a footbath for a few days and build up very, very slowly as it causes detox.
• B vitamins – We spent years trying to give B vitamins with no success. They were much easier to get on board once we had been doing magnesium footbaths for a few months. If there’s not enough magnesium in the body they can be poorly tolerated. Benfotiamine (B1) was especially beneficial for PANS symptoms.
Other things that helped
• Antihistamines – we used Clarityn daily. Also natural ones like Holy Basil and Nettle leaf teas and Histaminium homeopathic remedy.
• Antifungals – Candex was all that was tolerated whilst in mould. We had to use Fluconazole for 10 days and he was so much better whilst on this drug – another clue that mould may be an issue.
• PANS flares – No/Low appetite and frequent urination (including loss of awareness to urinate). Magnesium footbaths and increased Benfotiamine (a fat soluble thiamine) resolved this Mould can decrease thiamine levels.
• Essential oils: these helped to reduce brain inflammation when we first saw PANS symptoms. They are placed on the back of the neck in fractionated coconut oil. (They must be prepared by manufacturers using stainless steel pans, not aluminium). Frankincense (Boswellia Serrata from Ecodrop), Copaiba (Ecodrop), Brain Power (Young Living).
• Poly Fungal Detox (homeopathic remedy) – we are using this now to detox the body of mold due to possible colonisation in the hope that it will be effective at removing it, as long term prescription antifungals (standard treatment for those colonised by mould) is not an option for us.
Studies/videos
• Mycotoxin Related Autism, A webinar with Dr Campbell (You Tube)
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