Worried about my daughter

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Worried about my daughter

Postby mom2three » Tue Sep 08, 2009 6:17 am

I'm going to try and be brief, but because this is a year-long saga, it's going to take some time. I hae 3 girls, 2 who have Type 1 diabetes. My youngest also has Hashimotos (autoimmune thyroid disease). A year ago she started having strange symptoms. The first was SEVERE rib pain (bad enough to have trouble breathing, coughing, sneezing). The doctor thought she had broken a rib when she fell when she had a low blood sugar. A few days later she complained of her leg going numb and hurting, then her arm and finally her "jaw". At times she would hold her face and scream. It was terrifiying. They put her on steriods which did seem to bring some relief, and when she was finally referred to a ped. neurologist, they did a brain and cervical MRI (suspected tumor due to all symptoms being on right side). After this symptoms subsided, and disappeard for 2 months. Came back in exactly the same fashion lasted about 8 weeks, then they did a 48 hour EEG to see is seizures were causing problems. Negative. Then she got better AGAIN. 2 months later, she had another episode, but mainly involved hand. REferred to Rheumatologist. Rheumy suspects CRPS (complex regional pain syndrome) due to strep in blood. I think this is bunk, however have been giving her antibiotics for 6 months. Lately, Zoe has been complaining of rib pain and jaw pain several days a week, and infrequent arm and leg pain. However she has had several nights where she wakes up with severe chills.
I have all along thought these symptoms are more consistent with MS. My pediatrician says it's unlikely that this is what it is. I know it's very rare in children, but she already has 2 autoimmune diseases. I know her MRI was clear in November, but can't you have a clear MRI and still have MS?
Last year was horrible for us and she felt like no one believed her because sometimes she felt bad, and sometimes she didn't. I have also been told that the symptoms (pain, numbness, tingling, fatigue) can all be due to her thyroid problems, however since she has been on meds for that her levels have been normal. So I'm here to ask you all for help. What should I do next? She is only 10 years old, and I feel like I'm having to all the research and be her only advocate.
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Postby MaggieMae » Tue Sep 08, 2009 7:21 am

I am sending you a private message. Please check.
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Postby jimmylegs » Tue Sep 08, 2009 4:53 pm

hey there mom, welcome to the forum. my approach to health management is, regardless of a diagnosis or lack thereof, to optimize blood levels of various nutrients so that the blood matches 'healthy controls' rather than patients. if you want to investigate that kind of option, just say.
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Postby catfreak » Tue Sep 08, 2009 5:24 pm

Hi Mom2three,

My oldest son has RSD (reflex sympathetic dystrophy) which is the same as CRPS. It is very real and it is very painful. The treatment for it is anti-seizure meds that help the nerve pain.

I hope you find some answers soon.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby lyndacarol » Tue Sep 08, 2009 6:36 pm

Mom2three--To your question,
can't you have a clear MRI and still have MS?
the answer is, "Yes."

Historically, there have been very few cases of MS in children. But in recent years more and more young children have been found to have the disease -- there have even been a couple cases in children as young as two years old.

In fact, six pediatric MS clinics have been established across the US in the last few years.

You seem to be aware of the fact that people with one autoimmune disease are likely to develop a second or even third autoimmune disease.

My recommendation to people with a recent connection to MS is to educate yourself and read as much as possible on the disease. For starters, the Reading Nook forum here have some suggestions.

Personally, I think the best treatment at present is in diet and exercise. I am not a physician, but I urge you to prepare a low-carb diet (no sugar, no artificial sweeteners, etc.) for your daughter. It is healthy and will not hurt her.
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Postby queenie » Tue Sep 08, 2009 7:17 pm

I have had similar concerns, altho with less dramatic presentation, with my DD that is 21.
I have long thought her to be clumsey and uncoordinated, well before my dx. Does anyone see something familiar here? Anyway, since she got mono a year ago, she has not seemed weel, and really messed up her junior year in college (having been an 'A' student prior".
Well, this summer she announced to me that she had migraines (that was me when she was 2 yrs old). I finally took her to my neurologist. He ordered a bunch of tests, including brain mri, which was normal. I know that yes, it can be normal, and still have ms lurking there. However, i decided that I had done all the prudent things. She has a 'script for migraines. Now I will just believe in the best and most obvious, and follow up, if need be. People get things. She could have ms, but just because I have it doesn't mean she does. also, there is a certain amount of "copy cat" behavior. That is not to say that she is faking it, but let's face it: Kids are somatic. They feel things. Then they may copy behaviors they have witnessed. it is still real.
If, in the future, she was dx with ms, or likely ms, I would get her on something like tysabri or campath ASAP. But in the mean time, if I have her f/u prudently, and nothing is dx, then I can't make my trip hers, know what I mean? Just go along and enjoy the ride!
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Postby whyRwehere » Wed Sep 09, 2009 1:30 am

I really feel for you, as it is so hard to watch your child suffer and not be able to do anything. At least you are able to consider possibilities on your own and not just sit back and wait for someone else to make the decisions for you.
There was a woman who just published a book on the thyroid, and she had been diagnosed as having MS. I googled thyroid and MS and found this study on Pubmed:
Karni A, Abramsky O.
Department of Neurology, Hadassah University Hospital, Hebrew University Hadassah Medical School, Jerusalem, Israel.
A controlled prospective study was conducted to determine whether thyroid disorders are present with increased frequency in patients with MS. We found that thyroid disorders were at least three times more common in women with MS than in female controls. This was accounted for mainly by the prevalence of hypothyroidism among the female MS patients. Because hypothyroidism is usually due to Hashimoto's thyroiditis, its association with MS may support the hypothesis of autoimmune pathogenesis for MS. Our findings might have therapeutic implications because interferon treatment can induce antithyroid antibodies and thyroiditis.

I agree with Jimmylegs that diet and nutrition can really help. I also agree with the antibiotic protocols, annd lastly I am a big believer in the CCSVI theory. What doesn't hurt, but helps, is my motto....
I hope you find your own solution.
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Postby mom2three » Wed Sep 09, 2009 12:01 pm

Where do I read about CCSVI theory? We eat really healthy around here. My husband and I both run marathons as a hobby, but with 2 diabetic kids, cutting our carbs and sugar is impossible. Sometimes they have to have it (like medicine!) to keep them alive. I'm going to read more and see what I can come up with. I'm tired of no one knowing, and with 2 kids with issues, I'm just plain tired.
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Postby MaggieMae » Wed Sep 09, 2009 12:55 pm

Go to "select forum" and look under "treatments". CCSVI is the last on the list of treatments.
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Postby lyndacarol » Wed Sep 09, 2009 4:26 pm

Mom2three--I do not have diabetes, but with my interest in insulin I watch research in that area, too. I think great breakthroughs will be coming soon there. Keep an eye on Dr. Denise Faustman, researcher at Harvard; she has been able to cure type I diabetes in mice recently.
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Postby mom2three » Wed Sep 09, 2009 7:04 pm

We are on Faustman's e-mail list!! My daughter's are in thier research grid, and we may be going there in the spring to donate samples!
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Back again!

Postby mom2three » Fri Jan 15, 2010 12:17 pm

Thanks to those of you who replied before. Here's an update: October Zoe started having new symptoms, severe dizziness that would last for days and c/o "heavy legs". She missed 2 weeks of school because she was so miserable. Her pediatrician decided that since she has been on antibiotic treatment for 6 months and her strep titer had come down, that the strep was probably a red herring. He asked for another MRI. This time the results were "an area of abnormality in the tracts below her thalamus". We were referred to Children's in Birmingham, which has one of the 6 pediactric centers in the country for children with demyelinization disorders and MS. Since the end of Nov. She has been symptom free, and feeling great. Now this week we've had another "flare-up". Again....right rib pain, right face pain, pain, numbness and tingling in the right arm and leg. C/O blurry vision in her left eye. This time she also has severe back pain.
So my question to anyone who can help is "What do I DO!!!!!!" She is miserable, but because she has no diagnosis, she has no treatment. I don't know what to give her for pain. I don't know whether to make her move, let her rest....no one will help me. We don't go to Birmingham until Feb . 10. I have searched the web for HOURS and cannot find a forum that deal with children. I have one for children with diabetes, and post there often and there is always someone there to help. I think I just need to know I'm not crazy, and need some ways to help her until we have our appointment. Thanks!
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Postby jimmylegs » Fri Jan 15, 2010 2:03 pm

mom one way you can take control without diagnosis is nutrition. if you are interested in finding out about 'usual suspects' in ms, you can ask to get your daughter's levels in those things tested. probably everything will come back 'normal' but that is a far cry from 'optimal'. there is often an 'ms range' and a 'healthy control' range, both found under the 'normal' umbrella. pm ms if you want to find out more. you can also read my ortho topic under regimens. for more nutrition info, i have included my signature links below. good luck with the fight! i can imagine the frustration, not having a dx, but you can take action without it!
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