My Son Tyler has been dealing with ITP for 3 Years

Hello all;
Those of you who were on the "old" site may remember my son Tyler and myself.
He was diagnosed with ITP in Feb. 2007 when he was 13 years old.
I was 9 months pregnant with my 6th child at his time of diagnosis.
So it was a rough road for all of us the 1st year after diagnosis.
Well, here we are 3 years later and still dealing with ITP.
Tyler's been dealing with it all quite heroically, I say with Pride
The only means of treatment he's had have been IVIG's. Other than his veins being hidden (like his Mom's) he deals well with the IVIG's.
His ped wanted him to try prednisone at one point but Tyler opted not to.
So about a year ago we opted for the Watch and Wait with option to do IVIG when needed.
When he shows symptoms of having really low counts, such as bleeding gums, lots of bruising,frequent nosebleeds,etc. he goes in for an IVIG, which is about every 2 months.
But now I am facing a new worry, he is 16 now and has his Driving Learners Permit :silly: So now, the mom in me is very nervous about him being behind the wheel and being involved in an accident
I know I can't prohibit him from daily life but that doesn't change the Mom in me :huh:
So that is basically how it has been for us these past few years.
Of course we are always praying for a remission , not only for Tyler but for all the kids out there with ITP
So I hope those that we used to know from the old site, I hope that your children are no longer dealing with ITP. And if they are still dealing with it, may they soon gain remission:)
Blessings to all:)
Karen & Tyler

Karen,
I do remember you. Julianne turned 13 in Feb. 2007, and had been diagnosed in December '06. Both our teens were struggling with their new issue. I'm sorry to hear Tyler is still dealing with ITP on a regular basis. Julianne is now in remission, but we still get counts about every four months. We get a "six months pass," but then something happens to make us think a count is needed, and we rush in. Sometimes it drops a bit, but it's been mostly 100 and higher for the last two years. She had a strange health scare last year, with an infection that led to a debilitating arthritis and hives that took months to clear, but there's no indication it was in any way related to ITP. Still, we had some weird labs for a while, and followed up with a rheumatologist. She's fine now, and the newest autoimmune labs were all good. Still, I hover and worry, and we avoided church a lot during flu season, as the sanctuary started filling with sniffle, sneeze, and cough sounds, and I became anxious. She recently had strep, with some new bruising and nosebleeds, and I just knew the count was down. I am thankful to say I was wrong.

Even though IVIG is more invasive, riskier, and more hassle, Julianne also preferred it to steroids. (I am just finishing a course of decadron for a poison ivy disaster, and I can see why she hated steroids.) She only had it three times (twice for very low counts, and once for a nosebleed in a sudden drop on the heels of a failed decadron pulse experiment). We mostly did watch and wait, and limited activities as needed. It was a dreadful time for all of us, and ITP still worries me.

Julianne has resumed sports, and I sicken every time she gets bumped. She goes to a small sweet school where her teachers, staff, friends, and boyfriend all know her history, and are protective, for which I've been very thankful. The driving thing has really been a challenge. I don't let her go alone often, but I am having to learn to let her be a normal teen. If her counts were running low, I'd insist she wear her medical alert bracelet, but she rarely wears it these days. If Tyler doesn't have one, you probably should get one, and a wallet card. I'd keep the explanation simple, like "ITP = low platelets, bleed risk." Many ER and EMS folks don't even know what ITP is.

We really don't know what caused Julianne's remission. It just happened. (We made a move 20 miles away to a more rural area, but I really don't think that did it.) I hope Tyler catches the same break soon. There really is hope for that. Stay in touch here, please, as so many of the new parents are as frightened as we were, and an experienced word can really comfort them. I remember how helpful all that was to me when I first got here.
Norma

Thanks so much for your reply Norma:)
I am so happy to hear of Julianne's remission, that is absolutely wonderful news
Every time Tyler goes for blood work ,I am praying that his count will have miraculously gone to "normal,safe" levels but alas that hasn't happened yet, anyway:)
I never give up praying and hoping that one day Tyler will also reach remission

The power of positive thinking is much better than being negative

Have you been in contact with any of the others who were on here back then?
I remember a young boy named Brady, just wondering if he's still battling ITP.
I know there are others too, I just can't recall the names of the children.

Tyler does have a medical alert necklet which I insist he wears every day to school and when he does start driving he'll have to have it on as well as the card in his wallet.

No matter if they're still battling ITP or if they're in Remission, we are Mothers and Mothers worry

I remember my mother telling me this when I was married with my 1st couple of kids
and how true those words are!!!

All the best to Julianne with her remission, I hope all stays well for her and for you
Take Care
Karen

juliannsmom,
Hello, my daughter was diagnosed with ITP right before her 13th birthday as well after a virus and vaccinations. And because she has a positive ANA they are all convinced it is going to turn into Lupus. So far she has no other symptoms of Lupus and they cannot technically give her a diagnosis. Did you ever go through anything similar? How long did it take for your daughters remission? My daughter had 1 IVIG and had a severe reaction to it, so no more. She has been on steroids for over 3 months and went up to 140k but has fallen to 50k with the taper. (she can't handle anymore steroids ) She has had it since November 09. Any advice would be wonderful!
Thanks, so much!
Emmy's mom

Hi, Emmysmom,
Sorry for the long post. Hope it helps. The worst of ITP for us was really the first twelve months. Not only did we have all the usual work and family stuff going on all the time, but, as I told a friend, it's like I was told by life, "Oh -- and Mom? There's a bear in the living room that wants to eat your child. While you're juggling all that other stuff, be sure not to take your eyes off the bear. And be sure to keep everything normal, so your kid doesn't really know the bear's there and how scary it is." More than a toe over the edge of insanity at times.

IVIG: My daughter's first IVIG treatment was right after diagnosis, for a count under 20 initially when we didn't yet know how she'd handle lows. Had I known then that she could handle lows, we might have watched and waited, but her hematologists were not sure she should leave the clinic with that count. She went straight over to the hospital. It brought on a headache so severe she had to go back to the hospital to rule out a head bleed. (From my work, I knew the classic signs of an intracranial hemorrhage, and she at least needed an assessment.) From folks on this forum, I learned that not only should she be premedicated with tylenol and benadryl, but it needs to be kept up every few hours throughout and after the infusion for a about a day, whether she has a problem or not. Additionally, good hydration before, during, and after for a couple days, with the tylenol and benadryl, has held off those side effects for her second (for a count of 3) and third (for a nosebleed) treatments with IVIG. We are pleased it gives her a reliable rescue treatment. Still, it's a plasma product, even if screened and treated; it's an invasive IV with attendant risks; an infusion with attendant reaction risks; a night in the hospital; expensive; and we don't want to use it if we don't have to.

Decadron: We tried a decadron taper in November 07, about eleven months into ITP, trying to see if the once a month treatment could give her a more normal existence the rest of each month. She got a good boost, but then dropped to 15, which she had tolerated well before. The drop was so sudden, however, she didn't handle it well, and had a nonstop nosebleed that ended with her sedated and having her sinuses packed in the ER, and admitted for IVIG. We didn't try decadron again.

Remission/scares/autoimmune stuff: Over the next few months, her counts were safe, but not normal. She had a nosebleed about fifteen months into ITP that caused us to get a count. It was over 100 spontaneously for the first time, and we were ecstatic. About two weeks later, however, she became quite ill with sore throat, then cough, and developed hives and arthritis. She took three months to fully recover from that, and a battery of testing never really gave us the answer, except it was an apparent infection that led to a reactive arthritis. That apparent overreaction of her immune system led to rheumatology testing and workups. (She's never had a positive ANA, and except while she was sick, the SED rate and all the arthritis and other autoimmune testing has always been normal. We do those things once a year, and last week's were good.) Her count was high during last year's illness, even after she was off steroids. It fell over the next few months, and was safe but not normal. Last November, 35 months after diagnosis, she had the first spontaneous count of 150. Last week, she was at 244. We have no explanation for the remission, but hope it is forever.

Strategies: If your daughter can maintain counts over 25 without bleeding, and if you and her doc are okay with that, I wouldn't want her to take steroids, either. As for quality of life, we had to help Julianne find safer alternatives to her beloved volleyball. She played mild tennis when over 30, but was sidelined at lower counts. She is the normal teen, a nutritional trainwreck if left to her own devices. We encourage a multivitamin, some extra D (ladies need it for the lurking autoimmune stuff, anyway), and some extra C. I found the C helped lessen bruising and petechiae early on, but I don't think it helped the count. I urge her to stay as healthy as possible in all other aspects, so she can better withstand an ITP problem if needed. (You may also want to consider suspending or extending her cycles with oral contraceptives if she has a problem with that aspect of ITP. Most doctors seem to agree a girl can get by on one or two periods a year without harming her reproductive health, and most of us would love to be on that schedule.) There is a mother named Julie on the old forum, with a daughter named Chelsea, who was going through the potential lupus scare a while back. She's a dear, and would be glad to help you, I am sure. I don't know if she's made it to the new forum, but you may be able to get Sandi to contact her through the info she has and see if she'd get in touch with you. Last I heard, Chelsea was well, but they had really been through the wringer for a while.

I pray you will soon be able to say, "Back when Emmy was dealing with ITP, ... ."
Norma

Hi, Karen and Tyler -
I don't know if my son, Brady, is the one you were referring to, but I do remember you and thought I would respond to say "hi!" We are also still dealing with ITP. Brady is 13 and was diagnosed 8 years ago. He received IVIG a lot also - it generally lasted a couple of months, like Tyler. We switched back to WinRho (well, it's WinRho-like, called Rhophylac) a couple years ago and he is getting very sustained periods of time without treatment now. This past December, Brady's count went up to 90k on its own and we thought maybe we were seeing the end of ITP, but he dropped again and we treated him in March. Prior to that, he went 15 months without treatment, so I guess we can't complain. I can relate to what you said about always hoping for a "miracle." Every time we get Brady's CBC now (which, thankfully, isn't very often) I really expect it to be "normal" - I think that makes me a little nutty, since it has been 8 years!

My older son , Matthew, will have his full license in two weeks and I'm a nervous wreck, even without the ITP, so I feel your pain! It is such a scary thing to think about him taking the car all by himself, even though he's a great driver, etc. I guess I will do a lot of praying and worrying.

Lots of luck with everything and it's nice to hear a Tyler update. We continue to hope for and expect a complete recovery for Brady. I hope for the same for Tyler and all the kids on this site.

Happy Mothers Day!

Beth - mom to Brady (age 13, diagnosed 1/18/02)

Norma, Thanks so much all of the above information, it's nice to hear how other people deal with ITP, my daughter is so active and plays elite soccer, the hardest part of all of this is limiting her activities
Emmy's mom