View Full Version : It is official. I am worried

12-05-2010, 11:23 AM
As many of you know I have been concerned about my daughter because she has had problems with her joints for about 8 years. She went to a rhuemy when she was 6 who said her knee was out of place and told her to wear a brace when exercising. It began to get worse last year and I took her back to her regular doctor (who is WONDERFUL) and he gave her some strong meds to take to help with her knees. It didn't help and it has now progressed from just the knees to the hips (which pop out of place), lower back and neck.

Last week she told me that she was getting pains in her hands. It wasn't until she was talking about it yesterday that I figured out she was talking about the "pins and needle" feeling that many of us get. That concerned me even more but I was still not officially worrying.

This morning I began to worry. We had a cold front move in last night and I, of course, am feeling it today. My daughter, being a normal teen, slept late. When she woke up she came out and I did the usual "Good morning honey. How are you this morning". Her response hit me at my core. "I don't feel good mom. I hurt". I asked where she hurt and she said "All over. My knees, my neck, my back, all of my joints and even my muscles. I just hurt so bad". NOT what I wanted to hear.

Her appointment with the rhuemy is Thurs morning at Texas Children's in Houston. He is the head of the Rhuemy department there. On the one hand I want to find out what is wrong so they can make her better but on the other hand I can't imagine having to watch my daughter going through what I go through. I can handle it. I don't know if I can handle having to watch my baby like this.

Please cross your fingers for her. Let this doctor figure out what is going on so they can fix her before it is too late.

12-05-2010, 11:54 AM
Mari they will find the answer; kept on trying it's out there. And you are right we are all here for one another.

Hugs and good thoughts

12-05-2010, 12:03 PM
I'm with you on this - we hate to see our kids start down the road that we are on.
I get looked at like I'm crazy when I point out to docs that I watched my mother and my aunt go through all of the symptoms that I'm having. They keep telling me that it is NOT genetic. I know better. The "old folks" in our family called it "the family curse".
There was an interesting thread on another AI site that called Sjogren's "The Viking Warrior disease". It seems that some research showed that it could have been spread through northern Europe by the Vikings. Interestingly, my mother's side of the family - that suffers from "the family curse" - is from Scotland.
I keep seeing mild symptoms in my four girls. I suspect that when they are my age, they will be dealing with it, too. All we can do is hope that by that time, it will be easily treatable. I hope that you get some answers this week.

12-05-2010, 04:46 PM
Dear mari sorry you are going through this with your daughter i hope you get the answers you need we all hate to think we could pass this on to our children i will be thinking of you and your daughter and hoping you get the answeres you need hugs my friend kim l

12-05-2010, 05:42 PM
Mari (((hugs))) I can't imagine what that would feel like to watch your little girl go through that. If you find out she is suffering from what we are, thank goodness she has such a great mother that has shown her how life can be lived with this mess. I hope that she isn't though. I will be sure to keep both of you in my thoughts and prayers.

12-08-2010, 09:36 PM
Ok Everyone. Tomorrow is my daughters appointment with the rhuemy. We will leave home at 5:45AM because we have to be there at 8AM. For any of you that have never been to Houston during rush hour I will explain why we are leaving so early. The medical center is on the other side of Houston which is about an hour from where I live if you drive straight through. If we leave here at 5:45 we will get there around 7AM and can have some breakfast at the hospital. If we wait until 6:30 to leave we will make it to the hospital about 10 due to traffic. I try not to get appointments first thing in the morning but it was this or she had to wait until Jan.

Anyway. Wish us luck and keep those fingers crossed please

12-08-2010, 10:17 PM
Thoughts and prayers. I just moved to Dallas from Houston and know what you mean. Texas Children's is an amazing hospital and they will figure it out. I lived in NW Houston, then Katy then Sugar Land.

12-09-2010, 04:19 AM
Good thoughts and hugs to both of you .

12-09-2010, 04:54 AM
Good luck today Mari, fingers and toes are crossed...

12-09-2010, 06:56 AM
I know how you feel worrying about your daughter. I have seventeen year old twins, one is officially diagnosed with Lupus like me and the other has a high ANA and is being monitored. Wishing you luck!

12-09-2010, 03:38 PM
Thanks everyone. We have just returned from the doctors office and the first thing I have to say is that I wish this doctor wasn't just for pedi. patients! As I think I mentioned she is the head of the department at Texas Childrens and she was absolutely wonderful! She talked and listened to my daughter and then talked and listened to me. After checking my daughter out (and I must say that I let out a sign of relief when my daughter felt no pain at the fibro testing spots) she sat down to talk to us again.

There is no sign of arthritis in any of her joints (yay). She did go ahead and run an x-ray of her hips because they pop out of place and hurt so badly that she wants to make sure that it isn't what is causing her knee pain as well. Then she began to tell my daughter that due to the fact that even though her mother had been unable to be diagnosed with anything but fibro, more doctors were beginning to see as an autoimmune disease itself and we must make sure to keep a close eye on everything because she is at a much higher risk of getting it because of my history. She also had asked me if anyone in our family had an issue with clotting disorders so I told her about my high Factor VIII and Factor IX. She asked if I was on any meds for this and I said no. I told her that they had only found it this year while they have been testing me for everything. She then asked about the history of miscarriages in my family. I told her that I had 4 before I had my daughter and that my grandmother had 3. The Dr. looked at my daughter and said "Things are different now. We know what things to keep an eye on and many times the issues your mother had can be treated and you won't have to have those problems if we do our job". WOW How wonderful!

She was concerned about how much tylenol she takes so she is going to suggest to her PCP that they start her on amitriptoline (a very low dose) to get the chronic pain in order and to help her sleep a little better. She also wrote her a prescription for 8 weeks of Physical Therapy consisting of pool and massages to try to recondition and relax her muscles as well as for pain modification. She took 7 viles of blood so she could check all of her counts and wants her to stay under the care of her PCP closely (because she has one of the best in the state) but continue to come see her every 6 months for monitoring.

She was the perfect mixture of calming as well as firm. She told my daughter how she could not ignore these things in herself. She told her anytime she thought she had better things to do just to look at her mom and remember that she was going to stay on top of it so she didn't end up where I am because this isn't any fun.

Other than the arthritis we really have no answers but I feel so much better! I now trust that someone will be paying attention to her and her body will not be allowed to get out of hand as mine did.

Thanks for the crossed fingers and warm thoughts. I don't know what I would do without all of you

12-09-2010, 06:16 PM
You and your daughter will be in my prayers Mari. I can't imagine how hard it must be to watch your child walk down the same dreaded path. Perhaps it's something else that can be easily treated. Please let us know.

12-09-2010, 06:31 PM
I hope that things go well for your daughter and she is spared this affliction. I have concerns about two of my grandchildren. The 20 year old has many joint problems and swelling she went to the rhuemotologist and her ana came back normal but as we know thaty is not conclusive of this diease. My seven year old grandson was told he just has growing pains but his mom my daughter-in-law tests positive for lupus but no active diease. We sure do not want anyone especially younger generations to deal with this. My prayers are with you both. Bonita

12-10-2010, 01:36 AM
I am sending hugs, thoughts, and prayers! You are always SO strong and positive for the people here in our family and I hope you know how many of us will be thinking and praying for you and your daughter. Keep your strong and positive attitude and rememer that we are here for you. God bless you and may he give you what you need to get thru this!

12-10-2010, 06:20 AM
Oh you are so so sweet! Thank you so much! I feel so much better after the doctors appointment and having all of you to vent to! I owe each of you for helping keep me sane (well, ok, that is debatable but maybe just more sane then I would have been LOL)

Linda From Australia
12-10-2010, 06:47 AM
So nice to have someone who you feel comfortable with. Hopefully your new doctor will have some positive proactive answers for you in the future

12-10-2010, 07:42 AM
What a blessing that doctor sounds like! I am glad to hear she is listening to both you and your daughter and seems to be so proactive. Hip hip hooray for good health management!

12-10-2010, 09:52 PM
oh, mari

how wonderful to have a dr. like that for your daughter. It is terriby upsetting to watch our children deal with this pain. even berore diagnosis, we cringe each time our child tells us of a similar symptom to ours. I know you have been very worried, and that is certainly understandable. But, to have 2 really great drs. on her team is definitely soothing. i hope you are able to get some rest this weekend, and i send your daughter gentle hugs wishing for no pain.

12-11-2010, 04:10 AM
Hugs for you daughter and Good thoughts for you Mari.