Concerned about kids

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Lurker
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Date Joined Jul 2008
Total Posts : 10
   Posted 7/15/2008 12:30 PM (GMT -7)   
I have four children and I consider them to be somewhat healthy. My oldest son is great no health problems except for asthma and it is under control. My youngest son was born with a major heart defect and had to have open heart surgery when he was 3 days old but he is great now. My middle two children are a little different. My daughter who is 6 started having leg pain when she was 13 months old. We went to the pediatrician and they couldn't find anything that would be causing pain so they decided to watch it for awhile. Within a month she was on Ibuprofen everyday just so she could sleep at night. We have been to many specialist including podiatrist, orthopedic, and rheumatologist and everyone says the same thing; I can't find a problem anywhere so it must be growing pains. My son that is 3 has the same problem and it also started when he was 13 months old. Everything has been identical, the pain, the medicine, and the lack of a diagnosis. There pain is in their joints not their muscle, it is mostly their knees and ankles. My daughter is now having kidney problems and they are not sure what is causing them yet either. She has recurrent blood and protein in her urine, they are still running tests to diagnose that. The nephrologist really wanted us to try and get them off the medicine and they have been off of it for 2.5 weeks. The kids are doing ok but now instead of leg pain at night we have leg pain and arm pain all day and night. We rotate ice, heat and massage on their knees, ankles, elbows and wrists. Both of these children also have mild excema like rashes and have had them for years. They are mostly on their arms but this summer my daughter has had one come up on her face. It is underneath her right eye and after being in the sun turns red and stays that way for a few days. A couple of weeks ago I found out that my husbands grandmother had Lupus, none of the specialist have been told this because I didn't know. I have been doing a lot of reading about it but I wanted the opinion of someone who deals with it personally. Am I crazy to be fighting the doctors to keep looking? Am I asking for there to be something wrong with my children? Do you know if they even diagnose Lupus in children that young? I would greatly appreciate anyones opinions, sometimes I feel like I am jumping to conclusions and I should just give up and accept their answers, but I can't.

AlwaysRosie
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Date Joined Jan 2005
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   Posted 7/15/2008 2:54 PM (GMT -7)   
((((((((( Lurker ))))))))))))

OH NO! I'm so sorry your precious babes are dealing with pain at such a young age.

You are NOT wrong. You are mothering your babies!! Yes! keep searching for answers.

If you are near an outstanding hospital like Rainbow Babies and Children's or Cleveland Clinic, Mayo, etc. they may have a greater interest in figuring things out. A pediatric rheumatologist might be a good start.

Have the doctors checked blood work for ANA ??

There are some really young Lupus patients, unfortunately. There was a mom hear a few weeks back with a very young child who had been dx'd with lupus.

If you can travel to get to a good facility, and get a diagnoses (whatever it is) then your local doctors will take it more seriously and treat it. They may be totally unaware of the possibility of lupus in an infant or a young child. Alternatively, they may be watching very closely and not wanting to alarm you. Sometimes they KNOW what it is and they wait until there is some treatment needed. I think they should TELL us everything and let US decide when to worry.

There are strange rashes with lupus too. Also, there is another arthritis called Psoriatic Arthritis, but I don't know much about it or if children can be affected.

So sorry you are dealing with all of this instead of just being able to enjoy your little ones.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lurker
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 7/15/2008 6:34 PM (GMT -7)   
We were sent to a pediatric rheumatologist in Atlanta about a year ago and they did bloodwork before we went. I asked my pediatrician the other day if they did the test that they would do when suspecting Lupus and she said that they did. I didn't ask specifically about the ANA test because I had not read about it until after that but she told me that they did the test that they would do for Lupus and connective tissue disorders. Also we are in AL but we are willing to travel if we can get an appt. somewhere. I have thought about the pediatric diagnostic center at the Mayo clinic in Rochester but we haven't tried to get an appt. yet. There is also a new pediatric rheumatologist closer to us and I asked my ped. to schedule us an appt. there but I haven't heard back yet.

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 7/15/2008 8:35 PM (GMT -7)   
Lurker,

See if you can get all the copies of all the blood work done so far. You should ask for a copy each time there is blood work. Keep a file just for the blood work and test results. Take this folder with you to each appointment. Eventually there may be a trend to some of the blood work that will help. But doctors are horible at sharing our records with each other. They say they will send it along and it often does not get sent. Just a thought.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 7/15/2008 8:36 PM (GMT -7)   
BTW:

You might be interested in one or more of the links at the end of my signature. "Lupus Criteria (4 of 11)" tells how lupus is diagnosed.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 7/16/2008 3:46 PM (GMT -7)   

I don't have any answers but I just wanted to say that I am sorry your kids are going thru this. I can't imagine having to deal with so much pain at such a young age.

Hugs..


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 7/16/2008 3:57 PM (GMT -7)   
Might not be Lupus. I have 4 kids also. My oldest and youngest were spared for now. My 15 yr old has Crohn's , JRA and Interstitial Lung disease. Guess what his first symptom was? Yep!!! Leg pain. He was dx with night terrors at a year because he couldnt verbalize why he was screaming very well. Finally between 2 and 3 he began to scream he had pain. He was dx with JRA at 7 and continued to become very very ill from 7-10. By the time he was 11 he was in serious trouble and we received a diagnosis. He is still very sick despite every treatment known to mankind to control his auto immune disease process. My 12 year old is now being treated for Lupus and started her disease symptoms at 12. My mother had Lupus . I have Lupus and Crohn's. If you have a gut feeling, listen and follow it. In our family my kids lives have depended on my intuition.

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 7/16/2008 4:21 PM (GMT -7)   
Oh my gosh Chaya!!! So frightening!! I'm so sorry for all of you who have children with these horrible problems.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lurker
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 7/17/2008 4:27 AM (GMT -7)   
We had a terrible day yesterday and it continued all the way through the night. My 3 yr. old son started saying his legs were hurting at 6:00 am and I couldn't get the pain to stop no matter what I did. I finally took him to my mom's and put him in her hot tub (low heat for summer) and he was better for awhile. He ate and took a nap and we went to church, he said he was hurting again when I picked him up from class. We got hime to go to sleep but then he was up at 11:00 and then again at 2:30 for an hour or more each time. The last time he woke up I could barely stand it, he was writhing around the floor in pain and screaming as loud as he could. I am so tired of watching my kids hurt. I love our pediatrician but for some reason right now I feel like she has given up on us. We normally email back and forth all the time and she hasn't answered my last two and I really need to take them to a rheumy and see if they can help. If I can't give them the medicine that makes the pain go away because it is going to damage their kidneys then someone has got to help us find a way to manage this pain. Being a mom is never expected to be easy but this is killing me.

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 7/17/2008 5:24 AM (GMT -7)   
((((((((( Lurker ))))))))))

I know this is the wrong time of year to suggest this. But we had a topic during the winter about pain keeping us awake. We were sharing some ideas and the hot topic was using electric blankets or grain bags. This is not a great idea if you live in an area that is hot this time of year. But if you don't . . . or if you have air conditioning, the heat can be very helpful.

A grain bag is made by taking a man's tube sock and filling it 1/2 to 3/4 full with dry beans, whole grain feed corn or rice. I like the feed corn but its not easily available to some. Fold the top down about 1/2 inch and sew it. Sew a second time. Now you can pop it in the microwave. Try two minutes and then you will know if you might need to leave it in a bit longer.

The grain bag is really soothing to the painful areas. You can make several of the bags . . . everyone who tries it will want a couple. They are so comforting. We call it "a hug in a bag".

I'm sorry I don't have more help to share. I know some like to ly in their bathtub with epsom salts. This is supposed to help detox muscles.

The "Lupus Resources" link at the end of my signature has a post in it with Tips for New Members and another one on how to prepare for a Dr. visit.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/17/2008 6:19 AM (GMT -7)   
Oh, I didn't realize you hadn't been seeing a rheumy for your children. It definitely sounds like the next "right" thing to do -- in some heavily populated areas, you may even be able to find a pediatric rheumy.

As a child, I too had leg pain that they could never identify -- but that was a small town in another time. I found great comfort in knowing that my mother believed me, even if the doctors couldn't figure anything out. Of course, my pain was nothing compared to what your children are experiencing.

I agree with Rosie, the grain bags are very helpful, as are electric blankets set on low. I use both methods year-round (turn AC to 66 in summer)...even if it doesn't always help with pain, it is a great comfort item.

I will be sending good thoughts your way, and I hope you are able to find some helpful medical support SOON.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/17/2008 10:40 AM (GMT -7)   
Hi Lurker and welcome. I'm so sorry your children are going through this. There is nothing worse than seeing your children suffer and not know what to do. I have been going through a similar situation with my son for the past 3-4 years. We do have a wonderful pediatrician who has never given up, but we are having a hard time finding a pediatric rheumy anywhere near us. We saw one for a while that was a two hour trip, but he moved a while ago.

My son's (now 10yrs old) problems started about 3 1/2 years ago when he got mono and he never seemed to get over it. His feet and ankles would hurt so bad he'd cry and he was severely fatigued. HIs pediatrician was the one who ran an ANA because of my health history and it came back positive along with a high ESR (a test that shows inflammation). He also regularly shows high levels of strep in his body. The pediatric rheumy we saw said he thought it was JRA and then said, maybe it's not and then said it's some kind of arthritis but wasn't sure what kind. After that pediatric rheumy left we tried another one that was 3 hours away, but she had a fellowship doctor working with her who was awful and didn't listen and didn't believe anything my husband and I said about our son. Now with the help of our pediatrician we are looking at maybe making a long drive to Chicago to see a highly recommended pediatric rheumy. My son now takes celebrex and is on long term antibiotics because he also had rheumatic fever. Things are more manageable with these meds, but he's still very stiff and deals with pain daily. An amazing book that I'd like to recommend is called "It's not Just Growing Pains" by Dr. Lehman. I learned SO much from reading the book. I actually e-mailed Dr. Lehman after reading the book and he's the one who recommended the pediatric rheumy in Chicago.

I don't want to make my post too long, but feel free to e-mail me if you want to - it's available in my profile or you can click the envelope icon under my username.


Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Lurker
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 7/17/2008 11:29 AM (GMT -7)   
Lynnwood- We have taken them to a pediatric rheumy that was about 2.5 hours from us. He said that he thinks it is just growing pains and he didn't see any need for us to come back. We now have one that is just over an hour from us that I am trying to get an appointment with.

Hippimom- I have seen that book on amazon and wondered if it was worth buying. I may just have to get now.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/17/2008 2:14 PM (GMT -7)   
Lurker said...
Lynnwood- We have taken them to a pediatric rheumy that was about 2.5 hours from us. He said that he thinks it is just growing pains and he didn't see any need for us to come back.
Lurker, one of the main things I got from the book I mentioned is that if a child is having pain upon waking or anytime during the day then it is NOT growing pains.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Lurker
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 7/17/2008 3:40 PM (GMT -7)   
I actually just took my oldest son to the pediatrician for something else, he is not one of my children with joint pain. While I was there I jumped at the opportunity to talk to the pediatrician, she is not our normal doctor but at this point I will talk to anyone who has ears. I told her a little about what we are going through and what we have always been told and she said she couldn't believe that anyone would tell us it was growing pains when it started at 13 months old. She told me how to get the office to go ahead and schedule us an appointment with the ped. rheumys and I plan on working on that asap. She also told me that she has had one patient in all her years that had leg pains that young and he ended up having a connective tissue disorder and she was 90% sure that my children have one too. I would never want my children to have a disease but I am so excited that someone actually listened and believed me today. It made my terrible day much better. :)

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/17/2008 6:32 PM (GMT -7)   
That's great! Nothing quite like a doctor really listening to make things feel much better!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Audrey Ann
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Date Joined Jul 2005
Total Posts : 815
   Posted 7/17/2008 8:21 PM (GMT -7)   
Lurker,

I am so happy to read that you may have finally found the support you need! Goos luck and keep us posted! I have two children (now grown and in college) and I work with children . One thing I never do is assume they are not experiencing pain when they tell me they hurt somewhere. I am so happy you are trusting your instincts and listening to your children. Good for you! How fortunate they are to have a mom like you!
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


aussie jo
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/18/2008 1:49 PM (GMT -7)   
Lurker,

I'm sorry that your children are suffering so much. My 17yr old daughter has been sick for the last 2 years and we were lucky enough to be referred to an immunologist who ran the 'right' tests. She has been diagnosed with Sjogren's but he is still hesitant to confirm SLE (but deep down I feel it is)

He also advised that we look at food intolerances, my husband has a food intolerance problem - if you are sensitive to this you can have reactions to normal things like fruit and vegies as well as the more common milk, wheat etc. I was wondering if you had looked into that. You said that your children's symptoms started at about 13 mths of age and that is usually when their diets are changing quite dramatically.

They have a lot of information on the subject and some helpful hints. We have changed many things in my families diet and it does help.

Most of all good luck, I know it is so worrying when your children are unwell.

Best wishes from Sydney, Australia.
Jo

**************
Post edited to remove link

Post Edited By Moderator (AlwaysRosie) : 7/18/2008 8:48:50 PM (GMT-6)


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 7/18/2008 7:53 PM (GMT -7)   
Welcome to the forum Aussie Jo,

Sorry . . I had to remove the link.  You are welcome to contact the forum administrator for permission to post your link. His email address is Admin@HealingWell.com .

This is a great place to share and learn and we are happy you found us. I hope you'll take a few minutes to review the forum rules: http://www.healingwell.com/community/default.aspx?f=46&m=106997

Thanks for the "heads up" about food intolerance. Some subtle changes can really make a big difference.

Blessings!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


aussie jo
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/19/2008 1:56 PM (GMT -7)   
Sorry Alwaysrosie, I must admit I hadn't read all the rules and didn't realise I I couldn't post the link. I'll ask permission today as the information may be of help.
Jo

Lurker
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 7/21/2008 6:25 AM (GMT -7)   
I just wanted to let you guys know that I got an email from our regular pediatrician over the weekend and she is scheduling our appt. with the ped. rheumy now. Hopefully I will get a call this week about when it is.
 
I have done a lot of reading on Lupus but there are still many things I don't understand. Could my kids have Lupus if it doesn't bother them to be out in the sun? My daughter has a small rash under her eye that turns red when we are out in the sun but thats it, neither of them have more pain or anything like that after a day in the sun.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/21/2008 7:22 PM (GMT -7)   
Hi Lurker,

The sun doesn't bother all of us. But it does bother most of us. Those of us with sun rashes actually get an early warning. When I see my malar rash raging, I know what's coming . . . an increase in other symptoms. For me, the rash comes first and then a flare. If hubby sees the extra rosy cheeks, he lets me know and I take it easy. We've avoided a lot of trouble that way.

For me . . . the affects of the sun are cumulative. I have to keep track of my sun exposure over any given week. We each seem to find our own limits. I actually have to watch for reflective sun too. Even if I use an umbrella or sit in the shade, I have to avoid reflection from water, sand, etc. Some can't even tolerate fluorescent lighting.

Sometimes, we have to look backward. If she ends up in pain, look back and try to see what might have triggered the symptoms. Sun, heat, over doing, not enough rest, stress. There isn't always a trigger. Sometimes we just get sick.

I hope she fools us all and gets better!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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