Well, more news on this busy week! I received the results of Zach's sleep study yesterday and they were quite alarming but finally a solid answer somewhere that makes sense and puts a massive piece of the puzzle together. Zach has Severe Obstructive Sleep Apnea... he was found to have stopped breathing completey and partially a total of 209 times the night of the study. They said he is equivalent to getting a solid 2 hours of sleep per night! I can only imagine how exhausted he feels from not getting the proper rest nightly. This explains his trouble focusing at school, possibly his fatigue issues, the bags under his eyes (though there still may be allergy shiners), his ability to nap at practically anytime and his moodiness.
What is the next step? Zach will go to the ENT (ears, nose and throat doc) for an appointment to set up a tonsillectomy, possibly an adenoitonsillectomy (where they remove the adenoids too). The adenoids will be determined by the ENT and the allergist this month. Zach's tonsils are normal size but his uvela (the little drip thingy in the back of the throat) is quite long and his throat is very narrow. When you sleep, your tonsils relax and his are blocking his airway.
We, of course, need approval from Dr. Lehman for this and also need to discuss the anesthetics due to Zach's horrible response during his to the anesthesia during his MRI/MRA. My hope is that they can do this surgery during the summer before school starts so that he can have a fresh beginning for his school year. We also run into seeing Dr. Lehman at the end of the summer and need to have him healed before that trip to NYC.
Zach received his new knee splints yesterday and his orthodics for his feet. The splints will take some getting used to as they are quite tight until he breaks them in. We are observing him closely as he has some discoloration around his knees last night, one more than the other. We are not sure if it was some of the dye from the inside of the splint from the black "shoe pads" around his knee cap or if they are truly cutting off his circulation. I will have his PT check at his water therapy appointment today.
Zach felt a little funny about his splints, but when I explained that these are his Magic Legs to make him strong like a super hero, he perked up and began strutting his stuff. He felt very proud of his new Magic Legs. I just know they are going to be a bit uncomfortable during the hot days of summer for him. His orthodics are easy as he was even able to switch them into another pair of sneakers himself. I have yet to figure out how to add pictures to my blog but will have a pic of Zach with his new Magic Legs on my FB page.
Thursday, June 30, 2011
Tuesday, June 28, 2011
Zach's Medical Trip to NYC
We knew before we headed to NYC that we would not be coming with answers immediately the day of the appointment because we are not dealing with a flu or cold virus or an allergic rash... we left with some work to do and possibilities and peace of mind that there will be answers in the future.
We traveled to see Dr. Lehman, author of "It's Not Just Growing Pains" and "Guide to Pediatric Rheumatic Diseases" who we knew would hold answers for Zach. As you all know, it has been a long and trying 2 years for us, especially Zach.
After examination and thorough history and lab work coverage, Dr. Lehman explained that he has a few theories. He agreed that Zach's symptoms are not normal and that there is something going on that is causing his pain, swelling stiffness and unusual lab work... the docs have shared with us that his bloodwork is normal, Dr. Lehman picked up on things flagged that are NOT NORMAL and do mean something... somethings I have questioned specialists about here for a very long time and they just gaffed me and said "Oh, maybe he had a little virus we were unaware of at the time"... um, yeah- he had a virus each time he had bloodwork for the lat 18 months. Hmmmm! He also looked quite perplexed about why they didn't pull the Dapsone when Zachary had a hemmoraging epsiode this winter and the bloodwork showed his clotting was off. He questioned why they didn't pull the Dapsone when he complained of chest and heart pain for the last 5 months. He questioned why they didn't pull his meds when his stomach became so painful. He questioned why they didn't pull his meds when he began having what appeared to partial seizures and now hand tremors and muscle twitching.
First Theory- Zach's meds cocktail could be causing if not contributing to the symptoms and all of the various specialists are treating side effects with more meds and not properly monitoring his meds here. We have been instructed to wean him off the meds and see if he shows any improvement over the summer as the meds disappear out of his system. If he improves, it was the meds that have been making him so sick and have caused his body so much pain and his stomach issues. Wouldn't that be a nice simple fix? Zach is on 2 major meds that are not pleasant... one is Methotrexate injectable (chemo) to suppress the immune system to stop the autoimmune disorder from spreading... we are weaning him with the frequency over the summer. Second one is Dapsone, which affects the red blood cells. Zach's got broken red blood cells floating around in his body now. I was unaware of the effects of the Dapsone and all of the dangers that these 2 combined drugs can do together but it is scary! The Dapsone was stopped immediately as of this morning's dose. This process is referred to as "Peeling the Onion"
Does it mean that Zach still has localized scleroderma? YES! Absolutely, but he is looking like it is under good control and we may only need to use one or two of the meds at a much lower dosage less frequently to maintain or completely be off meds unless it flares up again.
Second Theory- Once Zach is weaned off of the meds, we can have a clearer picture as to what may be underlying there. Is there illness underneath the side effects of the meds? Are the meds masking the problem? If as we wean Zach off of the meds, he does not improve and still has symptoms (or whatever symptoms are left), then the doctor can figure out the puzzle. He needs a clean slate to start from scratch because of all of the meds and specialists with too many chefs in the kitchen.
So, we are due back to visit with Dr. Lehman at the end of August before school begins to check in and have him take a look at unmedicated Zachary and his symptoms. If Zach's symptoms get worse over the summer, we will head down to see him sooner. In the meantime, Dr. Lehman has ordered a list of bloodwork to check things and follow up on other things the specialists here never considered or did, he has requested that Zach definitely get an echocardiogram sooner than later and will be reviewing all of Zach's medical procedure results with his own trained eye over the summer before our next visit with him.
In the meantime, he wants Zach to continue on his pain medications for pain control so he does not have to suffer while we look for anwers. I know it is going to be a bit... but after the amount of info this doctor shared with us and his approach, I know we are on the right path to solving Zach's medical puzzle. My anxiety is down further than it has been in a long time knowing that we are in the best hands possible. He made it very clear to Zach that he will get to the bottom of what is wrong and he will fix it!
I knew we made the right decision when Dr. Lehman said... "How is your relationship with your specialists right now because I am about to blow up their reccomendations and step on some toes!"
We traveled to see Dr. Lehman, author of "It's Not Just Growing Pains" and "Guide to Pediatric Rheumatic Diseases" who we knew would hold answers for Zach. As you all know, it has been a long and trying 2 years for us, especially Zach.
After examination and thorough history and lab work coverage, Dr. Lehman explained that he has a few theories. He agreed that Zach's symptoms are not normal and that there is something going on that is causing his pain, swelling stiffness and unusual lab work... the docs have shared with us that his bloodwork is normal, Dr. Lehman picked up on things flagged that are NOT NORMAL and do mean something... somethings I have questioned specialists about here for a very long time and they just gaffed me and said "Oh, maybe he had a little virus we were unaware of at the time"... um, yeah- he had a virus each time he had bloodwork for the lat 18 months. Hmmmm! He also looked quite perplexed about why they didn't pull the Dapsone when Zachary had a hemmoraging epsiode this winter and the bloodwork showed his clotting was off. He questioned why they didn't pull the Dapsone when he complained of chest and heart pain for the last 5 months. He questioned why they didn't pull his meds when his stomach became so painful. He questioned why they didn't pull his meds when he began having what appeared to partial seizures and now hand tremors and muscle twitching.
First Theory- Zach's meds cocktail could be causing if not contributing to the symptoms and all of the various specialists are treating side effects with more meds and not properly monitoring his meds here. We have been instructed to wean him off the meds and see if he shows any improvement over the summer as the meds disappear out of his system. If he improves, it was the meds that have been making him so sick and have caused his body so much pain and his stomach issues. Wouldn't that be a nice simple fix? Zach is on 2 major meds that are not pleasant... one is Methotrexate injectable (chemo) to suppress the immune system to stop the autoimmune disorder from spreading... we are weaning him with the frequency over the summer. Second one is Dapsone, which affects the red blood cells. Zach's got broken red blood cells floating around in his body now. I was unaware of the effects of the Dapsone and all of the dangers that these 2 combined drugs can do together but it is scary! The Dapsone was stopped immediately as of this morning's dose. This process is referred to as "Peeling the Onion"
Does it mean that Zach still has localized scleroderma? YES! Absolutely, but he is looking like it is under good control and we may only need to use one or two of the meds at a much lower dosage less frequently to maintain or completely be off meds unless it flares up again.
Second Theory- Once Zach is weaned off of the meds, we can have a clearer picture as to what may be underlying there. Is there illness underneath the side effects of the meds? Are the meds masking the problem? If as we wean Zach off of the meds, he does not improve and still has symptoms (or whatever symptoms are left), then the doctor can figure out the puzzle. He needs a clean slate to start from scratch because of all of the meds and specialists with too many chefs in the kitchen.
So, we are due back to visit with Dr. Lehman at the end of August before school begins to check in and have him take a look at unmedicated Zachary and his symptoms. If Zach's symptoms get worse over the summer, we will head down to see him sooner. In the meantime, Dr. Lehman has ordered a list of bloodwork to check things and follow up on other things the specialists here never considered or did, he has requested that Zach definitely get an echocardiogram sooner than later and will be reviewing all of Zach's medical procedure results with his own trained eye over the summer before our next visit with him.
In the meantime, he wants Zach to continue on his pain medications for pain control so he does not have to suffer while we look for anwers. I know it is going to be a bit... but after the amount of info this doctor shared with us and his approach, I know we are on the right path to solving Zach's medical puzzle. My anxiety is down further than it has been in a long time knowing that we are in the best hands possible. He made it very clear to Zach that he will get to the bottom of what is wrong and he will fix it!
I knew we made the right decision when Dr. Lehman said... "How is your relationship with your specialists right now because I am about to blow up their reccomendations and step on some toes!"
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