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TOPIC: Caitlin's count

Caitlin's count 9 years 9 months ago #74

  • tacmom
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I'm still trying to get used to this site. It "looks" pretty, but it is so darn slow that I'm tempted to post on the old site. I know I need to move forward on here though!!

Anyways, Caitlin had her IVIG last week. It didn't really boost her count at all. She only went up from 19 to 24. They had to treat because she had some bleeding and they were afraid it was internal bleeding. They decided to put her back on a high dose of Prednisone last Tuesday and we got a count today. No response again and her count went down to 20, but at least this time...she has no bleeding symptoms. I'm worried once she finishes the steroids though, we'll be dealing with some symptoms.

I have a feeling Caitlin will be starting the Rituximab/Rituxan this week, pending insurance approval. I truly hope that this will work for her because she is in the "angry" stage now where she is mad that nothing is working. If she wasn't in anything...that would be one thing, but she is being restricted at doing something she loves. I am more worried about the side effects of Rituxan than anything. If she has the same kind of reaction that she had to IVIG, she is going to be missing alot of school the next few weeks (if we start) and I don't even know what to do about work. And I HAVE to work...I don't have a choice because my husband is self-employed so I carry insurance for the 4 of us through my employer.

Trying to remain positive for Caitlin. She does have another competition in the morning and she should have fun with that. (No dangerous tumbling or flying) One of their teammates is out due to having a concussion earlier this week and she is really not able to remember anything. (She got it during a pep rally at her high school when she was basing for a stunt...the girl on top of her fell down on her and then she hit her head down on the hard gym floor.) They said it can take up to two weeks before everything comes back so she doesn't know who some of her teammates are or any of the routine. She did go up to Caitlin (one of the few names and faces she recognized) last night and say that she finally knows what she goes through with all of the pokes and prodding and it is not fun. I pray they all pull through tomorrow and it would be so nice if they could get a win, but that is wishful thinking at this point!
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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Re: Caitlin's count 9 years 9 months ago #77

  • Ann
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Will they do a low dose rituxan? If not then it's maybe worth looking into as there is a less likelihood of side effects.

I'm with you with the slowness of the forum and sadly when it gets busier it's going to get even slower. If you go back to the old forum it feels that it really flies.

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Re: Caitlin's count 9 years 9 months ago #85

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Ann:

I hope Rituxan works for Caitlin and gives her a break already! Most people do fine with few side effects - less than IVIG usually. Most side effects occur during the infusion and are dealt with then. Few side effects occur after.

The main thing you'd need to watch for is serum sickness. I had it, and it is listed as being more common in children. That can begin 2 to 4 weeks after the first infusion. It's miserable.

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Re:Caitlin's count 9 years 9 months ago #92

  • tacmom
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Ann...Caitlin's count went up after stopping Nplate. She started a pulse of steroid immediately after stopping to avoid crashing so quickly from stopping Nplate and her count one week afterwards was 135. Then we did nothing for almost 3 weeks and she had her IVIG last week. She's been off Nplate for a little over 6 weeks now.

Sandi...thanks for that! We will definitely watch for serum sickness. It was just a tough week emotionally for me last week feeling helpless when she was throwing up so much.
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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Re:Caitlin's count 9 years 9 months ago #96

  • lucidawn
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Tim hardly had any symptoms from the Rituxan...but he didn't respond to it either. It is still possible he will get a response in the future though.

VERY SCARY about the girl who bonked her head. What if it had been Caitlin?! OMGosh! I would freak out! I'm sure you deal with that all the time though.

I hope, as with all our kids, that you find the right meds for Caitlin. I never thought Tim would be refractory. I know his hemonc never did. He still has trouble believing it.

We will either be back on the Promacta (if Tim agrees), or probably try the Imuran/Cyclosporin/Cellcept cocktail for Tim. Splenectomy...I just can't get it out of my head that its permanent, it has lasting negative affects (immune suppression, higher risk of developing cancers, the extreme bleed risk after surgery, etc). I don't know. It just seems so radical and last ditch to me...not something you do cause you don't like your meds.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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Re:Caitlin's count 9 years 9 months ago #147

  • tacmom
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You are right "What if" it had been Caitlin that had gotten the concussion! I would have freaked out, definitely!! One thing that is much safer about our gym is that we always, always have a soft bouncy floor (not mats)...like the ones the gymnasts use to do their floor routine. It is actually a law now in Texas that all high schools must have a mat out when doing tumbling or stunts at all times, but the school that the other girl got her concussion at, was at a private school so I'm not sure the same laws apply. Caitlin's team mostly has high schoolers so if they are basing her, she is so easy for them to lift.

They WON first place yesterday at the competition AND they were the Grand Champions! We were so shocked and so excited!! It was our first time ever for the gym (we've been there since it opened because our friends own it) in 6 years that they got this title! Not only were we short a girl due to her concussion, but another one of our guys (we have two high school boys) was hurt with a dislocated shoulder so he only did the dance part and had help with some of the other girls when he had to lift up anyone. He sat down low in the back or off to the side when there was any tumbling done.

I am glad to hear that most people don't have a bad reaction to Rituxan. I truly hope that will be the case for Caitlin. I am sure we will find out tomorrow or Tuesday when Caitlin's first infusion will be. I talked to my mom, and she doesn't understand why they are doing so many treatments in such a short period of time. She thinks the hospital is just trying to make money off of me! It is so hard to explain ITP to other people when they keep saying "but she looks just fine, I don't see anything wrong with her"! I had my team leader call the dr Friday to find out what Caitlin's count was, and for the first time...she keeps telling me how bad she feels because she got to hear the nurse herself say "the count doesn't look good" "I just don't know what to say and I'm so sorry because I know how badly she wants to compete". (They have no idea that she did last week's and this week's competition and I'm too scared to tell them because then they'd think I'm a bad mom.) And maybe I am...but at least I know Caitlin is sooo happy right now!

She did have ALOT of joint pain last night with her knee and her shoulder. I asked her if she did something during the competition and she said no. I think I remember reading that coming off Prednisone can cause joint pain so I told her it was just from the medicine. She had a 10 minute nose bleed yesterday morning but it wasn't as bad as some of them have been, whew! It is still so hard to tell what is an ITP nosebleed and what is a normal nosebleed!
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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Re:Caitlin's count 9 years 9 months ago #152

  • lucidawn
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Congratulations to Caitlin! I'm glad they were able to change the routine for her so she could compete. She would have really been bummed to not be part of this victory. Let us know how the Rituxan goes. It was easy for Tim, though time consuming.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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