2nd update-not going well #67--DD fainted and/or had a seizure

[JustMe]

Please send PTs or whatever you have to offer. I will take any relevant advice as well. Yes, we have been to a doctor. Yesterday, 14 year old dd went to school like any other day. Around noon, she was hanging out in the classroom of one of her favorite teachers, where kids frequently hand out when she appeared to become stiff (according to her friend's observation), went down, fell backwards and hit her head twice. At that point the teacher rushed over. She was unresponsive for about 8 seconds, but then responded. There was some shaking once she was on the ground, but her friend does not think she was shaking before she hit the ground. She was confused at first, but more because she did not know why she was on the ground and why she was getting so much attention. She knew who she was, who everyone else was, and had memory of everything except starting to fall and whatever happened during the time she was out. She had eaten lunch (and breakfast) normally before any of this happened.

Went immediately to the pediatrician and saw a dr in her group (her ped. was out). Bloodwork, urine, and blood pressure results were normal. Today she seemed okay and went to school. She was feeling lightheaded and dizzy; she also felt nauseous when she tried to eat. She looked awful when I picked her up and was very slow moving. She is doing better after a couple of hours on the couch. She has an EKG in a couple of hours and and EEG that is not until the beginning of May. She has never experienced anything like this before, although about 5 years ago she complained of a pounding heard and not being able to breathe at times. She had an EKG which was normal, so this was written off as anxiety related.

[trcy]

Lots of P & PT headed your way!


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[PunkyBoo]

Praying for your DD!

[bisous]

I don't have any advice but it sure sounds like you're doing everything you can. Here's praying you find the right doctors who run the right tests to get to the bottom of the whole issue!

[Philly Mom]

Sending lots of positive thoughts your way!!


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[jgenie]

P & PTs on the way!


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[robinsmommy]

Sending positive thoughts as well!

Has she had any vaccines or other medical changes lately? New meds or such, even over the counter? Are there flu or stomach bugs going around in the area? Only things I could think of, I am guessing the ped already covered all this with you....

[Kindra178]

Prayers and positive thoughts! There's a connection with seizures and puberty, especially in girls.

[mackmama]

How scary, I'm so sorry. I would keep her home for a couple days to make sure she's steady and her energy is ok before returning to school. I hope the tests go okay today. I'm sure you're wanting answers.

[mmsmom]

I am so sorry this happened. Did they screen her for a concussion? The symptoms she is having today could be concussion related. I hope you get some answers soon.

[PZMommy]

I am so sorry this happened. Did they screen her for a concussion? The symptoms she is having today could be concussion related. I hope you get some answers soon.

This was my thought as well. Today's issues could be related to falling and hitting her head. I would probably keep her home tomorrow and let her rest. Hope she feels better and you are going to get some answers today!

[MMMommy]

Sending positive thoughts for your DD! Hope everything turns out okay! :hug:

[JustMe]

Thanks, everyone.

Okay, so she did have her first Gardasil vaccine dose 2-3 weeks ago. My phone automatically erases past appointments, so I am not sure of the exact date, but it is in that range. Should I do anything about that? The vaccine was given at her ped's office, but was done at a nurse's only appt. Otherwise, no medications or any changes.

She was not screened that thorougly for a a concussion as some of the info I gave the dr about what happened was inaccurate (based on not getting accurate info), but this was corrected after our visit and the dr did call me and say to keep an eye on her for that. I really don't have any experience with concussions.

She is doing a little better now, mostly tired. She ate, and her color is normal. Had EKG, and I guess how fast we get result depends on how fast the cardiologist interprets them and gets this to the ped's office.

[JustMe]

Argh, there is a lot out there regarding Gardesel and fainting or seizures, including within a few weeks of the vaccine! OTOH, there is a lot out there about everything. Any suggestions about what to do? Do I call the ped's office with this concern?

[JBaxter]

You should call them and put it in her chart. It may give you pause to not continue the series. If you start googling gardisil side effects it will scare you. Is it something not related or is it the vaccine Now you have to weigh the pros and cons of continuing that series if there has been no other seizure / fainting history.

[robinsmommy]

If you think that it is the vaccine, you really should file a VAERS report. If there are problems, it needs to be shared, just as you would report a safety issue with a car seat or other safety issue. Fingers crossed that this is something simple and easily resolved.

[JustMe]

Thanks for the replies. I guess I will wait for the result of the EKG that we should have in a few days before deciding what to do around reporting the vaccine. I really have no idea if it was related, and tend to not be one who worries much about that, especially as dd has not had reactions to vaccines in the past. However, yes, there is a lot out there (on-line) around fainting, seizures after this vaccine; many are more immediate, but many delayed as well. Not really sure how I would know if it was the vaccine unless something else definite is determined.

She has no other fainting or seizure history.

[JBaxter]

It usually gets connected after they get worse with the next in the series of vaccines. Good luck

[corrie23]

The event that you describe sounds like she has a tonic clonic (grand mal) seizure. I'm glad that you mention the vaccine because that was my first thought when I read "14 year-old daughter" and "seizure," although of course there can be many other causes for a seizure. That said, if it was my 14 year-old I would absolutely call the doctor's office right away and insist that the seizure be noted in her record with my concern that it might be vaccine related until that possibility was ruled out. I also would express my concern about waiting until May for tests and would ask about bringing her to the ER and how that might expedite testing/results and connecting with a neurologist. I also think that evaluation for a concussion in the ER is warranted given that she sustained multiple hits to the head during the event and she is evidencing fatigue, nausea, dizziness/lightheadedness etc. following the incident. What you describe sounds much more neurological to me than cardiac.

[gamma]

I would recommend seeing a Pediatric Neurologist as soon as possible. It will give you peace of mind to rule out anything neurological.

[123LuckyMom]

The event that you describe sounds like she has a tonic clonic (grand mal) seizure. I'm glad that you mention the vaccine because that was my first thought when I read "14 year-old daughter" and "seizure," although of course there can be many other causes for a seizure. That said, if it was my 14 year-old I would absolutely call the doctor's office right away and insist that the seizure be noted in her record with my concern that it might be vaccine related until that possibility was ruled out. I also would express my concern about waiting until May for tests and would ask about bringing her to the ER and how that might expedite testing/results and connecting with a neurologist. I also think that evaluation for a concussion in the ER is warranted given that she sustained multiple hits to the head during the event and she is evidencing fatigue, nausea, dizziness/lightheadedness etc. following the incident. What you describe sounds much more neurological to me than cardiac.

This exactly!!!! Definitely make a note in the chart about the vaccine, and get concussion evaluation and neurological exam as soon as possible. Not in May! The concussion is really important to assess right away.

Prayers and positive thoughts heading your way!


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[jench]

Have you ever heard of vasovagal syncope? I have this issue, with blood/needles and with constipation. My 12 yo DD just started showing signs of this too - the 1st time was in the drs office (thank God! b/c she fell on her chin and had to get stitches!) right after receiving a shot (not gardasil) and the second was with constipation. She did go stiff and twitch a little when she fainted. So scary. She knows to lay down immediately if she gets that feeling now. But definitely see your dr and/or a specialist (cardiologist or neuro?) to make sure it's not something serious. Especially since she's still feeling symptoms, may want to rule out concession. Hope she finds relief and answers!

[Indianamom2]

I agree completely with all of this. I would not be willing to wait until May for neuro testing. I would also definitely bring up the Gardasil link. Hope it turns out to just be a fluke.

[JustMe]

Thanks for the continued replies. Did stayed home today, but wanted to get out by the afternoon , so we did. She is still fatigued with a headache, but is now not dizzy or anything else. I called the doctors office and reported my concern about Gardisel, as well as waiting for the neuro. appointment, etc. They basically said to bring her in if she is still having issues mid-week next week, poo pooed the Gardisel possibility saying this is something that happens to males right after administration, and told me to treat her as if she had a concussion (as I told them her symptoms and said I thought she had one). I don't think they would do anymore for us in the ER as she looks better, has seen a dr, etc. Plus when I scheduled the EEG (for May), I was told she had to be sleep deprived and could only sleep half as much as she usually does the night before.

What I am upset about is the neurologist still has no referral, and is currently booked through mid-June. He is the only ped neurologist for hours away. The ped's office says it takes a few days to get the referral out of their system for whatever reason. Their referrals for the EEG and EKG were more internal. In any case I don't feel like there is anything more I can do at this point.

[hillview]

Waiting for an eeg around here (Boston area) is typical. My neighbors daughter started to have seizures and they had to wait. I'm so sorry. It's scary!

[KrisM]

I'm sorry the doctor's office wasn't more helpful about it all. I hope you can get in soon and get some answers.

[KpbS]

What I am upset about is the neurologist still has no referral, and is currently booked through mid-June. He is the only ped neurologist for hours away. The ped's office says it takes a few days to get the referral out of their system for whatever reason. Their referrals for the EEG and EKG were more internal. In any case I don't feel like there is anything more I can do at this point.

I totally get this. If she keeps having symptoms or any other events, I would take her to the local ER or if you have a children's hospital local, take her there. Hopefully she can be worked into to see the Neuro much sooner. I would ask to be placed on a cancellation list and call every day to see if an appt opens up in the meantime.

It doesn't surprise me that the nurse downplayed the vaccine connection. :shake:

Sending big hugs. :hug:

[citymama]

Sending many good thoughts your DDs way. I hope you get some clear answers soon. Please keep us posted.

[JustMe]

Thank you for the support everyone. I have a question for those of you who mentioned that I insist my concern about the vaccine be put in the chart is there a reason it specifically needs to go in the chart? I am sure the nurse did not put that in there. I am sure some of you know that there are a good amount of things out there about exactly this type of reaction from this vaccine, and within the time frame for my daughter. I generally am not one to make that connection, and feel you can find any connection about anything on-line, but this specific reaction is cited as a concern by many.

Not sure if I should wait for the EEG results to report to VAERS? I will wait for the EKG results, which I should have early next week.

[PZMommy]

I'd want it in her chart so she could get a medical excemption from the rest of the series should it ever become a mandatory vaccine. I would not continue with the series of shots. Her reaction is likely to get worse with each one.

[megs4413]

I'm so sorry you're going through this. My DS had a single seizure after his first dose of DTaP and then again after his second dose of DTaP. We went through a similar experience in terms of waiting so long for a neuro referral and testing. My peds' office refused to report to VAERS and told me I'd have to do it myself, but when we did finally see the pediatric neurologist (and DS' testing came back negative for a seizure disorder or other finding) he was more than happy to note DS' chart and fill out a letter stating a medical exemption for the Pertussis vaccine. He never had another seizure and none of our new docs (we have since moved across country) have had any issue with his medical exemption. I hope once you get more info from the neuro, you can get the chart noted appropriately.

Most people don't realize just how hard it is to get a pediatric specialist appointment these days. It really is disheartening as a parent to see your child suffering and needing care and not be able to do anything about it. I hope they can work you into a cancellation spot sooner!

[bigsis]

I'm so sorry your DD is going through this. Prayers for her to get better and that the doctors and caregivers will have the answers soon.

[JustMe]

Update- Dd stayed home Friday butwent to school today. She couldn't make it through first period, feeling dizzy with a bad headache. We are home now. I called the ped's office and left a message asking if her regular ped can get her in today. She still hasn't seen her regular ped, but we have e-mailed. I am considering bringing her to the ER based on some recommendations that maybe she could get faster service, but I tend to doubt it. Since she has seen the dr already, would not come up as being in an emergency state based on the initial tests they would, etc. She has had no seizures or fainting since the first episode.

Can anyone tell me if the dizzy and headache are normal concussion behaviors? I know there is no school avoidance as she is very upset about not being there.

[squimp]

Did they say she had a concussion? When out friends kids have had concussions, they have had a plan for recovery, which included staying home and lying in the dark for a certain number of days or hours per day. I hope you can figure out what is happening. I would also push to see the regular ped.

[JustMe]

Did they say she had a concussion? When out friends kids have had concussions, they have had a plan for recovery, which included staying home and lying in the dark for a certain number of days or hours per day. I hope you can figure out what is happening. I would also push to see the regular ped.

Thanks, when we saw the dr, we did not confirm that she had a concussion. We didn;t have the info that dd hit her head at that time. When I called the ped's office last week and said that I thought she had a concussion they said to treat her as if she didn't feel like I needed to come in for them to confirm that. They said still send her to school, though. I don't have any btdt experience with concussions so any advice is appreciated. Dd did mention something about being very overwhelmed in her class, along with the head hurting and dizzyness this morning, so I am thinking these are typical concussion symptoms?

[R2sweetboys]

Dizziness and headache are absolutely symptoms of a concussion. The nausea she felt the day after is also a symptom. It definitely sounds to me like she has one. I know of a few kids who returned to school on a limited basis initially because the lights, reading, etc exacerbated the symptoms. I would want her screened specifically for a concussion and placed on a concussion protocol. She needs time to heal. I hope you get some clearer answers!

[KpbS]

Dizziness and headache are absolutely symptoms of a concussion. The nausea she felt the day after is also a symptom. It definitely sounds to me like she has one. I know of a few kids who returned to school on a limited basis initially because the lights, reading, etc exacerbated the symptoms. I would want her screened specifically for a concussion and placed on a concussion protocol. She needs time to heal. I hope you get some clearer answers!

Yes to all of this. Take her in to be evaluated. Hang in there!

[R2sweetboys]

Here is a link that might be helpful...:)
http://www.biausa.org/concussion/returntolearning

[California]

Unfortunately those are symptoms of a concussion. Regardless of her opposition to it, this is a time for you to step in as Mom and make her stay home for a few days to let her brain heal. Yes to the darkened, quiet room. She may not be nice to you, she'll no doubt complain- it's boring, she's extra sensitive to light and sound, is easily overwhelmed, and it hurts. My brother went through this as a teen and EVERYTHING bothered him. For example: He wanted it cooler in his room but he couldn't stand the noise of the AC. It was a hard time for him (and my mom!)

Are you able to take time off from work? It's so hard balancing parenting with work when the kids get sick.

ETA: Consider supporting her healing with healthy foods, too. Salmon, flaxseed, fresh fruits and veggies, healthy fats (olive oil and coconut oil, avocados are good too) and lots of water can all help. My DDs surgeon and nurses were amazed by DDs recovery after her appendix burst. I really felt like mtg with a nutritionist in the hospital and getting a diet specifically for DD's needs made a difference. (Of course, your DD is already be getting better food than the standard hospital diet!!)

[JustMe]

Thanks for the link and responses! They are very helpful! After reading them, I am confused about the pediatrician's response. I was told to treat her as a concussion, but not given any specific ideas of what that mean. Also the pediatrician had said to send her to school when we were in the office, although that was before we knew she had a concussion. As I said, we didn't have the info about hitting her head when were in the office.

So, I guess I am wondering --is there a reason to take her to be evaluated for a concussion if the ped. is saying just assume she has one, which seems to be the case. Also, not sure what the eval is like but is it possible she would be better enough to look like she doesn't have one; meaning her eyes don't look weird, her color is better--she just has a bad headache, gets dizzy and naseous with more activity, etc...but would probably look okay in an ER.

FWIW, I think I mentioned that the dr she saw was not her regular, ped but someone in her group. She took a lot of time with dd and seemed very thorough. I have e-mailed with her ped, who says the same thing. I left a message asking to get in with her ped.

[JustMe]

Unfortunately those are symptoms of a concussion. Regardless of her opposition to it, this is a time for you to step in as Mom and make her stay home for a few days to let her brain heal. Yes to the darkened, quiet room. She may not be nice to you, she'll no doubt complain- it's boring, she's extra sensitive to light and sound, is easily overwhelmed, and it hurts. My brother went through this as a teen and EVERYTHING bothered him. For example: He wanted it cooler in his room but he couldn't stand the noise of the AC. It was a hard time for him (and my mom!)

Are you able to take time off from work? It's so hard balancing parenting with work when the kids get sick.

Thanks. I have had to take time off from work because what else can I do? I had arranged for a friend to pick her up today at the regular time, but picked her up myself when I got the call. Ironically, I just changed jobs around the Fall as dd, who has some special needs but very high functioning, was being a lot more independent and was ready to be alone more. In my new job, I only get paid when i work so this is a hardship. Now its hard decisions in every direction because even when she starts feeling better I have a kid who had a seizure and who knows when it will happen again..and they don't exactly have childcare for 14 year olds.

[California]

So true. The unexpected childcare needs are so stressful. She's 14- if it was just a cold she'd be okay on her own bit with seizures that doesn't really work. Any elderly neighbors who are home during the day?

[123LuckyMom]

I'm not loving your pediatrician's response. A concussion is a brain injury. It is a serious condition that requires treatment. It can cause all the symptoms you describe as well as personality changes when it's serious enough, and concussions can take a long time to heal thoroughly. Also, once you've had one concussion you are susceptible to additional and more substantive injury. I don't want to scare you, but this is a big deal! I should say my experience is based on knowledge of grownups who have suffered concussion, and children may heal much more quickly, but I would not take this lightly if I were you. You need to get your daughter to a doctor, one who knows how to evaluate and treat concussions, immediately. Get good advice about a treatment plan which will most certainly involve limited school, if any, and rest in a darkened quiet room as well as follow up appointments for evaluation. It may also involve some physical therapy. I don't know how bad your daughter's concussion is, but, at least for adults who have suffered concussion, it can be six months to a year or more before the concussion has completely and totally healed, and she'll have to be very careful to avoid re-injury.


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[chlobo]

Thanks for the link and responses! They are very helpful! After reading them, I am confused about the pediatrician's response. I was told to treat her as a concussion, but not given any specific ideas of what that mean. Also the pediatrician had said to send her to school when we were in the office, although that was before we knew she had a concussion. As I said, we didn't have the info about hitting her head when were in the office.

So, I guess I am wondering --is there a reason to take her to be evaluated for a concussion if the ped. is saying just assume she has one, which seems to be the case. Also, not sure what the eval is like but is it possible she would be better enough to look like she doesn't have one; meaning her eyes don't look weird, her color is better--she just has a bad headache, gets dizzy and naseous with more activity, etc...but would probably look okay in an ER.

FWIW, I think I mentioned that the dr she saw was not her regular, ped but someone in her group. She took a lot of time with dd and seemed very thorough. I have e-mailed with her ped, who says the same thing. I left a message asking to get in with her ped.

My understanding is that there is a specific concussion protocol that is ever evolving so I would want to get an assessment by a qualified person who could rate the severity of her symptoms and give you a plan of action based on where she is at. I know they used to suggest the whole darkened room thing but I have heard they are moving away from that. however, I would want the info coming from a qualified pediatrics specialist and not us.

[mmsmom]

Thanks for the link and responses! They are very helpful! After reading them, I am confused about the pediatrician's response. I was told to treat her as a concussion, but not given any specific ideas of what that mean. Also the pediatrician had said to send her to school when we were in the office, although that was before we knew she had a concussion. As I said, we didn't have the info about hitting her head when were in the office.

So, I guess I am wondering --is there a reason to take her to be evaluated for a concussion if the ped. is saying just assume she has one, which seems to be the case. Also, not sure what the eval is like but is it possible she would be better enough to look like she doesn't have one; meaning her eyes don't look weird, her color is better--she just has a bad headache, gets dizzy and naseous with more activity, etc...but would probably look okay in an ER.

FWIW, I think I mentioned that the dr she saw was not her regular, ped but someone in her group. She took a lot of time with dd and seemed very thorough. I have e-mailed with her ped, who says the same thing. I left a message asking to get in with her ped.

DS had a concussion a few months ago. There is a standard evaluation his doctor performed which included verbal questions and a physical exam. There is also a very specific recovery protocol based on the severity of the concussion. DS was sent home with a printout with a detailed plan for home along with a letter and plan for school. The most crucial thing is she should not do any sports, gym or other activity where she could potentially hit her head again. It takes time for the brain to heal and rest is the only way to do it. In our case DS was not allowed screentime but could read for brief periods in a 14 point font. These recommendations vary based on the severity of the concussion though. I would insist ped do the concussion evaluation so you can have the information you need for home and school to ensure her recovery.

[lalasmama]

No real help, but I can tell you a good adult friend sustained a concussion maybe 6 weeks ago, as part of a car accident. She's still only able to work part time, and anything mental is physically exhausting for her. She's had some expressive language issues as well. So, I'm assuming what your DD is experiencing is normal for a concussion, because that's what my friend was told was normal as well. But of course, that's only anecdotal.

From my medical assisting background... As far as the vaccine, vasovagal syncope is common after the Gardasil. And in teens in general. That's why many offices require kids to stay for 15 minutes afterward. But, I feel like the vaccine is also often blamed for the common-ish vasovagal response in the teen patient. Does that make sense? Kinda like parents assuming every rash after the chicken pox vaccine is chicken pox. If it was Tdap kids were getting at 12-13-14-15, I'm sure there would be more negative press about fainting weeks after administration as well.

I know the area you live in (Inthink we've discussed it before), and my office refers people to your area all the time. Current wait for the neurologist we use more commonly (associated with the big medical system in that area) is often MANY weeks out. Like 3-5 weeks for him to accept the case at all, then additional time to get scheduled.

[JustMe]

No real help, but I can tell you a good adult friend sustained a concussion maybe 6 weeks ago, as part of a car accident. She's still only able to work part time, and anything mental is physically exhausting for her. She's had some expressive language issues as well. So, I'm assuming what your DD is experiencing is normal for a concussion, because that's what my friend was told was normal as well. But of course, that's only anecdotal.

From my medical assisting background... As far as the vaccine, vasovagal syncope is common after the Gardasil. And in teens in general. That's why many offices require kids to stay for 15 minutes afterward. But, I feel like the vaccine is also often blamed for the common-ish vasovagal response in the teen patient. Does that make sense? Kinda like parents assuming every rash after the chicken pox vaccine is chicken pox. If it was Tdap kids were getting at 12-13-14-15, I'm sure there would be more negative press about fainting weeks after administration as well.

I know the area you live in (Inthink we've discussed it before), and my office refers people to your area all the time. Current wait for the neurologist we use more commonly (associated with the big medical system in that area) is often MANY weeks out. Like 3-5 weeks for him to accept the case at all, then additional time to get scheduled.

Thanks for all of the responses including the above. I am mostly not sure while the ped's office didn't give us a more thorough concussion recovery plan...I think all else was probably good since they did examine her pretty thoroughly. Anyway, I know this is between me and the dr as opposed and there's only so much you all can do, so we will see how it goes..I will try to get her into her regular ped to discuss this.

Lalasmom, I agree that vaccines get blamed for a lot of things that just tend to happen. Just not sure what to make of the fact that it did happen 2 weeks after (and I know if it happened immediately or shortly after that would be different) with no other changes. I know seizures can develop in adolescence for other/unexplained reasons. I guess all I can do at this point is to decide not to do the second dose.

Thanks for your input regarding the wait time for the neurologist. That was my impression as well, so I think probably everything is being done that can be done in that regard.

[mackmama]

I'm very sorry to hear your DD is still struggling. I agree with others - make your DD stay home and quiet for now. I'm confused why you were told to assume a concussion but were not given specific instructions. Why hasn't your regular pedi hasn't seen her yet - has there not been time in the pedi's schedule? I'd be insisting to see the regular pedi asap (which it sounds like you're doing). Has anyone suggested a brain MRI? I'd be leaning toward the ER but I'd want to talk to the regular pedi first. Ask your pedi specifically what she would do (or who she would see) if this was her daughter.

[JustMe]

I'm very sorry to hear your DD is still struggling. I agree with others - make your DD stay home and quiet for now. I'm confused why you were told to assume a concussion but were not given specific instructions. Why hasn't your regular pedi hasn't seen her yet - has there not been time in the pedi's schedule? I'd be insisting to see the regular pedi asap (which it sounds like you're doing). Has anyone suggested a brain MRI? I'd be leaning toward the ER but I'd want to talk to the regular pedi first. Ask your pedi specifically what she would do (or who she would see) if this was her daughter.

Thanks. I think the ped just trusts the other ped in her group and I had e-mailed with the regular ped after she saw the other dr. The regular ped did say to call at the end of last week and they would get her in if dd was worse, but she was not worse so I did not call then. That said, I called earlier today and asked to get in. I just got a call back and they will see her tomorrow. FWIW, my ped is only part-time, which I have always known, and so of course relies on her colleagues at times. We have had these ped since dd was about 15 months and she is great about e-mailing,etc. So far I have always felt things were handled well throughout my kids' lives but I agree this concussion thing is confusing in terms of how I have not received instructions. I feel good knowing I will see the regular ped tomorrow. We won't see her until the afternoon. They did offer me a morning appointment, but I don't think its going to make that much of a difference and was logistically hard for me with my other child to make the morning appointment work.

[mackmama]

Thanks. I think the ped just trusts the other ped in her group and I had e-mailed with the regular ped after she saw the other dr. The regular ped did say to call at the end of last week and they would get her in if dd was worse, but she was not worse so I did not call then. That said, I called earlier today and asked to get in. I just got a call back and they will see her tomorrow. FWIW, my ped is only part-time, which I have always known, and so of course relies on her colleagues at times. We have had these ped since dd was about 15 months and she is great about e-mailing,etc. So far I have always felt things were handled well throughout my kids' lives but I agree this concussion thing is confusing in terms of how I have not received instructions. I feel good knowing I will see the regular ped tomorrow. We won't see her until the afternoon. They did offer me a morning appointment, but I don't think its going to make that much of a difference and was logistically hard for me with my other child to make the morning appointment work.

I'm glad you've got an appointment. I might call the office right now and ask if you could speak with your pedi today (and keep tomorrow's appt) if there are any questions/concerns you have that you don't want to ask in front of your DD tomorrow. Specifically I'd want to know what would constitute the need to go to the ER. You don't want to worry your DD, so I'd also ask the pedi what she'd do if it were her daughter (in terms of getting a brain MRI or CT scan or seeing any other specialists), etc. Hang in there, Mama. You are on top of it, now just trust your gut and keep your daughter quiet even if she complains.

[Kindra178]

My son (younger, age 8) suffered a concussion in February after a simple game of basement football. The head bump wasn't that big or seemingly any different than every day nonsense at our house. Dizziness, severe headache, unexplained vomiting with no stomachache and pronounced sensitivity to light were his main symptoms. Three different doctors at the pediatric er performed 4 sets of neuro testing. We had to follow up with the ped the next day. When referred to the er, the ped made very clear she didn't want him scanned. The treatment was 1-3 days in a dark room, no screens, no books, no nothing. My understanding is that if he were only a few years older, the treatment would be 1-2 weeks of nothing. Are you sure there was a head bump? I guess I am baffled as to how the other ped didn't treat the concussion.

[JustMe]

My son (younger, age 8) suffered a concussion in February after a simple game of basement football. The head bump wasn't that big or seemingly any different than every day nonsense at our house. Dizziness, severe headache, unexplained vomiting with no stomachache and pronounced sensitivity to light were his main symptoms. Three different doctors at the pediatric er performed 4 sets of neuro testing. We had to follow up with the ped the next day. When referred to the er, the ped made very clear she didn't want him scanned. The treatment was 1-3 days in a dark room, no screens, no books, no nothing. My understanding is that if he were only a few years older, the treatment would be 1-2 weeks of nothing. Are you sure there was a head bump? I guess I am baffled as to how the other ped didn't treat the concussion.


Thanks, yes we have confirmed she has bumped her head twice. Maybe the other ped assumed I knew more about concussions than I do? When we saw her, we weren't thinking that was the case as we didn't have all the info about what happened. She actually called the teacher who witnessed it herself, which helped to get more info, and then called me with the info that she thought it was a concussion...so all of that seemed right. She did tell me to watch her and she was not sure what recovery would be like. Still not sure why no more specific plan. Anyway, will see our ped tomorrow.

Also, was able to speak to a friend of a friend who is a retired nurse and worked in the ER. She knows dd and is fond of her, so I think we are getting good advice. She said the ER would not have her see a neurologist or do anything else signifcant at this point, unless she had a seizure in front of them or I told them she blacked out for a long period of time. She thinks I need to give the concussion about 6 days and go forward based on how dd takes activity. She says if dd still has these symptoms after 6days from now that I should ask for a CT scan, but otherwise she was happy with what had been ordered. We'll see...

[California]

Kindra made me think of this: Specific to our local area, doctors are much less likely to order pediatric scans now to avoid the radiation exposure. Radiation-free MRIs are not always available (especially not at night.) It's possible your doctor avoided ordering one to skip the radiation. But, that's still no excuse for not giving you more information on how to treat a concussion.

[JustMe]

But, that's still no excuse for not giving you more information on how to treat a concussion.

Yes, I think that has been the disconnect here. Everything else is sounding like it has been done as it should.

[mmsmom]

Yes, I think that has been the disconnect here. Everything else is sounding like it has been done as it should.

Yes, scans are no longer recommended for a concussion but the ped should have given you information on how to treat and also information for the school.

[newnana]

one other thing I haven't seen mentioned here is the emotional roller coaster concussions can cause. Granted, in many cases teen= emotional roller coaster, but with concussions, that can escalate. My niece had a terrible concussion last year and was not herself for a long time afterwards. She's a nationally recognized distance runner and does well academically. The stress of not competing and worries about school made her completely distraught. On top of that, she has enough self awareness to know that she was being hypersensitive. She was moodier and more down than normal, coupled with anxiety over her college prospects. With DN, treating her with kid gloves was the best approach: loads of hugs and reassurance and space when she needed it. We all went straight back to toddler mode for her and it really seemed to help. Every kid and concussion is different, but just something to keep on your radar, especially if you feel like she's acting uncharacteristically.

[PunkyBoo]

one other thing I haven't seen mentioned here is the emotional roller coaster concussions can cause. Granted, in many cases teen= emotional roller coaster, but with concussions, that can escalate. My niece had a terrible concussion last year and was not herself for a long time afterwards. She's a nationally recognized distance runner and does well academically. The stress of not competing and worries about school made her completely distraught. On top of that, she has enough self awareness to know that she was being hypersensitive. She was moodier and more down than normal, coupled with anxiety over her college prospects. With DN, treating her with kid gloves was the best approach: loads of hugs and reassurance and space when she needed it. We all went straight back to toddler mode for her and it really seemed to help. Every kid and concussion is different, but just something to keep on your radar, especially if you feel like she's acting uncharacteristically.
My DS1 sustained a bad concussion at the end of October. He tried to keep up at school but was very dizzy, memory losses, unable to concentrate... He even fell down several times at school but would forget to tell me or would feel panicky at school and not know that the right thing to do would be go to the nurse office. Eventually the dr took him out of school and he ended up home on"full cognitive rest" for about 6 weeks. (Fortunately the thanksgiving and Christmas breaks were in there so total school lost was a bit less). The school district sent us a home teacher for 4 weeks to keep him caught up at his pace. We did take him to a neurologist, who prescribed an anti depression medication for the concussion, and it turned out my son had a horrible reaction to it (almost a week of complete paranoid hallucinations). But, to echo what PP said, one of the hardest symptoms for us was anxiety and depression. Life's hard enough for a young teen, but this was the hardest. He's still seeing a therapist to help him get back to normal. So frankly I don't think seeing the neurologist was any real help to us, but the therapist had been vital.

[JustMe]

Thanks for the info on the emotional aspect of things. This will be interesting, for sure. Since dd has learning disabilities, these would not be new experiences for her, but OTOH she certainly does not need more of that on top of what she has already dealt with. OTOH, so far I don't see a difference in mood, personality, etc. Of course, we haven't gotten to the point where we see that she is not able to do what she used to do on a longer term basis so we will see what happens if that is the case.

[liz]

Sending P&PT for you and DD :hug:

[JustMe]

So, we got into our ped today. It went really well, and I was reminded why we stay with her even though she is part-time, etc. She confirmed the concussion diagnosis, wrote a letter for gradual return to school (mostly abstaining from band, choir, and any intense physical activity..the ped said she was already past the point where she should stay out of school completely, which I agree with). She also informed dd that she can't go on a band trip later this week as she will not be ready. Poor dd is devastated but does get it. It was nice not to be the "bad guy" for once.

She said if dd is not better in one week from now, she will refer her to a concussion specialist. As far as the initial incident, I told her I was concerned there may be a Gardasel vaccine connection to the fainting/seizure and she said she did not think that was out of the realm of possiblity; that she couldn't say it was but couldn't say it wasn't. She is reporting it and putting it in dd's chart.

As far as the neuro appointment being booked so far out (in fact it isnt even booked yet because of their crazy referral process, but he is currently booked until mid-June, so I think we're talking July), she said that he does review the EEG when they are done even though the appt is some time out. She said that she gets information indicating if the results are normal or not, and if they are not normal/concerning, she would be calling and asking about getting dd in sooner.

Dd is also doing better for longer periods of time.

All of that is good. Bad news is I am a a mess of stress. In addition to the obvious, due to dd's unique special needs that are invisible to most, I am frequently bombarded with people telling me how I should parent her or just acting in ways thta indicate that I am a crazy parent and they know dd a lot better than I do (the ped. doesn't fall into this category, but many at dd's school do). This has exasperated those feelings. And ds is stressed about this whole situation too, which means more stress for this mama.

[mackmama]

So, we got into our ped today. It went really well, and I was reminded why we stay with her even though she is part-time, etc. She confirmed the concussion diagnosis, wrote a letter for gradual return to school (mostly abstaining from band, choir, and any intense physical activity..the ped said she was already past the point where she should stay out of school completely, which I agree with). She also informed dd that she can't go on a band trip later this week as she will not be ready. Poor dd is devastated but does get it. It was nice not to be the "bad guy" for once.

She said if dd is not better in one week from now, she will refer her to a concussion specialist. As far as the initial incident, I told her I was concerned there may be a Gardasel vaccine connection to the fainting/seizure and she said she did not think that was out of the realm of possiblity; that she couldn't say it was but couldn't say it wasn't. She is reporting it and putting it in dd's chart.

As far as the neuro appointment being booked so far out (in fact it isnt even booked yet because of their crazy referral process, but he is currently booked until mid-June, so I think we're talking July), she said that he does review the EEG when they are done even though the appt is some time out. She said that she gets information indicating if the results are normal or not, and if they are not normal/concerning, she would be calling and asking about getting dd in sooner.

Dd is also doing better for longer periods of time.

All of that is good. Bad news is I am a a mess of stress. In addition to the obvious, due to dd's unique special needs that are invisible to most, I am frequently bombarded with people telling me how I should parent her or just acting in ways thta indicate that I am a crazy parent and they know dd a lot better than I do (the ped. doesn't fall into this category, but many at dd's school do). This has exasperated those feelings. And ds is stressed about this whole situation too, which means more stress for this mama.

All positive news re your DD. I'm so glad to read your update and can see why you love your pedi. I hear the reassurance you feel after seeing her which is great.

Re your stress levels - let me be blunt: screw everyone else. YOU know your DD and how best to parent her. You don't need the extra stress right now, so remind yourself to trust your gut, be yourself, and screw anyone else's judgement. It's not your job to try to convince anyone else that you know what's right or that they don't have all of the info. It doesn't matter. What matters is you and your kids and your well-being. Even though they are likely well-intentioned, it's not helpful to you if it's causing you stress - which it sounds like it is. Time to practice "Thanks for your thoughts" or "thanks for caring so much, we all love DD so much" and then move on literally and figuratively. People often give advice when they don't know what else to say or do, but it can really miss the mark when all you need is love, support, assurance, and acceptance. So give that to yourself right now, Mama, and tell everyone else to back off... and don't carry it yourself.

Do you have other support you can call on right now so you it's not all on your shoulders? Or maybe you can ease your stress a bit by taking other stuff off your plate. Have your groceries delivered, let your house get messy, order delivery meals, do some jumping jacks, ask your DS's friends if he can come over for a playdate or a sleepover, or read a trashy novel for 10 minutes after the kids are asleep. Keep sharing here... we are here.

[mackmama]

duplicate somehow

[mom2binsd]

When my DD had a concussion this winter the neurologist who specializes in concussions prescribed vitamin therapy for about a month, it included fish oil, green tea extract, b3, and another one, did the pediatrician suggest something like that. Google has a lot of information about why these vitamins are helpful in concussion recovery.

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[KpbS]

All positive news re your DD. I'm so glad to read your update and can see why you love your pedi. I hear the reassurance you feel after seeing her which is great.

Re your stress levels - let me be blunt: screw everyone else. YOU know your DD and how best to parent her. You don't need the extra stress right now, so remind yourself to trust your gut, be yourself, and screw anyone else's judgement. It's not your job to try to convince anyone else that you know what's right or that they don't have all of the info. It doesn't matter. What matters is you and your kids and your well-being. Even though they are likely well-intentioned, it's not helpful to you if it's causing you stress - which it sounds like it is. Time to practice "Thanks for your thoughts" or "thanks for caring so much, we all love DD so much" and then move on literally and figuratively. People often give advice when they don't know what else to say or do, but it can really miss the mark when all you need is love, support, assurance, and acceptance. So give that to yourself right now, Mama, and tell everyone else to back off... and don't carry it yourself.

Do you have other support you can call on right now so you it's not all on your shoulders? Or maybe you can ease your stress a bit by taking other stuff off your plate. Have your groceries delivered, let your house get messy, order delivery meals, do some jumping jacks, ask your DS's friends if he can come over for a playdate or a sleepover, or read a trashy novel for 10 minutes after the kids are asleep. Keep sharing here... we are here.

Yes to all of the above! It is plain difficult to parent a child who has different needs and if you haven't done it, you have NO IDEA. Don't let the turkeys get you down!!! Try to have some special time with just DD and just DS one on one (even if it is just a simple meal out) and just enjoy one another. Let them talk to you about their fears, their hopes, etc. You are doing a great job, hang in there!!! :hug:

[AnnieW625]

Thank you for the update. Take care of yourself and best wishes to you.


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[JustMe]

Thank you everyone for the support. Dd is starting to look much better, which is a relief. She is so sad about not going on her trip today; she had a part in the band performance that had to be given away to someone else which is soo sad. This is a kid who does not do well academically, and band is her place to both excel and be a normal kid. OTOH, I am not seeing new fears develop or confidence drop so far. I know we are early in the concussion recover prcocess, but dd has a history of struggling with these issues and it can take much less than this to have things become extreme. In her mind, the seizure/fainting episode was a fluke. I hope she will continue to progress with the concussion recovery and we will see how she goes.

I am trying to catch my breath as I am seeing lots of signs of my own stress. Can't wait for the weekend to breathe a little more easily.

[JustMe]

Update: Its been about 5 weeks not and things are not so great. Dd's symptoms of dizzyness, headaches, sensitivity to noise and activity, and some cognitive concerns are still very much present. She is seeing a concussion specialist who is referring her to PT and possibly a neuropsych. I do feel fortunate we have this dr in our relatively small city, as he does seem to be a specialist who is very thorough and knows his stuff.

I just got results from the EEG back today, and there was some abnormal activity when she was falling asleep. Now she has to have an MRI.

I do think everyone seems to be very thorough, but I sure don't know a whole lot about this area. Also, it does concern me that she had the Gardisel vaccine 2 weeks before, there were no other changes for her, and she had never had anything like this before. Please send PTs, mojo, prayers..anything.

[pinkmomagain]

Update: Its been about 5 weeks not and things are not so great. Dd's symptoms of dizzyness, headaches, sensitivity to noise and activity, and some cognitive concerns are still very much present. She is seeing a concussion specialist who is referring her to PT and possibly a neuropsych. I do feel fortunate we have this dr in our relatively small city, as he does seem to be a specialist who is very thorough and knows his stuff.

I just got results from the EEG back today, and there was some abnormal activity when she was falling asleep. Now she has to have an MRI.

I do think everyone seems to be very thorough, but I sure don't know a whole lot about this area. Also, it does concern me that she had the Gardisel vaccine 2 weeks before, there were no other changes for her, and she had never had anything like this before. Please send PTs, mojo, prayers..anything.

Sending positive thoughts. Hope you get answers and she is soon feeling well again!

[ArizonaGirl]

P and PTs headed ur way.

[niccig]

Lots of PTTs coming your way. Have DD rest and not push herself. Fingers crossed you get answers soon


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[marinkitty]

I'm sorry to be seeing this so late, but if your DD is still suffering concussion symptoms, check to see if there is a hyperbaric treatment facility near you and see about having her to a series of "dives" where they put her in the chamber and bring her down to a couple of atmospheres for pressure. It is really amazing how fast it can speed healing (though more improvement if done quickly post-injury). This is a fairly new thing and just gaining recognition but it has become a popular thing there and I know several families who felt their kids with serious concussions bounced back much more quickly with this treatment. One, like your DD, didn't start treatment until a several weeks post-concussion but they still felt it gave substantial benefits. It definitely wouldn't hurt if you have access to one nearby. I did it for a pre-operative session last week (to inhibit inflammation and promote faster healing) and it is actually super relaxing - you just lay down and watch Netflix for an hour and a half and clear your ears now and then just like flying.

[JustMe]

I'm sorry to be seeing this so late, but if your DD is still suffering concussion symptoms, check to see if there is a hyperbaric treatment facility near you and see about having her to a series of "dives" where they put her in the chamber and bring her down to a couple of atmospheres for pressure. It is really amazing how fast it can speed healing (though more improvement if done quickly post-injury). This is a fairly new thing and just gaining recognition but it has become a popular thing there and I know several families who felt their kids with serious concussions bounced back much more quickly with this treatment. One, like your DD, didn't start treatment until a several weeks post-concussion but they still felt it gave substantial benefits. It definitely wouldn't hurt if you have access to one nearby. I did it for a pre-operative session last week (to inhibit inflammation and promote faster healing) and it is actually super relaxing - you just lay down and watch Netflix for an hour and a half and clear your ears now and then just like flying.



Thanks. I will look into this. I am wondering if it is counterinducated since her EEG results came back abnormal? I have to call the dr again because I was so caught off-guard that I didn't know what questions to ask and am nor even sure what was said!

[mom2binsd]

Did your neurologist ever prescribe a course of vitamin therapy following the diagnosis, my DD, and a few other kids around here were given a month of 4 different vitamins (fish oil, green tea, etc and they all had pretty good recoveries). The neurologist is becoming the local concussion guru. I have also heard hyperbaric therapy can be beneficial.

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[Simon]

I'm sorry to hear you aren't seeing as much progress as you would like. As a parent it can be so hard when our kids aren't well. A few things you wrote about made me think of this, so I am going to throw this out there. You might consider/discuss with her medical team whether her symptoms fit with POTS (http://www.chop.edu/conditions-diseases/postural-orthostatic-tachycardia-syndrome-pots). Our family has met several teen girls who started with stories similar to yours and who all took a long time to get to this diagnosis because the symptoms are so diverse, mimic other more common conditions, and can come and go. Regardless, I hope you find get some good news soon!

[JustMe]

I'm sorry to hear you aren't seeing as much progress as you would like. As a parent it can be so hard when our kids aren't well. A few things you wrote about made me think of this, so I am going to throw this out there. You might consider/discuss with her medical team whether her symptoms fit with POTS (http://www.chop.edu/conditions-diseases/postural-orthostatic-tachycardia-syndrome-pots). Our family has met several teen girls who started with stories similar to yours and who all took a long time to get to this diagnosis because the symptoms are so diverse, mimic other more common conditions, and can come and go. Regardless, I hope you find get some good news soon!


I have been concerned about POTS, ever since I googled her symptoms and that's what came up. Otoh, her symptoms fit with a concussion (other than the original fainting/seizure episode that caused the concussion). Her EKG was normal. Is this the case with POTS or is it only abnormal when they are having an episode? And, POTS is frequently listed as a negative consequence of the Gardisel vaccine, which she had 2 weeks before her episode.

As far as if the neurologist has talked about a vitamin regime, we have not been to the neurologist yet. Just got the EEG results Fri evening and the neuro. appt is not until the end of June. The ped said she is calling his office to see if they can move it up since the results of the EEG were abnormal.

[Melbel]

I am so sorry your daughter is struggling. When there is a suspected vaccine injury, consider Lyme as part of the differential diagnosis, particularly if the child had preexisting clusters of medical issues. Our son's crash was 2 weeks after Menactra/DTaP at 11. Lyme causes immune dysfunction making adverse reactions more likely. In a very large parents group I moderate, vaccine injuries in kids with undiagnosed Lyme is very common.

POTS is also common with Lyme and part of my son's presentation.

He had a more serious concussion last fall and had to miss 4 weeks of school and then part time for 2 more weeks. He saw a concussion specialist who no longer recommends dark room, but did not allow close screen time.

Seizures are also seen with Lyme, as well as a co-infection Bartonella.

You will see significant overlap in concussion/Lyme symptoms because the common denominator is brain inflammation. I recommend a low inflammation diet (very low gluten, dairy, sugar) and consider using turmeric as a natural anti-inflammatory. Given the past medical history of symptoms, I would definitely look for underlying infections, preferably with an ILADS trained physician. www.ilads.org.

Symptoms: http://lymediseasechallenge.org/symptoms/
Guidance on Testing: http://lymediseasechallenge.org/testing/
Lyme/Gardasil case report that hit home for us, although our son was triggered with different vaccines: http://sanevax.org/gardasil-decision-will-always-regret/

[megs4413]

DD1 was diagnosed POTS earlier this year after a fainting episode. She did hit her head when she fell, but she didn't have any concussion symptoms so I can't speak to that at all. We saw a cardiologist that confirmed the diagnosis that was made in the ER of POTS. In our case, it's the way the heart rate shoots up while the blood pressure drops rapidly upon changing position that made the diagnosis, so it really didn't have anything to do with her EKG or echo. She has mood-related symptoms, brain fog, fatigue, dizziness, nausea, headache, and anxiety. We've been referred to the POTS clinic at Mayo and have our appointment there in early august. Treatment-wise right now, she is on a high sodium diet with lots of water intake to increase her blood volume. She's also taken an SSRI that has been shown to help with POTS, though they don't know why it works. She also has some exercises that we do. She has improved some, but we still have a long way to go, which is why we're headed to mayo. It makes school really tough. She's also been diagnosed with Ehlers-Danlos Syndrome and Celiac disease this year, which are both related to POTS. I don't know if I can help at all, but feel free to send me a message.

[wendibird22]

DD1 was diagnosed POTS earlier this year after a fainting episode. She did hit her head when she fell, but she didn't have any concussion symptoms so I can't speak to that at all. We saw a cardiologist that confirmed the diagnosis that was made in the ER of POTS. In our case, it's the way the heart rate shoots up while the blood pressure drops rapidly upon changing position that made the diagnosis, so it really didn't have anything to do with her EKG or echo. She has mood-related symptoms, brain fog, fatigue, dizziness, nausea, headache, and anxiety. We've been referred to the POTS clinic at Mayo and have our appointment there in early august. Treatment-wise right now, she is on a high sodium diet with lots of water intake to increase her blood volume. She's also taken an SSRI that has been shown to help with POTS, though they don't know why it works. She also has some exercises that we do. She has improved some, but we still have a long way to go, which is why we're headed to mayo. It makes school really tough. She's also been diagnosed with Ehlers-Danlos Syndrome and Celiac disease this year, which are both related to POTS. I don't know if I can help at all, but feel free to send me a message.

As I was reading your post, and a few of the others, my thought was, "Gosh, these symptoms sound a lot like celiac." And then I got to your 2nd to last sentence and saw, bingo, celiac. It's crazy how many different things have such diverse, diffuse, and common symptoms!

OP, since you are trying to rule things out, it might be worth it to add a celiac blood test...super quick/easy and good to rule out as a possible cause.

[JustMe]

OP, since you are trying to rule things out, it might be worth it to add a celiac blood test...super quick/easy and good to rule out as a possible cause.


Celiac? I will research that, but right now I am pretty clueless as to why that would be a diagnosis. Someone mentioned previous symptoms, but she really didn't have any until about 5 weeks ago when she had the seizure/fainting issues. (There are learning issues that have a known cause, but other than that nothing). All her symptoms pretty much started on the day she had that incident...so not really sure if that would fit for us.

[wendibird22]

Celiac? I will research that, but right now I am pretty clueless as to why that would be a diagnosis. Someone mentioned previous symptoms, but she really didn't have any until about 5 weeks ago when she had the seizure/fainting issues. (There are learning issues that have a known cause, but other than that nothing). All her symptoms pretty much started on the day she had that incident...so not really sure if that would fit for us.

Just a file away in the back your mind thing if you can't get to the bottom of the dizziness and other neuro symptoms. Celiac in some people presents only with neuro impact and not any of the "typical" GI disturbances. It can cause headaches/migraine, fainting, brain fog and inability to focus/concentrate, among others. And belief is that celiac is triggered by something (since it's an autoimmune issue) such as illness, trauma, vaccine, etc.

[american_mama]

No advice, but I am thinking about you and hoping thing improve. I've been following the whole thread. What you write and others respond with helps me learn, which might help my own family or another some day.

Hang in there, and post back here when you need to vent or get new perspectives.

[Simon]

I have been concerned about POTS, ever since I googled her symptoms and that's what came up. Otoh, her symptoms fit with a concussion (other than the original fainting/seizure episode that caused the concussion). Her EKG was normal. Is this the case with POTS or is it only abnormal when they are having an episode? And, POTS is frequently listed as a negative consequence of the Gardisel vaccine, which she had 2 weeks before her episode.
IIRC, but don't quote me on it, the EKG can be normal unless they are having an episode, which is why it can be so difficult to nail down. I'm also not sure that its the EKG that is diagnostic, per se, but the whole picture.

[Simon]

DD1 was diagnosed POTS earlier this year after a fainting episode. She did hit her head when she fell, but she didn't have any concussion symptoms so I can't speak to that at all. We saw a cardiologist that confirmed the diagnosis that was made in the ER of POTS. In our case, it's the way the heart rate shoots up while the blood pressure drops rapidly upon changing position that made the diagnosis, so it really didn't have anything to do with her EKG or echo. She has mood-related symptoms, brain fog, fatigue, dizziness, nausea, headache, and anxiety. We've been referred to the POTS clinic at Mayo and have our appointment there in early august. Treatment-wise right now, she is on a high sodium diet with lots of water intake to increase her blood volume. She's also taken an SSRI that has been shown to help with POTS, though they don't know why it works. She also has some exercises that we do. She has improved some, but we still have a long way to go, which is why we're headed to mayo. It makes school really tough. She's also been diagnosed with Ehlers-Danlos Syndrome and Celiac disease this year, which are both related to POTS. I don't know if I can help at all, but feel free to send me a message.

FWIW, we've met families being seen at the Mayo POTS clinic and they were all very, very happy with their medical team and their experience. I hope it goes well for you and your Dd, too!

[megs4413]

FWIW, we've met families being seen at the Mayo POTS clinic and they were all very, very happy with their medical team and their experience. I hope it goes well for you and your Dd, too!

Thank you! We are really hopeful and glad the appointment is so soon!

[magnoliaparadise]

Hi,
No advice, but I just want to send you a big hug and tell you that I am thinking of you and sending prayers and thoughts for your daughter. I hope that you get answers very soon and that your DD feels better.

[Melbel]

FWIW, we've met families being seen at the Mayo POTS clinic and they were all very, very happy with their medical team and their experience. I hope it goes well for you and your Dd, too!

My advice remains to not settle for a "label" diagnosis and dig deeper for a root cause (often infectious). Mayo Clinic has a horrific reputation for Lyme Disease FWIW. They missed my Lyme Disease (noting that I have POTS as well).