New Diagnosis Of "autonomic Dysfunction" For My 12 Yr Old Son

[Kyler]

Hello Everyone

I have been reading many many of your posts for the last 2 days and i have learned alot. I think with all this info i really just need a little bit of support and encouragement. Maybe a few answers also.

2 months ago my 12 yr old son said that his heart was beating really hard right after sitting in the car and when i checked his pulse, it was too fast to count so I dorve to the rescue squad 2 minutes away where i work so that i could check it and within 1 minute it dropped down to a normal range. I took him to the dr and she said "keep an eye on it"-I checked it several times (mostly while sitting) and nothing until last Saturday.

He told me several times in the morning that every time he stood up he felt dizzy and his vision went blurry but i ignored him cuz he's a drama queen. Around noon he walked into the kitchen after sitting on the couch for about an hour and he almost fell and he said "I can't see you Mom". I felt his pulse and it was racing-I used a pulse oximeter that i have for my asthma and it read a HR of 220bpm. I almost passed out!. I had him sit down and it immediately dropped to 110 - I took his BP (I'm a carreer Firefighter /medic) and it was 140/80 - I told him to stand and his HR shot up to 213 and his BP dropped to 110/40. I called the Dr and she said keep him sitting and quiet and I'll call a cardiologist on Monday and she said don't give him any more Concerta-thinking that it was the cause.

I checked again Sunday morning and his HR would only go up to 150-180 when he stood up so i spent the first part of mother's day crying because i am 22 weeks pregnant and i thought that my first baby of 12 years was going to die. We saw the PCP on monday and they did and EKG laying and standing and the rate increased 50 beats and his pressure dropped 14 points with a narrowing pulse pressure. They made a stat appt. with a peds. cardiologist @ the university for Friday - more tears insued throughout the week as he maintained a rate of 140-180 upon standing and I realized that it wasn't the Concerta- he is however asymptomatic at these rates? So on weds. I found info on the net (thank god) describing POTS. This explained the last 2-3 years of my sons life. Symptoms that i never put together -

headaches upon standing ( we labeled them "motion headaches")the PCP said it was a growing issue

uncharachteristic fatigue w/ exercise and requesting 7 pm bedtimes at the age of 10,11,12,

never standing still ,anxiety, intermittant stomach problems, excessive thirst, major heat intolerance,constant clamminess.

So the cardiologis said "his heart looks healthy and it sounds like autonomic dysfunction" i said I read about POTS and he said "oh yeah that posssttural ....... ortho something". I finished the definition and asked him questions about it and he said that Kyler's fatigue is a "lack of conditioning" and has nothing to do with this problem and that it was OK for him to maintain a HR above 150 on a daily basis. This would not stress his body at all. He just needs salt and water. He did not order any tests other than a halter type monitor to "make sure it's not SVT" and that if the results were clear we didn't have to come back. He would not call it anything but autonomic dysfuntion?

Sorry this is getting really long. I feel better reading all of the posts on here because it sounds like a lot of people have gotten the "your just out of shape"comment from doctors. I was just really sad for my son because he said that in front of him and he has tried really hard to be in shape. He is 5'9" and he weighs 153 lbs down from 160 lbs - he has ridden his bike 1 mile a day for six months for a boy scout project and he is beat down tired after it but just as proud as can be.

I think that I found a specialist from this site but it's 2 hours away - OK by me if he's good. I realize that my son has a mild case compared to many others but i was really wondering what everyones experiences are about long term prognosis? Treatment for increased HR being the main component for him? What to tell his school/gym teacher-he got "F"s for "lack of effort all year? Should i push for a TTT for definitive diagnosis or just let it ride on symptoms? How important is it to figure out the exact cause of the POTS-I read that there could several causes? Could he actually be used to a HR of 180 b/c he said he couldn't feel it and he wasn't dizzy?

Sorry this is so lenghty but my head is reeling over all this in addition to my pregnency hormones making me crazy. Thank you in advance.

[janiedelite]

Hi Worried Mom,

Please encourage your son that his problem is not from lack of conditioning, as it seems he is quite active, but due to an actual physiological problem. Please see the specialist, and if he doesn't give you satisfactory answers and testing, then see another one and another one. I'd had 40 dr's appointments when I first got ill within a year, but didn't get the answers I needed til I went to Mayo to see a neurologist who specializes in autonomic dysfunction. It is scary, but please know that most of us with POTS have ups and downs, but generally have stable symptoms. We just have to learn to live with some accomodations and limitations. Keep pushing for your son to get the answers he needs. He's so blessed to have such a persistant and caring mom!!!

[dsdmom]

Ditto thankful's post - see the specialist but if you dont' click with him/her, see another... it seems clear your son's cardiologist is not well-versed in this stuff. Personally I would have him get the TTT and whatever tests you can - QSART, valsalvar...the more info the better. Can you think back to when this started? Did it follow some sort of illness? If so, have him tested for AChR antibodies. There's another antibody test out there now too but I dont' have the info on it yet from my neurologist. And from what I've read/heard, those who get it young have a better chance of outgrowing it. So I'm praying that's the case for your son.

But also - please know that many of us have been told it's deconditioning, or anxiety or something that couldn't be further from the truth. Being as active as possible is important for this, so kudos to your son. But fatigue is very much a part of this as well - so don't let the dr tell you otherwise.

[Kyler]

Thank you both for your encouragement. I told him that this is not his fault and that we - the important people in his life - love him amd know that he works hard to " be in shape" as my son says and that the doctor doesn't understand.

As far as I can tell there was no illness that sparked the symptoms. I think that the cause may be a growth spurt of about 6 inches in the last 3 years-like his body can't keep up. Other than this he has been as healthy as a horse. I just remember taking him to the doctor about 2 years ago for "motion headaches" that only occurred when he stood up - he would grab his head, yell, wait a minute and then he would be fine. I think that they were his first symptoms-around that time he got less interested ion playing outside in the summer heat and his stamina decreased.

I am calling the specialist today to get an appt. His web site says that he is a peds. specialist in all areas of autonomic dysfuntion. Thank you again.

[Broken_Shell]

Hi Worried Mom,

Welcome aboard! I am sorry for what your son is going through - and I imagine it is heart breaking for you as well. I echo what the others said. Autonomic Dysfunction is a complicated and often misunderstood condition, so don't be happy with one medical opinion if it doesn't feel right and you are not getting the answers you need. I hope that you will find a lot of direction and support here on the forum. To offer you some optimistic advice, the individuals who often recover from dysautonomia are usually those that suddenly develop the condition in their teens. You may want to read up on this topic. I believe that there are papers by Dr. Grubb that address this topic. Best wishes. Please let your son know he has our prayers and support.

~ Broken_Shell

[dsdmom]

I also wanted to direct you to dynakids.org - it's a website for kids with dysautonomia. Although it has great info for parents too. And I think there's someone else on here whose son developed this after a growth spurt as well. You may do search on "growth spurt" and see what you find. Hopefully the doc won't have too long a wait. Keep us posted!

[juliegee]

Hi Worried Mom-

My son was also stricken at 12y/o. His symptoms were different from your sons, but equally disabling. He ended up missing almost a year of school. Mack also grew a lot 5"-6" during his sickest period. With the right combo of meds- takes time and trial & error to get there- he's been doing quite well. He was able to return to school full time in the 8th grade. He's a sophomore in HS now and has been attending school full time for the past 3 years.

By all means do the TTT and see a specialist. It'd be great to work out a means of communicating with the specialist (via E-Mail) for follow-up care so that you can forward the E-Mails on to your son's ped to write the prescriptions, etc, order lab tests, etc.

I know it's scary, but chances are that your son will improve dramatically with treatment. My son's symptoms have definately improved, with a lot of waxing and waning along the way. Please PM me if you need moral support.

Big Hugs-

Julie

[Kyler]

Good News, I got an appt. with the specialist for June first. I'm really happy that it didn't take forever.

You guys are really helpful and I feel supported already.

I'm going to push for the TTT but i think that this new guy will probably want one anyway since he specializes in this. Is this test scary or could it be to a 12 year old? I'm worried that he may pass out and be afraid.

I'm a little bit confused? In reading peoples diagnosis I am wondering if POTS and NMH go together ususally. It seems like most people have both. I read about both but it kind of sounded like NMH is a symptom of POTS. Is this true?

I read up on both conditions and I am hopeful that Kyler will outgrow this by his mid twenties.

Just a side note-we found out that we are having a girl today-and so far at 22 wks. she looks healthy. I read that this could be genetically passed on and that 80% of sufferers are women. Does anyone know what the possibility is that the baby may develop it? I don't have it and neither does my husband but I'm not sure about my sons paternal side of the family.

[janiedelite]

Yay! So glad your baby looks like she's healthy. As far as the TTT, it might be a little scary for him because when they stand him up his legs will be strapped in so he can't move and relieve his symptoms. Just reassure him that he probably will feel a lot worse, but that there will be technicians with him who will make sure he is safe, but that they need to actually provoke his symptoms to see what his body is actually going through when he stands up. Some places use an IV and give medication during the test, but most places don't. You could ask the doctor about this, but if he's a pediatric specialist I bet he'll know how to talk with your son and prepare him.

With POTS, our BP's stay the same or go up. With NMH, BP drops. They are both a dysfunction of the nerves that regulate vasoconstriction.

[Rachel]

I'm glad you were able to get an appointment for your son with a specialist, and so soon! I hope that it goes well, and that the doctor has some good ideas for treatment for your son.

I was 15 when I had the tilt table test. It isn't scary. It can be uncomfortable, but only because once you are standing up then you get dizzy, nauseated, weak, etc. It's not an invasive or painful test. If you are calm and positive, that will go a long way in assuring your son and helping him to be comfortable.

POTS and NMH (also called NCS) both fall under the heading of dysautonomia, but they are two separate diagnoses. Some people here have both, but many just have one or the other. POTS is defined by a rise in heart rate of 30bpm or more within 10 minutes of standing. NMH is characterized by a drop in blood pressure. No blood pressure change is necessary for a POTS diagnosis.

Some people have POTS due to genetics, but not everyone. It will be hard, but try not to worry about your baby girl.

I wish you the best. I hope the appointment goes well for your son. I hope that your pregnancy goes well, and that your baby girl arrives safely and healthy.

Rachel

[bkweavers]

Hi Worried Mom,

My heart goes out to you! I know all that you're going thru because our 13 yr. old daughter has had POTS for over 2 years now. I agree with everything that was already said except I also wonder about a sweat test along with the tilt table. My daughter had both of those tests done when she first became ill. I don't know if they need the sweat test to tell if he has an autonomic illness or not, but it's something else to ask the doctor.

Just some advice that I've learned along the way. Don't stop until you find the right doctor for your child!! We had some great doctors at the beginning who diagnosed my daughter very quickly, but we didn't stay with them because they hadn't seen many cases of it. We then went on to have an awful experience with a doctor who I think thought she was God! Finally, I said enough! With someone's help, we ended up seeing Dr. Grubb. All of the time on the computer and the phone was well worth it to know that we were seeing someone who has so much experience with adolescents. It can be so different for adolescents vs. adults with these illnesses.

My prayers go out to you and your son. I'm sure right now you feel like your world is going out of control. In the beginning, I spent so much time online researching this. Sometimes that's a good thing and sometimes it isn't. You can read things that can scare you, so just be careful. Try not to worry about your unborn baby. I know that's hard. I have another daughter who is turning 8 this summer and every once and awhile I worry about her getting it. I try to push that out of my mind because I just need to concentrate on the present and getting my other daughter healthy and keeping our whole family healthy. This forum and others can be a great source of help and comfort. There are very few people out there who know what POTS is and the people here really know what you're going thru.

Feel free to PM me if you have questions or just want to talk. Think of this e-mail as a gigantic hug to you!

Take care and God bless,

Brenda

[bkweavers]

Worried Mom,

Just had some other thoughts while I'm still on this forum.

Start a journal of how your son feels from day to day or however often you can write in it. I started that from the beginning with my daughter and I can't tell you how many times I have referred back to it when doctors have questions about when a med was started, what her symptoms were doing a year ago, etc.

Also, get all your sons medical records in case you end up going to another doctor. I can't tell you how stressful it was to try and get records, x-rays, MRI's etc at the last minute.

Hope any or all of this helps you. Just want you to be as informed as possible so you don't have to go thru the same problems I did. You certainly don't need any extra stress being pregnant! I'll pray for your baby too!

Brenda

[vemee]

Congratulations on the baby and on finding a specialist for your son. I have a daughter with pots and I have had pots since I was a teenager so I can relate to what you are going through. I was also a career firefighter until 5 years ago when my pots became severe and I had to retire and go on disability. My advice is to echo what everyone else has said and to encourage you to push the doctors for treatment. The only way to get treatment may be to bypass the local doctors who do not know anything about the condition or minimize it as a minor condition and go to the doctors that are hooked into the national researchers. When I left work I had a terrible time getting taken seriously. I think you will agree that it isn't good for a firefighter to start passing out while in a burning building. When my daughter was diagnosed we went to a specialist in Fairfax, Va. who gave her medicine that has helped her get her life back. If possible it is good to know the cause but at this time there is not a lot known about the different causes of pots. Your son will need to know how to deal with this condition throughout his life and will have to make career choices knowing that some careers may not be the best suited for his condition. However, if he chooses to take on a physical career such as firefighting he needs to know what his body is can do and how he can cope ( I would usually have to drop to a knee and wait for the syncope to pass before continuing on with the fire). With the proper treatment he may have no limitations. Even with the mild pots of my youth, which was undiagnosed, I managed to get through college, 5 years as a Marine Officer and 13 years as a firefighter with several odd jobs in between. I say that as encouragement to him not as bragging. I was in great shape when my pots went South and I had to leave work so don't let him think it is his fault that he has the disease.

[Kyler]

That is very encouraging-I will pass it on to him. He still thinks that I am crazy for even taking him to a doctor. He told me "if you quit chasing me around checking my pulse then I promise not to die". He keeps saying that this is "normal" for him.I told him that I know that he won't die but I need documentation for the doctor and I need to figure out his bodie's triggers and see if the salt and fluids are working-so far it helps-he stays around 130-150's standing when hydrated. First thing in the AM he still goes 160's to 180's but he says he doesn't feel it? I keep telling him that normally a person's heart rate doesn't jump 60 to 100 beats when they just stand up. Hopefully the specialist can explain it to him and he won't think that I am crazy anymore.

We are also going to a specialist in fairfax. Did you see Dr. Abdullah? He was the only one listed on this site for Virginia.

As far as your career goes, that's awesome that you were able to do all of that. I do mostly EMS because I'm a medic in our dept. and we still supplement the Volunteer fire dept. but the fires that I have fouhgt have been awesome. I was also raised military-my guess is that it was impossible to find a decent military doctor for this. All I had as a child was asthma and they screwed my lungs up permanently by mistreating that. I'm feel really blessed to have good insurance-we don't even need a referral most of the time. My husband just got out of the Navy last year but we used civilian insurance even when we had tricare.

Thank you for the info. and encouragement. Feel fre to pm me if you want to talk more.

[vemee]

Yes we are going to Dr. Abdallah, he is a wonderful Dr. I can relate to your son not feeling the high heart rate I never felt mine until I got to around age 50. I would some times check the pulse ox during equipment check and would be surprised my pulse would be in the 120s. I use to have a heart rate monitor for running but got rid of it because it would keep showing a high heart rate when I felt like I was comfortable running at the pace I was. It wasn't until I got older and the training heart rate range decreased that I started feeling the tachycardia. My last day at work was spent working on building a confined space simulator in Henrico county. All I did was fetch tools and my heart rate was above 165 and I was throwing up. I marked off because I knew I couldn't fight a fire that night. Two weeks earlier I had been the nozzle man in a fire and ended up not being able to pull the hose into the fire room to completely extinguish the fire, I was too weak and was blacking out. After I marked off I got worse so that the symptoms I only felt in full gear and vigorous activity started happening with everyday activities. Good luck with Dr.A he is a very kind and compassionate man. Dr. Abdallah also works with Dr. Grubb, who is in Toledo, Ohio and is one of the leading experts in the field.