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.
Friday, May 27, 2011
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
Tuesday, May 3, 2011
Where Do I Begin?
It has been a long 19 months for our family, most particularly Zachary and myself... Zach is a medical puzzle and I am his primary caregiver who is with him through ever procedure, appointment, pain and question.
Zach's journey began in July, 2009 when we noticed a faint hyperpigmentation on his forehead that appeared to be spreading. I initially thought the doctor would tell me to slap a little hydrocortisone on it, but I had no clue that our lives were about to change. He was diagnosed with having Plaque Morphea/ Localized Scleroderma through a punch biopsy of the site. Localized Scleroderma is an overproduction of collagen in the body. The pediatric dermatologist put him on 3 different topicals and we were told to move about life as normal other than applying extra sunblock as precaution and not to worry as it cannot become Systemic Sclerosis (full blown Scleroderma).
Two weeks later, we were contacted by the Pediatric Rheumatologist and he and the dermatologist felt it necessary to begin treating Zach internally as well as externally. He put Zach on Methotrexate (MTX) and Hydroxychlorequine (Plaquenil). The MTX was to supress Zach's immune system and slow down the collagen production, the Plaquenil was to control the inflammatory purposes of the plaque type lesions. There was concern about atrophy happening on Zach's face and they felt this would get it under control.
Simultaneously, Zach had been snoring away all summer long with massive adenoids and tonsils and appeared to be exhausted and fatigued all of the time, we were unsure if the discoloration under his eyes was from sleep deprivation (bags) or from his allergies (allergy shiners). He underwent a sleep study in October, 2009 and was diagnosed with Restless Leg Syndrome (RLS) and Periodic Movement Disorder (PLMD) from the sleep study. He showed to be on the apnea scale but low enough that the ENT determined he would not need to have an adenoidtonsillectomy. Phew! We caught a break somewhere. He was put on Zyrtec and Nasonex nightly. They also found that he was Anemic and felt that raising his iron level would get his RLS and PLMD under control. They began him on Ferrous Sulfate and Vitamin C to help absorb the iron.
We were in maintenance mode for about a month before things took a turn for the worst. In January, Zach developed more lesions on his body. The doctors increased his MTX from 4 pills to 6 weekly. This did not seem to help but we knew it could take up to 6 months to get into the system and work. At the end of the month, Zach got very sick with a mycoplasma infection and was spiking high fevers and developed an unexplainable rash for over a week. That infection appeared to do something to him that was irreversible... every time he gets sick with an infection (most specifically, a mycoplasma infection), he develops new symptoms that the doctors cannot explain with his diagnosis.
Zach's skin began to itch all over and he was climbing the walls unable to get comfortable. He also developed arthralgias (joint pains) all over his body and would be fine one moment, running around the house and then would be dragging a leg or holding an arm or hand and screaming in pain the next moment. This went on for days and with no answers from the doctors as to the cause. I pulled Zach out of school and they set up a tutor for him twice a week. Zach was homebound for 6 weeks with me and the tutor and his twin toddler sisters. The doctors offered no pain relief and I began wrapping him in the heating pads and soaking him in warm baths.
He returned to school with constant trips to the nurse (almost daily) and then he got sick again. He was ouot another week. A new symptom developed... GI issues. Zach has now suffered with stomach pain almost daily since April, 2010. He ranges between constipation and loose bowels and is in constant pain in the center of his stomach.
In August,2010, we saw a new dermatologist locally... she immediately biopsied a lesion on his stomach and the biopsy confirmed Morphea there as well. By this time, Zach had lesions everywhere... especially his abdomen, legs, elbows and both sides of his forehead. He was in constant pain in his stomach and his joints. I finally convinced the docs to let us see a GI specialist and to head to NYC for answers from another Rheumy and Derm. The trip was uneventful and we came home with no answers but a new symptom. Zach had an infection (mycoplasma) before/during our trip, and the morning after we got home, he awoke with his arms flailing and hands shaking uncontrolably. He was completely coherent but just as scared and freaked out as I was. The doctors still did not believe there was any connection with the Morphea, the joint pains, the stomach pains, the RLS/PLMD and what looked like a partial seizure. I was ready to rip my hair out.
We finally began hydrotherapy twice per week. It seemed to help with the pain a little bit. After an upper GI fluoroscopy, GI could not find anything but put Zach on a muscle relaxer thinking it may be an organ spasm. The Rheumatologist switched Zach to the injectable form of MTX instead of the pills with me getting to have the privilege of giving him his weekly injections. That went over really well... we had to have a home nurse come for 2 months to work with me and Zach on this. Neurology ordered an MRI and an EEG and both have come up normal... school was complaining that he looked like he was having absence seizures. Apparently, we believe Zach's RLS/PLMD is not under control and this is leading him into some kind of fog during the day from lack of deep sleep. We are heading back to Sleep Medicine tomorrow and will be discussing treatment with Neurology in June as well.
Zach got sick in February and has developed yet another new symptom... chest pains and heart pains. The EKG was normal and the recent chest xrays have shown no signs of Orthostatic Intolerance, Pneumonia or any Dislocation or Subluxation. Again... a mystery as he suffers!
Our recent visit with the Rheumy shed some light... he diagnosed Zach with Hypermobility Syndrome. Apparently, Zach's joints extend too far (-15 degrees) and this is causing the excruciating pain. The Rheumy did not feel that the swelling and stiffness (primarily morning stiffness) was from any form of JRA... even though I showed him pictures of Zach's swollen joints during flare ups and Zach now has joint deformities. The Rheumy put him on Meloxicam (Mobic) for preventative pain measures. We are now keeping our fingers crossed. The PT and the Rheumatologist are not in agreement and I know there is something else we are missing here. He could not give us any anwers for Zach's joints swelling and deforming or for his stiffness.
We are now on our way to NYC again at the end of school to see a different Rheumatology Specialist...Dr. Lehman, who wrote the books about Pediatric Rheumatic Diseases in hopes of answers to complete the puzzle. In the meantime, we are working with PT and OT to try to accomodate Zach so that he will not miss any more school (I believe he has missed close to 70 days this year).
We have our initial 504 meeting next week to set up accomodations for him at school. I will end here. I know this was a bit long but had to start somewhere. Wondering if there is anyone else who is going through all of these symptoms with normal bloodwork.
Zach's journey began in July, 2009 when we noticed a faint hyperpigmentation on his forehead that appeared to be spreading. I initially thought the doctor would tell me to slap a little hydrocortisone on it, but I had no clue that our lives were about to change. He was diagnosed with having Plaque Morphea/ Localized Scleroderma through a punch biopsy of the site. Localized Scleroderma is an overproduction of collagen in the body. The pediatric dermatologist put him on 3 different topicals and we were told to move about life as normal other than applying extra sunblock as precaution and not to worry as it cannot become Systemic Sclerosis (full blown Scleroderma).
Two weeks later, we were contacted by the Pediatric Rheumatologist and he and the dermatologist felt it necessary to begin treating Zach internally as well as externally. He put Zach on Methotrexate (MTX) and Hydroxychlorequine (Plaquenil). The MTX was to supress Zach's immune system and slow down the collagen production, the Plaquenil was to control the inflammatory purposes of the plaque type lesions. There was concern about atrophy happening on Zach's face and they felt this would get it under control.
Simultaneously, Zach had been snoring away all summer long with massive adenoids and tonsils and appeared to be exhausted and fatigued all of the time, we were unsure if the discoloration under his eyes was from sleep deprivation (bags) or from his allergies (allergy shiners). He underwent a sleep study in October, 2009 and was diagnosed with Restless Leg Syndrome (RLS) and Periodic Movement Disorder (PLMD) from the sleep study. He showed to be on the apnea scale but low enough that the ENT determined he would not need to have an adenoidtonsillectomy. Phew! We caught a break somewhere. He was put on Zyrtec and Nasonex nightly. They also found that he was Anemic and felt that raising his iron level would get his RLS and PLMD under control. They began him on Ferrous Sulfate and Vitamin C to help absorb the iron.
We were in maintenance mode for about a month before things took a turn for the worst. In January, Zach developed more lesions on his body. The doctors increased his MTX from 4 pills to 6 weekly. This did not seem to help but we knew it could take up to 6 months to get into the system and work. At the end of the month, Zach got very sick with a mycoplasma infection and was spiking high fevers and developed an unexplainable rash for over a week. That infection appeared to do something to him that was irreversible... every time he gets sick with an infection (most specifically, a mycoplasma infection), he develops new symptoms that the doctors cannot explain with his diagnosis.
Zach's skin began to itch all over and he was climbing the walls unable to get comfortable. He also developed arthralgias (joint pains) all over his body and would be fine one moment, running around the house and then would be dragging a leg or holding an arm or hand and screaming in pain the next moment. This went on for days and with no answers from the doctors as to the cause. I pulled Zach out of school and they set up a tutor for him twice a week. Zach was homebound for 6 weeks with me and the tutor and his twin toddler sisters. The doctors offered no pain relief and I began wrapping him in the heating pads and soaking him in warm baths.
He returned to school with constant trips to the nurse (almost daily) and then he got sick again. He was ouot another week. A new symptom developed... GI issues. Zach has now suffered with stomach pain almost daily since April, 2010. He ranges between constipation and loose bowels and is in constant pain in the center of his stomach.
In August,2010, we saw a new dermatologist locally... she immediately biopsied a lesion on his stomach and the biopsy confirmed Morphea there as well. By this time, Zach had lesions everywhere... especially his abdomen, legs, elbows and both sides of his forehead. He was in constant pain in his stomach and his joints. I finally convinced the docs to let us see a GI specialist and to head to NYC for answers from another Rheumy and Derm. The trip was uneventful and we came home with no answers but a new symptom. Zach had an infection (mycoplasma) before/during our trip, and the morning after we got home, he awoke with his arms flailing and hands shaking uncontrolably. He was completely coherent but just as scared and freaked out as I was. The doctors still did not believe there was any connection with the Morphea, the joint pains, the stomach pains, the RLS/PLMD and what looked like a partial seizure. I was ready to rip my hair out.
We finally began hydrotherapy twice per week. It seemed to help with the pain a little bit. After an upper GI fluoroscopy, GI could not find anything but put Zach on a muscle relaxer thinking it may be an organ spasm. The Rheumatologist switched Zach to the injectable form of MTX instead of the pills with me getting to have the privilege of giving him his weekly injections. That went over really well... we had to have a home nurse come for 2 months to work with me and Zach on this. Neurology ordered an MRI and an EEG and both have come up normal... school was complaining that he looked like he was having absence seizures. Apparently, we believe Zach's RLS/PLMD is not under control and this is leading him into some kind of fog during the day from lack of deep sleep. We are heading back to Sleep Medicine tomorrow and will be discussing treatment with Neurology in June as well.
Zach got sick in February and has developed yet another new symptom... chest pains and heart pains. The EKG was normal and the recent chest xrays have shown no signs of Orthostatic Intolerance, Pneumonia or any Dislocation or Subluxation. Again... a mystery as he suffers!
Our recent visit with the Rheumy shed some light... he diagnosed Zach with Hypermobility Syndrome. Apparently, Zach's joints extend too far (-15 degrees) and this is causing the excruciating pain. The Rheumy did not feel that the swelling and stiffness (primarily morning stiffness) was from any form of JRA... even though I showed him pictures of Zach's swollen joints during flare ups and Zach now has joint deformities. The Rheumy put him on Meloxicam (Mobic) for preventative pain measures. We are now keeping our fingers crossed. The PT and the Rheumatologist are not in agreement and I know there is something else we are missing here. He could not give us any anwers for Zach's joints swelling and deforming or for his stiffness.
We are now on our way to NYC again at the end of school to see a different Rheumatology Specialist...Dr. Lehman, who wrote the books about Pediatric Rheumatic Diseases in hopes of answers to complete the puzzle. In the meantime, we are working with PT and OT to try to accomodate Zach so that he will not miss any more school (I believe he has missed close to 70 days this year).
We have our initial 504 meeting next week to set up accomodations for him at school. I will end here. I know this was a bit long but had to start somewhere. Wondering if there is anyone else who is going through all of these symptoms with normal bloodwork.
Subscribe to:
Posts (Atom)