PDA

View Full Version : I just intro'd myself but I also have concerns about my toddler....



Deemarie1223
08-23-2012, 08:50 AM
Hi, I just found these boards a few days ago and posted in the intro section. As I'm learning more and more, I'm starting to think the worst. I'm hoping I don't sound like a hypercondriac (sp) but I'm starting to worry for my 2 yr old. I know lupus in toddlers us rare but possible. She was born 4wks early(on purpose) and was always healthy. Then when she hit about 20mos all this stuff started happening....she's had her adnoids removed and now has her second set of tubes (semi-perm) in her ears. That's my least concern. She started spiking really high fevers for no apparent reason and still does (ie. Last nite was a lower of 100.8) she is also very photosensitive, her face turns very red quickly in the sun and she's constantly trying to shield herself from the sun, even in my minivan with somewhat tinted windows. She's also had pneumonia twice and bronchlioitis. She's been hospitalized overnite twice due to low oxygen and the other conditions. she has a history of coughs and deep shallow breathing. And most of all, she sometimes
screams out in pain, and I can't see anything wrong, she will thrash and not get up and walk. She also had some weakness of her left side which required physical therapy twice to get her crawling (9mos) and walking (18 mos). She is now 2yrs7mos and can't run as well as a 2 yr, she seems to tire easier, she has a hard time (but can) climb stairs, and she can not jump. I'm sure they will be referring her back to PT soon for these things, but I've always felt as if shes got a lot going on for it to be so many different things at once, but then I chalk it up to her being 4 wks early. Idk, like I said I don't want to sound like I'm pushing this on her, I do know there is a genetic component, my symptoms started in childhood, y mom and sis have fibro (for now, but my moms getting more opinions for lupus). I know none of you are docs, but I'd greatly appreciate your input. I don't want to call her doc and say " can you check her Ana levels and other bloods for an AI disease"-I feel like I'd be over reacting. Her Peds have been very stand offish lately with me anyway because I took my son off his ADHD meds for the summer and they didn't want too....anyways, sorry so long. I just felt the warmth of this board and felt I needed t ask SOMEONE. I hope you guys don't think I'm crazy, I'm just curious really...and wondering if I should bring it up to her docs.

Thanks again for reading!

SleepyInSeattle
08-23-2012, 03:05 PM
My goodness - that's a lot to deal with. There's nothing worse than seeing your child suffer!!!!

I am not a doctor, but I am a mom....

You do have a lot of autoimmune disease in the immediate family, so it doesn't sound like an over-reaction to watch your own child carefully for signs of an autoimmune illness. Of COURSE you worry - who wouldn't?! Maybe her problems are autoimmune-related, maybe not - that's for the docs to determine - but that issue and the issue of taking your son off his meds are two separate things. The doctor's job is not to judge your parenting decisions, it's to take care of your kids in the best possible way for each one of them. It would be totally inappropriate and unprofessional to "punish" you for one decision by refusing to hear concerns about your other child. If they feel that you are not cooperating with them or keeping them in the loop on your children's medical care, they should discuss that with you - but go ahead and have that discussion, then address the issue of your concerns about the autoimmune issues.

I have made some decisions that my daughter's doctor hasn't been crazy about, but in each case we discussed the decisions and came to a compromise. I do feel that having a good, honest working relationship with healthcare providers is really important - ESPECIALLY if there's something as complex as autoimmune disease going on.

I was concerned that my daughter had issues because they run in my family, too, and I was seeing what I thought might be livido reticularis on her skin...which can be a sign of APS (which my dad and I both have) or Raynaud's (which my mom and I both have). It can also be a massive risk of stroke if she were to ever go on birth control pills, so I wanted her tested at some point anyway....she's just 14 now, but the worry just became too great for me to put it off anymore. She'd had some joint pain, and my own Lupus and Sjogren's had flared up quite a bit in the last few years - anyway, I was just worried. So I took all that to her doc and explained....they ordered some blood tests and it was done. They didn't do a ton of work - just looked for the basics - but everything was negative (thank God) and I felt SOOOOO much better.

Now those blood tests are never conclusive, of course, so if she has symptoms later in life she certainly needs to pay attention to them - but at least I know she's probably in a lower-risk category.

And if she had tested positive, then we'd know we should do more testing and keep a close eye on her, and catch things early if they flared up.

Anyway - that's my story with my own family and kid. I hope it helps....and I hope everything works out for you guys and that you're worried for nothing. But I would really encourage you to have a good heart-to-heart with your kids' doctor and clear the air. It's so much better when you can work as a team. And if you can't, then maybe it's time to find them a new doc who you can work with!

Best of luck - let us know how things go!

magistramarla
08-23-2012, 10:01 PM
Darla,
I don't blame you for worrying. I have five children (all adults) and I worry about the autoimmune issues that some of them have.
Heather has always been healthy, but at 35, she's started to complain of some joint pain and stiffness.
Hillary has battled Polycystic Ovarian Syndrome, Celiac disease and lactose intolerance.
Tom is disgustingly healthy (Just got married today!)
Kayla has severe asthma and allergies, one working kidney, IBS and possible Celiac.
Meghan has mild asthma and allergies, endometriosis and a tendency toward having kidney stones.
Many of these things can be AI issues, and there are lots of members here with some of the same complaints. I keep my girls informed of what I learn and encourage them to insist on testing if anything comes up.

Something caught my attention when you described your little girl. When I was a little kid, I always had a funny walking gait and I could never run very far. I had a lousy sense of balance and couldn't roller or ice skate. Riding a bike was a huge challenge. I always had As in everything, but Cs in Phys. ed.
I could never bound up and down stairs, but had to hang onto the railing and go one step at a time, even as a teen.
I've often wondered if these were very early indications of what was to come.
Anyway, none of it kept me from having a successful life, and even though I always had those aggravating little symptoms, I wasn't dx'd with AI issues until I was forty -something.
So, I would say be a watchful Mom, but don't let it worry you too much unless she has some really noticeable problems.
Hugs,
Marla

steve.b
08-24-2012, 12:28 AM
my suggestion.
go to your family doctor.
tell him a brief family history.
then yout daughters history.
ask him if he reccommends taking it further.
and if so please start the referals.

as your family gp.... he is not stepping on any other specialist toes to start this off for you.


yes i also believe i have passed a few bad genes onto my children.

Saysusie
08-24-2012, 08:33 AM
I just wanted to drop in to say that I am sorry to hear that you daughter is going through so much. I agree with everyone else who has said that it is probably a good idea for you to ask your doctor to run any test that you feel will help identify your daughter's issues. It is important that treatment be started for whatever her medical issues may be. So, you are not being over sensitive, you are being a good mother who wants her child to be as well as possible.
Please keep us posted about her progress, test results, and treatments. We are here to help you every step of the way in any way that we can.

Peace and Blessings
Namaste
Saysusie