3 yr old daughter's 2nd IVIG since diagnosis in March was on 9/3. Platelets didn't get as high this time, but seemed to stabilize in the 100's since then, or appearing so. Hema did recommend that we monitor every 2 weeks because after 2nd IVIG, she had (confirmed) black tarry stools, but no confirmation of why. During this though her labs stayed 100's, though taking a slight dip from 169 to 111 in 2 weeks, but I'm learning it's still okay. About a month ago, I discovered the poor kid had a gaping hole in her molar! She's only 3. And then another molar, etc. A follow up to dentist confrimed at least 4 and surgery was recommended, but due to ITP in a hospital environment. I went thru the first few weeks of feeling guilty of how I could have allowed my 3 year-old to have cavities...how is this even possible? We brush her teeth and take care like any caring aware parent. I sought 2nd opinion from Encology Dentist as referred by her Hematologist, who advised me that it's likely as a result of all the meds she's had to take in such a short time and their effects on her teeth. This is 1st I'd heard of IVIG and other meds affecting her teeth. Anyone heard of that? (Anyone heard of a PEDIATRIC hematologic dentist or equivalent, because the dr is awesome but doesn't have alot of the answers I NEED as they pertain to kids!)
We followed up with panoramic imaging yesterday and the treatment plan is to extract 4 molars, (?!?!), perform pulpotomy on another, perform cavities on 4 others and seal others. I'm floored. Oh, not to mention, medical insurance won't cover...Who knows about dental, but we have to come cash out of packet before out child who's screaming in pain every night can have this urgent dental surgery scheduled for Monday.
I can't help but to wonder, if this so common that meds affect kids teeth: 1) why don't drs advise you to undergo more frequent dental exams? 2) ha sanyone else experienced it; 3) what else are they not telling me that IVIG's and other meds which they've administered (and not provided me with exact details on); and 4) what happens to parents who must quit job to tend to children who are in and out of the hospital? What's next? No mentions of potential of renal failure except for the few posts here or there...Why shoudl a bulletin board of other parents the best resource for information?! That is really bothersome to me!
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
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The only medication that can affect the teeth is Prednisone, and that damage will not occur overnight. I don't know why they told you that, but IVIG will not affect the teeth. Prednisone can affect calcium levels and cause bone loss and that is pretty common knowledge. I don't think there is any such thing as a hematologic dentist; most people can coordinate dental surgeries pretty easily by having counts done prior to surgery and treating if necessary, just as you are being told to do. I had four wisdom teeth removed in an office with counts of 100k.
I know you are having a rough time right now and I wish I had some helpful information. Unfortunately, there are many working parents with children that have serious illnesses. Other than hiring someone to fill in for you, I don't have any answers. I can tell you that this will get easier. Most children are not hospitalized with low counts unless they are actively bleeding, so having a Hemo who is experienced with ITP should help with that. Things will slow down. Hang in there.
The unspoken influence in my personal situation is that my hubby is also disabled with a chronic cluster migraine condition, and as such, that leaves me to tend to this alone...at a time, i just started a new job in a very demanding career witout these outside medical situations. Then, we've moved, I've been hospitalized for chest pains too, and other conditions, and essentially had to deal with unpacking, packing, moving, working, making up time from missed work, tending to house,m home and life...not htat many others don't, but it's just all hit me at once! Your words of comfort give me home for hte day this is all behind us.
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