Lab results for DJ (I'm quite worried at this point)

SO, we got DJ's lab results back today. I would be lying if I said I wasn't worried. So last visit, we learned that he was anemic. Now re-tested for the anemia, he is borderline. Here are the new findings that are out of range.
Potassium - ref range 3.8 to 5.1  (He is LOW at 3.6)
CH Compliment Total 50 (marker of inflammation) (He is HIGH at 60)
Cholesterol Total - ref range 125-170 (He is High at 173)
Triglycerides - ref range 30-104 (He is very high at 136)
Hematocrit - ref range 35-45 (He is low at 34.4)

His doctor feels it is imperative that he be seen by a Gastroenterologist ASAP. Her suspicion is a G.I. condition of autoimmune origin. She sent the referral for authorization today. My worry comes from a place I didn't even understand until the puzzle (that is Lupus) began to fit together for me after watching Momma suffer with it. Anemia is a common condition amongst Lupus patients, as is an elevated CH Compliment (inflammatory condition) as is elevated triglycerides (in Lupus Nephritis patients) aa is low Potassium. Let's not forget the nausea and weight gain. DJ cannot smell food cooking (or very fragrant cooked food) without throwing up most of the time. He has been tiring easily, and he put on another 3lbs since last visit (2 weeks ago) to the doctor. He was already 24 lbs overweight, he is now almost 28 lbs over. He should weigh around 50 lbs. for his age and height. He is 77 lbs.
Something struck me yesterday, my best friend saw my son running around one day and did not recognize him. She thought "who is that chubby kid?" then noticed it was my son. She said (Oh my God Heidi, he looks swollen!) Then, yesterday (only a few weeks later,) she came over and said "Wow! He looks good today! He looks normal. Not all swollen up everywhere in his face.)
OH MY GOD! Are you kidding me? That is one of my main symptoms is my face swelling up all over. I never noticed it cause I see him every day. My poor baby. We gotta get to the bottom of this ASAP!

Post Neurology appt.

I am back from my Neuro appt. and from what I am being told, the white spots in my brain are most likely, Lupus Plaques. I do not present with the MRI of a person with MS, She said that many CNS (Central nervous system) Lupus patients do develope MS after a passage of time. This may mean that I have developed CNS Lupus now. I have already been dignosed with Systemic Lupus Eurythmatosis so this would be new.
I received a new prescription for Gabapentin or (Neurontin) now due to my tremors and involuntary jerking I experience with relaxing. It is also a mood stabilizer so that's a plus for me and the kids :) I am also being scheduled for an Eeg within the next few days to monitor for seizures. My vitamin D is low and my B12 is not where it should be so I may have an absorbtion issue. Both vitamins were increased but I will be taking the B12 as a sublingual suppliment now. Anyhoo...that's it for now, I will let you know if anything new comes up.
Gentle Hugs!
~Heidi

Never really works out......

I'm back, I went to my G.I. appt the other day only to be rejected because I needed a (prior auth or referral) from my General Practitioner.  My rheumatologists office told me that they called and checked and I did not need one for this. I had the appt. because I was in the E.R. with serious stomach pain and reflux issues. Prior knowledge says that I had peptic ulcers and Barrett's Esophagus (which is a pre-cancerous condition) brought on by prolonged untreated G.E.R.D. I have also had this burning spot in my gut that has been there for years. I describe it as someone slowly twisting a white hot poker through my abdomen back and forth. It's truly painful. I am nervous, and have been, because nobody has ever found the source of this pain. (Nobody has ever REALLY taken the time to look for it) is more like it. It is so precise that I can literally draw a circle around the pain with a pen! You would think that would be a good lead! So, in the E.R. they tell me that I need to get in to see my G.I. doctor ASAP because I have bleeding duodenal ulcers (that's new) and they could have been caused by my meds and made worse by stress. No big suprise there... I told my rheumatologist this at my appt with him a few days later and he stressed the importance of that appt. I reminded him how difficult it is to get a referral from my primary and he said WE WILL GO ABOVE HIM AND WRITE THE REFERRAL! I stood there as they called and they turned around and said that they were told I didn't need one for this. COOL! So I show up and get rejected. The assistant at the G.I.'s office was MAD! She called my primary and told them it was an emergency and that I had actively bleeding ulcers and was ordered to this appointment by the E.R. and they still said I'd have to make an appt. to see my primary (which had no available appts until August) and then he would write the referral and send it to the referrals dept for processing (which takes anywhere from two to six months!!) By then I could be DEAD! Are you kidding me?? Here's where I truly see that the medical clinics are in it for the MONEY! He wants his money for the referral, he's not concerned about my health and well being. Sorry about the venting....I'm just seriously frustrated about this!
ANYWAY......today is my Neurology appt to find out what the "white spots" on my brain MRI mean for me going forward and learn what the next step is. I don't know if I will come away from this with a diagnosis or not, we shall see. All I know is that Neurologists like to do lumbar punctures (spinals) and she is getting NO WHERE NEAR MY SPINE! Not unless she can knock me out first. Two things I have trouble with in this whole battle (Lumbar pokes and blood gasses) NOT HAPPENING! So wish me luck today. OH, I need to try and remember to tell her about my slurred speech yesterday! A lady down the hall from me heard it and she just lost her grand daughter to Lupus. She said, her grand daughter also had that problem from time to time, It goes along with the brain fog they talk about but it's really caused by the meds. HOPEFULLY that's all. Peace, love and Gentle Hugs!
~Heidi

Oh! I just remembered.... (Brain farts prevail)

First, I have a correction, tomorrows appointment is with my Gastroenterologist and my appointment with my Neurologist is on Thursday.

The reason for tomorrows appointment is that apparently, I have worsening issues with my GI tract. I was in the ER on the 28th of June with severe acid reflux and pain (constant burping) couldn't stop. The Protonix I've taken for several years no longer working. I was told after labs that it appears I have actively bleeding ulcers. They put me on Sucralfate (1gm tablets) that I must chew up 30 minutes prior to meals and before bed, to coat the areas of the ulcers and stop the bleeding. I was also given Butalbital for pain and Omeprazole (20mg tablets) in place of the Pantoprazole or (Protonix) since it no longer seems to work. The appointment tomorrow is a consult for another scope that must be done to check on the status of my condition and see if the "Barrett's Esophagus" has worstened since that is a pre-cancerous condition, it is important to know this. In case I did not mention before, the Imuran that I am taking is known for causing cancer, therefore, we must keep a close eye on these symptoms to be ahead of the game.

Thursday's appointment with the Neurologist is due to the white spots that were discovered in my brain MRI that I had last month. We must now discuss what this means and what tests I must now go through to decipher the symptoms and whether or not they are all related. Meanwhile, back at the bat cave.....I continue to suffer exhausting memory issues. I do believe that I am starting to have issues with anxiety and depression as a result of all of this. I wonder if that is why I am so tired. Anyway, once again....Gentle Hugs~ Heidi

DJ's battle continued.....

So, if you follow my Blog, you already know that my little guy "DJ" who is now seven years old, has had a battle of his own going on for a while now. We just never had any answers as to why he may struggle the way that he does. Well, we have begun the process of getting to the bottom of what is happening to our little guy.

DJ has had a history of rogue fevers with no source and general malaise. He gets sick a lot, ear infections, colds, flu's sore throats, persistent tummy troubles and he vomits at the smell of food. He also wears the typical Malar (butterfly) rash across his face that his Grandma wore and that I sport on a daily basis. My rheumatologist has seen what DJ has gone through symptomatically, and was urgently urging me to get him to a pediatric rheumatologist ASAP. He was recently diagnosed with ADHD because of his extremely short attention span and his inability to retain some information in school. He will begin the second grade with an IEP.

DJ had his initial Dr. appointment on Friday where he had a test come back that he is anemic. His Pediatrician then ordered a battery of other tests be done to check him for autoimmune disease and to find the source of his anemia. Anemia is very common amongst people with Lupus, this is of concern to me. I am hoping it's just due to inadequate iron intake in his diet. My son can put away a steak like nobody's business. He has put on quite a bit of weight over the last year and is 24 lbs. overweight. He should be 50 lbs. and yet he is 74. He appears swollen. He did his labs like a little pro. I think it helps that he has been with me during the lions share of my labs. I took mine first that day. Now it is a waiting game. We await the results of all the blood work to see if there are any answers to his troubles. I will come back to the Blogoshere and let you all know what we find when we find out, and also after my neurology appointment tomorrow.

Gentle Hugs~ Heidi

Catching up....

Legs covered in calamine lotion due to a severe, painful itchy rash I suffered after exposure to the sun.

A flat flaky spot on my hand raised up after exposure to the sun. It hurt like a bruise.

swelling and drooping on the right side of my face upon waking up.

Full facial swelling including my nose. The swelling occurs so often that I have permanent creases next to the right of my nose and above my eyes.

 

I know it's been a while since my last post, but I suppose it's because it's been a bit uneventful for me in comparison to my children. My oldest child and only daughter, graduated from High School on the 19th of June. My middle child and oldest son Aaron is now an eigth grader and my youngest "DJ" is a big second grader now. Yay for all my babies!

As for me, I completed one whole month of Imuran treatment (100mg doses) without much ado (or no side effects.) I continue to suffer with the "Angio Edema" in my face and even began to see more swelling in my left ankle/foot. I have pretty severe back pain now, and what seem to be never ending charlie horses in my right leg. To top that off, my right foot is losing it's battle with whatever has been ailing it. I litterally lie in tears over the pain in my right foot. It seems to be the arch but I had an injury to the tiny bones on the top of my foot years ago, so not sure if that has anything to do with it. I do believe at this point that with everything I go through, my foot is what will be the cause for need of a wheelchair first. As it stands, I can only bear weight on my foot for ten to fifteen minutes at a time without being in excruciating pain. I am starting to notice increased pain in my hips and the muscles of my thighs now, and after a long period of time, my right shoulder seems to be giving in again. I move slowly and carefully to say the least.

Recently, about a week ago, my rheumatologist increased my Imuran to 150 mg. a day. I waited until after a camping trip (which I did not do well on) to start the new dose which was Friday the fifth. Already, I am having nausea and came close to vomiting (which I never do.) I go through this each day, a few hours after taking the med. Today, I could not get up. I slept from 10:30 Saturday evening through 7:45 tonight. I just could not wake up. That's a bit worrisome for me. I will bring that up with my neurologist at tomorrows appointment. That's a bit more than I planned to say about myself, I have some sharing to do about my little guy "DJ" but will give him his own post.
Gentle Hugs~ Heidi