"No matter where you go, there you are"

So today and for the past week we have been selling our worldly possessions, Craigs list, Ebay, and then this morning a Garage Sale.

We have been in the USA for 4,5 years and our Visas run out May '11 my husbands employer wants him back in the UK to manage things in Europe now. We have taken this opportunity to make a clean start, sell everything that could have possibly be contaminated by the mold, and live simpler lives.

If there is any slim chance that Annabelle could be still affected by the furniture that was in the house and if it means that we have to get rid of it, we are willing to take that chance by getting rid of it. Our daughter has done so well since we have moved and her life is far more important than a couch that we own or the clothes that we wear.

At the moment we are trusting God to lead us he has promised that with Him all things are possible and I believe he is showing us the way we just have to listen to him.

The title of this blog "No matter where you go, there you are" I never really understood it until recently I was chatting to Elinor, Annabelle's Feldenkrais practitioner, and it came up, Yes we are moving back home, yes we are leaving everything behind, no we are not trying to run away, we are still who we are, we still have deep feelings of sorrow for what has happened to our daughter and to our family, we have had to face some hard stuff, loss of our health, our home, our worldly possessions. But we still have each other, we still can laugh, cry and love. And most importantly we have God to help us through.

Amen.

Mold Case Part 4

Previously on Mold Case Part 1 and Part 2 and Part 3

We were ready to leave it all behind.... what have we decided to do?
Read on and you will find out.

So last Thursday we drove up the coast 3 hours to get to Santa Barbara (wow California is beautiful! You tend to forget how beautiful when you are rushing to therapies every day!) to go see a Doctor who is a mold specialist. She was affected by mold sickness herself and now treats mold patients. I had sent her all the test results before hand so she could revise them, so after a short history she started to do an extensive treatment plan (5 pages) for Annabelle, here's a shortened version:
She said Annabelle's body has been subjected to many toxins and is like a barrel that is filled to the brim and possibly over flowing. Her body is finding it difficult to process and eliminate these toxins and to develop at the same time, so what we need to do is eliminate all toxins in her environment and also try to eliminate the toxins inside her body too, to help her heal.

Environmental controls

1. Avoid exposure to water damaged/moldy environments
2. Avoid exposure to pesticides, solvents/VOC's (paint, carpeting, adhesives furniture, cleaning products personal care products, smoke, traffic pollution, Plastics, heavy metals, Dry cleaning
3. Clean all household with baking soda, vinegar, Borax including clothes.
4. Organic diets minimizes exposure to pesticides and other contaminants
5. Filter drinking, bathing and washing water
6. Use a triple element air filter
7. Create bedroom sanctuary un-carpeted room with healthy non-contaminated bedding and sleeepware
8. If outdoor air quality is good spend as much time outdoors
9. Spend time daily in sun without sunblock

Just to add this in for those who don't live in California this is a fumigation tent that is put over the whole house and pesticides are pumped into the house and left there for 16 hours then they take the tent off and it kills all the bugs. This is what I came home to on Friday morning, this is the house next door and this is after the Doctor had specifically told us to avoid pesticides well to say the least I freaked out.

We called the company and made sure they secured the tent down properly so that none would come over to us they assure us they would. We closed our windows and went out the whole day when the tent came off so that we wouldn't breath in any of the pesticides! This is just one of the challenges we have faced this past week.

Internal controls

She has also prescribed Cholestrymine (this will help bind the mold toxins in her system and excrete it in her stool) to be taken with Charcoal also a binding agent
Nasal Fluconazole spray for her nose
Ketoconazole shampoo to be used all over her body for the rashes she has.

She recommended this great soap which we all tried tonight its by Collective Wellbeing Detox Charcoal Cleanse Soap  we really felt good after using it

Warm Epsom salt baths with 1 cup of espom salt per bath

Sauna therapy ideally with far infared sauna

She also has given us Nasal glutathione to be used in conjunction with the glutathione cream

Supplements - she has recommended an whole bunch of new ones to add to the ones she is already taking I will be taking that slowly introducing one at a time.

We talked about what to do with our furniture and she recommended we get in touch with Jack Thrasher Phd which we did. He did not say yes or no directly he said that mold affects different people in different ways some people will be fine taking their stuff and would have no problems others who are more sensitive would not be fine with taking their stuff. This includes clothes even after washing them. Which we did take with us. And until we go away and leave our stuff, clothes and furniture we will not know how badly its affecting Annabelle just like we didn't know how badly the house was affecting her before we moved.

In the mean time while we make up our minds about what to do we have done a huge clean, washing everything in Borax and wiping everything with hydrogen peroxide. Making her bedroom a sanctuary.

Watch out mold spores your days are numbered!

Mold Case Part 3

Previously on Mold Case : Part 1 and Part 2 we had fired the environmental doctor that we were seeing and had gone back to see our HBOT doctor who had ordered some tests to see if the mycotoxins from the mold were in Annabelle's body.......

Well the results are back.... read on to find out what they are.


I grew up in South Africa and lived there until I met my husband who was working in South Africa from England on a 2 year contract, well needless to say we met, fell in love, got married and we decided that we would move to England because of better job prospects for my husband and I. So we had all our worldly possessions packed up, and shipped in a container to England. The container took 8 weeks to get there, living out of a suitcase for 8 weeks is pretty hard but we managed and we were really grateful to see "our stuff" again. Being in a new country is really challenging but being around furniture and stuff that I recognized helped me through, it comforted me when I was so far away from my home country and my family.


We settled down and decided to start a family and  after 41 weeks of being pregnant and 13 hours of labor, Matthew was born. Things were going well and then my husband comes home and says " How would you like to move to America?" He had been offered a job to head up a new business in the USA and the head office was in California, he went on a 2 week trip to see what it was all about and left me at home with a child who had just contracted chicken pox so I was confined to our home for 2 weeks! What fun.


Well our possessions were packed up once again (I'd hate to know what our carbon footprint looks like!) and shipped to California where we moved to our previous house that we moved from because of the mold issues. We decided to have a second child, I fell pregnant and 9 weeks later I lost the baby to a miscarriage, we decide that we were going to try again and 42 weeks later and only 6 hours of labor Annabelle was born.


Well what I am trying to get to really is that no matter where we moved to I always felt I could cope with the stress of living in a new country because I always had "our stuff" with us.


The test results are back and here they are :
Aflatoxin 0 ppb (NP)
Ochratoxin 4,9 ppb (P)
Tricothecene 0,47 ppb (P)

NP - Not present
P - Present
So to explain this result Ochratoxin is the mycotoxins that are produced by Aspergillus/ Penicillium and Chaetomium, that figure is quite high amount in her system.
The Tricothecene is the mycotoxin that is produced by Stachybotrys, that figure is low.
These were the 4 prevalent Molds found in the house by the air quality tests that were done so she has been exposed to the mycotoxins and they are still in her system.


So when we left the house just as a precaution we decided that it would be prudent to start some sort of detoxing, so we decided on Modifilan Brown Seaweed and is known to "Detoxifies the body from heavy metals, radioactive elements, free radicals and toxins."We felt great better than we had in months but then after a month the detoxing kicked in headaches, mood swings and dizziness. Eventually things smoothed out and we started to feel better again.

We got the test results so now what? I emailed Andrea over at Our mold Journey and asked her that question? She recommended we see a mold specialist and recommended a good one who is in Santa Barbara, I have already had 2 phone calls with her and we are heading up there on Thursday. The other part of Andrea's email was "You have done the most important treatment possible and that is leave the environment. (Do you have anything from the house with you? It might be good to store those items)…" She added her post that she had written on the subject which was a real eyeopener. Well as you know we had packed up all "our stuff" after wiping it down with Lysol wipes and moved it to our new house with exception of soft furnishings, rugs, soft toys which we threw out. Supposedly this is not good enough mycotoxins are so small that 20 million 5 micron spores would fit on a postage stamp, scary stuff!

Well when I really started to think about it did we get everything? Eveything was such a rush to move, then I thought Oh no! our broom was something we brought with us that was used in the other house and we've been sweeping the floor in the new house did we bring the mold with us? Do we have to get rid of all "OUR STUFF" for the sake of our health? That comfort of knowing that even being in a foreign country I have "my stuff" with me gone, how would I explain to my six year old he has to throw away his lego's because its making him sick? Even worse how do I explain to Annabelle, she loves brother's lego's?

Mold Case Part 2

Previously on Mold Case...... 

So we last figured out that I have an allergy to mold, now there is a difference between just having a plain allergy to mold, this is where you will get common allergy type reaction or symptoms when exposed to mold, or having a toxic reaction to mold. Now 25% of the population because of genetic differences will experience more than just your average mold type allergy symptoms, but will experience the toxic effects of toxic mold. Symptoms ranging from runny nose, cough, shortness of breath, wheezing, chest tightness, itchy eyes, nosebleeds, urinary problems, nausea, vomiting, abdominal pain, nervous system problems such as dizziness, anxiety, weakness, restless legs, metalic taste in mouth, low blood pressure, headaches, memory loss and shaking. Memory loss, nosebleeds, anxiety, shaking, nausea and vomiting are not typical allergy symptoms, all the symptoms that are in blue above where symptoms experienced by one or the other of my family.

My son Matthew, since we moved to California has had nose bleeds, we always thought they were due to the dry air in So Cal (it doesn't rain much here in So Cal) we tried everything, saline spray, creams, gels, vitamin k, they all would help for a certain time, then the nose bleeds would come back full force sometimes 3-4 nosebleeds a day. When I first started to read about mold toxicity I read one of the symptoms were nosebleeds this was what set alarm bells ringing in my head.

I can't remember exactly when but I think round about March or April of this year Annabelle started vomiting, the therapist at vitalstim thought possibly I should feed her smaller pieces at a time and that I should go slower (gees sometimes it would take an hour to get a small bowl of food down her if I went any slower I may as well not have fed her, then sometimes she would still puke it all up again) we would get so desperate at times because she wasn't gaining any weight, we even considered that Annabelle would need to get a g tube so that she could get in enough nutrients. I discovered that she would feed better in her car seat so I made a point of not even feeding her breakfast at home,  I would go to our therapy appointments then afterward feed her in the car she seemed to do better there.
The nosebleeds and vomiting seemed to have stopped since we have left the house.

We went back to see the environmental doctor to get the results of the urine test he said will give us some answers, it came back and Annabelle seems to be very deficient in all the B vitamins her immune system is down and they recommended that she takes large quantities of Vitamin C. She needs CoQ10, Lipoic Acid, Carnitine, Mg, Mn, Argnine, Biotin, and the scariest thing about the test is that the doctor said that her DNA was under attack, the test was inconclusive as to what was attacking her DNA but it was under stress.  His recommendation was that we start giving her a multivitamin, (which when I got it home and compared the ingredients to the one she is already taking it is pretty identical) The doctor says it could possibly be the mold attacking her system and we could do another test ($900) that could pinpoint if it is the mold causing the damage. Well I just about had enough of this doctor why could we not have done that test in the first place? Is he just dragging things out so that he gets in lots of visits? Well I fired him, just like Katy does in her post here, and not going back, we really don't have time for people to waste our precious time and resources.

So we went back this past week to our previous doctor the one that recommended HBOT.
I updated her on the situation and here were her recommendations for Annabelle
She said to stop taking all multiple supplements and introduce one new one at a time and the ones that she is most deficient in first
Methylcobalamin B12 - 2500mcg a day
Folate MTHF - 1000mcg a day
Culturelle Probiotic - 2 a day
Glutathione cream - 1 ml to skin at night before bed ( if you don't know what this is check out the link)

She also recommended a mold allergy test
and also agreed to do this test I found,  Urine test from Real time labs that will tell us if Annabelle has Mold toxins present in her body, so just waiting for the test kit to come and so wait and see in mold case part 3 for the results.

Annabelle busy raiding brothers Lego box

Mold Case Part 1

Talking about TV shows, my all time favourite TV show "House" is starting its new season on the September 20,  I love this show, it has everything humour, romance, suspense, drama, oh did I mention humour. Well you get the drift but my favourite part is when he always seems to be able to diagnose the patient, even if the patient is dead. He will send his team out Foreman, 13 or Chase to the patients house (even if they have to break in!) to find out more about the patient and get a history. Taking samples of anything toxic in the house, sniffing around bottles, riffling through drawers. Well you would never have guessed no doctor has ever come round to our house to get a history on Annabelle or even broken in to get one. I wish more doctors were more like Gregory House may be, just may be we would have a diagnosis by now!

So the last you heard about the mold we had seen an environmental doctor and he had ordered a urine test that was going to give us some answers.

I also went to see the environment doctor, because I was also having symptoms and he said that if it was the mold causing the problems I would be a good person to test, (being an adult I can take pain better not!)
Well his first suggestion was to do a CBC blood test, the second was to do an allergy test this is where they inject minute amounts of dead mold under your skin and see what reactions you come up with. Well I would not recommend this test for to anybody especially if they are allergic to the substance that they are injecting, the first injection I started to feel dizzy, then she would wait 10 minutes and see what symptoms would appear then inject me with a lesser dose, the injections felt like fire going into my arm stinging like you won't believe, other symptoms I had were my left hand itching, my chest becoming tight, and started coughing, my nose burning, and it also felt like I had taken recreational drugs I was so woozy (Note to Mom "not that I would know what that feels like I just could imagine")  2 hours after the test, my arm swelled up like a balloon. They injected me with the 2 types of molds that was prevalent in the house, which were ( the first line on my arm) Aspergilus/Penicillium and (the second line on my arm) Chaetomium. In the first picture she drew round circles on my arm where the liquid had gone in just in case I had no reaction, then they would know where it originated from.

.

The photos really don't do it justice, my arm felt like it was on fire, it still itches now when I think about it. So guess what? I am allergic to the 2 prevalent types of mold that were in the house. The results of the CBC were that my white blood cell count was low. This still doesn't tell us did the mold affect Annabelle? Well you have to wait for Mold Case Part 2 coming soon.

Not just the girl next door

Well the saddest part of us moving house became apparent yesterday when our ex-neighbors contacted us, they had been out of town on vacation when the mold saga occurred and we had moved by the time they came back.

When their daughter Siyah found out that we had moved she began crying,  every day Siyah would call from her gate "Matthew,  Matthew,  Matthew" and my son Matthew would run round to their house and play.

She loved Matthew and would include him in her prayers at night. She had a small crush on him to say the least, she was devastated to find out we had moved, well to be more accurate that Matthew had moved.

Living in a cul de sac was great because all the children would play, ride their bikes and scooters in the street. Life was good until the bitter sweet twist of fate, mold fate, wreaked havoc on young love aaahhh........

Luckily we have only moved about a mile away and I am sure we will have a play date soon.

Mold update

After a hard day packing up our worldly possessions, with two wonderful cleaning ladies and my parents in-laws helping us, we managed to get everything packed in boxes.

Tomorrow we move a mile down the road to a new house.

A nerve wrecking week of searching for a new place to live, with trying to stay in the same area so that my son does not have to change schools, and also staying in a one bedroom hotel all four of us, all week, my nerves were shot! We eventually got a call Friday morning (thank you Jesus) that we were accepted, and we get to rent the house we wanted.

Tomorrow we move in, hopefully a clean start, MOLD free!

This means tomorrow morning before they take our furniture to the new house, we have to wipe down every surface just in case any mold has settled. I don't want to be taking the mold with us. We have already thrown out any soft furnishings because it is very hard to get mold out of those by just wiping them down.

Annabelle has taken everything in her stride this week, only had one melt down in all that has been happening (which is pretty good for her even in a good week she can have more than one) she has been eating well and is quite happy, we suspect she is happy to be away from the mold or may be she is happy because mummys happy to be away from the mold, who knows?

We have seen yet another doctor, he specializes in environmental medicine so in other words things that make you sick from the environment, he has recommended a urine test for Annabelle this will test if any mycotoxins are coming out of her body through her urine, the results take 3-4 weeks I will keep you posted, next hurdle actully getting urine out of my daughter, who ever invented those pediatric bags to collect urine in babies was obviously a man because they do not work on girl babies.

Well see ya next post will be from the new house.

The Mold Truth

No doctor has ever told us Annabelle will never, walk, talk, sit ect. No doctor has ever given us a prognosis, for them to be able to do that they first need to have a diagnosis. We don't have a diagnosis!

I read other moms blogs about how they were told there child would be a vegetable for the rest of their lives and never do anything and their child every day proves that doctor wrong by sitting, walking, talking.

We saw 2 new doctors at the beginning of this year and they ran some more tests, we did an EEG and a repeat MRI (the MRI we did at 6 months old was normal) from all of that we got that she had an abnormal EEG but she has no clinical seizures, and the MRI showed that she has a metabolic condition causing things to happen in her brain. All he other tests came back normal the last test that hasn't been done is a muscle biopsy where they cut a chunk of muscle out of your child's leg to see if the child has a mitochondrial disorder. May be all along the problem was right under our noses!?

Well here we sit in a hotel room because at present we are homeless, what started as a leak in the upstairs bathroom has now become a huge problem, walls being torn down and Mold found
behind those walls, and its been going on for a long time. When the remediation company came
in to start the work the guy said to us that we have to be so careful because mold is very
toxic and especially with young children, could cause problems with their development.
At that point he did not know about Annabelle.
Well alarm bells started ringing in my head and what did I do, I went straight to the Internet that place you go to when you want to "scare the hell out of yourself!" especially if you have an undiagnosed child.

Loads of sights come up scaring me more as I read what do I do, who do I call? Should we do tests? what tests? It's all a bit vague with no clear direction.

So I email the doctor that we have been seeing that prescribed HBOT, ask her what to do, she recommends that I call J to come in and do some tests in the house, we stop the remediation company from tearing down any more walls. J comes in the next day and does some air samples. He is also appalled at the poor set up the remediation company had and was really worried they had spread mould all over the house not just in the family room where the damage was.
The test results come back and yes there is mould in our house mostly in the family room and in his report he is most concerned about one type that is hard to capture and there was quite a high amount in the air. It's name I can't recall now but starts with a C, I google it and low and behold it possibly could cause neurological problems. We have been in this house 3,5 years, I was pregnant with Annabelle, she was just a small baby when I brought her home, all these things are going through my head, could this mold have caused all her problems no, no, no, stop yourself your hypercondriac self is showing up have we all been affected? My son suffers from chronic nosebleeds is that a side affect I have been coughing, sneezing since they came in and tore down walls?
OMG will this nightmare never end, will I never have peace, will I be searching for answers for the rest of my life!? This is the Mold Truth!