Alex's great HBA1C! 6.0% Beat that!

Last week, Alex had to go to the lab for her HBA1C test. We went to do the blood draw on Tuesday and picked up the results on Thursday. For the uninitiated, the HBA1C shows how well insulin and sugar levels are maintained over the previous 3 month period. When Alexandra was diagnosed, her HBA1C was 14.7%. Anything over 10% is poor diabetes management, and all diabetics strive for numbers in the single digits.

Well, drum roll please, Alex's HBA1C was 6.0%!! That is almost as good as mine! (Non-diabetics are usually between 4% and 5%.) Granted, she's still in her honeymoon, so her own body is helping by kicking in a little insulin. But, it means that we're on top of this, and with God's help, we'll stay on top of it.

We go back for another test in December, and hopefully we can stay in that very nice range.

When we saw Alex's doctor on Friday, her jaw dropped so fast and far it nearly hit the desk! I am convinced it's because most locals don't have the tools and means (i.e. money) to keep their kids in range.

On a side note, meters donated by many many people have finally arrived in Ghana and I should be collecting them next week. Dr. Renner will have them in her hands by mid-October when she returns from holiday. I hope that in this small way, we are well on our way to helping other Ghanaian children achieve great HBA1C tests, just like Alex's!

There are other children with Type 1 Diabetes in Ghana! Who knew?

Late Thursday afternoon, we met with a support group of other parents of children with diabetes here in Ghana. There weren’t a lot of people, but there were enough children there for Alexandra to finally understand that she’s not in it alone. The ages of the children ranged from 1 up to 14 years old. Some of them came with their mothers, fathers, aunties and in one case, grandfather. Not all of the individuals spoke English, some of them were clearly from remote villages, but I thought it heartening that they came all the way to Accra, battling crowded trotros with crazy drivers and long waits in traffic jams, to be a part of this group.

The meeting started out with Dr. Renner asking all of the children to introduce themselves – their name, age, school and how long they’d been “friends” with Dr. Renner. Again, the range was broad, Alexandra and 3 other children were all newly diagnosed, within the last 4 months, and a few of them had been with her for 10 years already.

The first guest of the day was really the most encouraging. Nashir is a 49 year old gentleman, of Indian descent, but born and raised in Ghana. At the age of 7, he was diagnosed with diabetes. He told of how difficult it was as a child, how he had lost almost half of his weight due to incorrect diagnoses for 4 months, and finally a doctor at the Military Hospital saying, “Hmmm, could this be diabetes?” He offered such encouragement, maybe not so much to the children who were busying themselves with the free food that Dr. Renner had begun handing out, but the parents were enthralled. He looked fit, trim and healthy, and his outlook on diabetes – as a disorder, not a disease – gave us all hope and reassurance. It is possible to live a long and healthy life, even here in Ghana!

The doctor was talking about nutrition, and I realized that she was aware of the (mis?)information from the dieticians because she indicated that children shouldn’t be restricted to a “finger” of this or “two fingers” of that, which is the way the dieticians describe the amount of food to eat. She understood that children need to eat to grow. With that in mind, she started passing food around. Oh boy.

Just prior to the start of the meeting, Alexandra had polished off half a dozen crackers and a small juice box. She really didn’t need all this food now, but I couldn’t deprive her, because everything looked so nice. First, juice boxes and then individual trays of fruit were handed out to the kids. Alex had both. Then they passed around sandwiches which we were told were “healthy” – consisting of tuna fish, lettuce and tomato on white bread. It looked nice, but Alex preferred the two meat pies that were handed out to the parents! So, she gobbled that down instead. Then cream crackers were passed around and some weird concoction that woman had donated – she claimed it was milk and juice mixed together, but it was warm and not so nice. A lot of whispering was going on as people sniffed and sipped, and I was reminded of one of the Little Rascals episodes… whisper whisper “don’t drink the milk, it’s poisoned.”

A clinical psychologist was on hand to talk to the children about difficulties, and the kids spoke of being upset that they couldn’t eat sweets like their friends could, and some were upset because they were singled out in school or being called “sickler,” which happened to one little girl who had passed out from low blood sugar. That little girl, well, I don’t think she’s got a glucose meter so she never knows how low she goes. Her mother saw me take out Alex’s meter to check her sugar at the end of the meeting, and asked to see it to show the girl’s grandmother.

The doctor singled me out to list some websites on the board which were very handy, and naturally I listed all of my favorites which have been so helpful to me. She also mentioned that a brochure would be available shortly and that Alexandra was going to be on the cover of it!

By the time we left it was almost 6:00 pm, and Alex was due for her insulin. She checked her sugar – 15.7!! – all that food, I guess. But I gave her her insulin and by the time we got home and she was ready for a snack, she was back to normal ranges.

I’m anxious for another parents’ meeting. Hopefully, by that time, I’ll have some donated meters to give out. These kids deserve a chance.

Korle Bu -- Nights 4 and 5 and Finally, Home

Let me forewarn you. This is a long post, so if you've got to use the bathroom or need to refresh your drink, go do it now.

Nights 4 and 5 at Korle Bu were really more of the same, except we we no longer had the room to ourselves. A little boy named Issah was put into the bed next to us -- not sure what was wrong with him, though he did need to be given blood at one point. He cried and cried each time they had to hook him up to the bag. The mother was told that he would be in the hospital for 5 to 6 weeks. WEEKS!!! After the doctors left, I heard her moaning to herself, that she was going to die. You've got to understand, at Korle Bu, the parent is also the nurse, and aide and everything else a child needs. No doubt, she was worried about how she was going to exist in the hospital with her son for that long, basically abandoning every other family member in the process. I learned from her later that this was her youngest child (he was about 5), so the others were home being cared for by someone other than she. I'm sure she was also worried about how much something like that was going to cost.

As I said previously, the "amenity ward" had no amenities... just beds separated by curtains (donated by Angel Trust which was embroidered on them in big gold letters!), a small fridge and a sink in the corner. No television, no toys, nothing at all.

Alex and I were lucky because we had the laptop, so when Issah wasn't sleeping or being tended to, we drew the curtains open, turned the laptop around so they could see, and we all watched the Wizard of Oz (yes, again!) and Sponge Bob cartoons. It kept the kids quiet at least.

By the time we were ready to be discharged on Monday, we waited for the bill to be presented. And waited, and waited and waited. By 1:00 pm, no bill, and Sly was getting annoyed, and the kids were hungry. So, we told the nurse we'd be back on Friday for Alex's check-up, and take care of the bill then. Fortunately, they let us go, but for parents who appear not to have the financial means they wouldn't release them. Trust me on that; those parents would have to stay until the bill was settled. Oh, before I forget, the bill was for (equivalent) $78 for 5 nights, and some medical supplies (I.V. hook ups) and we were given credit for the saline we didn't use and gave to the doctor.

Now, even though we'd been in the hospital for 5 days, we still hadn't seen a nutritionist about Alex's food, nor had we been taught how to use the insulin pen. So we left, and figured we'd figure our way through it. And, of course, we have.

Friday we returned for Alex's check-up, and the doctor was pleased with her blood sugar numbers which showed a nice decline. Then she sent us off to the nutritionist. That was a complete joke. With all due respect to the nutritionists, they haven't a single clue as to what a Type 1 diabetic child needs. The tip off to me should have been the fact that Alex was the only child in the clinic, for the whole 2 hours that we were there.

When we went into the nutrition clinic, there was a room full of adults of all ages and sizes waiting to see the nutritionist. Sly fortunately bullied his way in and got someone to take Alex's weight and fill out her card. Then we waited and waited and waited (again). Over an hour passed before we were set to see the nutritionist. Poor Alex was starving by this point, and I kept passing her crackers and juice to eat, but she really wanted lunch and she was due.

We gave the lady a note from the doctor, which basically said that Alex is now in your care, please bear in mind that she is a child and she needs to eat to grow. Very nice. But, who cares what the doctor says. Not the nutritionist.

She told us Alex could have a piece of bread with butter for breakfast, and some tea or milo with a teaspoon of sugar. She could have a ball of kenkey or banku, she should eat a bowl of fufu. She should not take dairy, except for a few tablespoons of condensed milk and then limit intake to only 2 or 3 times a week. She should eat porridge. She should eat green vegetables like kontomire and spinach. She shouldn't eat more than a tin of meat (the tin being the size of an anchovy can). She shouldn't eat eggs more than twice a week.

Well, we listened politely to all she had to say. Thanked her for her time, and them promptly dismissed all that. How in the hell could Alex grow, much less THRIVE, on so little food?!

Here's my take on this lady. She may know her stuff, but only as it relates to overweight adults or children with type 2 diabetes, who need to diet anyway.

So, we basically ignored her instructions. I went online, found a wonderful support group at www.childrenwithdiabetes.com, and learned that Alex can eat anything she wants, as long as her insulin is covered. Meaning, I have to give her enough food and carbohydrates to support the amount of insulin she gets, so that her blood sugar doesn't fall too low.

On the day of the meeting with the nutritionist, Alex weighed 19 kg (that's about 42 lbs and below the 10th percentile for weight). As of today (almost 3 months since the diagnosis), Alex weighs 23 kg (slightly more than 50 lbs). When we went to see Alex's doctor last month, her doctor was so happy to see that her weight increased. She is now probably at the weight she should be, for her age... I just checked, and she's just below the 50th percentile. YIPPEE!!!

Her HBA1C was 14.7 a week after diagnosis. The HBA1C blood test is an indicator of how well a person's insulin needs are being met over the previous 3 months. A non-diabetic person would be around 5. There is a scale, and for a diabetic, between 6 and 7 is ideal, above 7 means you may have to tweak your insulin management, above 8 means you need a bit more tweaking, above 9% to 11% you've been doing a poor job of managing your insulin. Anything above 12% means you're doing a really crappy job and you better get help fast. Alex was 14.7%. Her next HBA1C is next week, so we'll see how she's doing.

I've been looking at Alex's blood sugar levels and averaging them, and she's down to 5.9 (106 on the U.S. scale); she was higher than 33.3 on diagnosis or up in the U.S. 600s range. We have up days and down days, and days that we can't figure out why she's high or low. But we're managing them, day to day, meal to meal.

She started school on Tuesday (grade 3!), and was entirely on her own. She had learned to check her own sugar level over the summer, so that we didn't have to leave her meter with the librarian, as we originally thought. She has shown some amazing independence, really. She's been on the low side each time she checks her sugar, first day was 2.8 (50 U.S.) and 3.2 (58 U.S.) yesterday, but she knows to eat her glucose tabs when she's low and drink some juice. We have to figure out a better breakfast solution to keep her higher until lunch time, cause her snack is not carrying her over well. Today, I tried 1/2 cup of Lucozade with breakfast, so we'll see how that works.

Today, we're off to Korle Bu again. This time, not for a check-up, but for a meeting with other parents of children with Type 1 diabetes. The doctor has realized that, in me, at least, she has found a very vocal, proactive parent, and I think she's impressed with Alex's progress. So, this meeting is a way to give the other parents some guidance or encouragement, from a parent's perspective. I'm looking forward to it. I hope I can help.

Oh, and after the medical injustice posting earlier, you will not believe the positive response to that! So many people have offered to help Ghanaian children with Type 1 diabetes. The parents forum at the childrenwithdiabetes website really rallied behind me, and we've got about 30 brand new glucose meters and some strips heading over here soon, courtesy of Leanne's wonderful husband... you all remember Leanne, right? Leanne is an American Mom in Africa, who had the best stories of life in Ghana. I'm still waiting for her to start blogging about life in Texas, cause I really miss her creative craziness.

Another poster to that blog post works for a company in the U.S. which produces Lantus insulin, and she has been communicating with me and with Alex's doctor and trying to coordinate something between the doctors at Children's Hospital in D.C. and Dr. Renner at Korle Bu. Keep your fingers crossed that soon, these children here in Ghana will have the same support as children with diabetes in the rest of the world.