Discussions By Condition: I cannot get a diagnosis.

my daughters unexplianed hypoglycemia.

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: theweirdone
  • July 16, 2009
  • 05:40 PM

I am on the look for a diagnosis for my 3 yr old daughter who has been suffering from hypoglycemia which no one can figure out why. It doesn't happen all the time, in fact, its usually every two months. It comes instently, with no warning.

Here is her basic history:

- Born 5 days early, 6 pounds 12 ounces, naturally with no complications.
- Was slow to develop with everything from rolling over, to crawling, getting her teeth, walking, etc. She is still slow.
- Had jaundice, was cured on its own.
- Had unbelical hernia, cured on its own by age of 2
- Had RSV

When the symptoms of hypoglycemia started:

- Suffered a seizure in July of 2008 - reason is still unknown, even to this day. She had to be brought out of the seizure, was in intensive care, seizure lasted almost an hour. At the time of this seizure CAT scan were done, MRI, and many different blood tests, and a spinal tap. No reason was shown for seizure.
- Results from MRI showed her pituitary is higher then normal, and somewhat separated.
- She was put in Tegretol to prevent further seizures. Has NOT had a seizure since.
- A few months later her first hypoglycemia episode happened. It started suddenly with vomiting only, she was unresponsive for the most part, her eyes were rolling in her head, she could not focus but would cry when poked to get an IV put in.
- At this time, in the ambulence, a shot of glucagon was given for the first time, it did not work. They got an IV in and gave her D10 dextrose, within 5 minutes she was "back" from wherever she was.
- It was found at this time she was cortisol difficent. She was then put on Cortef medication to make up for what her body was not producing of cortisol. She is on 3mls 3 times a day.
- Episodes of this SAME hypoglycemia kept happening, usually every two months. It always started the same with vomiting only, and within 5 minutes she would be unresponsive. 911 would have to be called. Her blood sugar would be around 0.9 to 0.5 when they would test at the ER. She would come to as soon as dextrose was administered.
- 2 hormone stimulation tests were ran on her. First time was in Oct. 2008 and showed only low cortisol. Second one in June shown she is growth hormone difficent, and is now on growth hormone as well. It is an injection that she is given 6 days a week with one day off.
- She just had her 5th episode of hypoglycemia this past Sunday, and again for the 3rd time was given glucagon, which did not work. In the ER she was given dextrose, saline, and cortisol and was brought out of her attack within a couple minutes, like usual.
- Like all other hospital stays she is a mystery. Her endocrinologist has now said her hypoglycemia is no longer endocrin related and has to be something else. We then saw a metabolist in the hospital, she too said this is NOT her specialty either, and it has to still be endocrin related.

Out of 5 endocrinologists, 2 pediatricians, multiple ER doctors, and a nurologist no one understands or know what to do or say. We know she was diagnosed with hypopituitarism - but her hypoglycemia is unrelated to this as if it was only hypopit the cortef and growth hormone would be helping and she would no longer have these episodes.

No one knows why these are happening to her. Apparently all the test they have ran show her liver, kidneys, and adrenals are working properly. We know her pituitary issues and know the cortisol and growth hormone are issues, but so far, her thyriod is still working fine.

She has to wear glasses as her optic nerve is effected by her high pituitary pushing on it. She has had two MRI's on her brain, both only show the problem with her pituitary and nothing else. No Xray, ultrasound or MRI have been done on her stomach, liver, or kidneys as of yet.

We left the hospital again with no answers as to why, only this time her pediatrician says to give her two teaspoons of cornstartch before bed, so see if that helps. Our only other option right now is to give her a permanent IV in her chest so when there is an emergency she can get what she needs ASAP. She is very very hard to find veins on, and her veins tend to collapse or stop working all together. Any IV that is put into her usually stops working after a few days, so this is the only reason they want to give her a permanent IV.

We have to take her blood sugar every morning, usually it is around 3.5 to 4.8 which we were told is fine. Nothing seems to trigger these episodes, everything can be completely normal the day before, she can even eat pasta before bed and yet, she will go into hypoglycemia around 8am. Its random, we never know when this will happen. Every morning we are on edge waiting. Once we know shes ok, we know today will be a good day.

She is now starting to loose the hair on the top of her head. Her pediatrician says its because of the hypoglycemia episodes but the metabolist dissagrees and thinks its got to do with endocrin problems. She has always had thick dark hair up until now.

We are at our wits end, we don't know where to turn.

She is short and chubby, she always has been, but now she is bloated as well from the hormone replacement. She is still too short to climb the stairs properly. She is still developmentally delayed of course, but getting better. She has a short neck.

I am pretty much looking everywhere for other ideas, thoughts, or guides as to what to do or where to go now. Any thoughts, opinions or ideas are welcome!

Thank you for your time :)

Reply Flag this Discussion

5 Replies:

  • Hello Blaze, Thank you very much for your reply. I have read though the posts and the links you gave and appreciate the input. I have printed all of it to bring to her next pediatrician appointment.:D From what I gather, from your post, is perhaps she is having an environmental stress which we are unaware of, therefore we can't double her cortisol, like we normally would do if she was under stress like a cold/flu, fever, broken bone, etc. Which in the big picture this makes sense execpt when she is admitted to hospital with her hypoglycemia episodes her cortisol is sky high, its her glucose that is completely depleted even AFTER the glucagon shots, which is why only the dextrose/glocose that will bring her out of these episodes. She is on the max daily dose of cortef for her weight and height and still these episodes happen, and again, they only happen aprox. every 2 months. Its so confusing since all blood work done on her liver shows no problems.... As for where we live, its in a large city, pollution galore of course, cell phone towers every 10-20 blocks, wireless internet all over, etc. We have two other daughters, both are completely healthy with no problems, developed normally and have never had other issues. We, my husband and I, are also fine. No genetic problems run in the family. Thank you again for your post. I appreciate your input. Please keep them coming, anything I read I am bringing to get doctors for ideas or answers.;)
    theweirdone 1 Replies Flag this Response
  • I also had experienced hypoglycemia. We couldn't figure it out until we went to an The LaCroose Allergy Associates. In my case, I had an allergy induced hypoglycemia. I am allergic to petroleum products and whenever I got around the fumes from gas, asphalt, etc. I would bottom out and get angry. Since receiving therapy this has greatly reduced my problems. I hope that you find a solution for your child.
    Anonymous 42789 Replies Flag this Response
  • It sounds like you have been through a lot! I know they have probably done quite a bit of testing... What about fatty acid oxidation disorder? Have they looked at the liver, hyperinsulinism, insulin antibodies, amino acid levels, and somatostatin (inhibits release of some gi hormones). Maybe it is something preventing the breakdown of her nutrients. You say it can happen at any time or is it just when she wakes up in the morning. Sometimes with simple carbs the body can have a spike and crash effect with the sugar in the blood. What about seeing a gi specialist?
    Anonymous 42789 Replies Flag this Response
  • I just read an article on neurotransmitter diseases that sounded similar to what you have experienced with your daughter. You will see some stories about babies who have gone through similar circumstances. http://www.thefreelibrary.com/Pediatric+Neurotransmitter+Disease+Association:+dedicated+to+raising...-a0103378667 The Pediatric Neurotransmitter Disease Association (in article) may be of help. God Bless.
    HopeAndDream 1 Replies Flag this Response
  • Hi . I am a visiting nurse from the U.S. Please do not spend much time on the electrical current theories. I am a director of a non-profit international group. It's called Congenital Hyperinsulinism International. (Congenitalhi.org) There is a good site called www.sur1.org that explains what hyperinsulinism is. There are many kinds of syndromes that also can include insulin instability, like CDG or Kabuki syndrome. Have your doctors ever checked a fasting study on your daughter? How about insulin levels when she had low sugars? How does she feel if she eats only protein without carbs? There is a kind of hypoglycemia that is protein sensitive. Some of these diseases are found with a blood test to check for genetic defects. It is good that her blood sugars are above 4, but do they ever go lower than 3.7? Aside from giving her a permanent IV in her chest, could you consider a feeding tube in her stomach? You can give high glucose solutions through a gastrostomy tube to bring her sugars up. Can you ask your doctors to contact Dr. Charles Stanley at Children's Hospital of Philadelphia? He will be happy to talk directly with your doctor.
    visiting nurse 1 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.