Black mold - seizure and neurological connection?

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Nc123

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Hi,
I was wondering if anyone knows of any doctor or any other expert with knowledge of the neurological effects of living with black mold. Recent events have brought it to my attention that the black toxic mold that was next to my sons head as he slept evey night for 6 years was likely the cause of his early morning seizures but I'm having tremendous difficulty getting definitive proof or any experts whatsoever. We don't have years to wait with this hanging over our heads before more proof comes into the media. I'm sure there is a way to prove this now if we can find an expert. Any help would be so appreciated. :)
 
I am in Maine, not California, but we found out about mold and seizures from an allergist with experience in treating teachers who got sick from mold that grew in the schools after a bad ice storm many years ago.

Our adult son developed seizures out of the blue, we had the air quality tested in his place, and found slight to moderate levels of aspergillus penicillin. It turned out he is not allergic to any molds but is hypersensitive to this one. His seizures were also early morning ones, occurring just before he awakened.
They were about every two weeks, but now that he is into his treatment, he has gone 25 days without a seizure, so we are very hopeful.

I wish you the best with this as neurologists don't seem to consider mold as a possible seizure trigger.
 
Hi Abilene220,
That is so interesting! I so wish I had been able to test the air at either of the homes that had the visible mold and where my son developed his seizures. I tried by having someone give a mold test kit to the current tenant but never heard back so I don't think they did it. If you don't mind me asking, what type of treatment is your son receiving now that is helping so far?
Also, that put a thought in my head when you mentioned the species with the word penicillin. My son is allergic to penicillin as a medication as he developed a bad outbreak of hives when he had it as a baby. I'm curious if there is a connection and it got me thinking. Do you know if your son has an allergy to antibiotic penicillin?
Anyway, I personally would hope that someday your son could move to a mold free place but until then I hope he remains well. :)
Thanks so much for your reply and I look forward to hearing back. If I learn anything new I will be sure to let you know! :)
 
Hello, Nc123. We had a reputable professional to the air quality testing. We found many companies that looked disreputable and/or dishonest. The testing involved testing the outside air as well as air in each of the four rooms. It was $700 and worth every penny.

In response to your question about our son being allergic to penicillin, I don't believe he is.

We are desperately looking for another apartment, but in our town they are hard to find, very hard. Until he is in a good apartment this is all he receives from the allergist: A daily dose of prescription Singulair. We also, on the allergist's advice, bought a device called a Mold Zapper, which boat owners put inside boats they store over winter to keep out any mold.

The naturopath has given him a certain kind of B vitamin along with a couple of other items that help him clear his system of the the enzymes that cause the seizures.

My son is still on his AES meds until he sees his neurologist in early July.

I will post again when we know more. In the meantime, if you think we can give you any more info, please let us know. Private message is fine, too.
 
But this article is 12 years old and though it certainly has some valid points, it seems to have its own bias or at least a narrow focus.

My adult son developed seizures suddenly, seizures that have been significantly mitigated by the treatment of a mold expert, an M.D. who tells patients up front he is not interested in being involved in any litigation. These seizures have not been mitigated in any way by conventional neurology.

Over about 16-18 months my son's seizures occurred predictably every 10-14 days just before he awakened. His AES meds did nothing. Each time we reported to the neurologist that a seizure had occurred, my son was told to up his meds. He eventually ignored such advice.

Though he is in the early stages of treatment with the mold M.D. he has not had a seizure in 28 days. You can imagine our happiness---and our hope that this treatment will end the seizures and that he can eventually come off his meds completely.
 
Abilene220 said:
But this article is 12 years old
Click to expand...

It may not be particularly new but if there have been no valid studies (& I haven't seen any) to show results either way since then, it is still good knowledge and they make very good points that do not have a "best before" date.

Also, I saw no bias.They presented facts rather than opinions or anecdotes. This doesn't mean they don't have their biases (as we all do) but by keeping the discussion on the facts they definitely minimized the possibility of bias.

I also think they pointed out very well how people often do base assumptions on unproven stories or non-science.

Thanks for the link Kirsten
 
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I have waking seizures, spasms and numb hands - pls help

Abilene220 said:
But this article is 12 years old and though it certainly has some valid points, it seems to have its own bias or at least a narrow focus.

My adult son developed seizures suddenly, seizures that have been significantly mitigated by the treatment of a mold expert, an M.D. who tells patients up front he is not interested in being involved in any litigation. These seizures have not been mitigated in any way by conventional neurology.

Over about 16-18 months my son's seizures occurred predictably every 10-14 days just before he awakened. His AES meds did nothing. Each time we reported to the neurologist that a seizure had occurred, my son was told to up his meds. He eventually ignored such advice.

Though he is in the early stages of treatment with the mold M.D. he has not had a seizure in 28 days. You can imagine our happiness---and our hope that this treatment will end the seizures and that he can eventually come off his meds completely.
Click to expand...

Thank you for sharing this about your son's seizures, I have seizures that wake me up, spasms and numb hands - only abate after 1 or 2 minutes of me trying to move my hands. I have had a lot of mold exposure, also ticks, but no borrelia in any of my tests. Please can you share more about what medications or supplements helped stop the seizures and how your son recovered? I am very concerned and my scans show nothing, neurologists dont know what is going on.

Hope to hear back from you.
Thanks,
Luke
 
I am afraid the rest of our story might disappoint you. My son's seizures continued with the doctor treating him for mold, and we even tried a very devoted and well-informed naturopathic doctor. My son's seizures came less frequently but never stopped. They were nocturnal tonic-clonic seizures that made him feel terrible for a day or two afterwards. We had to keep looking for help.

We ended up going the conventional route, so he is now on a pediatric dose of Lamictal, which is working 100 percent. When he tried after a year to go off it, he had a daytime seizure.

This small dose of Lamictal has no side effects for him to speak of, but he had to fight his neurologist to keep the dost at this level. I've no idea why: if the dose is working, why up it? This experience has given us some concerns about neurologists, but at least my son is doing well. I will say he was first put on Keppra, which gave him dreadful Kepp-rage, thought it works well for some people

I would not rule out either traditional doctors nor holistic ones and would never stop seeking help; there is too much we don't yet know. I will say some doctors see the mind-body connection as being important in seizure disorders. If that interests you, you might read the book Molecules of Emotion, a hard read, so maybe reading a summary would be a good idea.

I wish you the very best.
 
Oh, where did you learn that? Do you know of any good research that proves a link between mold and seizures? I have found no doctors who support that idea and would love to find some who do.
 
epileric said:
It may not be particularly new but if there have been no valid studies (& I haven't seen any) to show results either way since then, it is still good knowledge and they make very good points that do not have a "best before" date.

Also, I saw no bias.They presented facts rather than opinions or anecdotes. This doesn't mean they don't have their biases (as we all do) but by keeping the discussion on the facts they definitely minimized the possibility of bias.

I also think they pointed out very well how people often do base assumptions on unproven stories or non-science.

Thanks for the link Kirsten
Click to expand...

I found one on NCBI, which may be the only open access one that coping-with-epilepsy can access. I went on AcademicSearchComplete, Discovery, and GoogleScholar and this is what I found (I searched "seizures" and "mold" under academic journals):

"The Neurological Significance of Abnormal Natural Killer Cell Activity in Chronic Toxigenic Mold Exposures" by Ebere Anyanwu, Andrew W. Campbell, Joseph Jones, John E. Ehiri, Akpan I. Akpan

"Brain abscesses resulting from Bacillus cereus and an Aspergillus-like mold" (discusses the presence of seizures) by Psiachou-Leonard E, Sidi V, Tsivitanidou M, Gompakis N, Koliouskas D, Roilides E

And there was a book on Google Scholar that I'm not going through...

NCBI, Mayo Clinic, and Johns Hopkins have libraries that are open to the public.
 
I'm curious if you found out any information? I've had epilepsy since I was 17, been controled by medication for years now. Recently, Around the same time of year, I have been having increasinly violent granmal seizures that have been lasting longer and longer. There was a water leak and I know my land loard didn't clean up the mosture under the house.
 
I wish I could tell you more. Our son was tested for allergies and came up allergic to aspergillis. For a while we thought that was the answer and we made sure his apartments were tested for mold and air quality; that was not cheap. It also was not helpful. His mold allergy was diagnosed three or more years ago, and he still has seizures. Fortunately they have been pretty well controlled by AED meds.
I wish you the best. I wonder whether an allergy is going on with your seizures. You seem to wonder, too. Our allergist warned us that fall and spring might cause more seizures, but that was before our son started on AED meds.

I wish you the very best. Seizures are tough.
 
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