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Thread: Update on Nick

  1. #1
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    Default Update on Nick

    Hi all, Nick has been having these episodes of nausea, eye rolling, drowsiness, headache and extreme pallor. He sleeps afterwards for a few hours. We thought it was the valproic even though that didn't fit, but we couldn't figure it out. The day before yesterday he had a really bad episode and his respirations dropped to ten, sats dropped, blood pressure, he just took a dip in his CNS.

    So, yesterday, I spent the afternoon with him and I was chatting with the nurse who had been speaking with the pharmacist. Apparently the pharmacist queried why we were giving Nicks dose of Calcium carbonate (for crohn's related osteopenia) all at once instead of twice a day. She said it could some side effects.

    So I googled sides and sure enough, it lists serious side effects as changes in urine (he retains urine during these episodes), behaviour/mood changes, nausea and vomiting, etc. ...ALL the symptoms that Nick has been having! So we are holding the Calcium for a few days and we'll see what happens.

    I never considered it as a culprit because it's so benign (I THOUGHT) compared to his multiple other medications. Amazing!!! And Rose you were right, it was not the valproic, just couldn't figure it out - I'll keep you posted on how it all turns out!!!!

    o***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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    Wow I hope that's the culprit. Hey do you sometimes feel like your a "detective" ??? I know I do! We have to figure out all these health issues along the way with not many clues soemtimes. Gosh one more hat to wear. Keep us posted.
    Mary Grace

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    Hi!

    Oh wow! I wouldn't have thought that could cause anything serious! Hope the symptoms improve with not giving calcium carbonate for a few days!! Will it be better for his body to give 2x/day vs all at once? It's so hard when our kids have so many things going into them!!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    ((((((Donna))))))

    I've always thought that the reason for taking calcium twice a day was to allow the body the opportunity to utilize it. The body can only process so much calcium at once, or at least that's been my understanding.

    Does Nick take Magnesium also? This is important to the metabolism of the calcium. Half the amount of calcium is the usual dosage for magnesium. For example, 100 mg calcium with 50 mg magnesium.

    I think Calcium comes in a variety of forms/formulary. Maybe the pharmacist could recommend a different calcium than the carbonate?

    Some meds need to be taken a few hours apart from calcium and magnesium (like Dilantin), so that's something to check with Nick's current meds.

    Now, I'm going to ask the same question I did about the Valproic causing these episodes: If the Calcium is the cause, why doesn't Nick have these episodes every day after he receives his calcium? Why only periodically?

    I feel like there is a puzzle piece missing.

    And, while I know that Nick's responses during this episode are concerning, I just want to reassure you on these things:

    Jon's normal respiration is 13. For some people it's 16. Everyone is a little different. A respiration of 10 is low, but not alarming.

    SATS above 90 are considered within normal range. Very few people actually have SATS of 100. A good range is 94-97. Docs, nurses, respiratory therapists worry when SATS drop below 90, and depending upon the patient, they don't get excited until they drop to the low 80's.

    Blood pressure varies, of course, for each individual. But our hospital docs don't get worried until the top number drops below 90. The bottom number seems to be less interesting to them these days, where a few years ago, we all had our eyes on that bottom number on the ICU monitor. And for a few years, the number we watched was the mean between the two numbers.

    Of course, any drastic change in these vital signs signals something is amiss and definitely warrants investigation. So, these changes for Nick are significant and indicate that something is awry within him. I just want to reassure you that his vitals were still within what is considered in our neck of the woods as the normal range. I know how frightening this is for you, so I just wanted to offer you some reassurance, based upon my experiences with vital signs.

    I'm praying that withholding the calcium is the answer, although I still have the question as to why it doesn't affect Nicholas every day, when he takes it. Perhaps the pharmacist could shed some light on that, or she could recommend trying a different formulary for the calcium. Perhaps Nick is getting too much calcium and he would benefit from a lower dose. Does Nick also take Vitamin D? That's important to getting the calcium to work. I learned that recently.

    Do you have access to a nutritionist or a dietitian? Our hospital RD is brilliant, and she figures out so many things that doctors miss. A consult would be terrific, if you can find a good one.

    And Mary is so right ~ we are detectives! And researchers! And, as I always say, "Go with you Gut!" Because our instincts are pretty precise most of the time.

    Prayers going up for you and Nick that this mystery will be solved once and for all!

    Love & Light,

    Rose
    Mom to Jon, 49, (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 Rose!
    Thank you again for your thinking cap :) Our wonderful GP is away right now but I'll contact him next week when he's back and query him on his thoughts plus the Vit D and Magnesium. The calcium was added in the UK when Nick had his crohns outbreak and it's just stayed since then. His last bone density was excellent so maybe we just DC it. Maybe I'll request an ultrasound of his gall bladder and bile duct as well. Can't hurt. The numbers on his CNS drop weren't alarming in and of themselves, just that he's never had a drop at all with an episode before. So it's a new element that frightened me because you never know where this thing is going, especially because we don't know the cause. But I have always been nervous about CNS symptoms because Nick has central apnea, and hypothermia sometimes with seizures. One time when he had a seizure in England, his body temp went to 32C and they wrapped in a space blanket to warm him up in emerg. It's so strange, so I hate these things I don't understand. Yesterday was a good day with no symptoms other than a lingering feeling of wooziness (Nick said he felt OK but not 100%). We'll see what today brings. Thank you ALL for your thoughts, ideas and for your friendship! Donna XO
    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 he had a good day yesterday. Rose great advice as always. I totally agree "go with your gut". Sometimes that's all we have. This is how I've managed to peel away the layers fo whats going on with Kathleen. I hope today is another good day for Nick.
    Mary Grace

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    Thanks, Mary Grace! You have done an amazing solving the many mysteries of your sweet Kathleen. Rotten luck - today Nick has a cold so he's feeling not so hot. But so far no other episodes of vomiting etc. We're just watching carefully and I'm going over to hang out with him a little later today. I'll report back! Donna xo
    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 & Nick))))))

    Poor Nick! Now a cold!

    Perhaps it was brewing the other day, when he had the episode, and that contributed to the drop in his vitals.

    How well I can relate to your fears of "what's going to happen next?" as you watch these episodes, or seizures, or anything unusual happening to Nick. Jim is much calmer than I am during an emerging issue/crisis, often saying, "We've been here before." And he's right, and generally Jon works through whatever the issue is, but those times when things went South are vivid in my memory. That's a tremendous amount of stress, watching, waiting, praying.

    More thoughts for you to ponder ~

    1. Blood work up ~ CMP (complete metabolic panel) which will give you calcium, potassium, magnesium, sodium etc. levels. Liver and kidney function tests. Amylase and lipase (to check pancreas). Vitamin D (that's a test on its own). Thyroid. Medication blood levels. Check that Valproate to see if it's in range. Check iron levels, because Valproic Acid can cause anemia (Jon has this). Get a CBC to check red and white blood cells.

    2. Use that info to determine what supplements and how much of each Nick needs. Check Nick's formula. It should list the nutrition values for calcium, Vit. D, magnesium, iron, etc. He may be receiving a sufficient amount in his formula, so that supplements aren't required.

    3. Kidney stones ~ calcium can lead to kidney stones. Stones can be small and can move periodically, which would account for the random occurrence of Nick's episodes. Jim had stones from excess calcium in his much younger days of Devon cream and tons of cheese (caused him sinus issues too). He said the pain was excruciating, and he had nausea/vomiting that was unreal. His stones were rather large. It took a couple of years for them to finally break up so that he could pass them. And it did cause him to retain urine, and urinating was painful.

    4. Gallbladder is another place to check, since lots of meds affect the gallbladder, and Valproic Acid has the rare side effect of acute pancreatitis. Nick could have a gallstone.

    Rule In ~ Rule Out. That's my motto.

    Hope his cold resolves quickly. Please give him a hug from us. And save one for yourself.

    Love & Light,

    Rose
    Mom to Jon, 49, (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! Calcium can be hard to disgust/process. You need it in the right form. I take something called Calmax. It is a calcium magnesium supplement in powder form that you let dissolve in water. Would Nick be able to take something like that or no?? Sorry he has a cold.
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    ((((((Donna & Nick))))))

    Just checking in ~ how is Nick feeling? Hope his cold is mild.

    Thinking of you and sending healing prayers and energy.

    Love & Light,

    Rose
    Mom to Jon, 49, (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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