"They have no struggles; their bodies are healthy and strong" (Psalm 73:4, NIV).
Today was so much better than yesterday. A totally different day for Mia (despite that she kept asking for hugs all morning long because she now knows now where we are going when we say Dr. Lopez's name in the house).
We met with the pediatric rheumatologist at NEMC this morning. He took a look at Mia's joints and was very pleased with what he saw (this was the first time he has said this to us). Her knee was a totally different knee than yesterday - minimal resistance, minimal fluid. When he pressed her leg flat to the table she was sitting on, the back of her knee was ALMOST touching the table - the best he has seen her knee so far. Also, her big toe on her left foot seems to be slimming down. He said it may take some time for it to even out and look normal again, but it is on its way.
So, for now he wants us to continue with what we have been doing (5 ML of Naproxen twice a day, knee brace at night, weekly PT & OT, at-home PT). He never mentioned anything about steroids (praise God!). He wants to see her again in two months from now. At that appointment they are going to do more blood work (MOM ALERT = BRING LOADS OF SNACKS!). They need to check her sedimentation rate*, which was quite high at her initial diagnosis (41). Also, per our request, he is going to have her checked for mycoplasma antibodies in her blood caused from consuming organic whole milk (one of my major regrets!). To put it in simple terms, mycoplasma is a bacteria that masks itself as arthritis and it may be the cause of many horrible diseases (i.e. auto-immune diseases, cancer, lupus to name a few). It infects females four times more than males. And it could be the cause of inflammation in Mia's body. Either way, we need to have her tested for it so we can rule it out.
We are so pleased with this good news today. When we got to the car, I cried...out of happiness and relief. To some, JRA may seem like no big deal. But it is a big deal when you have seen your child struggle to walk, when you have seen her drag her leg, when you have heard her let out cries in her sleep, and when you have seen her tears from the pain of morning stiffness. No parent wants to see their child in any amount of pain - great or small. It has been a long four months...for all of us. And I am so grateful to God that she is better than she was several months ago. To God be all the glory!
Thank you all for your prayers and words of encouragement. Your prayers are working! And it means a lot to us.
* Erythrocyte Sedimentation Rate Test. An erythrocyte sedimentation rate (ESR or sed rate) measures how fast red blood cells (erythrocytes) fall to the bottom of a fine glass tube that is filled with the patient's blood. The higher the sed rate the greater the inflammation. In addition to rheumatoid arthritis, the sed rate can be high in many conditions ranging from infection to inflammation to tumors. The test is used, then, not for diagnosis, but to help determine how serious the condition is.
PTL!! We were praying for the appt yesterday and glad that it all went well!
ReplyDeleteThank you, P! I appreciate it! Now her joints just need to remain how they are now!
ReplyDeleteShe is such a trooper! :) I honestly think God gave her the personality that she has to be able to handle everything the way she does. Yes, the appointments and the therapy are not fun at times, but she makes it fun by being who she is...a silly, carefree, little girl. :)
It seems as if a miracle occurred overnight and I don't doubt that it was one. God is faithful.
ReplyDeleteI am piqued by your m=commetn regarding the milk. What would you have given her instead? Does she drink cow's milk now?
Hi Tanya!! :)
ReplyDeleteNo. She does not drink cow's milk now. We took her off of it back in October...along with anything that contains egg or gluten. Right now, she drinks rice milk (West Soy Vanilla Rice Milk), although, I have heard almond milk is great too, but the taste may not be as pleasant for young children.
Looking back, I probably would have either done one of three things: 1. continued with formula and put her on Similac Go & Grow formula, 2. gone straight to rice milk, or 3. tried goat's milk. I would never have given her organic whole milk. This whole thing has been one big "lesson learned." And our son definitely won't be drinking organic whole milk.