It was October 13, 2010 that Emily was diagnosed with Dermatomyositis, and officially diagnosed with Mixed Connective Tissue Disease. That week, she was kept inpatient for six days for heavy-duty steroids and other meds, along with a plethora of tests to rule out other not-so-nice diseases. It was last September 26th that she had the port placed, and it was early October when we realized she had staph in there. That led to an almost month-long stay. It broke her heart to have to miss the fall carnival at school and Halloween. Granted, she was able to trick-or-treat at the hospital, but it just isn't the same.
I am happy to say that this October the bad chain was broken; we had our typical overnight for meds, then we were free to go home! Thank you, Lord!
I didn't mention Zach again this time to our rheumy. I believe last month was just a fast psoriasis flare, likely due to the change in weather. He has a small spot or two, but for the most part it isn't big enough to concern us. I'm keeping my eye out, and I know he will tell me if anything changes. We are planning on using the Body Check Journal to see if we can establish patterns for both kids. If you have ANYTHING that you are trying to figure out (rashes, erratic behavior, allergies, flares, etc) I strongly recommend that you try this journal, lovingly made by one of our favorite arthritis mom's. She has discovered so much about her daughter by doing this herself, which is how she thought to make the journal!
Em's appointment went better than I thought it would. Our rheumy was sick, and it was a bit hard to understand him over the noise and through his mask, but we decided together not to make any changes yet. He said that studies show that Rituxan, Orencia and CellCept in combination are proven to help things like her throat issues, but it isn't something that we can do for more than a few months. He doesn't want to backtrack before giving the combo a fair shot. Since it's only been 2 months since she's been on CellCept, and 5 or 6 for Orencia, he wants to be patient for just a bit longer. I'm good with that. The biggest fear is her throat, so if this combo will help her throat the most, we will wait. Monday and Tuesday she received her Orencia (30 mins), Rituxan (4 hours) and IViG (over 12 hours). Wednesday is the day for her to recover from meds, and for me and Zach to recover from stress, and lack of sleep. Poor little man has a cold, too.
It is crazy how much has changed with Em in the past month or two. When people ask me how she's doing, I have no idea how to answer. Here's why: yes, the throat problem is pretty big, and scary. However, she has been running around, trying to hoola-hoop, and she has been giggly. Really giggly. She sounds.... happy! On the flip side of that, for a few weeks there she was taking 2-3 baths a day. Usually she does that when she's hurting or stiff. I have no idea what to make of it, but I take the running and giggling as good signs. It's been so awesome to be home with them more!!! I expect them both to be more giggly when we change our homeschool program. We are just worn out from the amount of work they have around other things, like therapy. We found a new program that I suspect will be the winner for us. I know two families that use it and absolutely LOVE it. They have similar situations, so I think this will work well for us.
The steroid weight has started dropping more! She started steroids at 42 lbs. (and really under weight.) Two months later she was 75 lbs. Today she was 60.5! Her clothes are falling off of her. I had to go buy her new jeans. She fit into her FAVORITE pair of old pre-steroid jeans! So exciting! I realized tonight that if she is wearing a large shirt you can't see her belly anymore. This is helping with the activity level, I'm sure. Oh, I am so glad! Next month I will ask about the next decrease. Currently she is on 3mgs a day.
Speech came into our room this morning for a consult, but she was so tired that we couldn't wake her. Our doc wanted them to see if there was anything they could do to help her swallowing issues. Being the skittish type, she was afraid of talking to them anyway. I will have to psyche her up for it next month. Another thing that was supposed to happen was an ultrasound of her hands. This is more for the doctors benefit for now, but I suspect that it could have long-term benefits. He is doing an informal study on ultrasound for Scleroderma hands. I was unable to get specifics out of him, but hopefully that will also happen next month. I would like to have the opportunity to help with some of the science involved; being a test patient is great when it's painless! It may even help her one day.
We are talking much more formally around the house about going gluten and processed sugar-free. We are going to try! I expect that it will take quite some time to make the full change, but it may well be worth it. We shall see! I certainly want to try. Since getting into making our own household cleaning products, I have been looking into making moisturizer, lip balm, shampoo, soap and laundry detergent. I am hoping that this may help. It can't hurt!
Last thing to add is that we have a blog guest post up! The Arthritis National Research Foundation has made it their mission to highlight stories like this. It made my day to see this made it up! And I believe that is all. I am so exhausted to I cannot recall anything else. I am heading to bed. Have a wonderful day ahead!
Showing posts with label Autoimmune diseases. mixed connective tissue disorder. Show all posts
Showing posts with label Autoimmune diseases. mixed connective tissue disorder. Show all posts
Wednesday, October 31, 2012
Thursday, May 3, 2012
World Autoimmune Arthritis Day is coming!
Are you looking for more information on forms of Autoimmune Arthritis? Are you wondering what the heck it is? Are you or a loved one affected? Well, if so, you have found this post at the right time! www.worldautoimmunearthritisday.org is hosting this FREE event for a total of 47 hours so that it will span across the world! It's coming your way on May 20! If you would like to register click here to head over to the registration page.
I'm changing my format a bit tonight. This post is intended to be a "take away" from this event. This is to go along with my presentation. I will be speaking about how to cope with having a child with autoimmune arthritis. I touch briefly on what juvenile autoimmune arthritis is, some things to watch out for, how to find a doctor... that type of thing.
There are some things that I have found important that I did not cover in my presentation, and one that I just can't stress enough. Having one autoimmune disease opens a person up to developing more. I was so blind at first with my daughter. I truly think that she had JA from a very, very young age, but we didn't figure out what it was until she was 5. It took months to get into a pediatric rheumatologist, and another year for her to start to feel good. Once she was on the right medicine combination she did so well that many days it was almost like she wasn't ill. I naively thought "my child will never flare. We're past that now." I have since learned through making friends with a few hundred parents of JA children that most kids don't outgrow this. I'm sure that there are some, but not many. Eventually medicines will stop working. You will be on a quest to find a new medicine. That is terribly frightening... making decisions that may alter your child's health. You look at the warnings and you are terrified. Such decisions have to be weighed carefully. Do I let him or her suffer and risk more severe damage or try something that may cause other problems?
Hopefully your child will be a "simple" case. Maybe a nice oligo (less than 4 joints) with no eye problems. However, JA can look like simple arthritis but actually just be the first signs of other diseases. In my case, my daughter has Mixed Connective Tissue Disease. It started with the arthritis but within about six months of treatment we noticed that she started turning blue. Yes- blue. The pictures below are actually a Raynaud's Phenomenon episode. The blood vessels overreact to the cold. True Raynaud's has a 3 phase color show. Blue as the hands start to get really cold, white as the blood stops flowing and red as the blood starts flowing again. Raynaud's can be its own disease but it is actually worse as a secondary. It is associated with MCTD, Lupus and Scleroderma. It takes almost nothing to trigger a flare. My daughter developed frostbite inside of the school cafeteria! That's when you start to make life-altering changes. She wasn't allowed to wear shorts or skirts, she had to keep jackets, mittens and hand warmers with her at all times and she had to wear 2 undershirts under her clothes until she was finally started on medicine for it.
We had a very hard time researching MCTD. It is basically overlap. There is a long list of symptoms that it can include, and every affected person has a slightly different case. What did we learn from this? With an autoimmune disease, crazy things can happen. Weird rashes can be a sign of an unrecognized disease. The blue hands can mean Raynaud's. Watch your child carefully, chart pain, stiffness, and any unusual symptoms. My favorite thing to do is take pictures! Yes, I have taken pictures of just about every strange occurance that we've had. Maybe your doctor won't see how big your child's knee can swell in person, but they have to appreciate the picture! And bring up anything that seems unusual to you. Sometimes it's the little things that don't make any sense that can change a diagnosis. For instance, pain in the heels or toes can be attributed to Spondyilitis.
They say that usually siblings don't get diagnosed but I personally believe that their figures are flawed. I am on several JA boards and between those and my couple hundred parents on my Facebook, we see many siblings becoming affected. I would try hard not to get paranoid but always be on the lookout for symptoms.
As for helpful hints, these are some things that we do.
-Talk to your child, and tell them as much as you can to help them to understand what is happening to them. Put yourself in their position. If you were 5, 10, 15 and just starting to go through something like arthritis, how scared would you be? They need to understand some of what is happening. Also, help them to know what medicines they are taking. If they are hospitalized and you are not in the room when they get their meds, they may be over or under medicated. (Yes, that has happened to us, but thankfully Emily knows what to take and she stopped it!)
There are some things that I have found important that I did not cover in my presentation, and one that I just can't stress enough. Having one autoimmune disease opens a person up to developing more. I was so blind at first with my daughter. I truly think that she had JA from a very, very young age, but we didn't figure out what it was until she was 5. It took months to get into a pediatric rheumatologist, and another year for her to start to feel good. Once she was on the right medicine combination she did so well that many days it was almost like she wasn't ill. I naively thought "my child will never flare. We're past that now." I have since learned through making friends with a few hundred parents of JA children that most kids don't outgrow this. I'm sure that there are some, but not many. Eventually medicines will stop working. You will be on a quest to find a new medicine. That is terribly frightening... making decisions that may alter your child's health. You look at the warnings and you are terrified. Such decisions have to be weighed carefully. Do I let him or her suffer and risk more severe damage or try something that may cause other problems?
Hopefully your child will be a "simple" case. Maybe a nice oligo (less than 4 joints) with no eye problems. However, JA can look like simple arthritis but actually just be the first signs of other diseases. In my case, my daughter has Mixed Connective Tissue Disease. It started with the arthritis but within about six months of treatment we noticed that she started turning blue. Yes- blue. The pictures below are actually a Raynaud's Phenomenon episode. The blood vessels overreact to the cold. True Raynaud's has a 3 phase color show. Blue as the hands start to get really cold, white as the blood stops flowing and red as the blood starts flowing again. Raynaud's can be its own disease but it is actually worse as a secondary. It is associated with MCTD, Lupus and Scleroderma. It takes almost nothing to trigger a flare. My daughter developed frostbite inside of the school cafeteria! That's when you start to make life-altering changes. She wasn't allowed to wear shorts or skirts, she had to keep jackets, mittens and hand warmers with her at all times and she had to wear 2 undershirts under her clothes until she was finally started on medicine for it.
They say that usually siblings don't get diagnosed but I personally believe that their figures are flawed. I am on several JA boards and between those and my couple hundred parents on my Facebook, we see many siblings becoming affected. I would try hard not to get paranoid but always be on the lookout for symptoms.
As for helpful hints, these are some things that we do.
-For
injections, ask your doctor to prescribe numbing cream. This numbs the area so your child doesn’t
feel the sting. This has been a miracle for us. You may try to use it for lab work also, but it can make the veins roll or "hide".
-Welts
or itching after injections: always consult doctor but often a small dose of
allergy medicine will help lessen the itch. My kids like to use ice after an injection, also. We make sure to warm the medicine up with body heat first before injecting, but have an ice pack nearby for after.
-A
heated mattress pad can take away much of the morning stiffness. This can be used year-round. This was another huge miracle for us. (NOTE: Do not
sleep with a heating pad for safety purposes.)
-A
heating pad will help a lot, but if you can’t take one with you, make a sock
filled with rice. This can be heated in
the microwave for a minute and placed in lieu of a heating pad. There are also small hand warming pads that are disposable that can be used as a heating pad. They don't get as hot but they are much more portable!
-A
nice hot bath can do wonders for stiffness and pain. There are some bath additives out there labeled to help with pain!
- We had a friend that told us about magnet therapy. Emily swears by magnet therapy. She always keeps an anklet with magnets on for her ankle and knee. She swears that it works. I couldn't tell you how, but she's convinced.
- We had a friend that told us about magnet therapy. Emily swears by magnet therapy. She always keeps an anklet with magnets on for her ankle and knee. She swears that it works. I couldn't tell you how, but she's convinced.
-Peppermint
can help with nausea
-Sleep
disturbances- We haven't really figured out anything good for this yet. Emily does pretty well just settling herself back down now. In the past before she was on a prescribed NSAID (non- steroidal anti-inflammatory) we used to give her a little pain relief on the bad nights.
-Relaxing the jaw- We only just started dealing with jaw issues in the past few months. Thankfully, so far so good with that. I was told in the Juvenile Arthritis Conference session on jaw JA that up to 83% of the kids actually have jaw arthritis but it's silent (painless) until it becomes very bad. I was extremely grateful to hear that, because when my son told me two months later that his jaw hurt, I got the ball rolling! (He currently has the Juvenile Psoriatic Arthritis diagnosis.)
-Research everything as much as you can!!! Knowledge is power, and the more you know that more of a help you can be to your child. The doctors are human- they will not always be correct. Doing your own research can make your family less of a victim and more empowered.
-Get copies of any tests and add them to a thumb drive or disk. This makes it easier if you are hospitalized or if you have to see another doctor. Also, look over your labwork reports. Just because a doctor orders blood work to be done doesn't mean that they are seeing it! If you see something that doesn't look right, bring it up to your doctor.
-Get copies of any tests and add them to a thumb drive or disk. This makes it easier if you are hospitalized or if you have to see another doctor. Also, look over your labwork reports. Just because a doctor orders blood work to be done doesn't mean that they are seeing it! If you see something that doesn't look right, bring it up to your doctor.
-Talk to your child, and tell them as much as you can to help them to understand what is happening to them. Put yourself in their position. If you were 5, 10, 15 and just starting to go through something like arthritis, how scared would you be? They need to understand some of what is happening. Also, help them to know what medicines they are taking. If they are hospitalized and you are not in the room when they get their meds, they may be over or under medicated. (Yes, that has happened to us, but thankfully Emily knows what to take and she stopped it!)
-Your child should be pretty free to do whatever sport he or she would like to do as long as they can. If it hurts they should stop or slow down, but moving the joints will help to lubricate them. They should be free to set their own limits within reason.
-If your child has arthritis in the hands have them take little tiny toys (like the kind you find in gumball machines) in their pockets to play with all day. Play Doh and squishy balls are also good for hand exercises.
-If they can stand the heat, get a paraffin bath. That can really help the hands a lot.
And if you have any questions that I haven't covered, please feel free to ask them! Here are some links that I have used to get better information.
And if you have any questions that I haven't covered, please feel free to ask them! Here are some links that I have used to get better information.
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