Son falling and other odd symptoms-how concerned should I be?

[corrie23]

My son is six. For the last 2 years or so he will occasionally say that his ankles/feet hurt or that he feels funny when he's walking. This tends to happen around times of illness, but not always. Earlier this week he was complaining before bed that both of his ankles hurt a lot. He went to bed but woke up around 10:30 crying/screaming that his ankles hurt (but he had also walked from his room to mine to tell me this). The next morning he was walking fine but right before school again started crying that his right ankle hurt. I ended up carrying him to the bus stop and sending the nurse a note. At the end of the day he told me he had been fine and his ankles felt okay.

Yesterday he was sitting watching tv and out of nowhere I hear a scream. I run over (I'd been in another room) and I find him flat on the floor, face down with blood around him. He said that he had fallen and he had a bloody nose/bruising on the bridge of his nose/forehead. I hadn't seen him and he couldn't give a good report as to what had happened before he fell (had he tripped on something?). I thought it was odd that he had not done anything to try to catch himself; he was literally flat on the floor with a smashed face. He recovered fairly quickly, despite being really freaked out by all the blood (he's never had a nose bleed before).

Today (about 30 minutes ago) we hear crying again. He was once again flat on the floor, having fallen forward. My husband said that he saw it happen and our son was running from the kitchen table back to the couch and just fell (didn't slip or trip, just fell face-first although he didn't hit his face this time). The floor is flat and wood. There is nothing in the way to have to move around or to trip over except the dog bed, which is right up against the wall. Not toys on the floor; no furniture in the path.

I'm not sure what to think. The only other symptoms that I can think of are my son saying on occasion over the past few weeks that sometimes his eyes get blurry for a second and he shakes his head to clear his vision. Questions have made it hard to determine if this is eye fatigue (e.g., after screen time) or something else. My son's coordination is not great (he's been in OT since he was a toddler) but he now tests out as pretty typical with his gross motor skills and it's been years since he was prone to falling. We also have a lot of lyme disease in the family (I have chronic lyme and I think my kids got exposed in-utero. My oldest has tested positive but we haven't tested the other 2 yet). The intermittent ankle/foot pain would be consistent with lyme, so I haven't given it too much thought in the past, especially since it is usually gone by the next day. I'm concerned that there may be some inner ear thing/infection impacting his balance or something neurological.

I don't know what to do. Two face-first falls just walking/running a few feet from Point A to Point B in less than 24 hours seems like a red flag to me, especially combined with the reports of ankle pain with no apparent cause. I'm not sure what to do. Emergency room? CT/MRI? Again, at the moment he is fine. I think that the ER docs might think me crazy. I haven't found a decent pediatrician since we moved here and our old doctor retired and left the country so I don't really have a doctor to call for advice (finding a good ped is on my to-do list but that won't help with this right now).

Opinions welcome, please!

[SnuggleBuggles]

My advice would have been to call your Dr. ASAP. Since you don't have one, I'd start with a walk in urgent care. They may or may not refer you to ER. But, I would've wait.


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[geochick]

Go to an instacare and tell them what is happening. You don't have to worry about which tests are needed. They get to do that. Good luck.

[specialp]

Since you do not have a doctor, I think I would do urgent care or ER. I wouldn't worry about feeling crazy.

[mackmama]

If it were my child, we'd be going to the ER if I could not get ahold of my pedi. Read them everything you wrote here so you don't leave anything out (Lyme, blurry vision, falling, blood, crying out in pain, etc). Advocate for him if the doctors brush you off. Hang in there, but something isn't right here and needs to be addressed.

[trcy]

I would also take him to the ER. P & PT!


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[squimp]

Do you have an urgent care facility? I'd head there. The blurry vision thing combined with falling would make me really concerned.

[candaceb]

If you have a children's hospital with an attached/close by/affiliated urgent care, that is where I would go in this situation.
Thinking of my experiences at regular urgent care/walk-in clinic, they are equipped to deal with the run of the mill sinus infections and broken arms - not something like this where it seems like there is something chronic going on rather than an acute situation that is seen at urgent care.

[mackmama]

If you have a children's hospital with an attached/close by/affiliated urgent care, that is where I would go in this situation.
Thinking of my experiences at regular urgent care/walk-in clinic, they are equipped to deal with the run of the mill sinus infections and broken arms - not something like this where it seems like there is something chronic going on rather than an acute situation that is seen at urgent care.

I agree - I would NOT go to an urgent care. A children's hospital ER is optimal, otherwise a regular ER. That's what I would do. Sending P+PT.

[squimp]

I agree - I would NOT go to an urgent care. A children's hospital ER is optimal, otherwise a regular ER. That's what I would do. Sending P+PT.

My urgent care treated my DD's Lyme exposure, in an area with little Lyme knowledge. They are very knowledgeable and the wait times are usually much shorter than the ER and you're not exposed to all the terrible things happening in the ER. IME they will point you elsewhere if need be. I really don't like going to ER though!

[corrie23]

Thanks for the input so far. Went to urgent care but they didn't even take him back because they said that they were really limited in what they could assess (only have an x-ray). Now at local children's hospital ER waiting to be seen. Will update.

[jgenie]

I'm sorry you weren't able to get any answers at urgent care but glad to hear you have a children's hospital close by. P & PTs for a quick diagnoses and resolution. :hug:

[corrie23]

Well, we're home. I can't say that they really did much at the ER. Took a history, looked him over and sent us on our way. No tests whatsoever. Suggest that we consider following up with a geneticist (because when giving the history I always mention our MTHFR mutation which often sends all medical practitioners into a tailspin because they know little about it). Not sure how that would relate to ankle pain, unexplained falls and blurry vision, but whatever...Many hours, many $$, but I did my due diligence.

[PZMommy]

Well, we're home. I can't say that they really did much at the ER. Took a history, looked him over and sent us on our way. No tests whatsoever. Suggest that we consider following up with a geneticist (because when giving the history I always mention our MTHFR mutation which often sends all medical practitioners into a tailspin because they know little about it). Not sure how that would relate to ankle pain, unexplained falls and blurry vision, but whatever...Many hours, many $$, but I did my due diligence.

I'm surprised they didn't do more! I would find a pedi ASAP and take him in for a check up, as something sounds off!!

[kara97210]

I'm surprised they didn't do more! I would find a pedi ASAP and take him in for a check up, as something sounds off!!

:yeahthat: Definitely get him to the doctor. Hopefully it's not anything serious. My first thought was maybe some sort of vitamin deficiency. My sister was iron deficient as a child and had a series of weird, seemingly unrelated, symptoms. It took many trips to our pediatrician to figure out what was wrong. Once they figured out, the treatment was pretty straightforward.

Good luck!

[petesgirl]

I'm surprised they didn't do more! I would find a pedi ASAP and take him in for a check up, as something sounds off!!

I agree. And maybe look into seeing a neurologist as well.

[lmh2402]

hugs, mama.

echoing PPs - I would not just let it go. Find a doc ASAP and make sure you tell them how little the ER did!

hoping your DS is ok and all efforts are for naught, but way better safe than sorry

[Melbel]

I am so sorry your son is struggling. Your son's issues could be caused by Lyme Disease. Joint pain, balance disorder, eye issues, flares with illness all point in that direction. Often kids can have controlled Lyme, that gets out of control after other illness, vaccines, stress, etc. suppress immune function. Unfortunately, standard labs miss 1/2 of actual cases per numerous peer reviewed studies, and most doctors are not trained on the complexities of tick-borne illness. Our own son's crash started with similar symptoms (noting that things got much, much worse before we figured out what was wrong). I suggest you consult with a reputable ILADS trained physician (www.ILADS.org and consider contacting local Lyme non-profits for doctor recommendations) and test with IGeneX western blot (IgG and IgM). Another lab option is Stony Brook University Lab, requesting ALL bands be reported. Any positive bands on a Lyme western blot are a huge red flag for Lyme even if the test is "negative" using CDC surveillance criteria that was not developed for diagnostic purposes. We have MTHFR defects as well for what it is worth.

I would also request a pediatric neurologist referral so they can rule out other issues. A brain MRI may be warranted.

Trust your gut, and press forward even if doctors try to minimize your concerns. You know your child. It took 10 requests/pleas for Lyme testing for our son, and a knowledgable provider to hash out the results after being initially told our son's test was negative. Our son is remarkably better with proper treatment thankfully.

[doberbrat]

Personally I'm not at all surprised they did not do more. IMO an ER is for immediate emergencies. Not more complex problem solving.

That being said, I'm surprised (horrified?) they did not at least give you a decent pediatrician and/or neurologist referral. IME they give you a referral and the fact that you've been seen in the ER usually helps 'bump' you up to the top of the appointment list.

Isnt there anyone you could ask for one? I know I'm part of a mom's group that gets asked this question pretty routinely. Perhaps you could list your city -maybe one of us lives nearby or knows someone else who does?

:hug: I'm sure you're freaked out.

[mackmama]

Personally I'm not at all surprised they did not do more. IMO an ER is for immediate emergencies. Not more complex problem solving.

That being said, I'm surprised (horrified?) they did not at least give you a decent pediatrician and/or neurologist referral. IME they give you a referral and the fact that you've been seen in the ER usually helps 'bump' you up to the top of the appointment list.

Isnt there anyone you could ask for one? I know I'm part of a mom's group that gets asked this question pretty routinely. Perhaps you could list your city -maybe one of us lives nearby or knows someone else who does?

:hug: I'm sure you're freaked out.

:yeahthat: If you are comfortable sharing the general area where you live, one of us could possibly give you a lead on who to see next. I do think you need to follow up on this right away. Something doesn't seem right. Hang in there, Mama.

[gamma]

I agree. And maybe look into seeing a neurologist as well.

Definitely a neuro evaluation is in order.

[squimp]

I am also surprised that the ER folks or Urgent Care folks didn't point you in a specific direction and provide some urgency so you can get an appointment ASAP. Is there a university or children's hospital that you could contact to make an initial appointment with a pediatric neurologist? Our pediatrician referred us to the primary university hospital in the state when they thought she was having a neuro problem. Turns our that it was a vision issue, but those folks knew exactly what to do. Another pathway might be to ask mom friends or the school nurse for a pediatrician recommendation so you can get a referral.

[StantonHyde]

The ER is for emergencies. They are not for complex work ups. Your son is not in emergent danger. The ER orders tests that have quick results and are necessary for life and limb. That doesn't mean he doesn't need to see an MD. But you need to start with a pediatrician and I would absolutely have him tested for Lyme. If you went after hours then the ER would not be able to make an appointment for you. Start networking to find a good pediatrician. I hope you are able to get in quickly and then get referrals for specialists.

[corrie23]

Thanks again everyone.

The ER did not refer out to a neurologist because in there opinion there was not a neurological issue. I very clearly asked about potential neurological causes. I also asked about the potential for something that might be interfering with his motor control outside of a neurological issue (I am a rare cancer survivor and my tumor was in a muscle in my leg. Additionally my dad is currently living with ALS so I am no stranger to the body having problems that it "shouldn't.") I asked specifically about MRIs or CTs, we spoke about potential seizure activity, motor control/planning problems, etc.

In my post here I focused on the most pertinent details for the sake of simplicity, but the issue is a complex one. It is not that I do not know how to go about finding a pediatrician or that I haven't been trying to find one...we used to see a family practice doctor who had been suggested by my midwifery group when I had child #1. We liked her a lot and were with her for 11+ years, but unfortunately for us she retired and moved out of the country about 18 mos ago. Around the same time, we moved out of the area. The area where we now live is less "progressive" and more litigious than where we came from. Most of the smaller medical practices have been bought up by the big hospitals. They all have policies that they WILL NOT treat pediatric patients who are not up to date on their vaccines and my kids are not for reasons that I do not want to go into in great detail, but are not entirely unrelated to them all having a genetic methylation disorder that impairs their body's ability to process and eliminate toxins, all having neurological abnormalities, and autoimmune problems rampant throughout the family (not to mention the whole lyme disease thing that we are still working on for all three kids).

I have asked many many parents and professionals for referrals, including the ER staff who we saw yesterday, and all names have been dead ends. The name that the ER gave me was a doctor who I know of, but who I also know has recently retired. The doctor who we "see" currently bought out the practice of said doctor, but I have been unimpressed with his level of care (for reasons not worth delving into). In addition, literally 20 minutes after writing this initial post I received an email from the doctor's office saying that he has decided to close the location where we were seeing him and will only see patients at a new location 45 minutes away from my home.

I could go into great detail to explain the complexity of the kids and the laundry list of professionals they have seen, tests we have done, therapies they do, but it would exhaust me to do so. I will say that it is not at all atypical for me to see symptoms that look "alarming" to me only to have medical professionals downplay them or not know what to do about them; turning me away with little direction or answers.

I will continue to try to find a physician who will treat my kids and oversee their general care with consistency. I will keep a close eye on my son, and if I continue to see things that are of concern, I will continue to look for answers.

Thank you all again for the care, support, and encouragement.

[marymoo86]

Hugs mama. I opted out of the peds route myself. Find a good General family med Dr as they usually more relaxed. Or even better would be a functional med doctor or even an integrative practice. Good luck!

https://www.functionalmedicine.org/practitioner_search.aspx?id=117

[Tondi G]

Not sure if this list of doctors will help you but might be worth checking.
http://naturallynicole.com/naturally-nicoles-complete-list-of-vaccine-choice-doctors-by-state/

[Tondi G]

Not to say your son has this, but I have a friend who has children with Friedreich's ataxia and I remember the first issues she recalled with her oldest was that he tended to trip (over seemingly nothing) and was having vision issues. May be something to ask to have him screened for?
Hope you are able to find a doctor who can help you figure out what is going on with your kiddo ... and not hassle you about their vaccine status.