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TOPIC: New Moderator

New Moderator 9 years 11 months ago #7603

  • 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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I just wanted to let all of you know that you have a new Moderator in the Parent's Section. His name is Jay, he has a child with ITP, and he has had a lot of experience supporting other parents. He will be a wonderful addition and resource to the Forum!

Jay - maybe you can give some details about your ITP experiences. We're all ears!

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Re:New Moderator 9 years 11 months ago #7604

  • snowgoose
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I had a moment of panic when I read the title of this thread! I thought you were saying goodbye, Sandi! So let me take this opportunity to say how much I value all the time and effort you put into your role as Moderator. Thank you so much! You are a voice of reason for many. :)

Welcome to Jay - It will be great to hear about your experiences with ITP. I am sure you will be a great support to many also. :cheer:

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Re:New Moderator 9 years 11 months ago #7608

  • jaycharness
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Hey there and thank you to Sandi for the nice warm welcome. I am taking over as the moderator and from what I understand, I have some impressive shoes to fill (thank you Sandi for all you have done).

I have been dealing with ITP as a parent for 6-years (my daughter was 3-1/2 when she was diagnosed and is now 9-1/2). When we were first diagnosed I was introduced to a family who had been dealing with it for a few years. They were AMAZING help with things that doctors just did not cover (like how awful it is as a parent to make treatment decisions for your child that may affect them long into adulthood). It made such as impact on me that I vowed to always be there for other parents as well. I have worked with support groups for 5 years and for the last year I have facilitated the teleconference group, through PDSA, for parents of kids with ITP (we do a phone call once every two months).

As for my experience with ITP, we have done it all. Unfortunately my daughter was a bleeder so 4-days after diagnosis we spent a week in the hospital as they tried to get her bleeding to stop. I do not share this to scare anyone, but rather so you understand that we have experienced numerous hospital stays, blood transfusions, winRho, IVIG, prednisone, solumedrol, decadron, rituximab and finally a splenectomy (the hardest decision my wife and I had to make). There are a few things to remember whenever you talk with someone who has dealt with this condition for a while:

1) All kids are different. You could give the same treatment to 10 kids on the same day and they may all have different reactions. One of the first things I was told about ITP is that if you ask 4 doctors what they think you will get 10 different opinions (our Hematologist said she had 2-1/2 of them). The point is that this condition is confusing and there are no real answers.

2) It does not matter whether you have been dealing with this for 6-months or 60 years. As a parent it is scary, frustrating, confusing and our only goal is to manage our child's care until their body gets things figured out. We all have our own stories and none or worse or better than any other. That is why peer support like this is so critical for families.

3) Do not be afraid to ask what you perceive to be "common" questions. Individually we have all dealt with our share of issues. Together, if we share our experiences, it is invaluable.

I am now the eyes and ears of this group so please do not hesitate to contact me through here. I am ALWAYS available for whatever you may need (as long as it is not medical advice).

Looking forward to helping out,

Jay

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Re:New Moderator 9 years 11 months ago #7612

  • athos45
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snowgoose wrote:

I had a moment of panic when I read the title of this thread! I thought you were saying goodbye, Sandi! So let me take this opportunity to say how much I value all the time and effort you put into your role as Moderator. Thank you so much! You are a voice of reason for many. :)

Welcome to Jay - It will be great to hear about your experiences with ITP. I am sure you will be a great support to many also. :cheer:

+1

Is this thread where we ask questions too?
My question:
When the time comes that my sons teeth fall of, which should happen anytime now, is there any thing i should do considering my son is also a bleeder of sorts?
Father of Tonio, 8 yrs old w Chronic ITP

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Re:New Moderator 9 years 11 months ago #7618

  • jaycharness
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In terms of teeth, all I can share is our personal experience. Ayla's teeth were also falling out in the height of low platelets. We had the same concern so we talked with both our Hematologists and Dentist. Luckily we never had any problems, but one bit of advice we got was to let it happen very naturally. If they come out when they are supposed to (without help), it can minimize the bleeding a little bit. Anyway, it is just one families experience but I would encourage those conversations.

JJ

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Re:New Moderator 9 years 11 months ago #7620

  • srunge
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Welcome Jay - My 13 year old daughter has been dealing with ITP for almost a year now. She responds to steroids, but vows never to take them again. Most recently she had Vincristine it worked for about 2 months, we just found out that she is back down again. Did the splenectomy work for your daughter? We plan not to do anything for awhile and see if her body can recover on it's own. She is very active and plays select soccer so it's extremely hard for her not to be able to play. If and when we do try another med it will be Rituxan.
Thanks,
Shauna

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Re:New Moderator 9 years 11 months ago #7621

  • jaycharness
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Shauna,

While the splenectomy did not "cure" it entirely, it has made it much more manageable. Before we did the surgery (2 years ago), the only thing that worked was high dose prednisone (40mg a day to a 7 year old). Keep in mind that she was a bleeder so we could not let her platelets stay low. You should also know that I vowed NEVER to do a splenectomy. While a lot of people say a spleen is not necessary, I figured if the good lord put it in, there must be a reason. In our case, we really did not have much choice because she was bleeding a lot, getting blood transfusions and nothing was working. It was a heart wrenching decision as a parent since, as soon as we did it, we were saddling her with issues for life (like having to go to the doctor with any fever over 101). Again, it came down to the philosophy that we had to do what was best in that moment and not be concerned about the future (in other words, we needed to get her to that future). It took about 6-months for us to see any kind of results. After that started happening we weened her off prednisone until she was completely off since last November (which was awesome). She still gets low (and goes up and down, up and down, etc), but we have not done any further treatments when she dips. We are trying to follow the philosophy of treating the symptoms (in our case the bleeding), and not the numbers. It is very difficult at times to let her walk around with low platelets, but it seems to be working for the time being.

Hope that helps,

JJ

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Re:New Moderator 9 years 11 months ago #7628

  • BethF
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Jay -
Welcome! I met you many years ago at the conference in Washington, DC. I was only there for the one day, but I think we sat next to each other at lunch. My son, Brady, is now 13 and has been dealing with ITP for 8-1/2 years. In fact, I think that your daughter and my son are both on the "Inside Stories" DVD!

Anyway - I remember you were a calm voice of reason and knowledge then, so it's wonderful to have you here.

Look forward to "talking" to you in the future -

Beth - mom to Brady (age 13, diagnosed 1/18/02)
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)

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Re:New Moderator 9 years 11 months ago #7631

  • jaycharness
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Beth,

It is great to hear from you. I actually just ran across some notes, with some names of parents of kids with ITP and you were on it. Unfortunately we are both still hear, a little older, a little wiser, still frustrated, but hanging in there as best we can. It is great to reconnect. You should try to come on our teleconference call in October. Your years of experience would be a huge help to some of these families just starting on the "journey".

Looking forward to talking with you soon.

JJ

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Re:New Moderator 9 years 11 months ago #7669

  • BethF
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Jay,
It has definitely been a long road. We're hoping that puberty will be kind to Brady and kick-start his system away from ITP. He definitely goes a long time between treatments now and we are able to live a mostly "normal" life. But still...

Thanks - I will try to remember to look into the teleconference call in October. That sounds like a great idea.

Talk to you soon,
Beth
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)

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Re:New Moderator 9 years 11 months ago #7782

  • softdesk
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Hi I am Frannys dad Ed Franny is 9.5 years old. :) I couldn't figure out why Fran was always showing new bruises on her limbs. Franny plays soccer year round at least this past year. I had returned home from being away in the hospital with Frannys sister Chelsea 18 years old who had suffered brain injury in a auto accident. Chelsea is doing very well and intergrating socially. While I was away Franny tripped and fell on pavement complaining of pain in her elbow two days before our arrival back home. The very next day was the start of summer soccer clinic for Franny. I thought this would be a good opportunity for me to observe how she would use her arm and determine if I would take her for x-rays. Fran did very well gaining compliments of the coach. At one point in scrimage play Franny took a hard kicked ball square on the bad elbow and forearm she had been complaining about. During rest Franny showed me her arm stating "look dad the outline of the balls threads left their marks on my arm". I figured now we wouldn't need to x-ray after all if it was broken she would be in great pain. After practice Franny reminded me that I had promised to take her to the doctor to look at her arm, so I did. While at the doctors I remembered to ask why he thought Franny would be bruising so often? The Doctor her pediatrician noted in her chart that 6 mos prior he had sent Franny to an internal specialist due to her complaints of abdominal pains. The internal doctor had ordered blood work including count which showed platelets at 165000. Now six months later the her Pediatrician orders another blood test right there within the medical facility. It was late in the day and I was suprised to see doctor stopping at the lab on his way home to see us.
He told us to come back first thing the next day because Frannys elbow was infact cracked and he wanted it to be casted and at the same time we would go over whatever the blood tests had to reveal. While watching TV that night I get a call from the medical group doctor on call and she tells me Frannys platelet count is critically low 5000 and proceedes to ask if infact Franny is conscious? lucid, bleeding etc.. and to bring her to the emergency room. At the emergency the doctor ran the same blood test again with the same results. We live on an island Maui its a small island and the population center is on a different island Honolulu a half hour plane ride away. The ER doctor his last name Mdee which makes him DR. Mdee which sounds funny tells me that he is on the phone with a pediatric hematologist a hundred miles away on a different island who wants to see my daughter as soon as possible. So I am thinking helicopter ride. Then Dr. Mdee say she's not bleeding so it is not enough of an emergency to run an air ambulance. Oh well I think that means I have to take her myself on a commercial airline the following morning it was midnight. Frannys count was 5000 already I learned she at risk of a bleed and I was put off to say the least.
The next day we arrived at Kapiolani Medical Center for Women and Children and we both were admitted. Franny was given 2 treatments of IVIG the next 2 days after the first her count went up to 16000 and 34000 after the second which she suffered greatly with head and abdominal pain. We were released on the third day. The hematologist orders were to, with the pediatrician assistance have blood test done each week. Franny went from 32000 to 5000 in three weeks. We went back to the hospital out patient facility Franny got pre treated with xxxxx and then one session of IVIG in combination with smaller portion of steroid which brought her count up to 39000 we again were released the same day with no side effects and a percription for Perednisone 20 two times every other day for two weeks. The first week she was at 88000 second week 40000 third week 16000 and tomorrow will be the fourth week and I expect we may have to be going back to clinic. It looks like the two weeks of Perednisone wasn't able to elevate or hold the count at least a that dose. Dr. has been telling me about Rituximab as an option since I first meet hinm 6 weeks ago. I really like Doctors approach. On our first visit to the hospital Doctor showed concern for the headaches Franny had during the second IVIG day and had a MRI of her
head done He also did a marrow biopsy and allowed me to witness and support our daughter through the procedure. The hospital is very accommodating family members and I find this a big plus particularly since I had just been through our other daughters brain injury recovery. I was encouraged to be roomed with her for the two weeks as she emerged from post traumatic amnesia. I am so happy to have found this website an I do intend on keeping up with what is the latest news concerning ITP and Treatement.

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Re:New Moderator 9 years 11 months ago #7791

  • isaacsmom
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Hi Jay!

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