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THEmps2mom
April 6th, 2004, 09:35 AM
Kraig is scheduled for surgery in a couple of weeks, so part of his pre-op work up included labs and a visit to Hematology yesterday. Once again his PT and PTT are off, I'm really worried about that with the type of surgery he is having. He's been tested for von Willebrands and Hemophilia before (both came back negative), but they drew labs and are running those tests again.

Do any of your kids have bleeding issues? Any advice or information you can share with me?

It's really hard to find a vein on Kraig, Children's is usually pretty good and they get him on the first stick. Not yesterday, it took 3 tries and the vein in his hand blew. Poor guy, he's gonna have a nasty bruise on his little hand. He's such a good boy though, he wasn't happy with her, but he was pretty patient and let her do her work.

Laura Brodie
April 6th, 2004, 09:54 AM
Kris, we can only ever get a vein in Will's foot - I avoid all blood tests etc like the plague-he fights like mad! His skin is so thick they now sedate him for all types of tests. He needs one to test for 'angioendema' but we are waiting for his next scheduled op.as I don't want him to go through more tests than are nessacary.
I hope all goes well for Kraig love Laura

Tressia
April 6th, 2004, 10:00 AM
Hey Chris,

You may remember my son, Cameron, had a bleeding issue a few years ago and still has to be watched for it now. He actually had treatments for this that's called IVig treatment. Cameorn didn't like them and they gave him real bad headaches. He was finally dx with chronic ITP, the meaning is " they don't know what is causes it". They treat it almost like Hemophilia (sp?)

If Cameron's plateletd got below 20,000 they would treat. Normal is between 140,000 and 400,000. He has actually had surgery when it was around 80,000 and he did OK. He ranges around 80,000 to all the way up to 380,000 now. We still have to watch him. No aspirin of any kind, only allow tylenol. Aspirin thins the blood and this is not what you want. I am happy to answer any questions you may have.

Tressia

THEmps2mom
April 6th, 2004, 10:56 AM
Laura, I'm sorry Will has such a hard time with blood draws. Kraig used to fight, kick and scream all the way through, he's much calmer now.

Tressia, I remember now. I knew I had talked to someone whose child had similiar problems with bleeding as Kraig. We have stopped Motrin, which is a bummer, it seems to kick the pain much better than Tylenol for Kraig. But we just stopped Motrin last week, as instructed, no Motrin 2 weeks prior and 2 weeks following the surgery. The biggest problems with bleeding came after Kraig's adenoidectomy (10 years ago), this was all before the MPS dx and way before he was taking Motrin routinely for pain management.

Tressia, do you have Cameron's levels checked frequently to know whether you should treat him? Are the treatments still IVIg? Has ERT had a postivie impact on Cameron's bleeding issues?

Tressia
April 6th, 2004, 11:35 AM
Kris,

Yes, we have them checked about every 8 weeks. They used to be checked about every 2 weeks until they went up above 100,000. The only IVig treatment he had in 3 years was last July when we had Cameron port-a-cath put in. This was just to be safe. If his platelet count starts getting below 50,000 we get worried and have them checked more often and have him stop any activities that could cause an internal bleed, especially to the head area. If they drop to 20,000 or below he is treated with IVig because he could start to hemorriage (sp) in the brain.

The ERT treatment has helped his platelet levels. They still go up and down but at a much higher saver level. He used to have IVig treatments almost every 2-4 weeks. This was not fun.

We give Cameron Tylenol for Arthritis to help with his joint and leg pain.

Laura Brodie
April 6th, 2004, 03:02 PM
Hemophila is also on the x chromosome isn't it? As our kids have Hunters do you think thats relevant or there is any link?? Laura

THEmps2mom
April 6th, 2004, 03:43 PM
Hi Laura, yes, Hemophilia is x-linked http://my.webmd.com/hw/health_guide_atoz/hw191400.asp?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348}

Tressia, that's good to hear that Camerons platelets have been better since ERT. Kraig has only been checked prior to any surgery. At times he is in the normal range and at times his PTT is prolonged. I guess it's hurry up and wait for these test results to come back.



Jess . . . . why isn't my link working??? Never mind, it is working.

rickys1mom
April 7th, 2004, 01:49 AM
The only time we had a bleeding problem with Ricky was when he had adenoid tissue removed for a second time. He was in recovery and I noticed a problem when they let me in to sit with him. He'd be fine and then every time he'd move, he'd have bleeding from his nose. After much insistence that he didn't do this with his other ENT surgeries, they finally paged the dr who agreed there was a problem and put him under again to put in a nasal pack to control the bleeding. What was supposed to be an outpatient procedure ended up with a nerveracking overnight stay in the hospital. Robb had been laid off and we had an individual insurance policy that wouldn't cover any of this as it was coonsidered a preexisting condition. I hope Kraig's test and surgery go well Kris. Keep us posted.
Anita

Sharon Cochenour
April 8th, 2004, 01:05 AM
Kris,
Sorry to hear that Kraig had a hard time with the blood draw. That was what finally made me agree to a port for Andrew. We would go through all the staff for a needlestick and that had him, and me histerical. Now it is just one stick. Andrew has been bruising and bleeding from his port almost every treatment. We meet with Barbara after one treatment for dinner, and by the time we got to the resturant, Andrew had bled through the bandage and down the front of his shirt. My pediatrician checks his counts often, espeacially his PT,PTT and Platlets.
I don't know if it part of the Hunters. Andrew will be scheduled for his surgery next week. I am really worried about him. Today I took him for a CT Scan of his chest and he was screaming during the scan, he got really purple and diaporetic and they had to stop. After he calmed down we tried again and he continued to scream so much that his entire face is covered in little purple dots where the blood vessels were breaking. :( They called the doctor from radialogy so see if she wanted him sedated, and she said no because of the Hunters, so we just stopped. Poor little guy is now covered in what looks like purple chicken poxs. Don't know how long they will last. That is not the first time this has happened. If he laughs, cries or sneezes to hard, he also gets them. They seem to fade in a few days.
Any way, sorry for rambling on. Let us know what they find out about Kraig. I will be in the same boat behind you with Andrew.
Sharon

momtoty
April 8th, 2004, 02:40 PM
Kris,
I am sorry to hear about Kraigs recent issues with the blood draws and bleeding. :cry: I sure hope it gets straightened out soon. I am praying for him. :angel:

Sharon,
I am sorry to hear about Andrews CT scan nightmare, and his port acting up. That poor little guy, :ohno he just can't catch a break. I think about him all the time, and pray for both of you. Give him big hugs from me and Ty :group

Love,
Kim

Laura Brodie
April 8th, 2004, 04:39 PM
Sharon, I've almost given up on any scans /tests now because Will gets so histerical as soon as we go near a doctor/nurse.He cannot now be sedated due to the facial swelling so it really a waste of time us trying anything unless its so important we can't avoid it! Will and I both get the purple dots on our skin-him when he's screaming- :( me during pregnancy and after a long winded cough that strained muscles as well! The good news is most of Will's disapeared but my old skin never recovered! Love Laura :frown: :frown:

Sheila George
April 8th, 2004, 04:56 PM
Kris and Sharon,

Sorry to hear you kiddos are having to go through such ordeals right now. All this testing and procedures are so hard on our kids. Give them both hugs from me and Shelby.