Dr. Garg Consult

Dr. Garg just left and I have one word.... Amazing! He was so thorough and had the most sensitive bedside manner. He made Allorah feel comfortable and at ease and that is very important to me. His evaluation showed the typical sign of lipodystrophy and an enlarged liver. She will have the MRI of her liver tomorrow to see how much damage is there. She had photographs today to document the signs of the disease as well. She will have skin folds calculated tomorrow too. Most of her labs will be back tomorrow and Dr. Garg will be able to tell what's the damage. So I believe we are done for today and will be heading to dinner and to take the girls to the movies.

Day 1 at UT Southwestern

Today has started for Lola already. We checked in yesterday evening and went to dinner at Maggianos where we all enjoyed a nice evening. We checked back into our luscious suite here at Le Resort UTSW and got settled in. It's nice because we are able to leave the facility and she isn't just stuck here.
This morning, bright and early, we got her up for vitals and weight. The nurse, Claudia, came in a moment ago and started her IV and got blood work from her. She had to start a glucose tolerance test this morning so if any of you all have had one, then you know how horribly sweet that juice is. Lola actually liked it and chugged it like a champ, the nurse was amazed. About 10 minutes later, Lola wasn't feeling so hot and said she was nauseous, so I explained to her that it's normal and to try and go back to sleep. She did and is passed out! The nurse just came back in for another blood draw and she didn't even wake up. Dr. Garg is in clinic today and will come by after clinic to see her. She is scheduled for an MRI of her liver this afternoon. I will be checking in later with more info as soon as I hear anything.

On The Road Again

It was bright and early when we hit the road today. We are Dallas bound and praying we get some answers for Lola. We check into UT Southwestern tonight around 6 and testing will start. Please send your prayers and good vibes to Allorah. Please check back for updates and pictured from the road.

Schools Out!

I cannot believe that another school year has come to a close. I offically have a senior in high school and a 7th grader! Wow! I can say that I officially feel old! The wrinkles and grey hair that I sport are evidence that its true! It will be a very busy summer for my family. We will be leaving for Dallas on Monday morning for a week, then heading to Chicago on June 16th for Allorahs surgery the following day and then her appointment with Dr. Pachman on the the 20th. Then Jo got a car and we will be bringing that home and working on that for her, preparing the house so I can rent it out, packing and cleaning and then moving up north and getting situated up there, then finishing up the summer with a trip to Vegas in September to tie the knot! It will be a hectic one for us thats for sure. Hardly enough time to relax.

Relax

It was a nice weekend of relaxing for me. After the emotional rollercoaster the last 2 weeks, I needed to just relax this weekend and regroup. So off to Espanola I went. We were invited to 2 parties on Saturday, a graduation party at Black Mesa golf course for a friend and colleague of Nathans and then to a dinner party at Rancho de Chimayo for the promotion of one of his bosses. Both parties were nice and we had an amazing time.


Nathan and I at Black Mesa Gold Course

 For the first time in my life, I bowled on Saturday. Yup, thats right, you heard me, I BOWLED! And not by choice! It wasnt bad, but I totally had to face my fear head on and put on shoes that did not belong to me!! I wasnt happy about it, but the 2 cheladas I drank helped with the anxiety I was having!


Nice, huh?

 It was a beautiful weekend. We even went to Abiqui lake on Saturday and then I met a good friend for breakfast in Santa Fe on Sunday morning on the way home. It was what I needed to be able to refresh, regroup and focus on next week.

Good news!

It's good news!! Allorahs glucose and A1C are better so they aren't going to start her on insulin as they initially thought. Dr. Kaufman thinks we can control it with diet alone. I had already initiated a strict sugar free and low carb diet as soon as we found out and that was enough to bring her numbers down. I am so excited and thrilled. Allorah has to check her glucose 3 to 4 times a day and keep a close log and then we will go to Dallas to see Dr. Garg and see if she is a candidate for the Leptin treatment. Dr. Pachman also said we can try and lower her Presnisone from 10 mg. To 9 mg. This will help with the diabetes. So our next step is Dallas. This diet will be difficult for Lola since her diet is so restricted already with it being gluten free so now it's that and low fat, low carb and no sugar! If you have any recipe ideas please send my way! Thank you all for your prayers.

On the road...

We are heading out this morning to go see Dr. Kaufman in Albuquerque to see what the first plan of action will be. We are all on edge and nervous. Allorahs stomach is in knots and I have tried to get her to relax. Easier said than done. We will see the diabetic educator as well.
I did hear back from the nurse of Dr. Garg, the metabolic disease specialist in Dallas, and it looks like we will be heading out to UT Southwestern on Memorial day and staying there until the 5th. We just want answers about this new condition. There's not much I know about it. Please say a prayer for Allorah today, as she is scared, as am I.

Waiting...

As I sit here waiting for our appointment with Dr. Kaufman, the endocrinologist in Albuquerque tomorrow, I am reminded of how much anxiety I have building up. I am also waiting to hear back from Claudia, the nurse for Dr. Garg in Dallas, to see what date we need to be there. It's all a waiting game, waiting to see what the outcome is, waiting to see how this will impact my Lola, waiting to see what new meds they want to put her on, waiting to see how the meds will make her feel and how and if they will affect the disease process, all a waiting game. She's a nervous mess, I'm a nervous mess, my oldest daughter, Jordyn, my parents, Nathan, my family, we are all stricken with this anxiety of what they will tell us, how serious it is. I know that I am a pessimist, but I prefer to think I am a realist, but at this moment in time, I wish I was more the optimist, maybe it will hurt less... I doubt it. :(


So last night Lola wasn't feeling good at all. She said her stomach was hurting and she felt like she did when she was getting the stomach bug. I had her give me a urine sample to see if there was any glucose or ketones spilling out, but thank God, both were negative. Not a sign in her urine, that's a plus! I was so relieved and I know Allorah was too. She keeps asking me questions about the diabetes and insulin and I don't have answers for her, I wish I did. We will get our answers tomorrow. It will be a long drive to Albuquerque but I am keeping my fingers crossed. Dr. Kaufman is an excellent doctor and is so sympathetic and caring. She will know whats best for my baby.

Why?

So this is the latest update on Allorah. I received a call on Monday from Chicago about her lab results from last month. They said we needed to follow up with her endocrinologist in Albuquerque for elevated triglycerides, elevated glucose, insulin and hemoglobin A1C. they were going to send the lab results to Dr. Kaufman and that Dr. Pachman was going to send her a letter as well. So I called and scheduled an appt to see Dr. Kaufman next week on the 17th. The following morning I get a call from Dr. Kaufman, her endocrinologist, telling me that she received the labs and letter from Dr. Pachman, she immediately called her to discuss what she saw. She told me that she now knows why Allorah's triglycerides have been high and it is making sense. She informed me that she has now acquired generalized lipodystrophy AKA Lawrence Syndrome and its very serious and extremely rare. She took the liberty of contacting Dr. Garg at UT Southwestern in Dallas and we need to take Allorah there. He is the leading physician that sees lipodystrophy cases and devotes his practice to this. I have attached a website explaining this diagnosis.


http://www8.utsouthwestern.edu/utsw/cda/dept105805/files/106988.html

She informed me that it is very rare and she knows about this disease enough to know that she needs to see the best. So I told her to please get it set up and we will go. Dr. Garg called me later that day and we talked and he informed me that he wants to get her in. His nurse called me yesterday and told me that we will need to be there for a minimum of 4 days. So off to Dallas we will be headed. We are looking at the first part of June and she is now working on getting her a room for there in the research unit and getting all her tests, scans and appointments scheduled. She is looking at insulin injections, as well as possibly being a candidate for a treatment protocol of a medication that Dr. Garg has initiated and only he can administer. So we will head to Albuquerque on Tuesday to see Dr. Kaufman and to meet with the diabetes educator and see what treatment she wants to start there. So that is where we are at now. We are praying that this hurdle is only a speed bump in her recovery and that once this gets controlled that we can get a better grip on the JDM. Please send her your prayers and I will keep you all informed.

Anxiety Stricken

So in the maddness that is Juvenile Dermatomyositis, a step back has been taken today. Allorah's doctor from Chicago called with some recent lab results from when she had her last appointment there on April 4th. Dr. P is wanting her to see the endocrinologist, Dr. Kaufman, in Albuquerque. It seems the long term dose of Prednisone that she has been on for almost 10 years has caused her to develop diabetes. Her insulin, glucose, Hgb A1C and triglycerides are ALL elevated!!! Why cant my baby get a break? Why does this keep happening? It seems that as soon as we think she is doing better, she is hit with a blow that knocks her down. I HATE JUVENILE DERMATOMYOSITIS, CURSE YOU, FOUL DISEASE!! So we are heading up to Albuquerque on the 17th for a consult as to what course we need to take. I am hoping that we can do this with maybe diet and exercise. It just really stinks because she is already on such a strict diet because of the celiac disease, a gluten free diet can be difficult for an adult let alone a child. So now she has even more restrictions! UGH!! She is such a trooper.