ER Visit

Just when we think we get a break from going to the dr, we get sent to the ER! Caitlin has beem struggling with a bad headache for 4 days now so i finally called the dr to try to get something stronger instead. It couldnt be that simple because of stupid ITP! She got her 3rd CT Scan of the year! This is getting old! Isnt it ok for an ITPer to have a normal headache? Hers is a migraine and thats all it really is but we re stull in thw ER 5 hours later. We know that her CT Scan was clear but we dont knoq her platelet count. Im sure its fine since it was at 132 last week. They also wont send us home with more meds until she sees a neurologist. So we're stuck with useless Tylenol unless we bring her back to the ER again for more narcotics (ocy???) for her migraine. (it was supposed to work in 15-30 min and it hasnt worked after 45 min)

I take paracetamol with codeine for my migraines and the codeine in it seems to help my migraines go away, don't know about where u are, but u don't need a perscription in Australia for painkillers with codeine, maybe go to the drug store and talk to the pharmicist there about anything stringer she can take without a perscription. I know how she feels, I get a headache at least a few times a week which can quickly turn into a migraine if I don't take something straight away. I went through all that waiting in the ER in Nov last year cause I had a headache/migraine on and off for a month and the scans all came back normal too. Hope she is feeling better and she can find some relief soon

Pauline,
If she's having migraines, you don't want narcotics anyway. Narcotics will cause rebound headaches...as will tylenol eventually. They like to perscribe things like imatrex for migraines. I personally don't recommends imatrex either because I took it and ended up with a permanent tremor. You can also take propanalol, which is a blood pressure med. However, it messes up your veins...not good for an ITPer. It makes you veins smaller and hard to get to for IVs and blood draws. I have experienced this. I don't take it anymore. Another option is topamax, though I'm not sure if its used in kids and teens. its a neuroleptic (used to control epilepsy), but also for migrains and for tremors. It has some mild side effects, you can't taste carbonation (soda tastes flat) and you can have some tingling, but it goes away. But, it totally controls migraines unbelievably. i never get them now. So, thought I'd pass that on to you.

Just for your info, my MS son gets migraines too. He and caitlin have alot of similarities, I think, don't they?

Pauline,
If she's having migraines, you don't want narcotics anyway. Narcotics will cause rebound headaches...as will tylenol eventually. They like to perscribe things like imatrex for migraines. I personally don't recommends imatrex either because I took it and ended up with a permanent tremor. You can also take propanalol, which is a blood pressure med. However, it messes up your veins...not good for an ITPer. It makes you veins smaller and hard to get to for IVs and blood draws. I have experienced this. I don't take it anymore. Another option is topamax, though I'm not sure if its used in kids and teens. its a neuroleptic (used to control epilepsy), but also for migrains and for tremors. It has some mild side effects, you can't taste carbonation (soda tastes flat) and you can have some tingling, but it goes away. But, it totally controls migraines unbelievably. i never get them now. So, thought I'd pass that on to you.

Just for your info, my MS son gets migraines too. He and caitlin have alot of similarities, I think, don't they?

Finally got home from the ER...what a long day! Her platelet count soared again, sigh! 747! Not good!!

Donna...I don't know that we have a choice on what kind of medication Caitlin gets. Right now, she needs whatever works for her. She threw up several times while we were in the ER because her headaches were hurting so bad. Zophran finally helped. Anyways, we got some Zorco (just 5 pills). I think that is a narcotic, but she was in pain today and even after the pill given at the ER, it still didn't take it away. She was rolled up in a ball on the way home from the hospital and she still is now. For her to miss two nights of cheerleading and one night of tumbling is such a rarity for her. I know she was hurting!

She's supposed to go in early and take a final exam that she missed today. She just has two left and then she is done with school. (Tomorrow is the last day, a half day).

With her high platelet count, we have to go in on Tuesday and I have to bring the meds with me since I was planning to inject at home. I guess it is kind of a good thing that we found out what her count was because it wouldn't have been good for us to inject more meds when she's at 700+ now.

Oh, and on another note...the ER dr asked if Caitlin had Lupus. He was looking over some of her bloodwork. He wants us to see a neurologist ASAP, but the hematology nurse said to wait because it could very well be the drug causing her migraines. (I don't think so considering the family history of migraines.)

I don't think seeing a neurologist would hurt anything. I also think she should be tested for APS antibodies again. Sorry, don't mean to be so bossy. I just worry about her. Has anyone in your family ever been tested for APS? It's supposedly hereditary. I should have my kids get tested, but they don't have any symptoms so what's the point? My married daughter uses BC and I worry about that. She doesn't seem to have any autoimmune issues though. I do not want my daughter with Graves Disease using BC, so I have told her the reason why and she doesn't use it.

Poor Caitlin. I hope she feels better soon.

No, noone in my family has been tested as far as I know. It is really me and my 2 girls that have trouble with the migraines. I will ask the hematologist next time I see her to see about testing again for APS antibodies. (You're not being bossy...just speaking from experience!)

I am soooo tired. Tomorrow is my last day of work and I missed an entire day of needing to get a zillion things done. Trying to work at home, but now I am too tired to think straight. I am going to ask my boss if I can work on Monday to make up for missing yesterday since there is no way I can finish tomorrow.

Caitlin continued vomiting tonight because of her headache. Now I am so glad to know that she has a clean CT Scan because I would have been double guessing myself and wondering if something more was going on. Going to check on her through the night to make sure the meds don't affect her too terribly.

Pauline,
Yeah, I understand. The neurologist would evaluate and prescribe those sorts of meds for migraine. He will steer you away from narcotics, though. Hope you resolve the issues with meds for ITP too and the whole Lupus issue.

Day 5 of her migraine! Poor girl! She's ok as long as she lays flat in bed, but when she gets up, her head hurts so bad that she starts vomiting again. Ugh! She has beat my record for the longest migraine! The better news is that she is laying straight now rather than curled up in a ball. I finally put three pillows together to prop up her head and told her she needed to stay upright some to help her get some energy back.

Her hematologist thinks she has some kind of GI bug that is causing her to throw up. I'm not so sure...I think it's her headache. After I told her she wasn't feeling any better this morning, she said it was time to do a full work-up with Neurology and get some home management for the migraines. She hasn't even started her period so I hope it doesn't become even worse once she starts! That was when mine became full-blown and absolutely horrible!

Today was the first day I lost it, emotionally! I am usually so composed and can act like nothing is wrong, but when I got the text from my husband that Caitlin was crying and he didn't know what to do for her, I just broke down and cried. My boss sent me home and told me not to worry about work and I can get it done next week. I just made Caitlin some soup and she is eating some crackers and I am going to try to get as much work done as I can so that I don't have to do anything other than bring things back to the office to file. Oh, and on top of that...my husband is currently on the way to the hospital because he paged his mom and said he couldn't stop throwing up. (It has been close to triple digits here, VERY hot!) He is so bad about drinking enough water and had to take over for two of his employees out this week so I think it is heat exhaustion. Then I think seeing Caitlin like that this morning just made things worse. Since his mom is taking care of him, I'm going to stay home and take care of Caitlin but I am constantly checking my phone to make sure he is ok! The last day of school is supposed to bring happiness! Not more stress! (It will be better next week though, I know it!)

Quick note to let you know that I'm praying for your sweet Caitlin, your husband, and you! I'm so glad your boss is so great and you have your mother-in-law to help out too. Wishing I could send you some chocolate and a latte from Seattle too!
LaMonica
mom to Camden 9yrs (dx 6/09)

Awww, thank you Lamonica! It's the thought that counts! How sweet!

The Norco finally kicked in for a bit and Caitlin was able to get up and walk around for about a half hour. The headache has since returned so I had her take some Tums and some Tylenol so that we can save the Norco for the extreme headache. (She only has 3 left anyways.)

My husband is ok...he had a migraine too! So something is going on...something is either in the air or in our house. I'm going to look for our carbon monoxide detector just to make sure our levels are ok and not contributing to the headaches. I've had one all week, but I've been stressed due to work and other things. My husband finally experienced his first migraine and has no idea how we do it, lol! (I told him not to touch her Norco!)

The doctor has called as well as the nurse several times to make sure Caitlin is ok. They wanted us to bring her back and possibly get her on some IV fluids to help get her hydrated, but I wanted to wait and see if we could get her to drink fluids on her own.

I was able to get alot of work stuff done at home so I only have a few more things I have to do at the office and then I can relax for 2 1/2 months! Too bad I'm not able to do that already, but almost there!

Oh, Pauline, I'm so sorry Caitlin's not feeling well! Run this one by the docs: she has so many platelets now that it's hard for her blood to make it thru the smaller vessels?! And if that is the problem--by way of relief? Well, I know they have machines that cull out platelets--cause they do that at the blood donor center, too. Maybe she could do a short 'run'--like a quarter to half a bag instead of the whole thing. I have a Girl Scout friend whose blood is 'too thick'--I forget the condition--and she goes in to get her blood thinned... Really! And she can't donate them, either.

I'll bet your boss will ok your plan for Monday, and think how much quieter it will be!!But you missed the last day??? Now you'll think of their little faces all summer! Sorry you're wilting there in TX. I just heard that chocolate milk is better than Gatorade after a workout--but keep the water flowing, too! Better yet, get IN some water, flowing or otherwise! Feel better, Ms. Caitlin! Ann, Caitlin's (23) Mom

I was wondering about that too - platelets too high causing the headache. I know she's had them before, but this one seems very long and severe.

Hang in there, Pauline! I know how bad things can get sometimes...you start wanting to look for the highest bridge!

Just a thought. Last year my youngest son got a really mild virus in the middle of a heatwave and ended up in hospital becuase he was dehydrated. The symptoms Caitliln is having of normal headache and vomiting sound very like how Lol was.

Hope she is better soon anyway Ali

Caitlin finally seems to be getting better, but she did ask for more Tylenol before going to bed. I really hate her taking so much meds but I don't want her migraine to come back. Hopefully she'll wake up tomorrow feeling normal.

I finally had a chance to look at her labs. They told me in the ER that everything looked great except for her platelet count. Her neutrophils were high at 81.4 and lymphocytes were low at 10.2. It looks like lymphs are within range when I look at the reference range so I don't know why it was flagged. Neutrophils, from what I see, should be between 1.5-6.6. I am pretty sure that she is usually high there and they've never said anything so maybe they're not worried about it. She did get her highest wbc ever at 9.0 and usually she is between 2.5-3.5 so I wonder if she had some kind of underlying virus that may be the reason why she was vomiting. (9.0 is still within range, but the highest we've ever seen prior to this was 5.5.)

Now I am starting to realize (from reading other posts too) that maybe Nplate doesn't just raise the platelets, it raises other areas too. (Even her hemoglobin was higher at 14.0 and they were really happy to see that up.)

Ann & Sandi...you're theory about the headaches being related to the high platelet count...I agree. The last time she had a high platelet count, she also had a headache, numbness & tingling, and was dizzy. She didn't have the vomiting last time, which is why I think maybe she did have a virus. I will update again when I take her to the dr on Tuesday. Have a great weekend!

Pauline,

Thats what they think the Nplate did to me, it was making everything except my platelets over produce. My white and red counts were through the roof, i have now been off the nplate for about 3 weeks and my red and white counts are finally going back to normal, but my platelets are still under 10, so the overproducing on the red and white cell counts could be a side effect of nplate that hasn't been documented yet.

I also think headaches could be attributed to high and low counts. My platelets have been under 10 for three weeks in a row and i am starting to get more servere headaches now and i noticed when they were really low in Nov last year, thats when i had all the trouble with the headaches then too. Hope she is feeling better soon, i know how debilitating headaches can be.

We took Caitlin to the clinic this morning and talked with the study coordinator and the hematologist more in depth about our current plan for Caitlin. The dr agrees with us that we need to do something different to where we are not getting such high counts. She has put in a call to the drug company asking for some leeway in treating Caitlin the way she feels like she needs to be treated rather than following some protocol. She thinks we need to do one of two things...1)allow Caitlin to drop down to see what her baseline is to see if she's having a late response to Rituximab, or 2) follow protocol where they do an injection if the falls below 200, but allow her to inject at a much reduced dose of .05 mcg and see if she has a more reasonable response. She was sent some information from Amgen about two other children having the same types of high responses after doing Rituximab. (I don't know if these two other children were on the drug before Rituximab like Caitlin.)

We talked more about splenectomy. The dr still agrees that this is an option, but wants to wait at this time to see if her body has had a late response to Rituximab. Doesn't want to take out her spleen if her body is heading towards remission.

Oh, and Caitlin's count today was 495, still high but better than 747 from last Thursday. Her wbc dropped down to her normal too from 9.0 to 3.6 so it is very likely that her vomiting was a result of some virus on top of the migraine that she had. We will see a neurologist sometime in the next 3 months. (They said it's hard to get in.) All in all, I feel like it was a good appointment and I feel like they are really working with me and really want to do what's best for Caitlin. (I had a in depth talk with Caitlin this morning before the appointment asking what SHE wants to do and she basically said she didn't care. She likes having the high counts because of no restrictions. She doesn't even care how bad she feels at times so she really has the "go with the flow" attitude and just deals with things in the moment and doesn't care that she was in so much pain last week!) I'm NOT that way!