First, my apologies. So many of you have asked me for updates on Keeg. In all truth, after our visit with immunology, I shied away from blogging. Putting into words all I felt at that time was a bit to much. Now though, I've had some time to process and deal, and now is the time to share.
Keeg visited his immunologist. We had more labs run (ALOT) and are still waiting results. We have been referred (again) to an allergist, hematology, and geneticist. As soon as lab results come back, we will lay out a plan for immunotherapy. Basically, the docs want to start manipulating his immune system to see if they can get it to quit attacking his own body. I don't have a lot of details, but will at a future visit. Hopefully, the worst case scenario is just that.... a scenario and not reality. Worst case being that he is Type 1 Diabetic because his immune system attacked his own pancreas, as it may do other organs.
Keeg is having difficulty swallowing. It feels like something is stuck in his throat. Food does get stuck in his throat. He's been tested for cilia dysfunction previously, but it looks like we'll be referred back to the ENT to test again. It's a horrible battle. He has to count his carbs for his meal, take insulin based on those carbs, then eat the amount of food he counted carbs for. However, when he gets to where he can't swallow, it results in his having taken to much insulin. He has to take his insulin BEFORE he eats, so inability to finish his meal really messes up his sugar level!
Keeg stays tired. Although we had hoped this would clear up in a few weeks due to diabetic management, it appears that his immune system is still wreaking havoc. He is so weak, tired, even lethargic at times. Apologetic....a thousand times a day he apologizes for not being able to help, for needing assistance, or for just being unable to play and have fun.
Today was our endochronology visit. Keeg has had to come off his Lantis pen because it burns him so terribly bad. There is another long acting insulin pen out, but insurance won't cover the pen. So, we came home with actually syringes and vials of insulin today. First dose is in half an hour. I'm nervous, but don't want him to know. I've never stuck a syringe in anyone before! Thank goodness my friend is here and that she is a CNA and former EMT. I don't know how I'd do it if it were just me!
Keeg's A1C has dropped from 12 (yes, it was 12!!!!) to 8.5. So, we celebrated a bit when we heard that one! Yay!
Keeg watched a friend making a huge breakfast of hashbrowns, biscuits and gravy, sausage, eggs, toast, etc. He ran outside, sat on the steps, busted out crying and yelled, "I hate diabetes". Our friend took him to the grocery store and worked to find a way to feed him a breakfast of thing she liked, while keeping it in his carb limit. It's difficult.
We have found that Quinoa is great for him. He gets to eat what appears to be a large quantity of food, it fills him up, and it's super yummy and good for us!
We are still learning. We still goof up often (like those times we get to busy running errands and don't have food to eat). We discovered that cheesecake is a dessert that he can have, which is good because who doesn't like homemade cheesecake? And contrary to a certain Yankee's opinion (you know who you are), cheesecake with Splenda is AWESOMENESS.
We have weeks lined with specialist appointments, testing, and more. I'm holding onto my faith that God will come through and provide me with the computer jobs I need so that we can make some much needed money. He has always provided before, and I'm sure he will now.
As some of you know, we've been fostering dogs that are pulled from gassing shelters. It's been therapeutic for our family..... seeing abused, neglected, rejected and abandoned dogs. Also, dogs that have such a wide variety of health issues. Their unconditional love, in the midst of their pain at human's hands is an inspiration in itself. It has helped our family to be acutely aware of the pain many suffer, and how we can make a difference. It helps to take the attention from our own pains, health issues, financial problems, and more. Saving dogs lives touches you in a way that nothing else can.
Despite all our family battles now, we are together. We love each other. We are a team.
Nothing else really matters.
Showing posts with label cilia immobility. Show all posts
Showing posts with label cilia immobility. Show all posts
Thursday, October 17, 2013
Monday, November 14, 2011
Lung Biopsy and Various Updates
I haven't had much time lately to
update regarding Keeg. So, this will cover several different topics.
First, the labs that were drawn by the
Immunologist showed that Keegan is still suffering from low white
blood cells, low red blood cells, and low platelets. This has been a
continual problem for 10 years, and as of yet there is still no
answer. The good news was that, apart from this, the other labs
showed that his immune system is functioning normal. Do I completely
understand how his labs can be so off, and his immune system working
correctly? No, I don't. But at least the latter part is good news.
Keeg has a referral to a hematologist.
The hematologist will be addressing his chronic abnormal lab counts
and attempting to determine a cause.
The immunologist also feels that Keeg
has Cilia Immobility Disorder. This is linked to Situs Inversus,
which Keeg has. Five years ago I approached several doctors and
requested that Keeg be tested for Cilia immobility. I was
consistently told that he couldn't have this, because he didn't have
recurring lung infections. He did however have chronic sinus
infections. Those sinus infections and his Situs Inversus led me to
think he may have cilia immobility, but I could not find a doctor to
test. Keeg will now be seeing an ENT that will perform a lung biopsy.
With cilia mobility, the actual cell structure of the lungs are
changed.
In recent years, it's been determiend
that the brain has cilia. When this cilia is not functioning
normally, it can cause chronic severe headaches. Keeg has suffered
recurring migraines since he was 4 years old. In addition, Keeg has
suffered severe acid reflux and projectile vomiting, all of which can
be caused by cilia immobility.
I don't have a lot of information yet
regarding what will be done if he does have cilia mobility or what
the prognosis is. I do know that if this is the case, Keeg will most
likely be sterile and unable to father children biologically. This is
something that I've known since he was several weeks old. At the time
of his birth, it was known that sterility was associated with situs
inversus, but no one knew why.
Keeg has also received his results from
his auditory processing testing. Keegan has an auditory processing
disorder in “Tolerance-Fading Memory”. Children with TFM are
unable to process and remember instructions when there is background
noise. In addition, when in a noisy environment, Keegan becomes
stressed and will often try to get away (flight reaction) or become
aggressive (fight reaction). TFM is also expressed in the following
ways. First, it may appear that Keeg often “ignores” people,
especially if engrossed. He hears less well, or less
attentive/productive in ordinarily busy surroundings. He has
difficulty following a series of spoken directions and is unusually
forgetful of information previously memorized such as correct
spelling, household or school routines and responsibilities, despite
frequent reminders.
Keegan also has a “phonemic decoding
deficit”. Also, Keegan scored at age level in “number memory
reversed” and at a 17 year old level on “word memory”. He
scored slightly below average (13 year level) on “number memory
forward”. However, in sentence memroy, he scored at an 8 ½ year
old level. Keep in mind, all these scores are for auditory processing
and have nothing to do with what he sees written.
You'd figure that with the auditory
processing issues and his health problems, Keeg has enough on his
plate. Yet, this isn't the case. We got Keeg's evaluation results
from his neuropsychologist. Keegan received his “official”
diagnosis of Asperger's. I'm still awating the evaluation to come in
the mail. Intellectually, Keeg is quite adept. When it comes to
intellectually knowing what a person should or should not do, or
feel, in a certain social situation, Keegan is aware. However, when
it comes to his perceiving these situations when he is in them, he is
unable to do so. Keegan doesn't understand the majority of what
happens in a day regarding people. He misses things such as facial
expressions, tone of voice, and body language. He takes what is said
literal and doesn't understand what is really meant. He is unaware of
what is considered socially acceptable. There is so much more that I
could list. What's worse is that when I asked for a referral for
someone that specializes in working with children with Asperger's, I
was told that there is no one in our area.
Keegan's OT evals came not to long ago.
They show gross motor delays and sensory integration dysfunction. The
gross motor delays result in his being unable to use both sides of
his body simultaneously. This means he is unable to do things like
ride a bike or jump rope. He also means he has difficulties in
cutting with scissors. Keegan's sensory integration dysfunction is
why he isn't aware that his clothing is twisted, his shoes are
untied, or that there is food on his face. Occupational therapy will
help correct these issues.
Please take the time to follow the
links below to learn more about Keeg's health concerns. He has a lot
to deal with right now. At an age where all kids want to be accepted,
he's learning that he doesn't understand a lot of what goes on in a
day. He's frustrated, uncertain, and at times even depressed by it
all. Please keep him in your prayers. Learn more about the battles he
faces daily at the following links:
Aspergers Syndrome:
Chronic Neutropenia:
Chronic Thrombocytopenia
Chronic Anemia:
Central Auditory Processing Disorder:
Sensory Integration Dysfunction:
Cilia Immobility Disorder:
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