Hypoglycemia (low blood sugar) Support Group

When you had your children tested, was it persistant hyperinsulin hypoglycemia of infancy (PHHI)? There are now several perscriptions that can be given for this. My children don't have this, but I got this at infancy, & have had hypoglycemia ever since because of the high insulin levels. I eat small meals often, test my sugar levels, & carry glucose tabs, my doctor perscribed glucagon shots when I have severe low sugar reactions. Hope things work out for your children, those lows can be scarey.

Hi , I agree with Penney. Penney , did you know that there is a yahoo group for hyperinsulinism in children? (and adults) The parents on that group would LOVE to hear from you about your journey with PHHI...especially how you did with getting pregnant, etc.. There is also a new drug being tested at Children's Hospital of Philadelphia for adults.

Ninja, children don't NORMALLY have hypoglycemia. I would not accept this as a normal event. Did you check your child's blood sugar? Perhaps you need to take your child to a pediatric endocrine doctor. Keep a log for a couple weeks, and see what is really going on with your kids. It's possible that they can have a mild case of a disease that needs to be treated. Low blood sugars are not OK...hypoglycemia damages the cells in the brain and other organs (eyes, kidneys, etc...) Check out www.sur1.org, or congenitalhi.org

Ninja, taking your children to be checked by a pedriatric endocrine doctor sounds like a good idea, I hope things go well for them.
Visitingn, thank-you so much for the info on PHHI for adults, will try to locate that yahoo support group for adults with PHHI, I only have a work computer, so sometimes my time is limited. I see an internist on a regular basis, and through work a health coach is working with me, that's how I got the information about this support group.
And once again Ninja, good luck to your children.

Thank you for your comments. I have tried to take her to a couple of doctors, but haven't had any help or advice. It seems that most doctors do not recognize hypoglycemia and are not willing to help. I have not wanted to test her blood since she is still so young.

I have not heard of PHIH? How did your parents know to test you? What kind of test did they do to diagnose it? I have had symptoms of hypoglycemia all of my life and just figured that my kids inherited from me.

PHHI, or congenital hyperinsulinism is a genetic disorder; there are some forms of this disease that are identified through a blood test. There are other forms that have not yet been identified. It is characterized by low blood sugar associated with elevated insulin levels. You can contact Dr. Charles Stanley at Children's Hospital of Philadelphia, the leading US expert. If you haven't been checking your baby's sugar levels, you might want to start for a couple of weeks. Anything below 70 can potentially damage organs, and would be a reason to intervene.

Do children ever grow out of it? Could I have had it and not know that is what I had?

When I was diagnosed with hypoglycemia the doctor moved soon afterward. Any doctor that I have seen since then and mentioned that I have hypoglycemia either ignored me or said that there was no such thing as hypoglycemia.

I really appreciate your comments

My dear NinjaMother, you really have your "plate full". I wish I had some words of help for you, but I have no idea how to begin to cope with a 2 yr. old with hypoglycemia, plus the older child with hypo. plus home schooling, plus ... I do pray that God will give you the wisdom and help that you need right now, as well as in years to come!!

God bless you with patience, strenth,and wisdom, dear friend !!

I was diagnosed with PHHI when I was a baby, I was lethargic and had seizures. I had many hospital stays and was treated by glucose drips, glucagon, and frequent feedings. This is a genetic disorder, and is a challenge.
I hope you are able to locate a doctor that will test your children soon, & hope they have a less severe form of hypoglycemia.

Thank you HSTAR for your comments and prayers. It doesn't seem so bad for me. I just feel sorry for my mom. She had to deal with me having hypoglycemia and she didn't know anything about it.

Thank you visitingNurse I will try to contact the doctor told me about. I have been looking for a doctor that could help. My ten year old and I have low functioning adrenal glands and I am worried that might be the case with my two year old but have not found a doctor that knows enough about the adrenal functions or hypoglycemia in children to help. Most of them have just said let's wait and see.

As for you Penney, How are you feeling? I can't even imagine what you and your parents have been through. How were your pregnancies?

I had difficulties with my pregnancies. After I delivered my now 10 year old, we both started shivering so badly from being cold. They had to rush her off to put her under the lights. My blood pressure was 60/40 the whole time I was in the hospital and the hospital staff didn't think there was anything wrong with that. During all of my pregnancies they would say that they just worry about it going to high, while I was struggling with dizziness from it being so low.

Take care.