jerks

In ALL, ILLNESS, SNIPS & SNAILS by Stephanie Klein50 Comments

He’s in the hospital again. 

Wednesday we had the 20 minute EEG, then the neurologist came to give Lucas a physical exam.  I had to remind myself to breathe.  Phil and I were terrified, basically wondering if we even wanted to know the results.  What if they’re really bad?  Maybe ignorance is bliss, right?  And to be quite frank, we left knowing nothing.  Just as clueless.  "Well, I saw some irregular things, I guess."  What?  You guess?  I don’t understand.  What does this mean?  What do you mean?  "Well, these kinds of tests aren’t very accurate.  It could have just been his head moving."  What?  If it’s not accurate then why do it?  Here’s what we did learn: he’s not having seizures.  We already knew that!  I never said they were seizures, what I’ve said all along is that they’re jerks, the kind we get when we’re falling asleep, but he has them when he’s awake.  He did this before the shunt, I explain.  I get no damn answers.  No "what caused this?" or "what can we do about it?" answers.  No "what the hell is it even?" answers.  Phil and I left annoyed. 

He’s projectile vomiting everything and now also has diarrhea.  I do not believe this has anything to do with his shunt.  I think it’s a teething thing.  We take him the next day to his pediatrician, in whom we have total confidence.  Lucas has no fever, no appetite, maybe a cold.  We’re most concerned about dehydration since he’s keeping nothing down.  The doc tells us he suspects the little man’s got a stomach virus that’s going around.  I wonder why Abigail hasn’t caught it.  Maybe there’s something else going on.  This morning Lucas was still unable to keep anything down, and still has the ‘rhea.  The 1 tsp./4x day of Mylanta ain’t workin’.  So now, Lucas is in the hospital again.  Hooked up to an IV so he doesn’t get dehydrated.  They did another cat scan: all was fine.  Did a shunt x-ray: all was fine.  Blood work: waiting to get it back, but think it’s fine.  They’re doing a special x-ray for his upper GI, to see if some hole might be too small or something.  I don’t really know.  And he’s getting another EEG, this time a 24-hour one to see if there’s any kind of pattern or problem.  The EEG is a crap test.  The 24-hour one is a less crap test than the 20-minute one, but just the same might not tell us all that much.  Mostly, we’ve just been told he’s got slight myoclonic jerks, not myoclonic seizures.  Big difference. And we’re thankful for this news, if one can call it that.  I suppose we’ll learn more in the coming days, but we might not.  I just want the little guy to feel better, to be able to enjoy himself, and for us to be able to enjoy him right back.  At least the kid is in good company; now his stressed out mama’s got the ‘rhea, too.

Comments

  1. I SWEAR AFTER THIS I WILL NOT WRITE ANOTHER WORD IN REGARDS TO YOUR VERY PRIVATE SITUATION. BUT IF THINGS CONTINUE TO GO THIS WAY, MAY I OFFER THE SUGGESTION OF THE TEXAS CHILDREN'S HOSPITAL IN HOUSTON. IT'S RANKED TOP FIVE IN THE US AND THE CARE THAT IS OFFERED IS A LIGHT YEAR FROM EVERYWHERE ELSE. THEY ARE TENACIOUS!!! I KNOW IT'S A DRIVE, BUT AT MY WITS END WITH THE CARE MY SON WAS RECEIVING I SET UP THE APPOINTMENT AND MADE THE TRIP. IT WAS THE BEST DECISION I'VE EVER MADE. YOU ARE A MORE TOGETHER CHICK THAN I, BECAUSE I WOULD HAVE KICKED THE DOCTOR WHEN HE UTTERED "I GUESS". MY HEART GOES OUT TO YOU AND PHIL, MY FAMILY WILL CONTINUE TO KEEP YOU IN THERE THOUGHTS. GOOD LUCK!!

  2. Try bananas and lamb (well, for you). They're binding. With regard to everything else–the frustration of not getting any answers notwithstanding–no news is usually good news (or at least not bad news). This has been the case so far with my freaky health scares. Many of the really horrid diseases have telltale symptoms and are often fairly straight-forward to diagnose. Sorry you all have to go through this.

  3. I just can't imagine how frightening all this is – and for everyone involved. I will continue to think hopeful thoughts for you and your family.

  4. Oh damn, damn, double damn. I was really hoping that things were going better. I keep typing sentiments, then erasing them as trite, ridiculous, unnecessary … so let me just say – I'm sorry, and sending the requisite courage and strength.

  5. Stephanie,

    Have you been pleased with your medical care? If you have any doubts, its worth traveling for second, third opinions…at least to NYC.
    Wishoing all the best for you and lil L.

  6. I think it is smart you are writing about it here. One of your fans may be a neurologist or a mother who has gone through this before and you might get some good advice. I am sending positive wishes your way. I hope you have a restful weekend.

  7. So, so sorry for what you're all going through. I hope things start looking up for you soon. Even though you don't know me, I hope it helps to know that I'm thinking about you and wishing your family well.

  8. Sorry to hear this, Steph. Must be so frustrating and so scary. I'm glad test results haven't yielded any bad news, but you must hate the uncertainty. I hope all is well soon.

  9. i'm sorry. one of my sons had a seizure. i've dealt with the CT scans, the EEG's, the neurologists not having answers. the bottom line is that as much as doctors know, some things are just un-knowable. keep your chin up.

  10. Oh Stephanie! At least all those prelim tests so far came back ok. Here in Australia we are in what they are calling a 'gastro epidemic' here – whole hospitals and nursing homes and people everywhere getting those awful symptoms.

    I am hoping he'll be back home soon – keeping you awake, messing around with Abigail and being the Lucas you all know and love.

  11. Maybe it really is just a stomach virus? Try not to worry too much (probably a stupid thing t say that is easier said than done anyway)
    I hope Lucas gets better and you get some answers!

    I`m sending lots of healing and calming thoughts and prayers your way

  12. hey stephanie-
    I wish you the best with Lucas- just stay strong and take it day by day— he has faught his whole life he knows what to do!!

    Robin

  13. Hello, I'm glad that the scan was good.
    Here I'm sharing some information that might be helpful.
    My boy was very sick, after getting better he started having those projectile vomiting episodes and he also had the diarrhea. I decided to see a pediatric gastroenterologist who told me that because he was taking so many medications and not so much food his digestive tract was weak and to my surprise he told me to buy something that is called PB-8 I bought the one from (NUTRITION NOW Children PB 8 Pro-Biotic Acidophilus) and I found it at the natural/vegetarian store without any prescription. This is a powder you mix with liquids or food. The propper name is: Acidophilus; is a beneficial bacteria that synthesize nutrients in the intestinal tract, counteract pathogenic micro-organisms and maintain healthy intestinal environment. Acidophilus may also be used for digestive maintaince and flora restoration after long courses of antibiotics. This product provides a dietary supplement of the prominent beneficial good bacteria found in the digestive tract of children. Well it worked very well and I always have some at home. Google it and ask your doctor about this maybe it will work for your boy too. Blessings!

  14. As always, I am sending love, thoughts, prayers and good vibes from Florida to Austin to your whole crew. Hang in there!

  15. I'm so sorry Lucas is at the hospital again. My baby was diagnosed with severe asthma when he as 9 months old. It took 2 months before we could see a pediatric pulmonologist and during those months we had to administer breathing treatments several times a day via nebulizer. I was so relieved when we finally saw the doctor. We walked out with an arsenal of new meds, no more nebulizer treatments and finally a plan for the future. The next morning my baby started throwing up and pooping white diarreah. I was convinced it was just a reaction to the new meds and that when the doctor's office opened and I called they would reassure me that this was a typical side effect they forgot to tell me about. But no. Take him to his pedi they said. This has nothing to do with his new meds. I put down the phone and cried. Turns out it was just a stomach bug and my baby was back to himself in no time. He's three now and his asthma is well under control. It has never slowed him down a bit even on his worse days. The roller coaster ride is so tiring sometimes. If you don't have productive conversations with the doctors, keep looking for ones that you can easily talk to.

  16. I've been checking your blog multiple times a day just to check for an update on your little guy and have been praying everyday for your family. I just wanted you to know that I am praying that Lucas gets better soon and that God graces the doctors with the wisdom to give you a proper diagnosis and SOON. I have all faith that your family will get throught this okay.

    Stay strong.

  17. Having watched my newborn son almost die before my very eyes in the NBICU (collapsed lung and the nurse did nothing), my heart is sympathic to you and your family. Five years later, he is healthy, orney and %100 boy! The same big God that watched out for my baby is watching out for yours. I have and will continue to say a prayer every time I read your blog (which is almost daily). And may he give you unexplainable peace during this time when there are yet answers. Blessings!

  18. Good grief. I sure hope you guys find out something concrete soon. Still sending up prayers….

  19. AND THIS TOO SHALL PASS… HUGS ARE GREAT FOR PANICED PARENTS. GET THE FAMILY THERE W/ YOU. AT LEAST YOU WON'T HAVE TO WORRY ABOUT ABIGAIL AND BOTH YOU AND PHIL COULD USE SOME GOOD OLD FASHIONED "IT WILL BE OK" FROM THE PARENTS.THINK ABOUT IT.

  20. Stephanie,

    Have they ruled out a Chiari malformation? I have this in addition to the hydrocephalus, and my herky-jerkies are attributable to it. Chiari is very sneaky, and it sometimes takes years to diagnose, which is too long. A day is too long when it's your kid.

    Be a bitch if you have to, but insist that Lucas have an MRI of both brain and spine to rule Chiari out, or make sure that films are re-evaluated if he's already had a full series. If they won't listen to you down in Texas, do consider coming back to New York. There's a marvelous pediatric neurosurgeon at NYU named Jeffrey Wisoff, and I don't hesitate to reccommend him, because he's my doctor.

    Best of luck. Thinking of all of you.

  21. I'm sorry Stephanie :(

    I have to agree with the poster who mentioned something about a specialty childrens hospital in TX. If you have the means, and/or a referral from your pediatrician, go for it. Second opinions are always a good idea when it comes to your child.

  22. I echo the comments of another – there is so much sickness going on right now everywhere. August…odd. My sister has just gotten well after weeks of feeling yuck, diarrhea and upset, 2 friends just finished 5 day stays in hospital for dehydration b/c of virus – the list goes on and on.

    And….I meant to say this last week….contact sports are over-rated. I have decades of experience to speak from and I am telling you – nooooo problem if Lucas cannot play contact sports. There is NO sport my children have not played, no team, no field, no gym, no pool I have not sat beside and cheered. I have had the best child on the team and the worst child, my children have gotten MVP's and been varsity captains more times than I can remember – and…still, I would give up contact sports for them in a second if I got to choose.

  23. Hoping you two just have a bug which will work its way out soon enough. In the meantime all my thoughts going out to little Lucas and his swift recovery. Must be hellish having him away from home :(

  24. Hi Stephanie,

    I also agree with your first commentor. Texas Children's Hospital here in Houston is one of the best hospitals in the country. My sister knows EVERYBODY if you need a referral please let me know. Best wishes, God Bless.

  25. I had to comment on the use of acidopholous….I have occasional deficiency (b/c I'm not absorbing it) of vitamin K which is neccesary for clotting. When I start seeing bruises for no reason this is what I take and it corrects the situation…it is very good for intestinal situations. It's worth trying and can't do any harm. By the way acidopholous is the active bacteria in yogurt.

    Stephanie I am sending a motherly virtual hug…I'm so sorry this is happening.

  26. Hi Stephanie, I am a faithful reader, and think often of how much your kind thoughts and posts have helped me from afar…. so as a fellow New Yorker, I'm sending you lots of good thoughts, prayers and hope for you and your sweet beans..

  27. Oh, Stephanie, I'm so sorry to hear that Lucas is back in the hospital and that you're all going through such stress and anxiety and dealing with so many unanswered questions. I hope you have some answers soon, and I hope they're good ones. Keeping you all in my thoughts and prayers, and sending warm thoughts from DC.

  28. Hang in there, Stephanie! Hopefully what Lucas is going through is just an after-effect of the surgery…? You were right to worry about dehydration, and although we are all rooting for Lucas to be back home soon, at least he is getting hydrated at the hospital. Best of health to him and the rest of your family.

  29. I am so sorry things are tough right now. At least the pediatrician is making it sound as though things are alright, which is good news! Hope you ALL feel better soon!

  30. I'm with everyone else who wonders at the doctor's reply of "I guess." Sure, not all tests are fully accurate, but there are SUCH better ways to tell that to a worried-sick parent.

    Poor baby… Thank God for health insurance and adequate medical care. And for diligent mommies and daddies who get their babies the help they need. You guys are such a blessing to Lucas and Abigail, even when you don't know what to do.

    I hope the doctors are able to give you some answers soon. Still praying for all of you.

  31. I'm so glad Bianca, Phosda and Norma posted with good hard information, places and names. I've been hoping someone would. While I'm sure Lucas is getting the very best medical care available in Austin, perhaps it's time to cast your net wider. I think about you guys every day and hope for good news in terms of a firm diagnosis and treatment plan very soon.

  32. my daughter had the eeg too. you're right. it is a crap test. if the conditions aren't perfect the results become inaccurate. and of course with kids the conditions are never perfect. a good doc can study the test and get some basic info from it regardless, which it sounds like yours has done.

    i hope the little guy is feeling better. maybe this is karma for all the hard times you gave to your mom? (wink wink).

  33. phosda, so glad that you're doing well. Echoing your thoughts on Wisoff. He is THE best. Thankfully, I haven't needed him, but a friend's son did and he IS the man. Oren Davinsky, too. They work together.

    Stephanie, you may have believed Lucas wasn't having seizures, but it's best that they checked for them. My friend's son, who eventually needed Wisoff for brain surgery, was having sneaky seizures that couldn't be seen. Only an EEG found them. So, be thankful Lucas' EEG showed no signs of them. I know it's hard to be thankful and heave a sigh of relief when you're still waiting for a definitive diagnosis, but when they can rule out the big things, say a big thank you.

    Hope your little man is doing better today.

  34. be blunt with these guys stephanie. if you're in there and they're not making sense to you, or giving you the run-around , just be blunt.

    they dont want to say "i dont know" because if they dont know, then who does?
    they dont understand always the maternal instinct thing you've got going on…you need answers. its not an option.

    you need someone who can get a handle on what you;re dealing with. somewhere out there there is an expert who has dealt with lucas' exact symptoms before…

    and always remember. these guys are specialists in their field, but YOU are the specialist on Lucas.

    You are the worlds first and foremost Lucasologist, PHD. He lived in your body.

    You know him better than anyone in the world. so if it just doesnt seem right to you, then its not right.

    trust your instincts.

  35. Stephanie,
    I am all for probiotics/ Acidophilus for little Lucas. His lower GI will be happy and his immune system, too. Check into it. And while you are giving some to Lucas, have some yourself. It will probably help, not hinder. Best wishes.

  36. Jennifer C, just loved the "Lucasologist, PHD"… (-; So, Stephanie is not only one of those but an "Abigailogist, PhD", too. Which makes me a "Jaredologist, PhD". Will let Jared know this next time we are together…. can just see the eyes rolling… HA! Hope your little whippersnapper is fine and dandy soon (as my dear old departed Dad would have said). Take care and relaxxxxxxxxxxxx as much as possible under the conditions.

  37. Just want to mention that everytime i post on here my name (Sandra S) gets posted as someone else and theirs (jennifer c this time) gets posted as mine. A bit of a glitch.

  38. Oh the sweet little guy is having an awfully rough month.

    I'm still sending out the healing mojo at all of you and believing that this is just routine baby stuff that hits him harder because he's been through so much.

  39. You and your family are in my prayers every day. I have a little girl and my heart hurts reading about what little Lucas is going through. Trust your instincts. You are a mother and you know what doctors may not know, so if it means a thousand trips to the doc's office or ER, then so be it. Persistence may help find what is happening to Lucas.
    Lots of thoughts and prayers for your lil' guy.

  40. So sorry to hear what you're going through right now with Lucas.

    Did you know that seizures and jerks can be being caused by routine vaccinations? Its HUGE and very real. My cousin's 4 yr old son has developed autism and it is now widely believed it was caused by his shots. This may not be Lucas's case but you might want to be informed.

    Check out these websites:
    http://www.healthy.net/scr/Article.asp?Id=3326
    http://www.vaccinetruth.org/6_out_of_10,000.htm
    http://www.drcarley.com/

    Keep Strong! He needs u.

  41. Many thoughts are with you & your family. Good to hear that you and Phil are pushing the doctors for answers, being proactive is the best way to be, especially for little Lucas. Hugs to you, hang in there and I hope you feel better too.

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