Saturday, January 30, 2010
Will The 3rd Time Be The Charm?
Thursday, I had my 8 year-old son and husband at home with a GI illness (so that's 2 sick children ), so what did I do? I left! :) I thought I'd have the kid's social security cards changed. We needed to change their names, birth dates, and citizenship status since we readopted them a couple of months ago. (Oh and the new birth certificates took 8 weeks.) So, I drove to the nearest SS office only to find that it "cappeared" as my 3 year-old would say. Luckily, my hubby remembered that he saw a new SS building on the far side of town. So once again I drove off. Next, you have to sign in via computer and get your computer-generated number. When my number was finally called, I met the lady that would be helping me. (I think I'm going to eventually help her!) She asked me why I was there, so I pulled out all of my paperwork and stated that I needed to change my children's names, dates of birth, and citizenship status. She exclaimed in a haughty manner, "My that's a lot!" I wanted to reply, "Just do your job!" I didn't though. I kept my comments to myself while I kept reminding myself of the madness she must see on a daily basis. Remind me to never work for the SSA if that's the attitude you adopt. Well, she got out of doing all that work because my lawyer had given me copies of our court papers and not certified copies. I still didn't want to go home to two sick kids, so I decided to make that drive to the court house. I would eventually need certified copies anyway. So, I hop in my car and head back in the opposite direction to a different county. When I went in and asked for the papers, the lady helping me looked wide-eyed and said, "Your adoption isn't sealed?" Heck, I don't know. Wasn't she the one looking at the records? What was I going to do if the records were sealed and I needed these papers? I guess the lady seeing the stress on my face said, "Don't worry. We'll get it straightened out." I did get those certified copies, and I headed once again clear in the opposite direction. The wait at the SS office wasn't nearly as long, and I happened to get the same girl. Oh lucky me! She was more pleasant this go round, but this time she asked, "Why are you changing their birth dates?" I was prepared! I pulled out my Ipod and showed her our Christmas picture and asked her if she thought my son looked like he was 3. I sensed the shock on her face. She called in another person, and I felt I had to educate them about another country. Don't take this the wrong way. I actually enjoyed this part. However, I still didn't get the stuff changed. Ugggh! They claimed I needed a Certificate of Citizenship or a US Passport. Bull! I stated that the Child Citizenship Act of 2000 states otherwise, and they claimed they looked it up a couple of days ago. I left defeated and second guessing what I knew, but just wait until Monday!!! I looked up the Act, as well as the Social Security policies . They were wrong, and I will go in Monday armed with copies of those documents. I mean, they can't possibly know everything. Foreign adoptions are still very few and far between....
Monday, January 18, 2010
Long, Awaited Mamush Update
I've been trying forever to get my husband to make another post. The first reason is because I love the way he words things, and the second reason is because he knows all the medical words and explanations. I didn't want to sound stupid, especially if some medical professional is reading this blog. And guess what!??! I finally get to share it today! Enjoy!
"11-12-09
Finally, after a lot of research and string-pulling, we saw the Pediatric Endocrinologist at Texas Children’s hospital. This was quite a battle, considering that every physician that has seen Mamush so far seems to think that he is “normal”. We found Dr. Morey Haymond who is chief of the division of Endocrinology at Texas Children’s Hospital (TCH) via an internet search and convinced our pediatrician to do the referral for us.
Today, we saw an Endocrinology fellow, followed by a whirlwind appearance by a guy named Dr. Jeha. His opinion was that Mamush is malnourished and that we can follow up in three months. Now, I know that I wasn’t the most dedicated student and didn’t make it to every lecture in medical school, but I must have missed a lot more than I thought I did, because this revelation didn’t make any sense to me at all.
Up to this point, we knew that Mamush was below the growth chart for weight. Also, when plotting his height, his dot fell in the middle of the weight chart (below on the same page), somewhere close to where his weight SHOULD be. He also has coloboma, which is a malformation of the eye that involves the pupil and the retina, making him functionally blind in his left eye; This condition is almost always associated with some type of genetic syndrome or growth abnormality. Luckily, his heart, brain and kidneys, the most frequently associated organs, all have turned out to be fine.
We had also brought along labs that I had done in my office under the advice of a friend who is a big-people Endocrinologist. Mamush’s insulin-like growth factor 1 (IGF-1) was unmeasurable. IGF-1 is produced in the liver and is responsible for normal growth. IGF-1 is only produced in the presence of human growth hormone (HGH), and therefore is a good measure of HGH levels. All of Mamush’s other labs have been normal so far including blood counts, liver functions, kidney functions and thyroid hormones.
Dr. Jeha mentioned more than once or twice during the visit that some of the same things that we would expect to see in children with HGH deficiencies are also found in children who are malnourished. He also asked several times how long Mamush had been in our home and seemed to imply that prior to his migration to the US, he somehow was deprived of nourishment. I tried to tell him that we knew that Mamush had been in the transitional home since he was less than a few months old and that there had never been any evidence that he was EVER malnourished. I even tried to translate it into big, important, pompous Doctor words so he could understand more easily. He also explained away the non-existent IGF-1 level by saying that hormone deficiency can be a result of severe malnourishment. (Did I mention that ALL of his other labs were normal? I wonder if this was a case of selective malnourishment that only involved this one hormone…..)
Now, there is a saying in medical school that if you hear hoofbeats in North America, you shouldn’t expect to see a herd of zebras. Also, I think my dad used to say something like: “Don’t pee on my leg and then try to tell me that it’s raining.” I guess if Dr. Jeha had been raised by my dad, he would have been less likely to assume that a non-existent IGF-1 level had NOTHING to do with a child that wasn’t growing.
I have to be fair to Dr. Jeha. Not that I want to, but because my wife tells me to be nice. He did concede that Mamush’s food intake had been adequate, and we had also mentioned that Mamush suffers from frequent (and rancid, in my opinion) diarrhea. Dr. J was concerned that his malnutrition might be as a result of malabsorption of nutrients from a gastrointestinal issue. He recommended that we get an appointment with Gastroenterology (GI) before we follow up. Also, our pediatrician’s records were HIDEOUS when it came to following height and weight over the past year. We agreed to see GI and keep height and weight records until the next visit. We also left with a lab order for more tests, including a repeat IGF-1 level to see if it had changed. (Dr. J obviously didn’t pay attention to the date on the current level that was drawn the previous week. I know, be nice.)
We left the Endo clinic and went to GI to see if I could flash my Dr’s Club card and get us a walk in appointment. No such luck. They were all out of town at a conference except one doctor who happened to know me…..he wouldn’t see us either. He said he was too busy, being the only Pediatric Gastroenterologist in the largest children’s hospital in the South. I think it was because he remembered me. Holly probably would agree.
12-14-09
We finally got to see the Gastroenterologist today. There was no fellow today, and the Gastroenterologist, Dr. Redel, arrived at her opinion faster than Dr. Jeha had at the previous visit. (I wish I could do that. It would make my days a whole lot shorter. Maybe I can take some classes from them.) The difference this time was that Dr. Redel didn’t see any zebras. She walked in the room, introduced herself, looked at Mamush and said, “That kid isn’t malnourished.” She then took the next several hours (it seemed like) to explain why she didn’t think we needed to be in the GI clinic at all. The labs this time showed a non-existent IGF-1 (again), a normal IGF-BP3 (a binding protein for IGF-1 that is also produced in the liver), marginally low prealbumin (an indicator of recent, short-term calorie intake) and a high total albumin (a protein that is a very good measure of nutrition status over the long-term). Dr. Redel said that a marginally low prealbumin is common and has no significance. She also said that Endocrinologists like to blame the GI tract for Endocrine problems and it’s not uncommon for them to get all worked up over a low prealbumin. She told us to go away. She did, however, order some more labs: a RAST panel for food allergies, a t-Transglutaminase (tTG), and a stool alpha-1-antitripsyn (both to look for celiac sprue, a gastrointestinal gluten sensitivity). All of these eventually came back normal.
After leaving the GI office, I happened to say something about that I wish I could talk to Dr. Haymond. Holly said we should go look for him. This time, my Dr.’s Club card did us some good. We were directed to Dr. Haymond’s academic offices where everyone was more than helpful and soon we were talking with Dr. Haymond. We told him much of what had gone on so far. He looked at Mamush and whatever labs we had with us. He told us that he would look into it and that he would call us. We went home feeling like we might actually get some help this time.
12-26-09
Dr. Haymond called the house tonight?! It’s the day after Christmas and the man has nothing better to do than to call our house? He actually apologized for not being more prompt with his followup….WHATEVER! I wish I could get that kind of customer service at WalMart! He told me that he was very sure that Mamush had some type of dwarfism and that it was likely primarily and Endocrine problem. He had looked at the labs and was sure that the low HGH was responsible for the growth issues. We discussed some details about the labs, etc. that (I hope) I already knew. I just needed to hear it from him to put it all together. IGF-1 and IGF-BP3 are both produced in the liver when HGH is present. Hormones are very tricky to figure out when there is a deficiency. Since IGF-1 and IGF-BP3 are dependent on HGH for their production, one would assume that a deficiency of the first would always mean a deficiency of the other. This is not the case. The HGH has to bind to a receptor to exert its influence. There is also the possibility that the receptors can be defective or blocked by an antibody. What we are missing is an HGH level to match up with the deficient IGF-1. Either way, we know there is a deficiency of some type. If the HGH is normal, then it’s a receptor problem and what Mamush will need is IGF-1 replacement therapy. If the HGH is low, then he will need HGH replacement. Dr. Haymond also wants a “micro-array for gene deletion” lab done. This would be to look for genetic abnormalities responsible for all of these problems. He said we can try to get it done here, but recommends that we wait to get it done at TCH, because he only trusts their lab. We will also need to get an MRI of the brain, but Mamush will have to be asleep for that, so we will also do that at TCH.
So we finally got past all the zebra hunters and got an answer.
I think I’m going to write a book for medical professionals. The title is going to be: QUACK! No, Not You, It’s a Duck, You Idiot."
"11-12-09
Finally, after a lot of research and string-pulling, we saw the Pediatric Endocrinologist at Texas Children’s hospital. This was quite a battle, considering that every physician that has seen Mamush so far seems to think that he is “normal”. We found Dr. Morey Haymond who is chief of the division of Endocrinology at Texas Children’s Hospital (TCH) via an internet search and convinced our pediatrician to do the referral for us.
Today, we saw an Endocrinology fellow, followed by a whirlwind appearance by a guy named Dr. Jeha. His opinion was that Mamush is malnourished and that we can follow up in three months. Now, I know that I wasn’t the most dedicated student and didn’t make it to every lecture in medical school, but I must have missed a lot more than I thought I did, because this revelation didn’t make any sense to me at all.
Up to this point, we knew that Mamush was below the growth chart for weight. Also, when plotting his height, his dot fell in the middle of the weight chart (below on the same page), somewhere close to where his weight SHOULD be. He also has coloboma, which is a malformation of the eye that involves the pupil and the retina, making him functionally blind in his left eye; This condition is almost always associated with some type of genetic syndrome or growth abnormality. Luckily, his heart, brain and kidneys, the most frequently associated organs, all have turned out to be fine.
We had also brought along labs that I had done in my office under the advice of a friend who is a big-people Endocrinologist. Mamush’s insulin-like growth factor 1 (IGF-1) was unmeasurable. IGF-1 is produced in the liver and is responsible for normal growth. IGF-1 is only produced in the presence of human growth hormone (HGH), and therefore is a good measure of HGH levels. All of Mamush’s other labs have been normal so far including blood counts, liver functions, kidney functions and thyroid hormones.
Dr. Jeha mentioned more than once or twice during the visit that some of the same things that we would expect to see in children with HGH deficiencies are also found in children who are malnourished. He also asked several times how long Mamush had been in our home and seemed to imply that prior to his migration to the US, he somehow was deprived of nourishment. I tried to tell him that we knew that Mamush had been in the transitional home since he was less than a few months old and that there had never been any evidence that he was EVER malnourished. I even tried to translate it into big, important, pompous Doctor words so he could understand more easily. He also explained away the non-existent IGF-1 level by saying that hormone deficiency can be a result of severe malnourishment. (Did I mention that ALL of his other labs were normal? I wonder if this was a case of selective malnourishment that only involved this one hormone…..)
Now, there is a saying in medical school that if you hear hoofbeats in North America, you shouldn’t expect to see a herd of zebras. Also, I think my dad used to say something like: “Don’t pee on my leg and then try to tell me that it’s raining.” I guess if Dr. Jeha had been raised by my dad, he would have been less likely to assume that a non-existent IGF-1 level had NOTHING to do with a child that wasn’t growing.
I have to be fair to Dr. Jeha. Not that I want to, but because my wife tells me to be nice. He did concede that Mamush’s food intake had been adequate, and we had also mentioned that Mamush suffers from frequent (and rancid, in my opinion) diarrhea. Dr. J was concerned that his malnutrition might be as a result of malabsorption of nutrients from a gastrointestinal issue. He recommended that we get an appointment with Gastroenterology (GI) before we follow up. Also, our pediatrician’s records were HIDEOUS when it came to following height and weight over the past year. We agreed to see GI and keep height and weight records until the next visit. We also left with a lab order for more tests, including a repeat IGF-1 level to see if it had changed. (Dr. J obviously didn’t pay attention to the date on the current level that was drawn the previous week. I know, be nice.)
We left the Endo clinic and went to GI to see if I could flash my Dr’s Club card and get us a walk in appointment. No such luck. They were all out of town at a conference except one doctor who happened to know me…..he wouldn’t see us either. He said he was too busy, being the only Pediatric Gastroenterologist in the largest children’s hospital in the South. I think it was because he remembered me. Holly probably would agree.
12-14-09
We finally got to see the Gastroenterologist today. There was no fellow today, and the Gastroenterologist, Dr. Redel, arrived at her opinion faster than Dr. Jeha had at the previous visit. (I wish I could do that. It would make my days a whole lot shorter. Maybe I can take some classes from them.) The difference this time was that Dr. Redel didn’t see any zebras. She walked in the room, introduced herself, looked at Mamush and said, “That kid isn’t malnourished.” She then took the next several hours (it seemed like) to explain why she didn’t think we needed to be in the GI clinic at all. The labs this time showed a non-existent IGF-1 (again), a normal IGF-BP3 (a binding protein for IGF-1 that is also produced in the liver), marginally low prealbumin (an indicator of recent, short-term calorie intake) and a high total albumin (a protein that is a very good measure of nutrition status over the long-term). Dr. Redel said that a marginally low prealbumin is common and has no significance. She also said that Endocrinologists like to blame the GI tract for Endocrine problems and it’s not uncommon for them to get all worked up over a low prealbumin. She told us to go away. She did, however, order some more labs: a RAST panel for food allergies, a t-Transglutaminase (tTG), and a stool alpha-1-antitripsyn (both to look for celiac sprue, a gastrointestinal gluten sensitivity). All of these eventually came back normal.
After leaving the GI office, I happened to say something about that I wish I could talk to Dr. Haymond. Holly said we should go look for him. This time, my Dr.’s Club card did us some good. We were directed to Dr. Haymond’s academic offices where everyone was more than helpful and soon we were talking with Dr. Haymond. We told him much of what had gone on so far. He looked at Mamush and whatever labs we had with us. He told us that he would look into it and that he would call us. We went home feeling like we might actually get some help this time.
12-26-09
Dr. Haymond called the house tonight?! It’s the day after Christmas and the man has nothing better to do than to call our house? He actually apologized for not being more prompt with his followup….WHATEVER! I wish I could get that kind of customer service at WalMart! He told me that he was very sure that Mamush had some type of dwarfism and that it was likely primarily and Endocrine problem. He had looked at the labs and was sure that the low HGH was responsible for the growth issues. We discussed some details about the labs, etc. that (I hope) I already knew. I just needed to hear it from him to put it all together. IGF-1 and IGF-BP3 are both produced in the liver when HGH is present. Hormones are very tricky to figure out when there is a deficiency. Since IGF-1 and IGF-BP3 are dependent on HGH for their production, one would assume that a deficiency of the first would always mean a deficiency of the other. This is not the case. The HGH has to bind to a receptor to exert its influence. There is also the possibility that the receptors can be defective or blocked by an antibody. What we are missing is an HGH level to match up with the deficient IGF-1. Either way, we know there is a deficiency of some type. If the HGH is normal, then it’s a receptor problem and what Mamush will need is IGF-1 replacement therapy. If the HGH is low, then he will need HGH replacement. Dr. Haymond also wants a “micro-array for gene deletion” lab done. This would be to look for genetic abnormalities responsible for all of these problems. He said we can try to get it done here, but recommends that we wait to get it done at TCH, because he only trusts their lab. We will also need to get an MRI of the brain, but Mamush will have to be asleep for that, so we will also do that at TCH.
So we finally got past all the zebra hunters and got an answer.
I think I’m going to write a book for medical professionals. The title is going to be: QUACK! No, Not You, It’s a Duck, You Idiot."
Sunday, January 17, 2010
Happy To Be Nappy
Sunday, January 10, 2010
Feet On American Soil
One year ago today we were finally home. We all made it together, and have been changed forever by our experiences.
Thursday, January 7, 2010
Tuesday, January 5, 2010
Hospital Day
Sunday, January 3, 2010
Gotcha Day...
Not! One year ago we pulled into Hope's care center awaiting that picture perfect moment when we see the kids for the first time. I burst into tears from the anxiety. Okay. Reality check. It wasn't picture perfect but definitely memorable. We pull in and walk inside. We meet Tseday, Hope's nurse, who tells us the kids aren't there. She then hands us some prescription bottles. Ken looks at them and his eyes get big, and then he shows them to me. They are TB meds for Maritu! What the heck? We find out for the first time that she has been receiving treatment for a month. These next few days really seem like some plot from a soap opera. I didn't know what to say or do. We were already there, so I just thought I'd do what I do best...take pictures! Soon Tseday comes to us and says the kids were back, so I told Ken to turn on the video camera because it is a motherly moment. Oops! Someone forgot to tell Maritu. She took one look at us and started screaming! Not quite what I wanted to capture on camera, but it is something we can look back at and laugh.
Saturday, January 2, 2010
The Day We Arrived
or was it night? It was really hard to get adjusted to the new time. I remember being so excited to have survived the plane ride and land in a new country. What did the future hold? I have to laugh now and you must excuse my dry humor, but our first experience in Africa was scary. Our agency failed to have anyone at the airport to pick us up, and it was very late when we arrived. I guess I trusted my agency, so all of my contact phone numbers were packed, but how was I to call anyone anyhow with no phone? We finally got a taxi that was willing to take us to Bole Rock Guest House for $20. Little did we know that we could have walked, and we just got "took"! We were safe, and that's all that matters, right?
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