While we were on vacation, taking a break from life, JJ's rheum emailed me and told me the results of his ultrasounds and x-rays on his joints (elbows, wrists, hands, hips, knees, ankles, feet and toes). She said:
"The ultrasounds showed arthritis in the left wrist and left elbow (as we suspected). The other films were okay, including his neck."
So, based upon this report and the ultrasound he had done this past May on his knees, the results show there is arthritis in the following joints:
- left elbow (fluid sitting on the joint)
- left wrist
- left knee (fluid sitting on the joint)
Praising and thanking God there is no arthritis in his hips or neck!! This is HUGE!
He has been on Meloxicam for the past week now and it is much gentler on his tummy. While it is a stronger medicine, he loves that he only has to take it once a day! So glad to have found something that alleviates the pain in his joints and leaves him with a happy tummy.
Up next: uveitis check-up this Friday at MERSI for both Mia and JJ.
Tuesday, August 16, 2011
Wednesday, August 10, 2011
Waiting
Yesterday was definitely one of our longest appointments at Tufts since we started going there four years ago this month. Jokingly, I told my husband, "We should buy an apartment in Boston to save on gas and parking!"
Hm. Something to consider! ;o)
We got there at 9:30 a.m. for JJ's ultrasounds and x-rays. JJ did a remarkable job! He had to lay completely still for 1.5 hours as they did ultrasounds of his hips, elbows and wrists. How many four-year-old boys do you know who can lay completely still and not move for that long? It took some encouragement from me, but he did it. And, was very happy when it was over. The ultrasound not only shows if there is fluid on the joints, but also shows if there is increased blood flow to the joints, which indicates there is inflammation in that particular joint. An ultrasound was already done on his knees back in April, showing there is fluid on the left. The hips, elbows and wrist were checked yesterday because they are still bothering him, even after he has been on Naproxen for the last several months.
Then we we headed over to have x-rays done of his neck, wrists, hands, hips, knees, ankles, feet and toes. This is what the rheumatologist did when Mia was first diagnosed four years ago and what should have been done for JJ this past April when he was officially diagnosed with JA.
Sometimes, going with your gut and switching doctors really does prove to be the best decision after all.
It was noon when we were finally taking a break for lunch.
Mommy Tip: If you ever have to spend a day at Tufts with two young children, do not, I repeat, DO NO venture into Chinatown to take them to McDonalds. No matter how much they beg.
It is a bad idea.
And that is all I have to say on the matter. :)
After lunch, we headed up to the sixth floor to the Otolaryngology Department for a post-tonsilectomy and - adenoidectomy appointment for Mia and an appointment for JJ for the ENT to check his tonsils. (Keep in mind it is now 2:00 p.m. and both kids have just about had it with their day trip to Tufts!) Mia went first. Technically, this was our second post-surgery visit for Mia. We had to take her back six days after surgery because she started having horrible pain on the tip of her tongue that was keeping everyone up at night. This unusual pain wasn't from the instruments they used to depress the tongue during surgery. That pain would have occurred a day or two after surgery, not six days after and not on the tip of her tongue.
The ENT spoke to the rheumatologist and they both agreed that Mia's immune system was acting up. The pain on her tongue was because she had coxsackie virus (hand, foot and mouth disease). She was hurting more from having coxsackie than from the tonsillectomy! When he looked in her mouth yesterday, he said the surgery site looked great, but she still had some ulcers in the back of her throat from the virus. And, there is nothing we can do for her. We have to ride it out.
We brought JJ in to see the ENT because he has been having eating issues and we wanted to make sure his tonsils were not causing the problem. He will only eat soft foods (pastina, yogurt, applesauce, oatmeal) and hard foods (carrots, apples, chicken nuggets, fries) take him forever to eat and sometime he chokes. He went through a series of questions with us concerning JJ. He asked us: "Does he clear his throat often?" "Yes." "Does he snore?" "No." "Does he get ear infections and chronic colds?" "Yes, in the winter months." JJ gets more ear infections than any of my other kids. "Is he gaining weight?" "No." We told him his rheum noticed that last week at his appointment and is testing him next month for Celiac Disease.
After asking us a slew of questions, the ENT checked out JJ's tonsils and said they are large, but not as large as Mia's were (tonsils peak between ages 5-8). He recommended that JJ should see a Feeding Specialist at Tufts (I am thinking in my head, "Yes, let's definitely start looking for an apartment in the area!"). They would be able to tell if the tonsils were the problem or not. If they are, then they will be coming out. If not, then there is no reason to mess with them.
In other news: JJ started taking Meloxicam (Mobic) this past Monday and really likes taking his medicine only once a day instead of twice.
Up next for JJ: appointment with Feeding Specialist and then getting checked for Celiac Disease next month. We should have the results of the ultrasounds and x-rays back by this Friday/next Monday.
Up next for Mia: 504 Plan meeting for kindergarten with Head Teacher.
Up next for both kids: Uveitis check-ups at MERSI next Friday.
Up next for Mommy: a nap.
Hm. Something to consider! ;o)
We got there at 9:30 a.m. for JJ's ultrasounds and x-rays. JJ did a remarkable job! He had to lay completely still for 1.5 hours as they did ultrasounds of his hips, elbows and wrists. How many four-year-old boys do you know who can lay completely still and not move for that long? It took some encouragement from me, but he did it. And, was very happy when it was over. The ultrasound not only shows if there is fluid on the joints, but also shows if there is increased blood flow to the joints, which indicates there is inflammation in that particular joint. An ultrasound was already done on his knees back in April, showing there is fluid on the left. The hips, elbows and wrist were checked yesterday because they are still bothering him, even after he has been on Naproxen for the last several months.
Then we we headed over to have x-rays done of his neck, wrists, hands, hips, knees, ankles, feet and toes. This is what the rheumatologist did when Mia was first diagnosed four years ago and what should have been done for JJ this past April when he was officially diagnosed with JA.
Sometimes, going with your gut and switching doctors really does prove to be the best decision after all.
It was noon when we were finally taking a break for lunch.
Mommy Tip: If you ever have to spend a day at Tufts with two young children, do not, I repeat, DO NO venture into Chinatown to take them to McDonalds. No matter how much they beg.
It is a bad idea.
And that is all I have to say on the matter. :)
After lunch, we headed up to the sixth floor to the Otolaryngology Department for a post-tonsilectomy and - adenoidectomy appointment for Mia and an appointment for JJ for the ENT to check his tonsils. (Keep in mind it is now 2:00 p.m. and both kids have just about had it with their day trip to Tufts!) Mia went first. Technically, this was our second post-surgery visit for Mia. We had to take her back six days after surgery because she started having horrible pain on the tip of her tongue that was keeping everyone up at night. This unusual pain wasn't from the instruments they used to depress the tongue during surgery. That pain would have occurred a day or two after surgery, not six days after and not on the tip of her tongue.
The ENT spoke to the rheumatologist and they both agreed that Mia's immune system was acting up. The pain on her tongue was because she had coxsackie virus (hand, foot and mouth disease). She was hurting more from having coxsackie than from the tonsillectomy! When he looked in her mouth yesterday, he said the surgery site looked great, but she still had some ulcers in the back of her throat from the virus. And, there is nothing we can do for her. We have to ride it out.
We brought JJ in to see the ENT because he has been having eating issues and we wanted to make sure his tonsils were not causing the problem. He will only eat soft foods (pastina, yogurt, applesauce, oatmeal) and hard foods (carrots, apples, chicken nuggets, fries) take him forever to eat and sometime he chokes. He went through a series of questions with us concerning JJ. He asked us: "Does he clear his throat often?" "Yes." "Does he snore?" "No." "Does he get ear infections and chronic colds?" "Yes, in the winter months." JJ gets more ear infections than any of my other kids. "Is he gaining weight?" "No." We told him his rheum noticed that last week at his appointment and is testing him next month for Celiac Disease.
After asking us a slew of questions, the ENT checked out JJ's tonsils and said they are large, but not as large as Mia's were (tonsils peak between ages 5-8). He recommended that JJ should see a Feeding Specialist at Tufts (I am thinking in my head, "Yes, let's definitely start looking for an apartment in the area!"). They would be able to tell if the tonsils were the problem or not. If they are, then they will be coming out. If not, then there is no reason to mess with them.
In other news: JJ started taking Meloxicam (Mobic) this past Monday and really likes taking his medicine only once a day instead of twice.
Up next for JJ: appointment with Feeding Specialist and then getting checked for Celiac Disease next month. We should have the results of the ultrasounds and x-rays back by this Friday/next Monday.
Up next for Mia: 504 Plan meeting for kindergarten with Head Teacher.
Up next for both kids: Uveitis check-ups at MERSI next Friday.
Up next for Mommy: a nap.
Tuesday, August 09, 2011
Tonight's Prayer
This is what I do on the eve of our appointments in Boston.: I stay up. I check on them. I pray for them. I check on them again. And, I don't sleep much.
But tonight, I decided to do something different. Instead of going to bed with dread hanging over me and waking up with it in the morning as I wonder what new news tomorrow's appointments will bring, I decided to prepare myself mentally, emotionally, physically, SPIRITUALLY now for our son, Jonathan, and for his appointments tomorrow in Boston.
Tonight's prayer...
Sweetest boy with such a tender soul, I pray for you tonight. I just tucked you in one last time, after you just fell out of bed, and I pray for peace to flood you through and through, touching every swollen, achy joint even as you sleep. Tomorrow will be a good day, as we face it together as a family. We will hear good news and good reports. And, despite what we are told, we know what the final outcome will be - we win. Period. I thank God now for the good news that will come. It might not happen immediately, but it will happen. We believe this for you. We stand strong for you. We pray constantly for you. And, we will not stop fighting for you....or your sister.
In the meantime, we love you. Dearly.
“So now, take your positions and watch this great thing that the Lord is about to do in your sight.
1 Samuel 12:16
Friday, August 05, 2011
"Hero Foods"
I have said it before and will say it again, "There is healing in eating the right foods." Especially foods that fight AGAINST arthritis and promote a healthy immune system - like cod liver oil, which my kids take every day.
And, if you still don't believe me, read this chef's story that was featured in The New York Times about his "hero foods."
Incredible!
And, if you still don't believe me, read this chef's story that was featured in The New York Times about his "hero foods."
Incredible!
Thursday, August 04, 2011
JJ: Switching Meds
I took my gang to JJ's follow-up appointment today with our new rheumatologist, Dr. Miller. She is wonderful. I am really, really, really glad we switched doctors. She is so thorough with her exam and my kids really, really like her. You don't always get a doctor who not only knows what he/she is doing AND has wonderful bedside manner...especially with kids. I love that!
JJ has been on naproxen since April. It has definitely helped to ease his pain, especially in his knees, ankles and toes. His energy did take a big dip in the very beginning and we took him off the naproxen for three day and in those three days his pain was back in his knees, ankles and toes. He was waking up at night again, screaming from joint pain and was complaining about pain when he woke up in the morning. So, back on naproxen he went. However, to keep his energy up, but control his pain, he went from 10mls to 8mls of naproxen per day.
While the naproxen has helped some joints, it has not eliminated pain in other joints. He has fluid sitting on his left elbow (he can barely touch his left hand up to his left shoulder without yelling and pulling his arm away from you), his left wrist is now swollen and stiff and Dr. Miller also believes he has arthritis now in his right hip. When she went to check his hips, he winced from pain when she checked the right side (Have I mentioned how much I love her thorough exams?? Our previous doctor NEVER checked for these things!)
In addition to joint pain, he has also had tummy troubles since he started the naproxen. We started him on Zantac two weeks ago (1mls - 3x a day) and he still has stomach pain. So, because the naproxen is not taking care of all of the joints and because he is still having stomach pain, Dr. Miller is switching him to a new medicine - Mobic (Meloxicam). It is still an NSAID, but it is supposed to be easier on the stomach. And, the nice thing is he only has to take 0.5 mls once a day! He is to continue the Zantac while he is on Mobic (Meloxicam).
Dr. Miller was concerned that JJ has not put on any weight since March. So, because of all the tummy trouble he has had and no weight gain, she wants labs done to have him tested for Celiac Disease when he comes back in a month for a follow-up appointment.
In the meantime, when Mia goes in for her post-surgery follow-up appointment on Tuesday, August 9 with Dr. Vecchiotti to check to see how everything looks after the tonsillectomy and adenoidectomy she had a few weeks ago, Dr. Miller wants ultrasounds and x-rays done of several of JJ's joints: neck, elbows, wrists, and hips. It will be one very full, very long day for us at Tufts - JJ's ultrasounds and x-rays will be all morning long, then a break for lunch and then off to see the ENT at 1:15 p.m.
So, we will start this new medicine and see how he does on it. Unlike naproxen where I know what the side effects may be (stomach pain, bruising easily, etc.), Mia has never taken Mobic (Meloxicam) before. I am praying this new medicine will be easier on his system and bring his joints some much needed relief.
Up next: August 19 - Uveitis appointments at MERSI for both Mia and JJ.
In the meantime, we will be enjoying the rest of our summer. It has flown by so quickly! Can you believe Halloween has already hit the stores?? Before you know it, school will be in full swing with Mia in kindergarten and JJ in preschool five days a week. I am hoping to catch up on my sleep a bit this month and enjoy these last few weeks with my kiddos before things really start to speed up! :)
Happy summer to you all!
JJ has been on naproxen since April. It has definitely helped to ease his pain, especially in his knees, ankles and toes. His energy did take a big dip in the very beginning and we took him off the naproxen for three day and in those three days his pain was back in his knees, ankles and toes. He was waking up at night again, screaming from joint pain and was complaining about pain when he woke up in the morning. So, back on naproxen he went. However, to keep his energy up, but control his pain, he went from 10mls to 8mls of naproxen per day.
While the naproxen has helped some joints, it has not eliminated pain in other joints. He has fluid sitting on his left elbow (he can barely touch his left hand up to his left shoulder without yelling and pulling his arm away from you), his left wrist is now swollen and stiff and Dr. Miller also believes he has arthritis now in his right hip. When she went to check his hips, he winced from pain when she checked the right side (Have I mentioned how much I love her thorough exams?? Our previous doctor NEVER checked for these things!)
In addition to joint pain, he has also had tummy troubles since he started the naproxen. We started him on Zantac two weeks ago (1mls - 3x a day) and he still has stomach pain. So, because the naproxen is not taking care of all of the joints and because he is still having stomach pain, Dr. Miller is switching him to a new medicine - Mobic (Meloxicam). It is still an NSAID, but it is supposed to be easier on the stomach. And, the nice thing is he only has to take 0.5 mls once a day! He is to continue the Zantac while he is on Mobic (Meloxicam).
Dr. Miller was concerned that JJ has not put on any weight since March. So, because of all the tummy trouble he has had and no weight gain, she wants labs done to have him tested for Celiac Disease when he comes back in a month for a follow-up appointment.
In the meantime, when Mia goes in for her post-surgery follow-up appointment on Tuesday, August 9 with Dr. Vecchiotti to check to see how everything looks after the tonsillectomy and adenoidectomy she had a few weeks ago, Dr. Miller wants ultrasounds and x-rays done of several of JJ's joints: neck, elbows, wrists, and hips. It will be one very full, very long day for us at Tufts - JJ's ultrasounds and x-rays will be all morning long, then a break for lunch and then off to see the ENT at 1:15 p.m.
So, we will start this new medicine and see how he does on it. Unlike naproxen where I know what the side effects may be (stomach pain, bruising easily, etc.), Mia has never taken Mobic (Meloxicam) before. I am praying this new medicine will be easier on his system and bring his joints some much needed relief.
Up next: August 19 - Uveitis appointments at MERSI for both Mia and JJ.
In the meantime, we will be enjoying the rest of our summer. It has flown by so quickly! Can you believe Halloween has already hit the stores?? Before you know it, school will be in full swing with Mia in kindergarten and JJ in preschool five days a week. I am hoping to catch up on my sleep a bit this month and enjoy these last few weeks with my kiddos before things really start to speed up! :)
Happy summer to you all!