May 7, 2016 at 12:30 am #235
What causes constipation and how is it associated with seizure?
October 14, 2016 at 11:57 pm #475
In my daughter’s case, it seems to be her main trigger. She’s ten years old–around 8 1/2, almost 9 when all of this started.
About a year and a half ago, she began having myoclonic jerks in her upper arms–mainly her right arm, with her left sort of following in a reflexive manner. They would stop her in her tracks usually, though rarely at times she seemed to be able to stop them or to continue doing what she was doing with her left arm while her right arm was jerking up into the air. She also began coming down with all sorts of illnesses. Flu A and B, Strep three times, Pink Eye, croup, UTI’s, sinus infections, migraines that would usually progress until she vomited, stomach bugs, nosebleeds, ear infections, you name it–she had it. She was on seven broad spectrum antibiotics in as many months (the seven before her first TC), ten in the entire fifteen months before the first TC. She had reactions to two of them, Zpac and Bactrim, vomiting profusely with the Zpac (which she took twice and had taken a couple years before, doctor prescribed Zofran to help her keep it down) and with the Bactrim, she developed hives. I took her back to the doctor for the reaction and she fainted while we were there. He never commented one way or the other about her fainting, nor did he include it in her chart. He also told me to continue the Bactrim since she only had a couple more doses left.
I will never forgive myself for allowing all of this/giving her those antibiotics. My only defense, because I KNEW better, was that she was SO sick and we were terrified as to WHY, and she had missed over 40 days of school last year and they were threatening to take us to court. Ugh.
The course of Bactrim was the last straw for her system, I think. The myoclonic jerks had gotten a lot worse. To top everything off, about two weeks later, we found a pretty substantial case of mold behind our water heater, which is located behind our HVAC system, completely closed in behind our closet. If there was any comfort in that whatsoever, it might have been that we then realized what had been contributing to her being so sick.
A week and a half later, she had her first TC, with sixteen more to follow in the next three months. It took me about a month and a half to gather my wits about me and see through my terror to try to figure out what was going on when she was having these episodes. I hate the word seizure. Hate it.
She had a (normal) CT scan, (normal) MRI, 20 min EEG, and a more than 48 hr. VEEG. The 20 minute, which was done the morning after her second episode, was abnormal, whatever that means I was never told, other than she had no reaction to the strobes or to hyperventilating. The VEEG showed only abnormal sleep spikes, even though she had two episodes each of arm jerks and finger twitching. I’ve had to insist on most of these tests–the MRI, magnesium levels, etc. (They never tested her mag levels once in all the times she was at the ER or at the five days she was in the hospital. When she was in the hospital for the VEEG, I told her neurologist her history, all the illnesses, the mold, the antibiotics, and before I could even finish, he was shaking his head no, that none of that could be what was causing her “Idiopathic Juvenile Myoclonic Epilepsy” which is the diagnosis we left with. But by all means, he said in the same breath, get her immune system built back up and it will probably raise her threshold. Really? Really?!
They prescribed her Keppra, which they quickly raised to the maximum dose because it wasn’t helping her. We have since had to lower it from 3000mg/day to 2500mg/day because she has lost about ten pounds.
I’m not entirely certain all of her episodes have been full TC’s. With most of them, she remembered things we said and did, and during several, she started crying in the middle of them. And she seems to go backwards, in that the shaking comes before she stiffens up. They always start with her right arm. She will have the arm jerks sometimes now without going into a full TC, but she’s never had a TC without the arm jerks first. In my research in trying to figure out how to help her, I found that a reflex point for the Ileocecal valve is the upper right arm. In between the arm jerks, (sometimes it can be seconds, sometimes a minute or two) before she loses control of them and they go into the full(?) TC’s, we noticed that she either tells us that she has to go to the bathroom, or she passes really bad gas. We finally figured out that these only seem to happen when she is constipated.
We have significantly changed her diet. No grains or pasta, only very little white potatoes. I am also giving her High Ig colostrum, probiotics, soil based organisms, Lysine and Taurine, digestive enzymes, Serrapeptase, food based B complex, Vit. D3 and K2, and a food based multi-vitamin. She went three weeks with no activity, and I thought that I would let her try some organic brown rice waffles. She seemed to do okay with them, and so I let her have one for breakfast for the next two mornings, with organic butter and raw honey. By the third one, that afternoon, I realized I’d made a mistake and two days later, she had three TC’s in one day. In between each one, she went to the bathroom and then went again when she got up the next morning. No more grains, I thought, and she’s seemed to do fine since, until she had to have bloodwork done, which absolutely terrifies her, and she got really lightheaded. They gave her a Sprite and it was two days before she went to the bathroom after that. So, now I’m wondering, along with what is probably a bad SIBO issue, is there some sort of fructose issue also? Luckily and thank God, she was able to deal with this without any activity and we are almost a month activity free. I have also ordered CBD oil, against her neuro’s advice, who after the last episodes wanted to start her on Onfi. Her dad and I refused.
Milk/yogurt/cheese, dairy doesn’t seem to bother her. Her ova/parasite test was normal, as was, they said, her stool sample test.
I insisted on being referred to a pediatric gastroenterologist, who ordered Xrays. We just got the email results back today, though I haven’t spoken to the Dr. yet, that show constipation but I have no idea yet to what extent. In her notes, she is recommending Miralax. I have asked for a SIBO test, but she is insisting there is an order to the tests she wants to do before we get to that. At this point, added to my own experience throughout my life, I’m pretty sure there are no human doctors, simply trained robots.
October 15, 2016 at 3:33 pm #478
I forgot to add, another thing that makes me think that these are not actually *starting* in her brain–
One night, just before one of her TC’s, I was laying beside her with my arm on her chest and we were both almost asleep. I moved my arm because I could feel it getting too heavy and as soon as I did, she immediately began having the jerks in her right arm. It then, about half a minute maybe less, later, went into a TC. Makes me wonder if the weight of my arm was pressing on the nerves in her abdomen, keeping it trapped there, so to speak, and moving it allowed it to travel to her arm and up to her brain.
Someone tell me I’m not crazy, lol. Everyone, except for maybe my husband, thinks I am.
October 17, 2016 at 4:20 pm #485
So, the doctor’s office called and they want to do a Dulcolax/Miralax clean out since her X-ray showed she was constipated, then follow with a maintenance dose of Miralax everyday. Still no opinion yet from her about the possible fructose issue.
I do know that I’m getting very tired of being mocked by these doctors for wanting to go as natural as possible in treating my daughter. So frustrated today.
- This reply was modified 2 years, 4 months ago by SavannahsMom.
October 17, 2016 at 6:04 pm #487
Well, no surprise really, I mean, right off the bat I could tell this doctor wasn’t going to care to look beyond the end of her nose, though I can’t seem to stop it from upsetting me nonetheless. She doesn’t think the constipation is related to anything else going on with her, doesn’t think any further testing is warranted, etc., etc.
Follow up Wednesday with her pediatrician. Guess we’ll see what her thoughts are on getting a second opinion.
Does CBD oil help with SIBO and/or malabsorption issues?
October 17, 2016 at 6:21 pm #488
What a difficult journey, but it seems with all your effort you may be on the right path. The fact that you’ve noticed a gut-brain connection is profound.
Have you done a microbial DNA stool test like uBiome to know microbial balance?
Constipation is associated with low gut levels of serotonin. This might correlate with brain levels of serotonin where tryptophan is precursor. Low brain serotonin is associated with glutamate excitotoxicity. This may be a very important reason constipation is associated with seizure.
Please search the Diets for Epilepsy and The Gut Club facebook pages for more information about constipation associated with seizure. It’s also part of Parkinson’s and schizophrenia. You have every right to be frustrated with doctors in disregard of or even oblivious to gut-brain connection.
Which probiotic are you using?
Things to help treat constipation:
sodium ascorbate vitamin C
apple cider vinegar
October 17, 2016 at 6:24 pm #489
Perhaps the best fiber is magnesium-rich dark leafy greens feeding protective Lactobacillus. Things like watercress, arugula, parsley, kale, spinach, etc.
Mechanical stretch related to seizure is something I’ve been considering a long time . . . and here it is . . . I heard about an expeirment with rats where a balloon inflated in the intestine caused seizure . . .
October 17, 2016 at 9:33 pm #491
Interesting you believe constipation may be causing seizures; I would look at a little more closely at the health of the gut. The autonomic nervous system controls bowel movements and now research is showing a two way path between the autonomic nervous system and the central nervous system via the vagus nerve.
Bacteria plays an important role, oir foods today are genetically modified and don’t carry many nutrients which very well may lead to constipation.
Doing a clean out with miralax or any other product containing polyethylene glycol has a few pros/cons;
The only positive I can think of, hopefully constipation will be behind you once the slate is clean.
The negatives are numerous; polyethylene glycol is nothing more than a chain of ethylene oxide; back in 2008 the FDA tested 8 lots of miralax and found ethylene glycol and diethylene glycol in all eight(8) lots they tested. Both are quite toxic.
Our son was diagnosed with temporal lobe epileps(TLE) in May 2014. After trying three(3) anti-seizure medications we finally decided to see a naturopath; she did a couple tests; Great Plains Oat and a stool sample. Come to find out he had little, if any, good bacteria in his gut. Once we started a couple supplements, his defiant disposition came back around and his seizures stopped in May 2015. It was a very trying year; one that saw us in the hospital in January 2015 to do a clean out with an NG tube and golytely(polyethylene glycol). GI told us “your son will be fine”. He had twenty one(21) seizures over the next nine(9) days. That wasn’t “fine”. Lastly, our first anti-seizure medication was trileptsl; it triggered additional seizures, come to fine out it contains polyethylene glycol.
October 17, 2016 at 9:42 pm #492
My son is 9 and has severe epilepsy since birth. Until recently he would have daily seizures – especially after waking. His seizures might involve spasms around the abdominal area. But of course this is a muscel spasm (same as someone might have a jerking arm). But the surprising thing is that when he is constipated he does not seizure. It seems some sort of a mechanism that if he feels very unwell with severe constipation – he will not seizure until he feels better after the constipation is resolved. He has severest constipation since he turned 6 (do not know if severe constipation and constant hiccups related to vns implant or to the many drugs he is on but i suspect that one of these is the culprit). Since starting with a special cannabis oil to treat the seizures (and this oil has diarrhea as a side effect) both seizures and constipation have become better.
October 17, 2016 at 10:56 pm #493
I truly believe a diet that involves processed foods along with GMO foods has a lot to do with the constipation epidemic we are seeing. Not too mention, the increased number of vaccinations our children are receiving, the gut of these very young children are being annihilated with all sorts of chemicals.
October 18, 2016 at 5:12 pm #494
I agree about the GMO foods causing a lot of problems, especially in children. I won’t say that we don’t eat any GMOs, but that is one thing that I have tried to avoid since I first found out about them, when she was about two. I agree about the vaccinations, also. She is up to date on hers, but due for the rest when she turns 11. I’m not sure how her new pediatrician feels about them–her old one wouldn’t take you as a patient if you didn’t get them, but she will not be getting the rest, not with all of this going on.
Keith, I haven’t gotten a comprehensive stool test done, though I want to. Money has been pretty tight. My husband was laid off from work for about two months because he missed so much during all of this. He’s been back a few weeks now and we are slowly getting back on track, so hopefully very soon.
I just read today that Zofran and Azithromycin aren’t supposed to be given together. And also that Zofran is an SSRI. She has always had that reaction to Zpac, everytime she’s taken it, and he has prescribed the Zofran every single time. I don’t know why I never looked that medication up. I do and have every single one of the rest of them. She has had issues with being able to fall asleep for several years. Keith, you saying that about Seratonin and the gut makes me wonder if taking that didn’t start something, messing with her seratonin levels.
Monsmom, for about three months, my daughter would get hiccups 7-8 times a day. They’ve slowed way down now, to maybe just a few hiccups every few days. I asked her neuro because I knew it had to be related to what was going on but his response was again to shake his head. “Everybody gets hiccups.”
Keith, I am using Epic Pro probiotics from Swanson right now. It’s a 25 strain, 30 billion CFU, and also the Swanson Ultra soil based organisms with trace minerals. I’m wondering if I shouldn’t stop these until we at least get her cleaned out though. Yesterday morning, before she woke up, she was very restless and had some mild facial tics/twitching going on. I could tell she needed to use the bathroom, and shortly after waking, she did go. She will lightly run her fingers over her stomach in her sleep and I read that tickling helps with constipation. Makes me wonder if subconciously, she is trying to get her bowels moving. Might explain the restless legs she’s had for the past year or so too.
I am leaning towards castor oil to attempt to clean her out. I am terrified of moving things too fast and causing any problems. So much going on. She is going back to school soon but I want her on the CBD oil for at least a couple of weeks first, to see how she is going to do. I was planning on starting it yesterday but her neuro wants pics of the label first so I’ve got to get that sent in.
Nomorepeg, do you mind sharing what supplements you used? Is your child taking anything now?
Sorry for the long post and so many questions!
October 22, 2016 at 1:01 am #499
Please keep in mind what works for one person may not work for another person. If your budget allows I would suggest seeking out a functional medical professional to guide you in your search for better health.
Our son was diagnosed with epilepsy in May of 2014; we tried three anti-seizure medications. The first one seemed to induce additional seizures(trileptal). We switched about 30 days later to keepers and finally to depakote. Nothing controlled his seizures; not until we started 3 supplements.
Colostrum, glutathione and HMF Neuro probiotic. Not only did his seizures end, his disposition returned to a more normal state.
Between the miralax and the anti seizure medication our son became a wreck, he was suicidal, defiant and just possessed. We had no issues in school from k-2 but 3rd grade was a year to forget. That was 2014-2015 however, when we started those supplements in May 2015, watching the transformation of our son coming back to us was amazing. He had a great school year in 4th grade 2015-2016 and we are off to a great start in 5th grade. Not to mention he’s been seizure free for 17 months.
He still takes the probiotic along with kavimace and barleans vegan omega swirl. He still have room for progress, we are just thankful we made the connection with gut health and seizures. We believe polyethylene glycol eradicated his gut bacteria over the years of him taking miralax for constipation. Then his medicine, trileptal, induced seizures. About a year later I looked at the ingredients and sure enough it contains polyethylene glycol.
October 18, 2016 at 6:02 pm #495
October 19, 2016 at 12:24 am #496
Thank you, Keith, for telling me that! I have tried researching individual strains of probiotics and what they do but honestly, the information that’s out there just makes my brain spin. Are there any particular brands that you recommend? I know they’ve helped her *some* but I’ve been giving it to her three times a day, plus she’s been getting the ones in her multi-vitamin also. I was a little nervous starting her on the soil based because of what I’ve read so that’s kind of funny that the one I chose didn’t even have any in it. Wish I had found these boards before I spent the money on them lol. I will definitely look into the uBiome testing. Not a bad price at all.
Do you know anything about the SIBO tests you can order online?
- This reply was modified 2 years, 4 months ago by SavannahsMom.
October 25, 2016 at 6:23 pm #500
Nomorepeg, thank you for sharing profound information and experience.
Please provide a link regarding what you said about:
“The autonomic nervous system controls bowel movements and now research is showing a two way path between the autonomic nervous system and the central nervous system via the vagus nerve.”
I’ve been learning about Lactobacilli regulating the sympathetic nervous system via the vagus nerve, please see here:
August 13, 2018 at 8:09 pm #849
I know this has been inactive for awhile but it came up in google searches for me as I was trying to find things for my daughter.
She started having seizures at 4 months- and we had noticed she’d been constipated before they stared. We’ve been to a neurologist and have her on medication (which we hate) and have also had her going to a chiropractor. Her t12 was out really bad and we’ve been seeing some progress with bowel movements with them.
She has had a couple seizures over the past few days and her bowel movements had also stopped. After the seizure this morning I gave up and did a suppository with her and got a clog out and about an hour later she had a good bowel movement.
She’s now 6 months old…. any advice or things to try to help her.
The chiropractor is quite certain when we get things under control she’ll stop having seizures and doesn’t think the meds are helping. He said if it were his daughter he’d stop them but until we really see improvement I’m scared to!
August 16, 2018 at 7:16 pm #851
Hello Melinda, heart goes out to you and your daughter. You are very astute to consider the association of constipation with seizure activity. Have you considered a microbial DNA stool test to confirm the type of imbalance? Have you tested any probiotics or prebiotics? Researched FMT?
Please join us on our Facebook page including The Gut Club Stool Test Discussion Group. We also offer this consult:
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