Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

3 yr old diagnosed this week (Nov. 2012) 10 years 1 week ago #29304

  • kquigs76
  • Offline
  • Posts: 5
  • Thank you received: 0
Hi everyone!

My 3 year old son was just diagnosed with ITP last week and treated with IVIG. His platelets were down to 1000, and because of bleeding issues (bruising, petichiae, mouth, nose, vomiting blood, rectum, etc.), they treated immediately at a children's hospital. He almost had platelet transfusion, but we were able to avoid that by a narrow margin. Needless to say, it was a very scary experience.

We were admitted for 24 hours for the IVIG then discharged as platelets were up to 36,000. Right after we got home the side effects started-he started complaining of chest pain, his "hair hurting", and stomach ache. Then the vomiting started and went all night. It was awful. The next morning we were admitted right back to the hospital for dehydration. So, another iv-you get the picture. But, platelets were up to 116,000, so we felt good about that.

So, here we are 10 days after IVIG. His platelets at the 1 wk blood draw were the same-116,000. I was hoping for something withing normal range, but I feel like I don't know what to expect. I would just love to know more of the progression of what to expect for platelet levels over the next few weeks. Is the IVIG still supposed to be working and for how long? What have your experiences been after IVIG?

I still don't feel like he is quite normal either. Looking pale, seems tired, and acting up, which is what he does when he is sick. Weird complaints like his feet are hurting, which now that I think about it he was complaining of right before we found out about this last week.

I have read many of your stories during this past week and have already benefitted so much from your experiences! Looking forward to connecting with other parents in the same situation.
Kristi-Mom of Brayden (3) dx with ITP 11/2012, and Blake (1)

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 10 years 1 week ago #29309

  • Brandi
  • Offline
  • Posts: 96
  • Thank you received: 17
Hi -
My 5 year old son was diagnosed in January 2012. We've only ever treated with IVIG. In the beginning he needed it every 4 - 5 weeks. Counts would shoot up... but then over 4 weeks they'd go right back down again. His last treatment was in July 2012. His counts are still low, in the 30's, but not low enough for treatment.


Now our cousin, he had ITP a few years ago when he was around 6 yrs old. He had one ivig treatment and his platelets never dropped again. So it can go either way. ITP really is a roller coaster ride. :(

Good luck with everything!
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
The following user(s) said Thank You: kquigs76

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 10 years 1 week ago #29312

  • kquigs76
  • Offline
  • Posts: 5
  • Thank you received: 0
Hi Brandi,

Thanks for sharing about your son. May I ask how high his platelets initially went up after the IVIG treatments? Did he have the horrible side effects, too? It definitely feels like a roller coaster ride already.

Kristi
Kristi-Mom of Brayden (3) dx with ITP 11/2012, and Blake (1)

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 10 years 1 week ago #29317

  • BethF
  • Offline
  • Posts: 126
  • Thank you received: 8
Hi, Kristi -

Sorry you are dealing with this and I hope that your son's ITP journey is a short one. My son, Brady, was diagnosed when he was 5 years old (he will be 16 in a couple weeks)and he received IVIG many times earlier on. He always had the bad side effects -headache, nausea, vomiting. If your son has to have IVIG again, it really helps to make sure he is very well hydrated before the treatment, during and after. It also helps to have the hospital pretreat with Tylenol and Benadryl. IVIG worked really well for Brady. I think a "typical" path after IVIG is that the platelets will peak at around day 7. That's generally what we would find with Brady. He would go up to around 300k and then would slowly and steadily drop back down and would get approx. 8 weeks out of the treatment. We tended to take a two or three week break from counts after getting the initial high count from IVIG so I'm not sure how quickly his counts would drop but by a month or so after IVIG his counts would be down to around 50k. After a while the IVIG stopped working as well and the side effects got worse so we stopped using it.

If he continues generally just not feeling right I would call the doctor and talk to someone just to make sure it isn't something to be concerned about. In the beginning there are so many new things to deal with that it's good to get your worries alleviated by the doctor.

It seems like a good sign that your son's counts have not dropped for a week so I'd take comfort in that. Good luck and I hope he's feeling better soon.
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)
The following user(s) said Thank You: kquigs76

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 10 years 1 week ago #29332

  • Brandi
  • Offline
  • Posts: 96
  • Thank you received: 17
The first time Ryan had IVIG, he threw up a day later. Just once. That was the only time he's really had any of the side effects.

He usually got to the 200,000's a week after treatment, and then would slowly decline after that.
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
The following user(s) said Thank You: kquigs76

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 10 years 1 week ago #29338

  • Lori1220
  • Offline
  • Posts: 24
  • Thank you received: 4
My daughter is now 14yrs old and has had ITP going on 2 years. IVIG is the only thing that has really worked for her. Tried prednisone, winrho, & rituximab. Her counts are usually 5K - 10K (if not treated). Problem is, she has bleeding issues when her counts fall below 20K. So needless to say, she has had to have IVIG fairly often. IVIG raises her count to around 100K but it drops back down within 4-5 weeks. She too, has N/V/migraine type headache post IVIG infusions. We have learned from experience to request the IVIG be given very slowly(over 12hrs) and to make sure she gets tylenol and benadryl not just as premeds but scheduled during the infusion as well. Our pediatric hem/onc is also good to send us home with compazine and oxycodone (which we use sparingly, but is really helps her). ** On a good note, my daughter is very resilient as most kids are and she has now started playing some non contact sports- golf and swimming. Her life is moving forward in spite of ITP. I am very proud of her as she was very much into contact sport- volleyball and fastpitch.
The following user(s) said Thank You: kquigs76

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 10 years 2 days ago #29379

  • kquigs76
  • Offline
  • Posts: 5
  • Thank you received: 0
Brayden's count went to 71,000 (from 116,000) at his 2 week post ivig blood draw. I noticed a couple new bruises that day and now 2 days later, bruises are actually gone. I haven't talked to the hematologist yet because of Thanksgiving weekend, but I'm wondering what the next step is. How low do they usually let it drop at this point before starting steroids? I'm just hoping they treat before it gets to emergency status again. And at what level do you usually start to notice bruising?
Kristi-Mom of Brayden (3) dx with ITP 11/2012, and Blake (1)

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 10 years 2 days ago #29381

  • alisonp
  • Offline
  • Posts: 1052
  • Thank you received: 119
I only see ITP type bruises on my son when he gets to about 10K, but everyone is different. Drs generally don't treat until it gets to be an "emergency" because the treatments are usually horrible. If your son isn't bruising and if he hasn't got any petechiae rash, then his count is probably in a safe range.
The following user(s) said Thank You: kquigs76

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 10 years 2 days ago #29394

  • Brandi
  • Offline
  • Posts: 96
  • Thank you received: 17
Ryan only gets ivig (or any treatment) when he falls below 20,000.
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
The following user(s) said Thank You: kquigs76

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 9 years 11 months ago #29461

  • kquigs76
  • Offline
  • Posts: 5
  • Thank you received: 0
Today he was at 95 K 3 weeks after ivig. Does that mean that it will keep going up now since it dipped down to 71 last week and went up a little? Or is this all just part of the roller coaster ride?
Kristi-Mom of Brayden (3) dx with ITP 11/2012, and Blake (1)

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 9 years 11 months ago #29472

  • Brandi
  • Offline
  • Posts: 96
  • Thank you received: 17
There's no telling. We've gone up and down... back up and back down... so on. But here's hoping your lil guy keeps going up!
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
The following user(s) said Thank You: kquigs76

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 9 years 10 months ago #30403

  • kquigs76
  • Offline
  • Posts: 5
  • Thank you received: 0
It has been about 2 months since Brayden's diagnosis, and we had a normal platelet count in mid December, and that was the last count we had done. I was wondering if at this point, should we still be getting counts done once a month or we just stop until or unless symptoms reappear? Just not sure what the normal follow-up process is.

We kept him out of childcare at church and away from playgroups, etc. the last couple months until I really felt confident enough that his immune system could handle another illness, and sure enough as soon as we re-entered the outside world this week, he got sick right away. He just seems to pick up everything this year, and I wonder if that is all related to ITP or if his immune system is just worn down. This is his third time with dehydration this year! Can anyone relate to the constant sickness?

He hasn't had bruising or petichiae at all like he did when he was first diagnosed, but I notice when he starts to seem worn out and crabby that he will get some bruising on his legs. Nothing I would be super concerned about, but he definitely never had that before ITP. Then it goes away in a few days and comes back again.

I just feel like I know something is still wrong and can't seem to put my finger on it.

Thanks for listening! I can't tell you how much it means to me that you take the time to read my posts.
Kristi-Mom of Brayden (3) dx with ITP 11/2012, and Blake (1)

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 9 years 10 months ago #30408

  • alisonp
  • Offline
  • Posts: 1052
  • Thank you received: 119
If you are worrying about it, why not get a count the next time you see the bruises? Hopefully it will put your mind at rest :)

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 9 years 2 months ago #36364

  • runnershirl
  • Offline
  • Posts: 17
  • Thank you received: 0
First, I want to say thanks for posting this and thanks to all who answered, because this has been almost an identical story to ours. I'm curious what other treatments ahve been done, etc., since this post.

In response to the inquiry posted, I would like to point out that my daughter was diagnosed 3 weeks before her 3rd birthday (March, 2013) and her original count upon diagnosis was 4000! The next 4 days her labs went from 4k, 15k, 5k and then 16k, and her hemoglobin started to drop so we proceeded with IVIG. Like the poster here, my daughter complained of chest pain, leg pain, "bubbles in her belly", and would become extremely needy and irritable after that original IVIG. During the last 6 months, her platelets would drop almost every 3-4 weeks, which I would notice by bruising or petechiae. She was unique in that her original diagnosis of 4k only had one spot of petechiae, so I can't rely on those little red spots to tip me off. But, this time, last week, she started to get alot of little spots (almost hard to see, but still I DID see) everywhere..this was 3 days after a nasal flu vaccine her ped approved safe for her. I've since read that vaccines may provoke platelets to lower.

I have a question too...this last IVIG was one week ago today. Daughter's labs went from 9k last week to 269k with IVIG. Petechia faded, nosebleed stopped, but she's extremely irritable, always complains of her hair hurting, and as of tongiht, I noticed that her groin lymph node was tender to her when I touched her at hte waist to put her pull up on, and upon fuerther review, noticed the skin is a little pink in that area. Is taht concerning to anyone? Feel free to share other things that I should look into that have learned from trial and error.

Please Log in or Create an account to join the conversation.

3 yr old diagnosed this week (Nov. 2012) 9 years 2 months ago #36374

  • Lori1220
  • Offline
  • Posts: 24
  • Thank you received: 4
Maybe she says her hair is hurting after IVIG because it can cause severe migraine-like headaches. My daughter is 15 and has had ITP for 2 1/2 years. She has severe headaches from IVIG, headaches lead to nausea/vomiting. Probably need to have a doc look at a swollen lymph node, especially if redness. Could be sign of infection going on somewhere.

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
Moderators: jaycharness

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo