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Back in the hospital with a count of 5!!

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14 years 7 months ago #12138 by BabyChaece09
Back in the hospital with a count of 5!! was created by BabyChaece09
Yesterday we had bleeding gums start and the petechiae spread like crazy!! Even all in his mouth which I did not know could happen. His levels were at 5. A week ago they were 14. Makes me sad that they can come down so fast. Chaece was given IVIG this morning and we are now back at home to let his body do its job. Just hopefully it will work fast! I am tired of seeing my little guy all beaten up.

Does anyone know if the little blood blisters hurt in the mouth. He has a few and one really big nasty one in the inside of his lip. Of course he can not tell me if they hurt and the doctors said that they really didnt know. So does anyone else know?

Mother of Maebree 4 and Chaece 23 months.
1/27 13,000
1/31 14,000
2/7 5,000
2/17 410,000 :)
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14 years 7 months ago #12139 by Kaylas mom
Replied by Kaylas mom on topic Re: Back in the hospital with a count of 5!!
I'm not sure if they hurt but a Popsicle may help numb it up if he is uncomfortable, Is this his first IVIG? If so you can expect a pretty bad headache afterwards.
Hope all goes well for you and him today.
Thinking lots of platelets!!!!
Krissy

Krissy
Mom to Kayla 10 dx 2/2009 with a count of 1,000
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14 years 7 months ago #12141 by BabyChaece09
Replied by BabyChaece09 on topic Re: Back in the hospital with a count of 5!!
Yes it was our first The nurses did not really tell us of any side effects and on the way home he started throwing up.. alot... and boy did it not smell good. I frantically pulled over, called hematology and they had said it was a common side effect and also a headache may happen as well. He is in the play room with his sister right now so I guess he is okay so far. He really missed he so he is probably playing even with a headache!

Mother of Maebree 4 and Chaece 23 months.
1/27 13,000
1/31 14,000
2/7 5,000
2/17 410,000 :)
  • 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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14 years 7 months ago #12145 by Sandi
That may seem like a fast drop, but with ITP, they can drop from the hundreds to single digits in a few days. Dropping from 14 to 5 is not a large drop. Counts can change that much in an hour.

I hope your little guy is doing better soon! He's adorable!
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14 years 7 months ago #12146 by jaycharness
Replied by jaycharness on topic Re: Back in the hospital with a count of 5!!
As for the drop, I agree with Sandi. Our daughter was at 503,000 platelets on January 11th of this year, and by the 18th she was down to 5,000 (welcome to the wacky and frustrating world of ITP). As far as the mouth sores go, I can speak to that as well. Our daughter is 9-1/2 and was diagnosed 6 years ago. When she gets low, one of the first signs we get is a mouth full of blood blisters (quarter and dime size). They are on her cheeks, on her lips and all over. Sometimes they will bleed at night and she will wake up with dried blood all over her mouth. After seeing your post I asked her (as an update) how they felt. She said that unfortunately they do hurt. They hurt especially when they are on her cheeks and they rub up against her teeth. When she has a lot, she mostly wants to eat soup, milkshakes, or anything soft. I am not sure his history, but I know they started really bad when she was first diagnosed because she was a thumb sucker. So, the sucking motion in her mouth brought out the blood blisters when she was low. She does not suck her thumb anymore, but I know that sometimes, when she sleeps, she still does that same sucking motion (possibly a small residual habit). Anyway, I hope that helps, let me know if you have any further questions.
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14 years 7 months ago #12162 by Rhiannon
Replied by Rhiannon on topic Re: Back in the hospital with a count of 5!!
as far as blood blisters in the mouth go they are not sore, or at least I don't find them sore:P The tongue does kind of find the bigger ones and he will be aware of them probably. they have not a taste as such but they feel different to smooth skin. You can get a mouth wash so that he don't brush his teeth whilst on low platelets... Day to day at home I use Listerine anyways and helps the mouth feel really fresh and I would stick with that given the choice.
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14 years 7 months ago #12164 by BabyChaece09
Replied by BabyChaece09 on topic Re: Back in the hospital with a count of 5!!
Brush teeth? My son is addicted to brushing his teeth. What does this have to do with low platelets? Does it just irritate the blisters?

Mother of Maebree 4 and Chaece 23 months.
1/27 13,000
1/31 14,000
2/7 5,000
2/17 410,000 :)
14 years 7 months ago #12182 by
Oh my! He's just the cutest little guy! It's never easy seeing your child go through this, but must be even harder with one so young, especially when they can't really tell you what they're feeling. That's great that he's already addicted to brushing his teeth. Enjoy it while you can, because it probably won't always be the case, lol! My daughter never really got the blisters in her mouth or any gum bleeding, even with really low counts. But, I've heard many say that they can hurt ( I am thinking maybe a bit like a canker sore?).

I just took my kids to a new dentist, as our old one retired. This dentist recommended a toothpaste that contains a few very low potency homeopathic ingredients, and is supposed to be really good for preventing or reversing gum disease, bleeding gums, mouth sores, sensitive teeth, etc.
He suggested brushing with it, and then rubbing a very thin layer along the gum line. This is the first homeopathic toothpaste that I've tried, that I like the taste of it--it's really quite pleasant, and it leaves your mouth refreshed. My husband has gingivitis, and has seen huge improvement in the month since he started using this.

It is a bit pricey for toothpaste, but not sure if that's just my dentist or not. I bet if you do a search, you could find it online for a bit cheaper. The remedies it contains would all be beneficial to the overall health of the mouth, soothing, as well as very healing to the mouth blisters and bleeding. Here are the ingredients, as well, I have listed just some of the symptoms that can be helped with each remedy:

HOMEOPATHIC TOOTHPASTE

Orarex Maximum Care Formula (MCF)
Active Ingredients (In a base of lactose)

Homeopathic Ingredients:

3X Carbo Vegetabilis (Vegetable Charcoal).......thrush, gums that are detached from teeth and bleed easily, gum boils, vesicles and pustules, gum hemorrhage: when brushing teeth, when sucking on them, from touch, easily, oozing of blood, indented gums or tongue, Putrid or offensive breath; Pain: while chewing, from salt, touch, biting, burning, raw, smarting, as if burnt, as if excoriated;
Swelling of gums; Ulcers: bleeding, deep, painful, burning, purple.
Teeth; Sensitive to: air, chewing, cold, touch

3X Plantago Major (Plantain)...... Thrush, Gum boils; Easy hemorrhage of gums; offensive or putrid breath; gum ulcers.
Teeth: Sensitive to: air, cold air, chewing, to touch; grinding;
Caries, rapid or premature in children

3X Calendula Officinalis (Marigold)......Profuse hemorrhage of gums, esp after extraction; Inflammation, infection and swelling of salivary glands. Teeth: Complaints after extraction, pain after a filling, Tartar build up.

3X Staphysagria (Stavesacre)......Gum Abscess, thrush; gums detached from teeth; gum boils, vesicles of gums or tongue; Hemorrhage of gums: when brushing teeth, easy; Inflammation of tongue or salivary glands; Bitter, slimy mucus; Putrid, offensive breath; Pain: burning, raw, sore bruised, like a splinter; swelling glands and gums; ulcers on tongue
Teeth: Caries, decay, as soon as they appear, premature in children, rapid decay, crumbling, difficult dentition, loose sensation, pain from cold air, from biting teeth together, from brushing, after chewing; Sensitive when chewing, to cold, to cold drinks, to touch


Other Ingredients: Water, Sorbitol, Hydrated Silica, Glycerin, Tetrasodium Pyrophosphate, Tetrapotassium Pyrophosphate, Sodium Lauryl Sulfate, Cellulose Gum, PEG-6, Natural Flavor, Gaultheria, Titanium Dioxide, Sodium Saccharin, Methylparaben, Propylparaben.
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14 years 7 months ago #12387 by jrosenfe
Replied by jrosenfe on topic Re: Back in the hospital with a count of 5!!
Yes there are lots of side effects to each of the treatments. We now give Charlotte, benedryl, tylenol, zofran and some steriod to deal with all the issues. It is not fun but figuring out how they will do is part of it and figuring out how to minimize the side effects works wonders on treatment day! I hope things have turned up. Stay positive and remember that he chances of getting past this are high at his age.
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14 years 7 months ago #12952 by DanniiWatty
Replied by DanniiWatty on topic Re: Back in the hospital with a count of 5!!
Hi There,
My son gets split lips and blood blisters on his tongue and the inside of his mouth and he is only 16 months old. The blisters defininatley put him off eating but i found they disappeared almost as quick as they arrived (almost like a 24 hour side effect). The nurses on the childrens ward gave my son Calpol to help with the discomfort of the blisters. My sons platlet count was down to 2 when he started getting the blisters, his level is now 6 and he hasn't had any blisters for a few days.
I hope your little chap improves real soon,
x
Dannii
Moderators: jaycharness