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Thread: Off the rails - what to do?

  1. #1
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    Default Off the rails - what to do?

    What do you do when your kiddo goes ballistic and you suspect a physical cause and your doctor can't help?

    Miriam (3 years old, autism, sensory issues, epilepsy) has been slowly coming unglued from a sensory perspective for several weeks. She's been wound up terribly tightly, chewing like crazy on whatever she can reach (including herself and other people), getting a shorter and shorter fuse. We can't leave her alone for a second. She started refusing naps, which she still desperately needs, on Thursday. Thursday and Friday she refused quietly; starting on Saturday, she began to act as if we were torturing her by requesting that she sleep. She roars and thrashes and bites... The other heartbreaking thing she's doing is repeatedly grabbing my hand and leading me to the door, frantically requesting "bye-bye". Only she doesn't WANT to be outside once she gets there -- it's COLD here in Wisconsin, and the snow is deep on the ground. I think she's saying, "I want to go somewhere that doesn't HURT."

    I took her to her pediatrician yesterday. Miriam was going ballistic, taking divots out of the exam table with her teeth. And the doc couldn't find anything wrong. Ears are clear, glands not swollen, mouth looks OK, throat is pink but doesn't look like strep or Coxsackie and besides she's been screaming so much. No runny nose, no fever, eating well. We already had her on antibiotics for a week last week... doctor gave up on trying to find a physical cause and recommended a behavioral counsellor for Miriam, respite care for us, and to try to get Miriam to go to sleep (dose with Benadryl if necessary). All fine suggestions, I suppose, but it feels so inadequate to what we're going through!

    One thing it might be -- one of her therapists had several weeks of a sore-throat issue that made her feel awful, but her doctors couldn't diagnose it and in the absence of a real diagnosis, she just kept putting one foot in front of the other. But the therapist had swollen glands, and Miriam doesn't...

    At least Miriam's sleeping well at night, not fighting the evening bedtime. And there are moments of quiet and smiles during the day, but I had to work so hard to get them. (IS it all behavioral? CAN she turn it on and off when she wants to?)

    Anyway, here's the question: have you ever had a spinout like this? What caused it? How did you get back out?

    Thanks for anything you can add -- we're really grasping at straws here.

    -- Joanne

  2. #2
    jeninnc is offline INCIIDer - A Community Creator
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    You said you had her on antibiotics - I have heard that this could be a trigger. Antibiotics can upset the balance of her system - causing yeast growth among others. I wonder if that is what is going on?

    Other then that, I would suspect she is overtired from not napping and being sick. Ellie was sick, fine for a few days and then totally regressed into a nightmare. She finally napped and slept well for a few days and was back to "normal".

    HUGS, I am sorry you are going through this - I know how hard it is! I am all for benedryl or melatonin for sleep. I chose benedryl this time with Ellie, as she had a bit of a runny nose as well.

    ETA - when we went through this I stepped up the sensory stuff - brushing, crashing, compression - she responds well to those. I also had her in to see the OT, even though she wasn't feeling 100%.

  3. #3
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    NancyR is offline INCIIDer - A Community Creator
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    Joanne, Leela reacts to a lot of antibiotics...I think some have red dye in them, etc... so even if she's not reacting to the antb per se, it could still be from the dyes, etc...

    Also agree it could be from the kill off of good bacteria in the system. We always use probiotics with every antibiotic dose, and continue them for a few weeks after the antb is stopped. We found a brand at the health food store that is dairy free - it's in a fruit juice base and is kept in the fridge section. Can't recall the name right now.

    There's also Culturelle for kids which is very highly recommended, I don't know if it's dairy base or not. The adult version has changed my mom's life, literally.

    HUGS! N

  4. #4
    Laura H1 is offline INCIIDer - A Community Creator
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    In light of the antibiotics, you definitely need to get her on probiotics... the good ones are in the refrigerated section of your health food store (and should be kept refrigerated)...

    I also HIGHLY recommend adding DHA to her daily diet... we use Nordic Naturals "Arctic Cod Liver Oil"... this is a supplement that is a must to everyone's diet... DHA is an essential fatty acid (your body cannot produce this substance... you can only get it from consuming it)... the best sources are certain fish and marine algae... in light of mercury and PCB contamination, you need to skip the fish and get it from "molecular distilled" oils on the market... marine algae is also a good source...

    please give the DHA a try... you will not be sorry...

    (((hugs)))
    Laura

  5. #5
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    Default Suspect her gut....

    I'd suggest checking out Great Plains Lab or Great Smokies Labs and getting a comprehensive digestive stool analysis. She might have an overgrowth of bacteria and/or imbalance in beneficial & pathogenic bacteria. Your regular doctor will likely never suspect this may play a role. Like the others said - get her on probiotics - today. I feel for you - it's hard to be in such a tough spot.

  6. #6
    amelia1 is offline INCIIDer - A Community Creator
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    No help here but (((Hugs))). I hope you find something to help soon.

  7. #7
    angeleena is offline INCIIDer - A Community Creator
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    Hi,
    I am so sorry that you are going through this.

    I cannot tell if the behavior started before the antibiotics or not but Ella has gone NUTS from antibiotics - very much like you describe. I called the doc and said NO MORE antibiotics except one kind that I cannot remember that does not make her like that. They blew me and my dh off about it like it must have been something else, but it happened a few times before we figured it out,

    Did it start during/after the antibiotics?

    It took ella a long time to get over it...weeks.

    Have you tried giving her probiotics in case the antibiotics messed up her stomach and now she has yeast issues?

    Just a thought..

    Hope it all gets better soon. I am sooo sorry.

    And, it sounds like you are doing everything you can.

    -Angi

  8. #8
    anniemc2000 is offline INCIIDer - A Community Creator
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    Default Oh no

    I'm not much help, though when 4yo dd acts this way it's usually due to pain. She has a very hard time expressing to us that she is in pain- your dd's chewing on everything made me think of when my dd has a sore throat and can't express it.
    Hugs,
    Ann

  9. #9
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    Thank you all for the responses -- interesting that the antibiotics figured in so many answers! The long wind-up actually did start a while before the antibiotics. In fact, she was ON antibiotics because I'd taken her for an ear check two weeks ago, since her behavior already seemed to warrant some sort of physical cause. There was only the slightest hint of an impending infection, but the ped gave me a scrip for Augmentin anyway and said "Don't hesitate to fill this if it gets worse." Three days later Miriam started a slight fever, which is when we went ahead and got the antibiotic.

    Miriam has tolerated Augmentin well in the past; we went a round with it back in November, when it helped us kick a combination of strep throat and ear infection, without any behavioral consequences. We stopped it a few days early this time, on the suspicion that a gassy belly might be part of the problem. But I don't think that was it... I do give her extra yogurt and the contents of an acidophilus capsule every day she's on antibiotics, and haven't stopped that yet. Without the acidophilus the antibiotics would give her loose stools and a yeasty diaper rash, but we managed to avoid that this round.

    Miriam did end up having a better day yesterday, including a good Benadryl nap, at least until an evening seizure brought it all back for an hour. I get a break today because her daycare lady is taking her for an extra day. I hope the improvement continues... I'll keep you posted.

    Again, thank you all!

  10. #10
    trek is offline INCIIDer - A Community Creator
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    Glad Miriam is doing better. If it persists could it be her seizure meds?

    hugs to both of you

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