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Thread: Weird symptoms, can you read them?

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    Default Weird symptoms, can you read them?

    Hi Everyone,
    Yesterday we had a respirology clinic appt for Nick and he seemed happy but very stiff - sweaty and tense, but happy. He hadn't slept at all the night before. It was strange - he is on SO much medication for pain and spasticity as well as seizures. So this morning, his night nurse wrote this:
    NW was in a really good mood last night, but appeared to be spastic. He startled to touch. It seemed like he was excited about something with the way he would become tense, but the episodes were random. He was also seemed to find everything funny, giggling in the middle of a conversation. I figure he was probably tired from not sleeping much the night before. His skin appeared to have sweat beading on it, auxillary temp read 97.4. He denied any pain. PRN naproxen was given at 2045 to see if it would take the edge off the excitedness. He complained of being cold so the heater was put on as well as an extra blanket, which he found effective. He fell asleep at 2230, and his hr would fluctuate between 65-89 every half hour, requiring frequent repositioning (x 11). He had 2 seizures. After discussion with the other nurse on, PRN 1ml morphine was given with the normal dose at 0030, and it did seem to be a bit effective, allowing n.w to sleep.
    He's currently snoring peacefully.

    I've asked the head nurse to contact the neurologist to see if he thinks it could be related to seizures (sounds like it). But it's so hard to say, I think certainly something is going on and that Nick feels different in some way. He denies pain, but he always does because he's afraid of going to the hospital. Usually if he has pain, though, he's very quiet. The laughter means nervousness or else seizures (Nick is the type of person who would laugh in severe turbulence on an airplane).

    Any thoughts fellow Moms?

    xo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Could the giggling be gelastic seizures? Tyler gets them and giggles at odd times, sometimes until he is completely out of breath. Sure sounds like seizures to me especially with the cold sweats (also a speciality of Tyler's). Hope he is doing much better today and you get some answers.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Donna)))))) ~

    Like Tamie, my first thought is Gelastic Seizures. The tensing up, startling, and sweating could also be seizure-related. Coldness could be seizures, could be circulation, could be related to pain meds ...

    Of course, sleep deprivation is a major seizure trigger.

    Hope the neuro has some suggestions and that Nick has a better night tonight.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    ((((((Donna)))))) ~

    I've been pondering Nick's symptoms all day, and I decided to look up Naproxen, Morphine, and Baclofen. I'm sure that you know all about them, but I was surprised to read that seizures can be an adverse side effect with all three of them.

    Naproxen:

    http://www.nlm.nih.gov/medlineplus/d...s/a681029.html

    Morphine:

    http://www.nlm.nih.gov/medlineplus/d...s/a682133.html

    Baclofen:

    http://www.nlm.nih.gov/medlineplus/d...s/a682530.html

    What if ...

    Nick's seizures have increased due to pain meds ...
    seizures/tensing up/being excited causes/increases pain ...
    so more pain meds ...
    more seizures or new seizures (Gelastic) ...

    It's a vicious circle. And which devil do you fight? Pain? Seizures?

    Pain causes seizures, correct? But, I'm guessing that seizures cause pain. So, in an effort to control pain, are more seizures, thus more pain, being generated? How do we find the answer to that question, without jeopardizing Nick?

    I hope that I'm making some kind of sense here. I know what I mean but it's difficult to explain.

    Thinking outside the box here ~ what other options are there to manage Nick's pain? I'm sure that you've been through a gazillion things. Would Nick tolerate acupuncture, acupressure, chiropractic treatment, naturopathic recommendations, MMJ? How about physical therapy?

    This is how my brain works, when I am trying to figure out Jon's mysteries. I just keep tossing stuff around until something sticks to the side of my brain like a noodle on a fridge door.

    I could be full of beans and completely out in left field (to mix metaphors), but I just wanted to posit these thoughts for your consideration.

    Nick, you, Jim, Natalie and your lovely family are in my prayers ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hi Tamie and Rose,
    Thank you both for your kind words and for your ideas! Rose, you may be right - we just increased the pump speed and also the oral morphine went up by 1mg per dose if he needs it (and he has about half the time since the script was written last week). So, the increase in pain meds could be the culprit. I'm always on the lookout for a malfunction in the pump too, that's happened twice before. But last night was perfect, and today was normal and great too, so who knows? When we see something we haven't seen before, I quote Dorothy Parker and ask, "What fresh hell is this?" - I hate new stuff! But luckily, he's come out of this so we'll just keep watching. Strange that it appeared on the heels of the weird allergic reaction and swollen arm last week. Honestly, our kids should get together and form a club called the 'Mystery Symptom Gang'. I'll keep y'all posted as always and thank you for your ideas/lovingsupport. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Donna, so glad that he's doing better.As always Rose had some great input, I don't think I could add to that. I love the quote "what the fresh hell is this?" I think they've all earne the name "Mystery symptom gang". I hope all goes well an he continues on a healthy path.
    Mary Grace

  7. The following user says "thanks"


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    ((((((Donna)))))) ~

    So happy that Nick is feeling better and had a perfect night! I pray this continues for him. Are the rash and swelling gone?

    Here's an outside of the box thought ~ would Nick be willing to try Reiki or Healing Touch? Several of my friends have benefited from Reiki. My godson is a beginning practitioner, and his sessions really help his mom, who has an MS-like condition. Healing Touch was very helpful to Jon in the hospital, and the lovely practitioner actually gave me a session, and I felt so relaxed, calm, and my aching back was significantly better. A Reiki or Healing Touch therapist could visit Nick at his home, so Nick wouldn't have to travel. It might help Nick, and it certainly wouldn't hurt him.

    What a great Dorothy Parker quote! I will have to use this one! Thank you!

    One way to look at our children's mysteries ~ without them, what we would talk about? They keep us on our toes, that's for sure!

    Keeping the prayers going for all of you ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Aww, thanks Rose! Good idea to try Reiki - we did cranial osteopathy when Nick was small and that helped - it is something like Reiki. I know someone in nearby who is a R. Master and I'll ask her if she would go see Nick. He's coming over tomorrow to help bake Christmas cookies, that should be fun!
    Sending love to all my friends and fellow Moms here xox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((((Donna)))))) ~

    Great that you know a Reiki Master nearby! Definitely give that a whirl!

    Cookies! What kind are you making with Nick?

    Jim and I are trying to reduce our sugar intake, so I found a website with easy recipes using agave nectar, stevia, erythritol, and coconut sugar. I attempted to make these chocolate chip cookies today:

    http://www.easy-sugar-free-recipes.c...ip-cookie.html

    I made 1/2 the recipe. I substituted 1/4 c coconut butter and 1/4 c peanut butter for 1/2 c butter. I added Wonder Cocoa to the dry mix. I used whole wheat flour, but I put in a cup, and that's too much! They are dry, but soft and tasty. More like a scone than a cookie.

    I'm sure that your cookies will be delightful, and I would love to sit in the kitchen with you and Nick and breathe in the delectable aroma of your cookies!

    Have a great day together!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Wow, your cookies sound yummy (I love scones!) We are going to make shortbread cookies - My Nana's recipe. At Christmas, we make no attempt whatsoever to be healthy and there's 3/4lb of butter in one batch! They are so good though! Melt in your mouth and we do only have them at Christmas, so the rest of the year I feel virtuous :) I'll take some photos this afternoon and share them! I haven't had a note this morning yet about Nick's night, but hopefully it was OK. Every day I am grateful that I don't have night nursing duties anymore. I don't know how I stayed awake day and night for years, no wonder I lost the insurance on my car from so many fender benders! Love to you all, xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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