Need some help. My son went to stay at his Dad's last weekend
for the first time since being really ill, almost 1 year. This is
because it is a very stressful environment.
While he was there his Dad witnessed a bunch of "zone outs"
where my son will just stare off into space and be unresponsive.
Sometimes this will progress to falling over and lying on the
floor. It is difficult to get him to come to for 15seconds to 1
minute. When he does he is a bit disoriented.
At my house, this can happens after eating big meals,
exercising intensely or if he gets upset or bored.
Occurring 0-3times a day.
This was an symptom that he had during his "big crash" that had
mostly resolved until we started treating parasite recently.
It also doesn't happen if he is getting lots of attention and is
kept alert and happy.
His Dad's house does not inspire alert and happytimes and so his
Dad saw quite a number of Zones Outs as is now telling his wife
that he thinks that the Lyme diagnosis is wrong and that our son
has epilepsy and that he should go back to Children's Hospital a
very NON lyme literate place.
All of this has me defending that these episodes are part of the
process and that they are normal, but it got me wondering if
maybe I'm wrong?
Does this sound like normal Lyme symptoms, or does it sound
bad enough to take him to a non lyme literate hospital?
Please don't tell me to send him to a doc in the U.S. We'd love to
but don't we don't have any more $ for private doctors.
Thank you for any thoughts on this matter.
Posts: 372 | From british columbia | Registered: Feb 2012
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
My son had episodes like this and more (seizures, arms flailing, falling down and facial tics) when we were unknowingly living in a very moldy house.
He also had Lyme, but got better when we moved out of the mold and took nothing with us. Mold stays on stuff so it is important to take nothing if you decide to leave and want to get well.
We fixed our house and my ex refuses to do anything about the mold in his house. My son is genetically unable to detox mold and he CANNOT go to his fathers home or he gets sick.
Not sure if you can order an ERMI in BC. I would call EMSL labs and ask. http://www.emsl.com/
The HLA-DR test checks genetic susceptibility to Lyme, mold and more. If it is covered by insurance, it is good info to have. Only 24% get very ill from mold... so others in the same house can be well and only those genetically susceptible will be very ill.
Part of the reason some refuse to believe their home (or work) can be making them sick. They mistakenly think that if that were true then everyone would be sick.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Even if you're taking a good multivitamin, it's not likely to have much magnesium in it. Magnesium is bulky...a 200 mg tablet is very large. The vitamin pill would be too large to take.
Testing for low magnesium is not accurate, as the blood test measures the amount in the blood, not in the muscle and nerve cells. I think if you're having symptoms of low magnesium, it's easier to take supplements and see if your symptoms improve.
You can also make sure your son is eating foods high in magnesium. Almonds, almond butter Dark chocolate Beans, kidney beans, baked beans, bean soup, bean burritoes, rice and beans.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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We use a topical magnesium rub, and an oral calcium and magnesium (in organic cherry syrup) liquid.
I'm never sure if he is absorbing enough. I'm going to look into some of the products you mentioned, maybe there is a better form to get it into him.
I'm not really sure if what he has are seizure-like. There is an emotional component as they are worst when he is unhappy.
I'm wondering if any lyme adults can relate to these "episodes" and shed any insight.
Posts: 372 | From british columbia | Registered: Feb 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Oh good, you already know about magnesium. When I suggest magnesium, I'm never sure how much the person already knows.
Your description, "...my son will just stare off into space and be unresponsive," sounds like absence seizures.
Low magnesium can cause anxiety and feelings of stress, so when he's "not feeling happy" about things, this may be a symptom that the cells are not functioning well due to the deficit.
I found a site where the mother has done alot of research about magnesium and nutrition and children, as her son had multiple problems.
Before I found out about symptoms of magnesium deficiency, I noticed that I felt better when I ate beans. I was making bean soup so frequently, that my husband asked me to stop. Now I eat bean burritoes.
Pharmaceutical quality fish oil may also help. A deficiency in omega-3 fatty acids may worsen seizure symptoms.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Thanks for the tips. We include lots of magnesium foods in our diet but I didn't know calcium countered magnesium, how interesting.
Still wondering if his symptoms sound within the realm of normal for a lyme child?
Anyone with "brain freeze" or such relate to these symptoms?
Still trying to talk his Dad out of thinking we need to take him to the hospital for these episodes.
Posts: 372 | From british columbia | Registered: Feb 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I would rule out absent seizures/ brain seizures.
I am not thinking epilepsy, but I would want to know if their are seizures, and if so, get on a proper medication for it.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Yes I have looked into absence seizures and my sons symptoms are not like that.
They usually start by him getting a dreamy look, but if I grab his attention then he wont go deeper into it.
If I don't get his attention then he goes to a more zoned out place and either pulls himself out or he continues to zone to the point where he will slither to the floor and look like he is sleeping. It's hard to get him to respond, after a few moments he "wakes up" and is usually grumpy.
People who observe him often say it looks like he is "faking it" as he is in control of his actions to a certain extent.
I know he is really feeling poorly so I don't think it's fake, but perhaps played up a bit as he is a sick child and constantly craves attention.
It usually happens in times when he is low energy, after exercising or eating a big meal. Or when he is bored and grumpy. It's never happened playing computer games for example!
I'm very afraid to go back through the medical system as we have struck out repeatedly and, as we are in Canada, there is only one system and it all points us back to Children's Hospital, where he was handled roughly, refused testing and declared 100% well.
We paid privately to have him diagnosed, but are out of cash for that doctor now.
Posts: 372 | From british columbia | Registered: Feb 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by canadianmama: People who observe him often say it looks like he is "faking it" as he is in control of his actions to a certain extent.
Okay, I've heard of this part. A friend I met in the Lyme Chat had seizures similar to this. She could control her actions somewhat, and get herself to a safe spot to lie down. She was aware, and could sometimes force a few words out.
I think she said this improved with treatment for Lyme.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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He says its like being totally drained of energy suddenly and feeling like he just slows down until everything seems surreal.
This symptom had improved greatly with treatment, but has returned with doing parasite treatments.
Really I'm pretty sure this is just part of his brain fogginess and anxiety. It's just his Dad's wife put the fear in me again and this whole thing is just so stressful. Alway wondering if I am doing the right thing. I wish we could afford a good doc.
Thanks for helping and listening.
Posts: 372 | From british columbia | Registered: Feb 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Another friend in the Lyme Chat said that his sister throught he might be having absence seizures. She'd be talking to him on the phone, and noticed that he'd stop talking for a minute.
I don't remember what he did to decrease this symptom...I might email him and ask him to read this thread.
Does your son know what an aura is? I used to get a visual aura about twenty minutes before I'd get a splitting migraine, called scintillating scotoma, described here.
Some people with seizures get an aura first, but there are several kinds. Check the definition of aura (symptom) on Wikipedia.
Migraines seem to be related to seizures, and some things that help one seem to help the other. Magnesium and fish oil have helped to reduce my headaches and migraines. Keebler has posted that Berberine has reduced seizure activity.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Carol- he says he doesn't see any vision changes before an episode, I'd be grateful for any insight from your friend and I'm looking up berberine. He also tested positive for Lithium Orotate being helpful for him, but darn Canadian government has made it illegal so I'm trying to find a way to get some in the U.S. and drive it over the border.
When my son first got really bad he was often in this almost unconscious state, now it only come only under stress or exertion.
He had 4 episodes yesterday, but he's feeling really low as he played floor hockey at school for 1 1/2 hours the day before.
He is also in a fair bit of pain and is on no over the counter pain killers as they aren't good for his healing. Just baths, massage and supplements.
The other thing is that although his Dad said that he was really worried about these episodes I haven't heard from him in two weeks, so can't be that worried really.
I think I am going to have to just keep the faith that my son is healing, he certainly couldn't have played any floor hockey 4 months ago!
Prayer and happy thoughts
Posts: 372 | From british columbia | Registered: Feb 2012
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posted
He should definitely be checked for epilepsy. Regardless of whether the cause is Lyme, emotions or anything else. For one thing, if he is really having seizures, it could be dangerous in some situations. Does he remember the time when he was out, or is he missing chunks of time? Are his eyes open or closed when he zones out? Do these happen at school or elsewhere?
I would avoid Children's.
Some docs will want to do a bunch of EEG's or even put him in the hospital, hook him up to an EEG for a week, and videotape him. Sleep deprivation, flashing lights, and neuropsych. testing are done to try to induce seizures.
Other docs will try meds after hearing the history. If a med stops the seizures, then it is probably epilepsy, the thinking goes. A more experienced neurologist, or one who is not affiliated with a major teaching hospital, is more likely to take this approach.
Children's will get him to psychiatry, and all kinds of trouble can ensue.
I would stop trying new or non essential meds or supplements to make him better (you mention a few) to simplify and clarify the picture. Many meds and supplements can lower the seizure threshold.
Posts: 108 | From US | Registered: Apr 2012
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