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What could cause feeling low besides a low bs?

Discussion in 'Parents of Children with Type 1' started by denise3099, Dec 12, 2011.

  1. denise3099

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    DD gets an aweful low feeling with shakiness, trembling, grouchiness, extreme extreme hunger, and even feeling hot. It looks just like an adrenaline reaction to a low bs, but when I test her it's normal. She'll go on like this for like an hour. She has also experienced some swelling to fingers and feet and even a fat lip. I don't know what to make of it.

    The ped said autonomic dysfunction, and to call endo. Endo said, without a low he's not sure what endocronology can do. The nueros said it's not nuerological. She'd had a CAT scan, MRI of head and spine, spinal tap, lots of blood work. They say it's not thyroid, lupis, autoimmune, lyme, MS, etc. Now she's having trouble walking and says her legs hurt all the time. She's currently in a wheel chair. But the nuero said the not walking is a conversion disorder since leg strength is normal and she seemed to be trying NOT to walk rather than trying TO walk. Oh, and there's the question of the benign tumor they found in her brain, just since they happen to be doing an MRI, that they swear cannot be causing her symptoms and is just a coincidence. I just about want to throw up. :(
     
  2. emm142

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    I'm so sorry to hear you're going through this. If it had JUST been a low feeling without a low, I'd suggest anxiety. But with all these other things, I have no idea. I'm glad she's having all the tests done to figure it out. (((hugs)))
     
  3. Connor's Mom

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    I do not have D but, I have hypo feelings due to my thyroid disorder. I have Hashimoto's. My Endo says the symptoms are very common. Sometimes I am actually low (I have used my son's meter to test when I was feeling off) but, most of the time it is my thyroid causing the issue.
     
  4. denise3099

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    Maybe it is anxiety or some sort of panic disorder. The neuro who said conversion disorder said it was often an expression of depression. Which makes me so sad. In 5 years of having D she has never once said it isn't fair, why me, I hate D, etc. I thought she was coping so well and that somehow her D didn't bother her. How stupid am I? :( How can it NOT bother someone? Maybe not expressing it has led to all this internalization, anxiety, drepression, and psychosomatic illness. But, God, she's only 9!! :( Maybe the adrenaline rush is a result of some kind of anxiety disorder and so it the conversion disorder.

    That would make 4 out of 4 in our home on some kind of psych med. :( What we need is a family size bottle of prozac to pass around like M&Ms. I'm so sad.
     
  5. emm142

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    I'm sorry Denise. :( I was recently diagnosed with depression and an anxiety disorder and.. I'm not sure what the point of me saying that was, but you know. I really hope you can get it figured out and treated soon.
     
  6. denise3099

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    Thanks, you're a sweetie. I'm glad you're getting treatment. That's such a big step. And I know we're not alone.

    I know it's not the end of the world and this is better than the neurological impairment we thought she had. I just thought she was so different than me, ds, and dh. She was the carefree, happy one, while the 3 of us were wound tight. I guess my little apple didn't fall far from the tree after all.
     
  7. Becky Stevens mom

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    Oh Denise:( Im so sorry. I have a condition called mitral valve prolapse syndrome with many of the symptoms of dysautonomia. This is an imbalance of the autonomic nervous system. I have alot of those same symptoms but no weakness in my legs.

    Is there any swelling in the joints? headaches or fevers? It may not be Lyme but could be another tick borne disease. There are several on the east coast now but most have the same symptoms as Lyme disease does.


    Here is a link with info about Dysautonomia with a list of possible symptoms. Its a real condition but many doctors dont know alot about it or really understand it. For many people dietary changes and medications such as beta blockers can bring relief or many of the symptoms

    http://www.medicalnewstoday.com/releases/76785.php
     
  8. Lisa P.

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    I would definitely look into dysautonomia. It is easy to mistake this class of disease for depression, but treating depression when you actually have a regulatory disorder can be a big mistake.

    I'm so sorry for your baby. We dealt with a fabulous peds cardiologist who sees dysautonomia and he takes it very seriously and not as a depression issue. For my kid, her regulation problem is one of blood pressure, but I believe she has some temp regulation issues, too. He effectively drove into the background all her symptoms with a high salt diet. He says there are things you can work on that make the symptoms easier to deal with, and that in some cases enough of this can "train" the body back into better regulation.

    Hope you get it all figured out soon.
     
  9. VinceysMom

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    How about maybe a sunny change in blood pressure? My son gets a real "hot" feeling and feels like crap and they do a bp check when he feels like this... hasnt happened in a while but last year it happened a lot.. his bp was usually a bit higher than normal. But whether that was the cause we really don't know, just some food for thought...

    good luck.
     
  10. Becky Stevens mom

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    Yes! Absolutely! I was told by one doctor that I probably had depression and he wanted to put me on meds, another doctor told me it was pre-menopause and wanted to put me on hormones:rolleyes: Many people with dysautonomia have problems regulating blood pressure. When they get up quickly their BP drops suddenly making them feel faint. Many of us have exercise intolerance meaning that we can be symptomatic days after heavy exercise. My heart will race climbing stairs. I also have problems with low body temp, often 96 degrees or lower but I will feel like Im burning up. This condition also causes panic attacks that can happen at any time, even during sleep.
     
  11. Lisa P.

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    They diagnosed my daughter with abdominal migraines and put her on Elevil. I'll always believe they were really treating her for depression but just told me migraines because they thought I wouldn't put her on an antidepressant any other way. She got better, then horrifically worse. Their solution was to up the dosage until my 50 pound kid was prescribed an adult dose. Turns out, Elevil lowers blood pressure. So my kid, who already wasn't getting enough oxygen to her brain and digestive system because of low blood pressure, was now on a medicine that lowered her bp further. :mad::mad:


    To the OP, hang in there, there are answers out there, you just have to find the right doctor.
     
  12. StillMamamia

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    I don't know what to say, but wanted to let you know I'm sorry for all this.:( I hope you get some answers soon.
     
  13. buggle

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    Have you taken her to a good pedi rheumatologist?

    Some diseases are incredibly difficult to diagnose. I know it must be stressful and awful to keep dragging her to doctors, but I think it's worth taking her to a few more specialists to see if someone can figure out what's going on.
     
  14. Chaser

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    My daughter is currently being treated with IV/Hydration therapy for POTS symptoms from Dysautonomia. On my quest to cure her migraines (and how if she didn't have a headache/migraine she felt like she had the flu) we found out the following:

    Autoimmune Thyroidits - thyroid levels would always come back "normal" this was after a thyroid antibodies test

    Ehlers Danlos Syndrome- hypermobility with some classical

    TMJ, Gastroparisis, major brain fog
    Oh and major stress/anxiety responses. The flight or fight response was on overload. Her pupils were almost always dialated.

    She has a neurologist that took her symptoms seriously and didn't just chalk them up to a mental disorder. Working with another neurologist locally they started looking at mitochondrial defect disorders. We are currently waiting for additional labwork from a LP from labs in Atlanta.

    We saw Dr. Abdallah in N. Va. (http://childrensheartinstitute.org/staff/stafhome.htm) who helped explain what was occuring with the flight or fight response. Even though her BP did not have an extreme drop it was enough to cause symptoms.

    She is also seeing Dr. Sica at MCV who is following her for the POTS symptoms and ordering the hydration therapy. His believes that once the POTS is better controlled the brain fog and the "anxiety" will be eliminated.

    Most doctors don't understand Dysautonomia or Mitochondrial disorders. It is also interesting to note how ofter Type 1 diabetes shows up in the research when searching on the disorders. Chase is currently being evaluated with some neuropathy issues that they don't believe are related to D, but a mitochondrial disorder.

    And to make things more interesting, a cousin, that is 6 months younger than my daughter, is currently being treated for the same conditions. So we are definetly seeing a gentic factor in our family.

    Please feel free to contact me if you want to chat.

    http://clinicalposters.com/news/2011/0325-dysautonomia-mitochondria-pots.html
     
  15. Lisa P.

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    This is fascinating, thanks for posting.

    There is definitely a fight or flight component to my daughter's issues, it was explained to me that she doesn't up-regulate and down-regulate like she "should".

    We also noted, for example, that she had wild blood sugar swings even though she wasn't diabetic before diagnosis and treatment. It's like when the central systems in your body are messed up it dominoes and affects so many other systems. The good news is that when you figure out some central issues it can push the other issues to resolve themselves. The bad news is that it can make diagnosis difficult because all those secondary symptoms mask the central issues.

    It seems to me this fits well with the OP's daughter's troubles.

     
  16. Chaser

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    I am starting to see slight fluctuations in my nephew's BG, who now resides with us. I only get concerned when he is symptomatic - major thirst, bathroom, etc. When checking his fasting BG it has been what I would consider high normal. Endo is aware and we are monitoring. But he also has the symptoms associated with POTS. When living with his mother he had all sorts of mental dx's. ADHD, Bipolar, ODD - he also had major issues with sleep. Of course a lot his behavior has changed with the change of environment, but the possible underlying cause of the symptoms are very interesting.

    I would welcome any discussion off CWD in regards to type 1 diabetes and other autoimmune disorders regarding dysautonomia.
     
  17. Lisa P.

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    Clare was insatiably thirsty at night and then randomly during the day, almost a panic thirst. The doctor explained that her body was essentially trying to thin it's blood so it would move better, not pool in her extremities, so it was craving water. But you need salt to hold the water in the blood (that's why folks with high blood pressure cut down salt, so their blood becomes less watery!) so since she didn't have the salt all the water in the word didn't help. Once she started drinking Gatorade (yuck) every morning, our whole world changed.

    Her bg fluctuations seemed to be a reactive hypoglycemia -- on the CGMS (I cheated and stole it from her sister for a few days :eek:) she seemed to go as low as 40, although that may have been off. We never caught her that low on a meter. But I gave her carbs once and followed her from the 70s to 190 and back and forth, it was like dropping a rubber ball, she'd bounce less high with each bounce until finally evening out.

    Sorry to the OP for the hijack, hope the discussion is of some help to you!

     
  18. Christopher

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    Why not keep it on CWD, just start a new thread. Maybe the resulting discussions could help someone in the future who is searching for information or answers about an issue they are facing. Just a thought.
     
  19. denise3099

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    Thank you thank you. This conversation is fascinating and has given me a lot to think about. All the research in the world won't help if you don't know what you're looking for. You need actual parents and people who get it to really point you in the right direction. Thanks so much.
     
  20. MamaLibby

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    I think some of this explains part of what happens with my son Nick. I know he has other emotional and sensory problems, but this might be some of it. He has so much trouble transitioning from sleeping to waking, and waking to sleeping. And I've seen his temperature be 97 or 98 when he's obviously sick and he should be running a fever.
    I've also noticed that when I was in my teens/early 20s, I would have frequent dizzy spells and my heart would be pounding after walking up a flight of stairs or going for even a run (light jog speed). Crazy...This is really interesting. Thanks for starting this!
     

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