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TOPIC: 21 Month Son just diagnosed

21 Month Son just diagnosed 9 years 1 month ago #9934

  • lshughes24
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My son was just diagnosed about a week ago, and probably like most parents I freaked out and got completely worried. This site is really nice to read through and gives a lot of relief to see what other peoples experiences are. The first blood draw they took his levels were at 11, they didnt do anything except tell me to "patiently wait" two days later it dropped to 9, they still saw no reason to do treatment because he wasnt bleeding. Three days after that his levels did go up to 33 but the next day he started trowing up. It has me a little concerned because hes been randomly throwing up even before they diagnosed him, has anyone else had this problem? Is it common? When I talked to the Dr. he said to let it pass but its going to make his platelet count go down again. He wont get his blood drawn again until tomorrow so I guess I just have to wait and see.

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Re:21 Month Son just diagnosed 9 years 1 month ago #9950

  • 28lorelei
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Ishuges, what kind of doctor was this? Your son should see a hematologist or something, not the primary doctor.
Also, I would be worried too! 9000 is pretty low. Like I said, go see a hematologist.
Hope this gets sorted out.

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Re:21 Month Son just diagnosed 9 years 1 month ago #9954

  • Angel85
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I have never had problems with vomiting cause of the low platelets, I'd ask to get that checked further with his doctor, or get a second opinion from someone else if your current doctor is uwilling to do anything. He may of picked up a bug that he can't seem to fully shake off or could be a side effect if he is on any type of medication he is currently on (i'm aware the ITP is not being treated at the moment, but any other medication he is on or has been on recently for any type of other illness he may of recently had)
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:21 Month Son just diagnosed 9 years 1 month ago #9963

  • lili
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I'm an adult with ITP and I think that 33 is a nice safe count. All the treatments are so horrible that I certainly wouldn't treat at that count. However, if I were 9K and vomiting, it would be another story. Vomiting can be pretty violent, so I'd be worried if his counts were really low, although I think that kids do better with ITP than older people.

I think at this point I'd just watch him for signs that his counts are falling and make sure to get a count fairly soon to see where they are. Most kids with ITP are acute (80%), so I sure hope he falls into that category and gets a remission soon.

Lily

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Re:21 Month Son just diagnosed 9 years 1 month ago #9964

  • eklein
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I tend to get migraines when my counts are dropping. In some people that causes vomiting.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re:21 Month Son just diagnosed 9 years 1 month ago #9965

  • april
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When you say, 'random vomiting', can you describe it further? I mean, does it appear to be associated with any other symptoms, like headache, fever, stomach cramps or diarrhea?
Is he in daycare or preschool where he might be exposed to a lot of stomach bugs? At his age, it's fairly common for those to be spread quite easily. Do any other family members have similar gastro-intestinal upsets? Or, could it be caused from motion sickness in the car? Most cases of stomach flus should resolve themselves within a relatively short time, though, of just a few days. I am just wondering if that's what the doctors suspect it is. Or, does this seem to be a more chronic issue?

Has he been given any sort of medication to treat the vomiting or to treat some other condition like a cough or teething? You might be surprised to find that many of the very common OTC medicines that people regularly give to their children, have been shown to cause thrombocytopenia in sensitive patients. Also, many doctor prescribed medications such as many kinds of antibiotics can cause these drops in platelets. Quite a few parents feel that their child's ITP was triggered after a vaccine. Both the MMR and the H1N1 flu shot are suspected of triggering ITP in some children.
It may be that your doctors suspect that one of these may have been the cause. There are many cases of drug-induced thrombocytopenia, and these will often resolve themselves, once the drug is discontinued. If the medication was frequently given, it may take more time, and sometimes other measures may need to be taken to get rid of this effect. Once a child has ITP, I have found that even when their platelets come back up, they can be quickly dropped again, by using one of these medications.

Before my daughter got ITP, she would have frequent bouts where she would vomit for days at a time, off and on throughout the day. She'd sometimes get a fever that would come and go with it, too, but no other symptoms. Other times, it would just be the vomiting. She would vomit a lot of bile, could not keep anything down at all. I remember she used to draw pages and pages of food, because she was so hungry, yet couldn't eat! No one could ever figure out what was wrong with her, or how to treat it. But, other than that, she was a robust child, and would seem just fine the rest of the time. When she got the ITP, the vomiting became one of her main symptoms, and she would always have it as a side effect to treatments, which would cause very violent vomiting in her. But, the doctors said, no, the vomiting didn't have anything to do with the ITP, that I'd have to take her to an internist to figure that one out. Well, they were wrong. The vomiting had a LOT to do with her ITP! Our bodies are not fragmented parts, and doctors need to start looking at the whole patient. "Sorry, it's not my department!" just doesn't fly with me, and doesn't seem to make any sense to me. Your child is more than his platelet count! For my daughter, I took her to my homeopath (I was a homeopathic student at the time.), and he really paid close attention to this symptom, as well as all the other things that made her case unique. After one dose of a remedy that he chose for her, the vomiting stopped, even when she had the IVIG treatments. It also brought her platelets up to 144k in 10 days. Ultimately, this remedy did not hold, and a couple of months later i found a remedy that was closely related, that brought her count from 11k to 411k in 4 days. It not only resolved the platelets, but benifited her in so many other ways. One, was that she's never since had that kind of vomiting like that. So, I would say, take note of that, as well as any other more unusual things about your son, and you may find it can be useful information down the road. And, actually, it may be that your doctors are simply more conservative. Especially in some other countries, they do more of a watch and wait, if there are no bleeding symptoms. The treatments often seem to be worse than the disorder, and actually, ITP is one of the side effects of many of the most common ones (like Prednisone, as well as the common pre-treatment drugs of Benadryl and Tylenol). So, perhaps for some, the treatments are actually keeping the platelets from coming up. Young children are more apt to have acute cases, and many times their little immune systems can overcome it on their own, without any treatment. read on the Parent's forum, and you may find other parents who are doing watch and wait. None of the medical treatments are without risk, and would be particularly difficult for such a young child. So, I am guessing that is probably why your doctors haven't yet given him any treatments.

I wish the best for you and your son,
April



Here's a partial list of common OTC drugs that can lower the platelets.

Aspirin and any other medicine containing salicylates, such as Pepto-Bismol or
Alka Seltzer
should be avoided.
Reference: rileychildrenshospital.com/resources/documents/Hem_Onc_ITP.pdf

Aspirin and non-steroidal, anti-inflammatory medications, such as
aspirin, Ibuprofen, Motrin, Advil, naproxen, naprosyn, and Aleve
are medications that may interfere with platelet function and may cause bleeding.
Reference: www.childrenshospital.org/az/Site1138/mainpageS1138P0.html

Benadryl (Diphenhydramine) side effects for the
Hematologic System: Hemolytic anemia, thrombocytopenia, agranulocytosis.
Reference: www.drugs.com/sfx/diphenhydramine-side-effects.html
(Scroll down to Diphenhydramine Side Effects for the Professional)

Tylenol (acetaminophen)--Acute thrombocytopenia caused by sensitivity to the glucuronide conjugate of acetaminophen—a good article to read.
Reference: bloodjournal.hematologylibrary.org/cgi/content/full/109/8/3608

Coricidin D (acetaminophen/chlorpheniramine/phenylpropanolamine is a combination pain reliever/fever reducer/antihistamine and decongestant,
used to treat nasal congestion; itchy, watery eyes; itchy throat; sneezing; headache; fever; and other symptoms associated with allergies, hay fever, and the common cold.)
Hematologic side effects of chlorpheniramine have included bone marrow suppression, thrombocytopenia, and aplastic anemia.
Reference: www.drugs.com/sfx/coricidin-side-effects.html

Coricidin D HBP
(same as above but with an added High Blood Pressure medicine)
Parents—be aware! It has become one of the most abused OTC drugs for teens in the 13-19 age range, as they can easily buy them at the drugstore, or find them in their parent’s medicine cabinet. It is an inexpensive and legal drug, easily available, so one of the fastest growing drug problems. Kids are taking 10-15 of them at a time, some have died from them, but they can cause many side effects, including liver damage and thrombocytopenia. Abusers report a heightened sense of perceptual awareness, altered time perception and visual hallucinations, much like LSD.
Street names are “Skittles” (they resemble the red Skittles candy),” Red Dragons”, “Red Devils”, “Red D’s”, “C’s”, “Cory (Cori)”, “CCC” and “TripleC”.

Robitussin Night Time Cough and Cold
(a cough suppressant, expectorant and decongestant, used to treat stuffy nose, sinus congestion, cough, and chest congestion caused by the common cold or flu.)

Hematologic side effects have included hemolytic anemia, agranulocytosis, and thrombocytopenia.
Reference: www.drugs.com/sfx/robitussin-night-time-cough-cold-side-effects.html

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Re:21 Month Son just diagnosed 9 years 1 month ago #9967

  • lshughes24
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Well took him to get his count today and its at 20, obviously they told me its going to fluxuate for awhile. He doesnt take any other medications or anything. And with the random vomiting it happens in the middle of the night usually and then during the day hes just fine. He would normally do it like once a week and then he did it for three nights in a row along with some yellow diarrhea. then it went away for about 7 days and then the morning he woke up doing it again, is when I discovered he had bad bruising on his legs that werent there before he went to bed, Thats the day he was diagnosed with having ITP. I had told the dr about it and he said that it would pass. I have been hearing to go and see a hematoligist, but i had also heard that since most kids are acute and come out of it fine that it wasnt necessary. Its all so confusing and frustrating. Thank you for your guys input and knowledge on the whole thing. He doesnt attend any daycare or anything, I'm a stay at home mom, so I dont know where these mysterious "bugs" are coming from. He hasnt recieved the flu vaccine and all his other vaccines were back in August. So I just dont know.

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Re:21 Month Son just diagnosed 9 years 1 month ago #9973

  • Sandi
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Kids can get bugs even if they are not in day care (Mall, grocery store, etc.) Yellow or green diarrhea usually indicates infection. It could be that his counts dropped due to infection. That is common and most people never know it because it comes and goes so fast - acute ITP.

It wouldn't hurt to get the opinion of a hematologist if it goes on much longer.

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Re:21 Month Son just diagnosed 9 years 1 month ago #10641

  • menminime
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I am goign through the same thing with my baby. She was 15 months when she got diagnosed with ITP 2 weeks ago today. LIKE you said I am freaking out, trying to read up and see everything. When i started seeing signs (at that time i didn't know it was signs)she was throwing up. I think that since thanksgving time she has had four or five days of throwing up. I thought it was just the flu but then she does it again

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Re:21 Month Son just diagnosed 9 years 1 month ago #10644

  • menminime
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"She'd sometimes get a fever that would come and go with it,"

My 16 month old daughter now just recently got diagnosed with ITP two weeks ago today. She has already been hospilized twice and been to the er 4 times in two weeks. She just got discharged Sunday and the next day yesterday she had a "fever" for no reason. Her referreal just came through and she was able to get an appointment with her Ped Hemo-Onco doctor tomorrow. I am so scared and worried. what things should i be looking for them to do and what can they answer and do for us? Thanks

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Re:21 Month Son just diagnosed 9 years 1 month ago #10657

  • Sandi
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Sometimes the treatments (such as IVIG) can cause vomiting and fevers. Does that occur after the treatments?

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Re:21 Month Son just diagnosed 9 years 1 month ago #10678

  • menminime
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She has only thrown up once after the IVIG treatment the other times they were unrelated. She just had flu like symptoms and it lasted less than 12 each time.

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Re:21 Month Son just diagnosed 9 years 1 month ago #10684

  • jaycharness
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Unfortunately all kids react to the treatments differently (in side affects and effectiveness of raising the platelets). I know that headaches are often a bad problem with IVIG (they are for my daughter). One thing our doctor does is pre medicate her with some benadryl (to avoid an allergic reaction) and tylenol. Also, she gets something called Lasiks after the treatment (it helps to restore fluids, etc. I will say that in our case, the side affects are not as bad now as they were when she first started getting the treatment (I think your body gets used to it some what). Keep on using the board. Our hope for you is that this ends up being acute (meaning they have it for less than a year), so it will be a short journey for you.

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Re: 21 Month Son just diagnosed 8 years 11 months ago #11745

  • BabyChaece09
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My son was dx a couple of days ago with a count of 13. We have had crazy symptoms since about October and a few days ago I noticed some pretty abnormal bruising on his legs, took him in and was immediately referred to Texas Childrens hematologists. We actually were there today and the doctors were wonderful. Right now my son is having bad allergies. He has had a runny nose, cough, etc. for months now and last night he started throwing up in the middle of the night. The doctor ordered steroid treatments for him but told us to wait a few days to start them and let his other symptoms clear up. He said if the bleeding looks to be getting better over the next 24 to 48 hours to wait on the steroids and try to see if the count comes back on its own. Steroids can have unpleasant side effects of their own.

I don't understand why your doc doesnt refer you to a hemotologist? They are the ones who can tell you for sure what to do. The doctors at Tx Childrens were amazing and really helped us out a lot!
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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