Here we are a month later, back in NYC and I cannot sleep. I haven't slept well in days, racking my brain trying to put Zachs puzzle together in my head to no prevail. To update everyone, we had a summer full of answers... still some more to follow I hope.
Obstructive Sleep Apnea and Elevated INR/Clotting Issues and Neurology
In July, we found out that Zach has moderate to severe Obstructive Sleep Apnea (OSA) and he has been put on a CPAP machine to help him sleep. We were unable to have his tonsils and adenoids out because his blood is not clotting enough and he could bleed out during or after surgery... the surgeon wanted us to get through diagnosis phase and then see hematology for a full work up to determine his clotting issues. The CPAP has made a huge difference in Zachs behavior and focus and should be helpful to him during the school day as well. He is still fatigued but was not falling asleep everyday in the afternoon and on every car ride. However, the CPAP mask has caused Zachs morphea lesions on his head to become active again and we are trying to figure out how to prevent this. We then visited hematology and they determined that Zach's Factor 7 is bottom line on normal with no room to play around but is safe to have surgery as long as they prep fresh frozen plasma for a possible transfusion in case it is needed if his Factor 7 becomes deficient. Normal range is 51-171 and Zach is borderline at 50. The hematologist felt that this is what caused Zach's INR to elevate. We have now scheduled surgery for December 8th, Brian's birthday, and pray that all will be successful and transfusion free.
Also, 3rd night on the CPAP, Zach experienced what appeared to be the first of 6 seizures... all overnight. There could have been more and this could have happened before, we just may have been unaware. We went back to neurology for another consultation and they scheduled Zach for another EEG... I have to attempt to wake Zach during one of these episodes. If he wakes, we are dealing with a different kind of sleep disorder, if he doesn't wake, we are dealing with seizures.
I mentioned this to the Sleep Medicine Doctors when I went to his Titration Sleep Study results the next day and they noted that Zach's OSA is 100% under control with the CPAP, however, his arousals during sleep have almost tripled up to 289 arousals in a 10 hour sleep period. The number of arousals was quite alarming without the breathing issues. They have now contacted a different Neurologist who specializes in Sleep Disorders and Nocturnal Epilepsy. We are awaiting the call from this specialist for further instructions. Zach is still not getting the quality sleep he needs, even though the CPAP is doing its job. I will update when we find out what the 2nd Neurologist determines the route we will take.
Exercise Induced & Nocturnal Asthma/Allergist
In mid-July, we also visited the Allergist/Immunologist where we found out that Zachs chest pain was due to untreated Asthma-exercise -induced/nocturnal asthma to be exact! He is now on 2 inhalers, one he does twice per day and the other we use for emergency when the chest pain hits. It appeared to be helping and I was confident this would help at school that I will receieve less phone calls to pick him up since he will have his inhaler there for his chest pain...until recent events this week. He began severe chest pain on Monday that would not subside with inhalers and nebulizer treatments. The pediatrician was convinced at that time that being his lungs were clear, we were dealing with joint inflammation issues in his chest. No way to comfort him. I now question the Asthma diagnosis with the recent events. Prior to the Allergist, we headed into the Cardiologist the first week in July for an EKG and an Echocardiogram. We received a beautiful picture of Zach's perfect heart and he was proud to share with everyone. To have his heart ruled out as nothing to do with his chest pain made me very happy.
GI
We visited with GI this week as well and they put Zach on Prilosec, not for GERD, but for preventitive measures... to protect his stomach from ulcers from his pain meds. They also incerased his Miralax again and could not give us any other answers about his constant stomach pain. Though, GI and the pediatrician agrees that the chest and stomach pain go hand in hand.
Rheumatology/ Arthritis and Arthralgias
In June, we visited Dr. Lehman, a renowned Rheumatologist, in NYC. Dr. Lehman weaned Zach off of all of his meds over the summer to "peel the onion" and see what was side effects vs. symptoms to properly diagnose Zach. We returned at the end of August to find out that he believed Zach has some form of Arthritis but wanted to keep Zach off of treatment until he got through surgery and he encouraged us to head in to hematology to get to the bottom of Zachs elevated INR and get Zachs surgery scheduled ASAP.
Here we are, a month later, and I am sitting in a hotel room in NYC watching my son peacefully sleeping while I listen to the rhythm of his breathing from his CPAP. I watch my twin daughters passed out next to him and I pray to God that Dr. Lehman can help our son tomorrow. I know treatment is questionable due to surgery scheduled but there are options and there is always the possibility of postponing his surgery since we seem to have success with his CPAP. But treatment will take a while to kick in... I pray that he can provide immediate relief to his pain. His mobic isn't even touching this.
His pain began last Sunday early evening and has barely let up... we have gone through periods of him being able to hop and skip and having low pain levels of 3/4 and look like he is fine to hopping on one leg, limping and crying in pain. The pain began in the right foot... by Monday, it spread up to the middle of the right knee and down to the toes and into his chest (right side and then base). He woke me up in the middle of the night mid-week with a throbbing pain in his arm on the left side and tonight at dinner, he began to experience pain in his left leg and Brian had to carry him to the van and then up to our hotel room. He has shared with me that he always hurts and wants it to stop... when I asked him how often the pain stops, he shared that it never goes away. So now, we have the left and the right legs bothering him. His hands are like putty and he can barely grasp my hand. The few days of school he attended this week, he made it through 2 hours max!
It is hard to explain Zach to the outside world... school, friends, extended family... he looks like a normal kid running around and smiling. What people don't see is his pain episodes, his dark moments that we see. Zach is very good at concealing his pain to the outside world due to his embarassment of it! I have learned so much from this journey with Zach. I will never judge someone again, I will never question someone who hurts or shares they are sick but looks like you and me- the overweight lady who may be blown up due to a medical condition or from medical steroid shots for pain, the co-worker who may call out sick and always seem fatigued, someone who is home on disability but looks fine enough to be out there in the workforce. So many people say..."But he doesn't look sick"- this is the worst thing to say to a sick person. Ask yourself, What does a sick person look like? Is it someone who is in a wheelchair? Missing a limb? Someone with a noticeable deformity? Someone who has to use medical devices? The next time you ask yourself that, take a look at Zach's picture... that is what a sick person looks like, a sick person with an illness that is invisible to you and me... what can make it tangible to us?
Sunday, October 2, 2011
Thursday, June 30, 2011
Sleep Study Results and Zach's Magic Legs
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.
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.
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!"
Friday, May 27, 2011
Tummy Turmoil
Zach has been out of school for 4 days now with horrible stomach pain. After another abdominal x-ray, it was determined that there was no improvement in his bowels and that he is still backed up and there is some blockage. Zach's very upset that we have to had to alter his diet this week and he is not allowed to have any starches or dairy. I promised to take him for a trip to Wegman's to pick out a special diet together for the week.
The docs have increased his miralax to twice a day and have doubled the dosage for each time as well. I can only hope that our efforts of extra fiber, extra h2o, mineral oil, epsom salt, miralax begins to work soon! He is barely eating for me and has cramping the minute he takes a few bites. He then complains of hunger... we try to eat again and the cramping is back. I cannot imagine how thin he is going to look by the end of this. :(
The hot tub is offering some relief to his stomach and back pain but he is not even feeling well enough to get in over the last few days.
The docs have increased his miralax to twice a day and have doubled the dosage for each time as well. I can only hope that our efforts of extra fiber, extra h2o, mineral oil, epsom salt, miralax begins to work soon! He is barely eating for me and has cramping the minute he takes a few bites. He then complains of hunger... we try to eat again and the cramping is back. I cannot imagine how thin he is going to look by the end of this. :(
The hot tub is offering some relief to his stomach and back pain but he is not even feeling well enough to get in over the last few days.
Monday, May 23, 2011
Hot Tubbing!
The Hot Tub Is Here!
Zachary's hot tub was installed on Thursday and he couldn't be happier. He is beaming from ear to ear, not only because his dream came true, sincere thanks to the Dream Factory of Rochester, but also because it is a wonderful thing to look forward to. He used to be difficult to get out of bed because of how stiff and tender he is in the morning... now he is up early and waking me up with his swimsuit on and ready to soak in his tub. His joints are feeling pretty good. They are not 100% and there will never be a fix all for him that I know of, but it doesn't get better than this... between his pain killers and his hot tub, he is in a good place right now (plus the warmer weather which appears to be kinder to his little body and joints).
It was a very emotional week as we watched the electricians come dig up the yard (and do an amazing job of putting it back together) and then watch all of these men pull up in trucks and begin to work... taking the tub off of the truck, rolling it into the back yard, placing it and moving it around on the patio, the electricians digging up the patio and hardwiring the tub, the poor electricians having to come back the next day and do some more digging to ground the tub with the brand new standards, the inspector giving his seal of approval... and I watch all of this happening for my very special little boy. It was truly a dream come true. It was hard to keep my tears from flowing all day.
He was not able to go in it the first night... he was having a very bad day with his stomach and the tub was not warm enough to get into by bedtime. But, come the next morning, he was up bright and early and ready to soak with the biggest smile I have seen on his face in a very long time. Wild horses couldn't have kept him away. Zach has soaked at least twice a day now and has gotten to enjoy having a friend over to check it out with him as well. We went and bought some little pool/spa toys for him to play with while he soaks and to help him keep moving around in the tub.
We begin our journey to end water therapy sessions now and will be done by the end of June. Zach's PT will be teaching me how to stretch him and work him in the water so that he can do all of these things right in the back yard in his hot tub. This will save me 2 trips per week with the twins sitting poolside... it will be a relief for all.
We have been keeping the temp between 94 and 95 degrees (which is the same as his therapy pool) so that he can stay in as long as he does for his water therapy sessions. The girls have much enjoyed floating around in their swimmies with their brother. Mom and Dad got Zach's permission to enjoy a soak after his bedtime and I must admit it is rather relaxing and I have been sleeping better than ever (except of course when the kids aren't at bedside at 3 a.m.).
I will upload pictures this week so all can see (or visit my Facebook page in the meantime). He looks so tiny in this thing!
UPDATE ON ZACH SPLINTING: The OT splinting specialist determined that we will start Zach slow without shoulder support but began him with his cuved 8 ring splints on his pointer finger for now. They are tinier than a DS game (and he has managed to lose one already).
He was fitted for elastic knee braces and they have been ordered and was also fitted for orthodic inserts in his shoes to help with his gait. We are awaiting their arrival as they had to be special ordered and custom made.
Zachary's hot tub was installed on Thursday and he couldn't be happier. He is beaming from ear to ear, not only because his dream came true, sincere thanks to the Dream Factory of Rochester, but also because it is a wonderful thing to look forward to. He used to be difficult to get out of bed because of how stiff and tender he is in the morning... now he is up early and waking me up with his swimsuit on and ready to soak in his tub. His joints are feeling pretty good. They are not 100% and there will never be a fix all for him that I know of, but it doesn't get better than this... between his pain killers and his hot tub, he is in a good place right now (plus the warmer weather which appears to be kinder to his little body and joints).
It was a very emotional week as we watched the electricians come dig up the yard (and do an amazing job of putting it back together) and then watch all of these men pull up in trucks and begin to work... taking the tub off of the truck, rolling it into the back yard, placing it and moving it around on the patio, the electricians digging up the patio and hardwiring the tub, the poor electricians having to come back the next day and do some more digging to ground the tub with the brand new standards, the inspector giving his seal of approval... and I watch all of this happening for my very special little boy. It was truly a dream come true. It was hard to keep my tears from flowing all day.
He was not able to go in it the first night... he was having a very bad day with his stomach and the tub was not warm enough to get into by bedtime. But, come the next morning, he was up bright and early and ready to soak with the biggest smile I have seen on his face in a very long time. Wild horses couldn't have kept him away. Zach has soaked at least twice a day now and has gotten to enjoy having a friend over to check it out with him as well. We went and bought some little pool/spa toys for him to play with while he soaks and to help him keep moving around in the tub.
We begin our journey to end water therapy sessions now and will be done by the end of June. Zach's PT will be teaching me how to stretch him and work him in the water so that he can do all of these things right in the back yard in his hot tub. This will save me 2 trips per week with the twins sitting poolside... it will be a relief for all.
We have been keeping the temp between 94 and 95 degrees (which is the same as his therapy pool) so that he can stay in as long as he does for his water therapy sessions. The girls have much enjoyed floating around in their swimmies with their brother. Mom and Dad got Zach's permission to enjoy a soak after his bedtime and I must admit it is rather relaxing and I have been sleeping better than ever (except of course when the kids aren't at bedside at 3 a.m.).
I will upload pictures this week so all can see (or visit my Facebook page in the meantime). He looks so tiny in this thing!
UPDATE ON ZACH SPLINTING: The OT splinting specialist determined that we will start Zach slow without shoulder support but began him with his cuved 8 ring splints on his pointer finger for now. They are tinier than a DS game (and he has managed to lose one already).
He was fitted for elastic knee braces and they have been ordered and was also fitted for orthodic inserts in his shoes to help with his gait. We are awaiting their arrival as they had to be special ordered and custom made.
Wednesday, May 4, 2011
Sleep Medicine Appointment and Bracing/Splinting
I felt blessed in many ways today... blessed that I was able to get Zach in so quickly, blessed that I had a friend offer to take the girls to play with her daughter so they didn't have to sit through a specialist consultation and so that I didn't have to manage three children while trying to discuss Zach's symptoms.
Today, after much discussion about Zach's "Zoning" episodes, and further investigating into his tonsils and a quick glance at the heavy bags under his eyes, the pulmonology NP determined that Zach is due for another sleep study and soon. His symptoms could be that of his RLS/PLMD not under control, apnea (which he was low on the scale before).
Zach's sleep study is on Sunday, June 12th and then we will meet for his results on June 30th to discuss the treatment plan.
On a not-so-blessed note, I received a phone call today from the OT specialist who did the clinical OT evaluation on Zach last week. She consulted with the splinting specialist and they have agreed that Zach will need to be fitted for "Curved 8 Oval Finger Ring splints" on his pointer and middle finger. The pointer finger will need one on top and one on the bottom and the middle finger will have one on top for now. These will help Zach's fingers to stop subluxating several times a day (subluxation is a partial dislocation where it does not come out of the joint completely and then pops back in). They will also be fitting Zach for a shoulder support brace for his right arm to begin with as they feel that his shoulder is subluxating often too.They may look into bracing his left shoulder later, but since he is right side dominant and he is experiencing pain there, we will begin with the right side.
Zach's muscles are becoming weak and fatigued due to the laxity of his joints and are working overtime to make up for the instability of his joints. His muscles are so fatigued that they are now twitching from the added stress on them. His thigh muscles (hamstrings) and muscles around his hips have become so tight that it is causing pressure around his sciatic nerve (this is due to weak muscles being over used to support the joints and they are tensed up and twitching). He was able to touch his toes in December and now he is not able to due to the tightening. This hot tub could not be coming for him at a better time.
The splint specialist will determine whether or not Zach's right wrist will need to be splinted at the same time (or at least for writing). In the meantime, we are still trying to determine what constitutes enough physical activity to wrap Zach's knees, elbows and ankles with ace bandaging for added support. They are discussing possible braces/supports on his legs in the future.
I will keep everyone posted as we maneuver through this next step.
With Hope in My Heart...
Danielle
Today, after much discussion about Zach's "Zoning" episodes, and further investigating into his tonsils and a quick glance at the heavy bags under his eyes, the pulmonology NP determined that Zach is due for another sleep study and soon. His symptoms could be that of his RLS/PLMD not under control, apnea (which he was low on the scale before).
Zach's sleep study is on Sunday, June 12th and then we will meet for his results on June 30th to discuss the treatment plan.
On a not-so-blessed note, I received a phone call today from the OT specialist who did the clinical OT evaluation on Zach last week. She consulted with the splinting specialist and they have agreed that Zach will need to be fitted for "Curved 8 Oval Finger Ring splints" on his pointer and middle finger. The pointer finger will need one on top and one on the bottom and the middle finger will have one on top for now. These will help Zach's fingers to stop subluxating several times a day (subluxation is a partial dislocation where it does not come out of the joint completely and then pops back in). They will also be fitting Zach for a shoulder support brace for his right arm to begin with as they feel that his shoulder is subluxating often too.They may look into bracing his left shoulder later, but since he is right side dominant and he is experiencing pain there, we will begin with the right side.
Zach's muscles are becoming weak and fatigued due to the laxity of his joints and are working overtime to make up for the instability of his joints. His muscles are so fatigued that they are now twitching from the added stress on them. His thigh muscles (hamstrings) and muscles around his hips have become so tight that it is causing pressure around his sciatic nerve (this is due to weak muscles being over used to support the joints and they are tensed up and twitching). He was able to touch his toes in December and now he is not able to due to the tightening. This hot tub could not be coming for him at a better time.
The splint specialist will determine whether or not Zach's right wrist will need to be splinted at the same time (or at least for writing). In the meantime, we are still trying to determine what constitutes enough physical activity to wrap Zach's knees, elbows and ankles with ace bandaging for added support. They are discussing possible braces/supports on his legs in the future.
I will keep everyone posted as we maneuver through this next step.
With Hope in My Heart...
Danielle
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