Update...Caitlin

We saw the pain specialist this morning. I really liked him! He thoroughly agreed with me that they were doing way too many CT Scans and said they need to do a platelet count BEFORE they do something like this. I told him I kept telling the ER drs to do this but they always worried simply because she has ITP. He said that is too much radiation in a short amount of time to expose a young child to. He asked me to describe each situation and only agreed with the time that she was going through the possible serum sickness with the Rituximab because she was having trouble walking. So, for you moms/dads out there...unless there is a low platelet count accompanied with symptoms or a head injury, do not allow your child to always have a CT Scan to rule things out. They are a good tool to have, but make sure they are necessary because of the radiation. (I think Caitlin's were quick enough that she probably wasn't exposed to much at all, but she did have 3 in less than a 6 month period.) Anyways, he was going to prescribe her Imitrex in the nasal form, but I asked to make sure it wouldn't cause bloody noses since we don't want to question whether they are from that or ITP. He agreed it would be better for her to have the pills and he said if she starts getting them more on a weekly basis or even twice a month, to let him know and we will put her on a preventative drug. We were also given a "headache diary" that we will have to fill out each time to see if we can catch the triggers and try to keep her from getting them.

Went over to get her blood drawn too for a count and with no injection last week, her count went up from 497 to 577 so no shot again today. Also got all the labs back from rheumatology. Not alot of changes, but her ANA titer increased to 1:360 with a homogenous pattern and she did a titer for a dsdna and it was 1:110. So I think they will just continue to monitor her. (Still haven't heard on the Plaquenil...I think the rheumatologist wants her to do it but the hematologist doesn't.)

She will get a physical next week with her hematologist and then we will take her to go have her wrist looked at to see when she can have her cyst removed. It is continuing to grow so I am sure it will be surgically removed and I hope we can take care of that next week.

Pauline:

Sounds like you got some where with the pain specialist. That's good!

As for the dsDNA, I'm surprised they don't diagnose her. That is a pretty strong indicator of Lupus. I think the only thing she is lacking are physical symptoms, but the labs are there. Starting Plaquenil would be a good idea if the Rheumatologist is still advising it.

Glad you are getting some help. I've had imatrex. It worked to stop my migraines. I stopped taking it because I developed a tremor a year after starting it. My family is prone to essential tremor, and so I'm sure that that's why it came on for me. My tremor is so slight people don't notice it, but it ended my trombone career because it affects my sound...but oh well, I move on. Of course the neuro says it was not the imatrex, but I did not have the tremor before, and now I do. Also, imatrex affects the GABA neurotransmitter, which when dysfunctional can cause a tremor. So, thus my theory, lol. I'm sure its due to my predisposition and not a concern for Caitlin, especially since she doesn't play trombone:).

The lack of physical symptoms is the reason for her diagnosing her with UCTD. The rheumy said most people with UCTD have the physical symptoms but not the labs to support a definitive diagnosis for Lupus. Since she has ITP and has many blood tests, i think they were able to find it way before it rears its ugly head. At least i hope it is a long time before Caitlin ever feels anything. The rheumy said to keep her active and to really try to keep her out of the sun as much as possible and when she is out, to wear a large hat and reapply sunscreen every hour.

Donna...I take Imitrex and have no problems with it other than that it doesnt always work. I took Midrin for a long time before that and that stopped working. Im sorry they caused a tremor for you! The dr yest said the most common symptom with Imitrex is chest pain and im thankful i dont experience it.

Pauline,
What were the symptoms of Caitlin's serum sickness from Rituxan? Emmy is scheduled to get her first infusion on the 15th and it's making me a little nervous as she had Aseptic Meningitis when she had IVIG. But I'm pretty sure they did not pre-treat her before the IVIG. Do you think the migraines are a side affect of the Rituxan or Nplate?
Thanks for any info you can share.
Shauna

Good luck with the Rituxan! I hope Emmy gets a remission from it like so many others have. I honestly think Caitlin's high counts are partially from Rituxan, but it was a delayed response, which does happen! Anyways, Caitlin's 1st and 2nd infusions went mostly without any problems. She did have some severe stomach cramping and a fever with her 1st, but things went better when they slowed it down. She got a fever a day after the 2nd infusion but got better with rest. On the morning f the 3rd infusion, she woke up with a sore throat. I didnt think anything of it. She did not really feel well during the 3rs infusion so she slept through it. They sped up the infusion too so i dont think that helped. Immediately when we left, she was feeling horrible and kept getting worse through the night. She mostly had alot of joint pain and the next morning, she could barely walk so we took her back in. They said a rash and swelling is more indicative of serum sickness and since she had neither, they said it could be serum sickness but they couldnt be sure and decided not to let her have the 4th dose. You will know if Emmy has it. It usually happens sometime between the 2nd and 3rd infusion. Most people dont get it so try not to worry about it. Keep us updated on how she does!

Pauline - yes, Caitlin does seem to be backwards, but that is a good thing. Most people have symptoms first but no confirming blood work. That causes years of going to doctors only to be told there is nothing wrong....drives people nuts. Symptoms are the worst part of any Connective Tissue Disorder, so I hope she doesn't develop them either. Plaquenil may help stave that off.

The first time I had serum sickness, I didn't have a rash or swelling either. The second time I did, so I wouldn't go by that. The horrible joint pain was the main thing.

Shauna - IVIG and Rituxan are very different so I wouldn't think her chances of having a reaction to Rituxan would go up since she had a reaction to IVIG. I have noticed a small trend though of people developing serum sickness if they have Lupus or Lupus symptoms. THAT is strange.