10 Year Old With Nerve Pain

[astearns]

Hello, I am new here and this is my first time ever posting on a forum so please excuse me if I make some mistakes.

My daughter is 10 years old and was diagnosed with dysautonomia this summer. She has had a few symptoms for a few years (lack of appetitte and intollerence to heat and inability to regulate body temperature) but it wasn't until at the very beging of summer when she just wasn't quite getting over a virus that the symptoms all came in full force. She was very sick this summer but we were lucky to get a diagnosis after seeing a pediatric neurologist at Childrens. I feel that the diagnosis is correct and all the symptoms seem to fit perfectly but the thing that is concerning me the most at this point is that she is having what I would describe as nerve pain constantly. When it first starting happening, she would say that her feet were numb (kids sometimes have a hard time describing their pain) but after asking more questions I figured out that it is actully very painful and not numb at all. The pain came on gradually but at this point she constantly has pain in her feet and all they way up her shins. At the elbow joint and radiating around it is also very painful and achy and when I touch or rub her upper arm (very gently), she winces because it is painful to her. She wakes up with this pain and has it constantly but if she is on her feet a lot, climbs stairs, is at all active, the pain will radiate up her legs. She has learned to tolerate it when it is at her feet and shins but if it gets to her knees or any higher she is in a lot of pain.

We have only seen the neurologist twice, once when she was diagnosed and again a little over a week ago. When I brought this up at her apt with my concerns that maybe there was an underlying condition the neurologist didn't seemed concerned and thought this just goes along with the dysautonomia diagnosis and symptoms. I have read and researched tons since her initial diagnosis and while I do see a little on nerve pain, it doesn't seem very prevalent and as a mother I just want to make sure there isn't permanent nerve damage happening that we could possible prevent. Although her neurologist said we could possibly do a NCS/EMG, she really just feels that if she drinks enough water and consumes enough salt she will be just fine and symptom free. I find this frustrating because we have been very diligent with the water and salt and it hasn't seemed to help but she has only gotten worse. If water and salt was all it took, then why would there be so many suffering? I did push for blood work at this appointment because it had yet to be done. She did a CBC, CMP, B12, and thyroid panel. All came back normal other than her creatinine level being a little high. I thought we were testing her glucose to rule out diabetes but then saw when we got the test results back that the numbers were based on a fasting sample and my daughter hadn't fasted the night before.

I would love any input or opinions on the nerve pain. Are there others who have similar nerve pain without an underlying condition? Should I push for another CMP with fasting this time or is a normal result without fasting sufficient to rule out possible diabetes? Any opinions on the NCS/EMP?

Thank you to all that have taken the time to read this and to those who respond, it is really appreciated.

[corina]

Hi astearns, welcome to DINET!. I'm sorry your daughter has to deal with all this at such a young age. It is often found though that dyautonomia brought on after a virus gets better within time. There are several moms (and dads) around here who can relate and might be able to help answer your questions!

[Katybug]

Hi astearns,

I'm sorry your daughter is having to struggle through this, and, you as well.

Dysautonomia can be associated with neuropathy and it is valid to be concerned. The other thing that stood out to me is that the is joint involvement in this pain. That brings two things to mind, first, Ehlers Danlos Syndrome ( EDS ) which is often found in POTS patients. It is a genetic connective tissue disorder and many of us don't know we have it u til we develop dysautonomia as a result of it. The best person to diagnose that is a geneticist but some rheumatologist are familiar with the diagnosis. Which brings me to the second thought, which is that you might want a rheumatologist to evaluate her for autoimmune disorders as that could also cause the kind of pain you are describing.

I believe you are right to try to get to the bottom of this pain. I personally experience a lot of pain and whether it is from dysautonomia or some other underlying condition, finding the true source will help put a plan in place for managing the pain which is important. Thank you for believing your daughter as it is hard to cope with invisible disease and having people who believe you is exceptionally important.

Take care,

Katie

[astearns]

Thank you Corina and Katie for your input, It is so valuable to hear from others who are going through the same thing and understand that it is a big deal. I will look into getting her into see a rheumatologist. I am familiar with EDS and had considered it but she doesn't seem to fit the criteria or have the symptoms of hypermobility, stretchy skin, etc. but I have read that there are several different types of EDS though, so maybe it is something to look into.

I am optimistic based off of statistics that she will hopefully eventually outgrow this but feel terrible for her that she is going through this at such a young age and in a sense she is missing out on being a kid.

Thank you again.

[Guest ANCY]

Hello, so sorry to hear about your daughter, I will be in prayer that God will bring healing to her body. I do deal with pain on a constant bases, especially in my joints, as of right now they don't have a specific cause. I also have less sensation below my knees and in my hands, at times feels like pins and needles. I have had an EMG that was normal. My family and I suspect that I may have EDS and that could be the cause. (My little sister and mother have both been diagnosed with EDS.) I find gentle stretches to be helpful some times, also use Kinesio tape. I hope your daughter realizes some improvment soon. God bless!

[astearns]

Thank you ANCY

[looneymom]

Has her Vitamin D or iron levels been checked? Low vitamin D/ iron levels can cause severe leg pain and other pain issues. My son has the hypersensitive skin issues that you have described and other chronic pain issues. You may need to check out the symptoms of Chronic Regional Pain Syndrome. My son has all the symptoms but has not been officially diagnosed. However, his cardiologist has put him on a medication called Low Dose Naltrexone and he is no longer feels pain when being touched on his legs or arms. This medication is used to treat CRPS and other autoimmune immune conditions that can cause nerve pain. If you do a search on the forum for LDN, you will find other articles explaining this medication. Hope your daughter gets to feeling better soon.

[astearns]

Thank you so much looneymom for taking the time to message. Your post was very helpful! She has been checked for vitamin D and iron and they were fine. I had read some about Chronic Regional Pain Syndrome and it made me smile to hear that there was a treatment for your son and he is able to me touched without feeling pain and gives me hope for my daughter. I just found out we are going further with testing to determine the source and type of nerve pain that she is experiencing so that makes me happy. Thank you again for your input and I hope you son continues to improve as well!

[TCP]

I am sorry to hear about your daughter's nerve pain.

My neuropathy came on 8 years ago. I have it all over my body. I have also found out that apart from POTS I have Ehlers-Danlos Syndrome. It took 54 years to get both of these diagnoses. I am hoping to get the neuropathy diagnosed. I think it may be small fibre neuropathy which ties in with the other two conditions. There is also neuropathic POTS to be considered, also Lyme's disease, Diabetes etc. You don't have to have stretchy skin to have EDS, I don't.

I have had an EMG but some nerve damage showed but it won't show small fibre nerve damage you have to have a skin biopsy for that.

I am taking alpha lipoic acid/acetyl-l-carnitine, D and E Vitamins, B vitamins, calcium, magnesium etc to help with the nerves, exercising, using an EMS/TENS, changing my diet etc does help. I eat vegan, no sugar, gluten, dairy or processed foods. Gluten damages nerves and dairy causes inflammation in the body.

I wish her well and hope she finds some relief. Getting to the bottom of what's causing it can help, if that is treatable, otherwise it's about management. I take Gabapentin and Nortriptyline for this nerve pain.

[astearns]

Hi TCP, thank you so much for all the info and I am so sorry to hear that you have been experiencing this nerve pain for so long. You said you don't have stretchy skin, but do you have the hypermobility? Have you seen great improvements with the dietary changes as far and the pain goes or is this more for prevention of further nerve damage? I hadn't heard anything about gluten damaging nerves, I will have to look more into that. Thank again for the info, I am anxious to do more testing to determine the source so we can either prevent any further damage or find a way to manage the pain.