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children with dysautonomia


lisamac
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hello everyone , my name is lisa. i have a 5 year old son who may have dysautonomia . we live in canada and have had a hard time being diagnosis with anything . the doctors just keep dealing with his symptoms. he first became ill when he was a baby . he had lots of colds and was hospitalized a few times . when he was 7 months old he started having breath-holding spells . these spells made me crazy . he would have anywhere from 1 to 10 spells a day. what was happening was he would hurt himself or be tired and would have a flight or fright type of reaction. he would not be able to catch his breath ,have what looked like a siezure,and then pass out . as a mom i knew there was something wrong with him .we went from doctor to doctor but no answers . when he was 2 years old he had some benadryl,that was the worst spell ever .he was out for almost 5 mins. after that we had a loop recorded implanted to see what his heart was doing durning these spells . his heart was pausing anywhere from 7 to 15 seconds a spell . soon after he had a pacemaker implanted . it has helped with his spells .

my son has had many other problems , vision loss ,stomache pain ,headaches , low blood pressure , fast heart rate ,poor color ,chest pain ,senitive to medications tired all the time , i could go on and on with symptoms that come and go . i'm so glad to have found this fourm . we have appointment with dr.grubb in may . i sure hope he can help us .

thank-you

lisa

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I hope that you're able to get some answers from Dr. Grubb. Also, there are some docs who specialize in pediactric dysautonomia, such as Dr. Julian Stewart.

Nina :)

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:) I can only imagine a child with this illness, it's so frustrating when it is your own body but a child has a hard time telling you what is wrong. My heart goes out to you ! I only pray that my daughters dont end up with this! A good Dr can mean the world of difference in his quality of life so make sure that is what you get!!! You're in my prayers and be strong because the more you learn about this stuff the more help you are to him!!!
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thank you for the replies , we now have some good doctor who are doing some more reseach to help us with treatment or help us pay the medical expenses . we live on the west coast so to have to travel to dr.grubb is going to be a long haul . where is dr.stewart ? maybe she/he is closer to us. i don't know but do you have periods of diffrent symptoms that come and go ? right now jonathan has no appetite, tired ,some vision loss ( only in the morning when he wakes up . this last maybe a minute or two ), bad stomache pains ,blood pressure and heart rate all over the place .the older he gets the more he can explain his symptoms . i really would like to get help befor september, he will be starting grade 1. right now he has a hard time just making 2 half hours of kindergarten . thanks again

lisa

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Dr. Stewart is in NY state.

http://www.nymc.edu/fhp/centers/syncope/J_Stewart.htm

You may want to check out the rest of the physician's list here:

http://www.dinet.org/physicians.htm

As for symptoms, mornings are typically worse as most folks tend to have lowest bp in the am, upon waking. Visual greying out is typical of POTS and other dysautonomia. You should probably read the main DINET site section here:

http://www.dinet.org/symptoms.htm

Also, there is a special network just for kids and their caregivers:

http://www.dynakids.org/index.jsp

I hope you're able to find an accurate dianosis and treatments for your son that work. Nina :)

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You took the words right out of my ... mouth.... hands? I guess on the computer! :) DYNAKids.org is a great bunch of people. You just have to find the right ones that fit with you and your son. Since he's little he can be a part of the postal mail program instead of the computer group, so he can get letters and cards by mail, or e-mails for him can be sent to your e-mail, you would be reading most of it to him I expect, so either way would work now that I think about it. I would reccomend Dr. Abdallah, but he's in Virginia, and that's really far from the West Coast. He's a pediatric cardiologist, but also has children and adult patients with Dysautonomias, and his son has it so he knows and understands exactly what we're going through. He's a wonderful man. I hope you find someone closer to you to go see.

Many of the symptoms you describe your son having are the same for me, and most of us I'm sure. I have vision loss all the time, especially when I get really dizzy. My family likes to joke about it because all 4 of us wear glasses and my mom always loses(sp?) her's. So the joke is when I "can't see/get spots/my vision goes black," when I'm like that they joke that I'm even more blind than my mom. <_< The more we can joke about it the easier it makes it for them to accept it. It's hard for my brother, who's 18, but his way of coping with things is to joke about them. You might want to expect that from your son.

I was in the day care program for 2 years at my high school and worked at one too. Plus I've helped raise most of my cousins. It's VERY tiring for a child to go through school. It's tiring on the brain and the body. With this it's even worse. See if you can get the teacher to institute a nap time about 1/2 way through class, or even just let you son have nap time if she doesn't want to do it for the whole class. That will give him to regenerate. Is she won't agree ask her to let him sit or lay by himself somewhere quiet with something he likes, a favorite toy, stuffed animal, or blanket--something quiet that sooths him and makes him feel safe a secure. Just that quiet time and safe feeling will give his system time to rest for a little bit. Maybe she could let him do that at the end of lunch. Our teacher used to make us put our heads down on the desk and be quiet with the lights turned out for 5-10 minutes just after lunch. Suggest that to the teacher. See if she will let him keep a non-caffiene(sp?) drink BOTTLE--not a glass that can be spilled on his work or cause a distraction, on his desk or in his desk, but within reach at all times and let him constantly drink from it, but she also has to let him go the bathroom a lot his he's going to be drinking a lot during those 2 hours of class. The best way I can think of to tell you to help him get through class, is to treat it like it's an all day marathon class for you. Think of what you would do to fortify yourself to make it through a class like that. Then add your son's symptoms and limitations into that as if it was you who had it, not him. Then take that and apply it all to his 2 hour class, but not looking at it as 2 hours, looking at it as the marathon class from He--.

I hope this helps!! If you want to talk, feel free to e-mail me or whatever. Please let us know how your son does. It might help him to come on here and have you type a short post for him saying "HI!" to the people here, who he is, and some of the things he enjoys, likes to do. Then we can respond back to him saying hi and some of the things we like to do and that it's great to meet him!! You can read him our responses and that might help him to know that there are other people out there like him and who understand him. Just a thought....

MP

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Dr. Grubb is very good and also in Toledo, Ohio, there is Kathryn Boehm who actually is an adolescent medicine specialist for NCS/POTS patients (children through age 25). Good luck with everything. I can't imagine traveling that far for diagnosis. Hopefully you will find good doctors where you live also once you get the diagnosis to help manage his problems. I agree with others below that it has to be so much harder to deal with a child with these problems because it has to be hard for them to communicate what they are feeling. My heart goes out to him. The good news is, with treatment he can greatly improve so hang in there and stick close around here for excellent emotional support!

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