Thursday, November 7, 2013

Update on Jackson's brain calcification

I spoke with Jackson's rheumatologist on Monday regarding where we are at with a 2nd opinion with a neurologist.  He still has not received the copies of Jackson's MRI or ct scan so has not been able to look at them.  I have requested copies be sent to him twice now.  So I went and got copies myself and will send it or hand deliver it to Dr. Vehe as I am so frustrated.  Because of this Dr. Vehe was saying we might want to switch Jackson's care over to mayo in Rochester since they are affiliated with the doctors in our hometown then there won't be any issues with getting records.  I don't want to do that at this time as I love Jackson's doctors and they have been with him since the very beginning of his diagnosis and know him so well.  Dr. Vehe sent a letter that he gave me a copie of to the neurologist we saw in Rochester stating he does not agree with her diagnosis of the calcification in the falx of the brain being from the methotrexate.  He asked if he could speak with her or if she could provide him specific information to support her statements.  He stated that there is no child with JA that has ever had this.  And that the only people with calcification from methotrexate (chemo) is leukemia patients who were also getting radiation and much higher doses of methotrexate and in those patients the calcification was in a different area of the brain.  He told me that if theres evidence to back her statement up that Jackson would go in the medical books as being the very first patient ever with brain calcification due to methotrexate.  Pretty much meaning this is not from the methotrexate.  Unfortunately she will not return the calls to Dr. Vehe or respond to his letter.  He is very frustrated and said it is very critical to get to the bottom of the cause.  He said the next step is a second opinion either with a neurologist at the u of m children's hospital or to see a pediatric rheumatologist in Rochester for a 2nd opinion.  He was leaning towards getting a 2nd opinion with rheumatologist in Rochester due to the fact they have access to the MRI and ct scans where the neurologist in Minneapolis would not.  But now that I have the images myself I want to get the 2nd opinion with a neurologist in Minneapolis.  This whole situation is so very frustrating to me!  I just cant believe the first neurologist would say its the methotrexate without having any evidence or even having any other documented child having this.  I feel like we have wasted time and money with her!  We could have seen someone else and gotten to bottom of this by now.  Not to mention the time off work Mike and I took to go to Rochester.  The gas and money for hotel.  So hopefully we can get another appointment sometime soon and get some answers. 
Jackson had a infusion at the children's hospital in Minneapolis Monday also.  It went well, he slept the whole time as usual.  His dosage was increased at this infusion and will stay that way for awhile.  He also had his pressures in his eyes checked and they were still holding out good which is great.  We go back to see eye doc December 6th.  I am praying theres at least some improvement but not counting on it as last time he had a big flare it went on for months and months.  Jackson's next infusion is the week before Christmas.  So Jackson and I have been picking up little gifts here and there like movies, crafts, coloring books etc.  We will continue to do that until his next infusion and then at this next infusion we will go early and Jackson will hand out these gifts to the other kids in the infusion center.  It is just something I felt the need to do.  Every time we go I look at all those sick kids and it breaks my heart that we just wanted to do something for them for the holidays.  The kids in the infusion center range from kids like Jackson with autoimmune diseases, kids on dialysis, kids with blood diseases, kids with cancer etc.  We will also be bringing little gifts for the nurses.  We have gotten to know all of them well and they are the most caring people to be caring for sick kids every day. 
Will update again soon!  Thanks for all the thoughts and prayers!

5 comments:

  1. Other children have had brain issues from mtx:
    "I just wanted to post you a note about what happened to my son. About a year and half ago, Zack was having a routine MRI done on his TMJ to check for arthritis. I was alone that day waiting for them to bring him back to me. What was supposed to be 45 minutes turned into 2 hours - I was frantically pacing, a complete wreck when a neurologist appeared and took me aside and told me they had seen something on the MRI and decided to explore. They told me Zack had white matter changes in his brain (not cancer) and they didn't know what it was from. While they ran every kind of frightening test on him they took away his Humira thinking that may have triggered something. I watched as Zack slowly went down hill (pale, lost weight, etc.). Then about 3 months into the investigation when every scary test had come back negative, one of the radiologist said - this looks like the scan we see with methotrexate toxicity when cancer patients are taking high doses of it. They took away Zack's methotrexate and wow did he then go down hill fast on his arthritis symptoms - I then insisted they give us something and he was put on Anakinra which has been a miracle drug for him. With more investigation they found out that Zack has a gene mutation called MTHFR which leaves him predisposed to low folate levels in his cerebral spinal fluid (normal folate in the blood though). Methotrexate is a known depleter of folate and it appears that with Zack's genes and the chronic use of MTX this may have caused the white matter changes which we found likely just before he started showing symptoms. He now takes a special folate supplement that crosses the blood/brain barrier to ensure he has plenty of folate in the right place and he will not be back on MTX. One word of note: MTHFR gene mutations are relatively common - up to 30% of caucasians have this. MTX toxicity is known to be heightened in individuals with this mutation. Also - another important lesson learned. Just before they took away his humira, we had Zack's regular eye exam - 20/20. By the time we went back 6 mos later after the humira and MTX were taken away he had bad uveitis which resulted in cataracts and vision loss. Make sure you keep and eye on the eyes while off the arthritis meds."
    http://community.arthritis.org/go/thread/view/143395/29584591/Do_you_ever_feel_like_you_are_going_to_lose_it?pg=2

    This is the only public post I know of, but if you provide an email, I can put you in contact with other moms.

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    1. Hi I replied below in comments with my email. Saraehol5@yahoo.com. please email me. We are seeking a 2nd opinion due to Jackson's rheumatologist not agreeing its methotrexate saying there no documented case in this area of brain and low doses of methotrexate. After reading your story I don't know what to think anymore. And it scares me as Jackson is still on methotrexate. I would love to talk to you.

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  2. Good luck!! Keep on fighting. My daughter (Bella) was just diagnosed with JIA in August and it seems like a long uphill battle that is ever changing! We will pray for you! Jamie & Bella

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    1. Thank you! It is quite the battle. We will pray for your daughter also!

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  3. To the comment of person "unknown" my email is saraehol5@yahoo.com. please email
    Me because I am very intrested in talking with you. Jacksons rhematolgist does not agree its methotrexate he says there is no documented case ever in low doses of methotrexate. We are seeking a 2nd opinion and I would love any info I can get. Thanks.

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