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Questions for my daughter, please
4 Replies
terpmom - November 6

I need help. My daughter is 14 and on July 24th started with a headache. As well, she has dizziness and unsteady on her feet, nausea, lightheaded when she stands with her heart rate increasing and blood pressure dropping, and lower back/flank pain. She was referred to pediatric neurology, where she was seen in late August, put on a medication and told to not call until she was on it for 8 weeks. All blood work has been normal (CBC, thyroid panel), urine dip normal as well. NO migraine meds have worked. A recent round of steroids have made a minor improvement on her pain. Since last Sunday, her pain level has been between a 6-8. and her head pain now isn't just around her head, but is on the top as well. Her symptoms persisted and now she is in an exacerbation that started nearly two weeks ago and include popping and cracking joints, rib cage pain and sternum pain (it cannot be touched without her wincing), she occasionally feels like something is stuck in her throat whens he swallows, she is losing a lot of hair on her head, leg pain, especially in her groin area (this was x-rayed and shows normal joints), her hands and feet are cold, and she has had some vision changes with blurriness. Pediatric rheumatology saw her Friday (yesterday) and didn't want to run any blood work to check for inflammatory markers, even though the pediatrician requested it. They did at my insistence, though sed rate and CRP were low and I'm wondering if the results were skewed since she finished the steroids on Thursday. Still waiting on the ANA. My younger daughter has Grave's Disease, so auto-immune runs in the family. Since this daughter has anxiety and depression and there is no easy diagnosis, providers want to blame it on that, despite her psychiatrist knowing this is NOT a psychosomatic phenomenon. ANY help or insight would be greatly appreciated. I am so frustrated facing doctor's egos who ignore symptoms. I don't know where to turn next, and my child tells me how miserable she feels about every hour (or more often) and I have nothing in my bag of tricks to help her feel better. Thank you.

 

Searcher - April 5

Terpmom, I hope you have found some answers for your daughter already. You sound like you are being a very good mom because you are there for her. Even if the doctors around her don't know what to do or don't want to take time for her you have succeeded in being a good mother.
I don't want to sound like I am giving you medical advise but I think that there is not one answer to all these symptoms. There must be several things going on. You may have to take her to several different types of specialist to treat the various symptoms. Just keep trying.
I really can't give you anything specific to do but just know that many of us have had similar experiences and we care. I have said a prayer for you, your daughter and your family.
As with any of us who are sick, The more joy and laughter your daughter can experience the better she will feel so try to help her find these things. This will help her to have energy to fight. And if you can, find them for you too.
Would love to hear how things are going now.

 

Arnoldsi - July 6

For migraines, I can tell you the number one thing that has helped me is a strict organic diet (especially for things including corn, soy, wheat, or animal products). It can be difficult to make the change, but nothing else has helped me so much. For chest pains, I found that the muscles and tendons in my back were actually causing pain to lance around into my chest. Physical therapy, yoga, isometric stretching, have all helped a lot with this. Consult a doctor and/or therapist first, but PT is necessary to heal if it's fibromyaglia. It will hurt, it will be frustrating, and it will be slow, but when she starts seeing results I think she will see that it's all worth it. I'll keep you both in my prayers, God be with you.

 

terpmom - July 7

Hello, and thank you so very much for your responses!! My daughter still has flares, and now with them, she gets a red sore throat, her tonsils get huge, and she gets an elevated temperature that is in the 99 degree area and creeps to 100. These flares last about two weeks at a time.

We try gentle stretching at home and I massage her to her tolerance level, and we have talked some more about PT. She is open to it, and with summer vacation here, we have the time to commit to it. We have talked about swimming too for the benefits it will provide for her whole body. She sees an immunologist next week for yet another different perspective. Can't hurt. ???

Most definitely, having her mind on other things, laughing, getting out of the house, out of her head and what is going on with her body helps! She picked up her first job, which is exciting and fun (working concessions for the local little league) and she loves getting her paychecks. Allowing her to control the first ventures out when she has a flare - giving it a try, when she has had enough and wants to go home, not putting any pressure on her - all are important. And trying to not stop life in the meantime as well.

During the school year, how do I encourage her to still attend school even when she feels this way?

I appreciate knowing we are not alone, your thoughts and prayers mean so very very much!!! THANK YOU! [3

 

Arnoldsi - July 7

Glad to hear she is open to PT, that's a good start :-) For message, I would highly recommend looking into a trained masseuse. Their knowledge of physical therapy message goes far beyond what your everyday person can do. They can provide a message that is gradual, but still restorative so that it doesn't hurt nearly as much.

As for attending school, or any other normal activity amidst the pain, I remind myself that it's going to hurt either way and I'd rather not let the pain rule my life. My faith is a big part of that though; my dependence on God and looking to Jesus Christ as healer, provider, and ultimate savior allows me to keep going from day to day. I look to Scripture such as James 1:1-4, 2 Corinthians 12:8-9, and John 16:33. Hope that helps, keep fighting the good fight ;-)

 

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