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7 Year Old Diagnosed With Pots/syncope


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Hi,

I am new to the board and have really enjoyed reading the posts. I just bought a braclete for my son and he wears it everyday.

My son who is now seven was diagnosed with POTS/Syncope when he was 6. I was told this is VERY uncommon. He had a tilt table test and the test had to be stopped within 8 minutes because of his symtoms. He went from being my active child to laying on the couch all day long. Don't get me wrong he does have a gew good days. He is on 7.5 mg of midodrine every four hours while he is awake. It doesn't seem to be helping all that well. He still has a very high heart rate. With activity it can go as high as 250bpm. His old cardiologist put him on Mestinon which made his symptoms much worse. We then saw a new cardiologist who told me BRaden was fine and to take him off al medicine. Of course, I didn't. We are now seeing a new cardiologist on Tuesday. I just don't want to make my son a guinea pig.

Any suggestions???? Thoughts???

Thanks for letting me share.

Elizabeth

PS - he also has motility problem and is fed through a g-tube at night. He does eat some by mouth. He also has a lot of muscel pain in his legs and feet. He is going to have EMG's done in the next month or two.

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I am so sorry to hear of your little guy's troubles. There is a dynakids site devoted to children with dysautonomia. Maybe someone here can provide the link? There are other members here who have children with dysautonomia (on this site) and I'm sure they can offer you some advice/support. My heart goes out to you and your son- this is a tough thing for adults- it must be especially hard for a child. Hang in there and take care.

Carmen

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I'm sorry you're little one's having to go through all of this. It's hard enough being in my early 20's and having POTS, I can't imagine being a child! I really hope you find a caring doctor. I've had good luck with the staff at Vanderbilt, who keep in touch with my current cardiologist (who also doubles up as my GP).

I noticed your son gets muscle pain in his legs and feet? I do as well and was told it's really vascular pain from my blood pooling and stretching my blood vessels. I've noticed on days when I don't stand at all, I don't have much pain, but on days where I'm more "active" the pain is much worse.

I really hope things start improving for him soon! I've heard that juvenile Dysautonomia usually goes away once they hit adolesence, so hopefully, if I doesn't resolve sooner, it will at least resolve then :)

Hugs,

Lauren

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I am so sorry to hear about your son. I have a 7yr old daughter and I can't imagine what you are going through. I would also try dynakids and see if there are others his age suffering from this horrible illness.

My heart goes out to you and I hope you soon find a good doctor that will help your son.

Dayna

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Elizabeth,

My thoughts and prayers will be with both you and your son next Tuesday, when he sees the cardiologist. What a terrible problem for anyone, let alone a 7 year old to be dx'd with.

I hope that the doctors can find some regimine for your son that improves his symptoms enough to have him return to more "good days" than not. I fully understand your not wanting your son to be used as a pharmasutacal(sp?) guinne pig, I don't like it and I'm 38!

You mentioned in your post, that your son also suffers from pain in his legs and feet. That has been a very challenging symptom of mine too. Unfortunately, the only source of relief I've found is to rely heavily on pain medication (vicodin 4 times a day).

I can't imagine that they would introduce such a harsh pain management routine for a 7 year old, as they have with me, however, I'd be interested in knowing how your son finds relief for his leg/foot pain. I can only tell you that the pain is somthing you can't imagine being as bad as it is, until you experience it first hand. Let's hope that never happens.

Out of curiosity, and maybe I missed it in your post, what are the doctors saying was the trigger for your sons dysautonomia issues? Was it viral or hereditary? Just wondering. :)

Hang in there and let us know how all goes,

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There are plenty of kids diagnosed with POTS as well as Familial Dysautonomia--although it's possible that your doctor doesn't see all that many. There are docs who specialize in pediatric dysautonomia patients--at least a few that I can think of here on the East Coast.

Nina

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My heart goes out to you. I hope you find some sort of releif on this forum or on the kids forum.

Best wishes,

Amber

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I just want to say welcome. Any I am so sorry to hear that your son has to go thought all this at that young of an age. I wish you and your son the best.

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  • 8 months later...

I'm so sorry about your son. I understand what he's going through (as I'm sure most of the people here can also). I've had POTS since I was 8 or 9 (I'm now 17) and have had to go through (and still am going through) problems with the school, doctors and people who just generally don't understand and have no concept of how hard it is to be so young and have such problems. If you need to talk or have questions, please feel free to send me a message (or you can send it to my mom at this account also) and we'll do whatever we can to help. Good luck!

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hi elizabeth,

i am sorry your little one has so much going on. he must be a very courageous little boy!!! as others have let you know, dynakids will be a great support for him, and for you . . . there's all os US to help you answer your questions and how to deal with a potsy life!!! there are several moms of "potskids" around, i am sure they know how you must feel!

welcome to our GREAT dysautonomia group!

corina :blink:

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Hi Elizabeth!

We previously met on the Pediatric Network Forum for OI, FM, and CFS. It's great to see you here. I'm Mack's Mom. He's 14 y/o and doing so much better. He also had motility problems and an OI- NMH.

I see that many have referred you to Dynakids, which is great, but there is no place on that site to offer support/information to parents. The only forum is for the kids themselves. My son, a typical boy, was never into communicating with others with the same illness. He'd much rather play PS-2 or skateboard when he could! At 7 y/o, I doubt Braden will be into the forum either. That being said, I'm sure you can peruse and glean some useful information from the site.

The best thing that I can recommend for Braden is to try to get help from a major teaching hospital, like Johns Hopkins or Mayo Clinic. We did that for Mack. And the docs were so wonderful. We rarely had to travel there. Much was done here at home via phone calls and E-Mails. I forgot where you guys live, but feel free to PM me here and I'll be happy to hook you up with the doctors at Hopkins. We started with a pediatric motility specialist, who was able to open the door for Mack to see Dr. Peter Rowe there. Dr. Rowe has been a gem, guiding Mack's treatment, even though we've only met him once.

All the best to you-

Julie

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Welcome Elizabeth,

So sorry to hear about your son. The news is hard to take for any parent. I know, mine was just dx this month but she is 15. I know how it is affecting her life, I can't imagine what you are going through with a 7 year old. The heartache is the same for all of us with children that have POTS or any of the dysautonomia disorders.

Now sure where you live...east coast, west coast, middle.....but there are a lot of excellent doctors out there for our kids. Julie was right about Dr. Rowe at John Hopkins. He treated my daughter when she was 6 for food allergies and thanks to Julie's info Anna just seen him march 6th and was dx with pots. He is wonderful. We are lucky enough to live about 1-1/2 hours away from John Hopkins, but he still does a lot by phone/e-mail to save you running. He is wonderful and Anna really likes him as well. The point being, no matter where you live, I'm sure someone on this site will recommend a doctor for you to take your son to. Most of us have been through the ringers with doctors and know who to see and who not to see.

Anyway..before I ramble to long....glad you found us and hope we can help you in anyway you need.

Nolie

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