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Newly Diagnosed with Questions


Kathy MacDonald
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Hello,

I posted yesterday about my 13 yr. old daughter, Billie, who was diagnosed with Dysautonomia 2 weeks ago. I have lots of questions and don't know where else to go with them. Her next neuro appt. isn't til next month. Are there times when symptoms flare up and then are better for a period of time? For there past several months she has had a significant increase in migraines, and anxiety. She has missed 14 days of school this fall, mostly due to migraines. Last week she was out 4 days with a severe migraine and finally landed in the hops. on IV Morphine for the pain. She is on a new med, Topamax, to try to get the migraines under better control but it's not at therapeutic levels yet as it must be slowly increased. She has had an increase in dizziness and lightheadedness over the past week. (has had episodes in the past where it gets bad for a while and then gets better.)

Today she was very tired when she woke up after 10 hrs. of sleep. I took her to school. At 10AM the school called to say that she was very dizzy. I asked them to have her lie down for a few mins. and have some fluid and then try to go back to class. They called back at 11 to say that she had been sound asleep for an hr. and was still too dizzy to return to class. I left work to go get her and she was pale as a ghost and couldn't walk without holding on to me. She fell asleep again as soon as we got in the car and slept all the way home. She walked into the house and fell asleep on the couch. I woke her up for lunch and she went right back to sleep. She can't seem to stay awake. I don't know weather to think this is side effects of the Topomax or symptoms of Dysautonomia.

We are very concerned about how much school she is missing and, if she continues to miss so much, she could end up repeating the 8th grade. We are also concerened about the emotional toll taken by being sick and in pain so much. Has anyone written a "Dysautonomia for Dummies" book java script:emoticon(':)') to tell us how to live with this? In all seriousness, I am very interested in any books or articles that anyone might be aware of or any advice that you might have.

Kathy

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Guest tearose

Dear Kathy, I am sorry that you are going thru all this with your daughter. Have you learned about dynakids? It is a website for kids with dysautonomia. There is also ndrf.org which has a lot of information and a book you can download.

Most of what I have learned has been through experience. I am running a fever today so I'm not at my best but I am sure others will post the links for you.

If only there was a book like dysautonomia for dummies! All of us have doctors who we would love to give them to! :) Keep on looking for answers, best regards, tearose

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I am sorry to hear that your daughter is having so many problems. My 13 year old missed a lot of school last year due to fatique and migraines. It was a very ahrd year because she also had to drop out of gymnastics which she a excelled at in the past. I remember my concern about her emotional wellbeing. Fortuantely, her symptoms are minimal now and she gets very few migraines. She is just so happy to be feeling better and is making up for watch she had missed out on socially. She now seems very happy and well adjusted.

My heart goes out to you and your daughter. Thsi must be very difficult. Amonth appointment is a long way off when it comes to a child. Is she on any medication? Has she increased salt intake. I always had a hard time getting my daughter to drink enough fluids. She likes to drink propel an electrolyte drink. I wish I could do something to help. I hope you can get some more answers at her next appointment.

Dawn

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Kathy,

I'm 15 and while my dysautonomia has manifested itself slightly differently, I feel for your daughter. I was just recently diagnosed but have had it since 6th grade, so I've had to deal with a lot of the same stuff. Dyna kids is really great, so you should definitely check that out. Also, if either you or Billie have questions or want to talk about anything, feel free to either email or write me a private message.

Good luck with everything,

Sarina

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Kathy,

I'm 15 and while my dysautonomia has manifested itself slightly differently, I feel for your daughter. I was just recently diagnosed but have had it since 6th grade, so I've had to deal with a lot of the same stuff. Dyna kids is really great, so you should definitely check that out. Also, if either you or Billie have questions or want to talk about anything, feel free to either email or write me a private message.

Good luck with everything,

Sarina

Thanks Sarina,

I looked at the Dynakids site today and it looks great. I'm sure Billie will want to check it out soon. She's had a tough couple of weeks.

Kathy

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Dear Kathy,

I can only add a quick note at the moment.

I've also taken Topomax, and was always sleeping the way you've described. However, usually when something funky has been going on in my body (migraines, frequent seizure series, tachy episodes, etc.), my normal reponse seems to be to kick into "hibernation" -- sleeping hours on end with short periods of unability to function inbetween. I'm not sure if the Topomax contributed to the sleep or if that was just my systems shutting down to repair themselves. At this point, I'm on the other end of the spectrum having difficulty getting adequate sleep -- if only I could have spread that extra sleep out a little bit! :)

Sorry I can't give you a more helpful answer -- I thought I'd share the experience with you, anyway. It's so difficult to manage through school with these problems (my high school got on my case about my absences, but what could I do? I was doing the best I could, as was my neuro and the various specialists I was seeing.), and life in general becomes most definately unusual), but you'll make it through. It was very tough on my parents, too (still is!), but we've just had to take it one step at a time. There is an emotional toll to all of this (I can't count the number of times I've cried in agony or frustration -- my pillow has been better watered than any of my plants !!!), but my experience has been that the pain and frustration helps nurture patience, determination, and a very deep sense of compassion for other people's pain. You get a great medical education at the same time! :) I'll be praying for you, Billie, and the neuro as you try to sort this out. Stay strong and determined to find an answer, cry unashamedly when you need to, laugh whenever you can, and keep sharing with us. I'm glad you've found our family!

With much love,

Angela

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Kathy,

To answer your question, it is very common to have flare up of symptoms. Also depending on the type dysautonomia she has she may also be effected by overstimulation and this is certainly the season for stimulation. Often just being in a quiet place can help. The best advice I can think to give is for her to listen to her body and take your cues from there. Heavy fatigue is often a symptom but the severity may increase or decrease over the course of her illness. Since she just started a new med, I would give a call to the dr. office or pharmacist and see what they think...could it be contributing to her fatigue. Is there an alternative med that might be worth trying for her. Most people here have some degree of med sensitivity -- from low to extreme -- and what is therapeutic level for "normal" individuals is usually not true with those of us with POTS.

BTW, I remember a post called "dysautonomia for dummies" that was written by Dr Grubb that was posted on dynakids.org. I remember that it was written so that the average person can understand ANS problems and is good to share with family and friends. But, I will say this, there is no single path for the recovery or management of dysautonomia (in my opinion) because it is a group of symptoms and we can all have different variations. But, I think you will find helpful information as you and your daughter work through finding the right medical treatment for her. all the best.

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http://www.dynakids.org/Documents/newsletter2.pdf

NDRF Youth Network

Fainting Robins Newsletter

?The Young and the Diizzy?

?Back To School? - Special Edition August 2001

______________________________________________________

?Dysautonomia for Dummies?

Byy:: Drr.. Bllaaiirr Grrubb

There is a Dysautonomia for Dummies article at the Dysautonomia Youth Network website that is good for explaining the disorder to family& friends, unfortunately it falls short of being able to tell you how to cope with the variety of symptoms that come with it. Maybe it will help your daughter with her own understanding. I have used the article in the past to explain to my husband's family since I find that while they want to understand they really don't want to read a research paper. Hope this helps.

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Hi Kathy,

As far as the migraines, has your physician tried a combo drug therapy yet? My oldest that had migraines (hemiplegic) since age 5 that were just awful throughout her years, averaged about 2 x a week at some points in her school age about your daughters age.

They finally put her on a combo of Elavil & Inderal and over time it seemed to work well for her until finally she could be weaned off when she no longer was having chronic migraines. As far as the pain she is having, what type of pain is it? I'm not sure if you read my reply to your last message about loose joints but if she is hypermobile that can cause chronic joint pain as well.

There are several things that can be done at school to accommodate your daughter to make things abit more convenient for her to get through her day once she feels well enough to attend. If you haven't already done so that is. The first we had to do in our case was eliminate gym due to pain and fatigue dizziness blacking vision it was just impossible to expect a person to do exercise. Plus writing hurt the hands and wrists so she was provided with laptop at school, extra time to get to classes etc. extra books to avoid carrying the weight. Any exercise was water related and lots of PT to strengthen the ligaments & muscles that helps with the pain. With this problem, she will experience times like she is now unfortunately and it seems to be a combination of things that help.

I'm sorry to hear your daughter has to go through this, we can relate, it was agony for us to watch our daughters going through the frustration and illness especially when they have to give up things that they love doing until they get a little better. As I'm sure many parents of child who have a chronic illness, it feels like the hardest part. But I can tell you after many years of dealing with this illness and believe me, many others illnesses at the same time such as Ulcerative colitis and EDS we have learned kids are strong, they can work through much more than adults I think, they just have to know that they are not defined by their illness (whatever it is) but that they are stronger because of it. It just doesn't feel like it sometimes and its only a matter of re-arranging somethings to make life easier to function and finding the right medications and correct program of things to make the person stronger.

Another medication that seems to work well for us for the low blood pressure is Midodrine, although if she is experiencing migraines constantly she might not be able to take it at this time, your neurologist would know better on that one. We also found out in our daugthers situation that certain trigger foods would bring on a bad migraine as well such as chocolate, pepperoni, certain fruits sleep habits etc. Good luck and hope the info helps.

There is a wonderful link of information about sick and worn out children at

http://home.bluecrab.org/~health/sickids.html (this has a ton of info)

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http://www.dynakids.org/Documents/newsletter2.pdf

NDRF Youth Network

Fainting Robins Newsletter

?The Young and the Diizzy?

?Back To School? - Special Edition August 2001

______________________________________________________

?Dysautonomia for Dummies?

Byy:: Drr.. Bllaaiirr Grrubb

There is a Dysautonomia for Dummies article at the Dysautonomia Youth Network website t

Thank you! This is great. I'm going to email it to all of Billie's teachers. Will have to figure out what to say to her classmates as well. Some of them have been very concerned about her and apparently at least one thought that she was dying!

Kathy

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Hi Kathy,

As far as the migraines, has your physician tried a combo drug therapy yet? My oldest that had migraines (hemiplegic) since age 5 that were just awful throughout her years, averaged about 2 x a week at some points in her school age about your daughters age.

They finally put her on a combo of Elavil & Inderal and over time it seemed to work well for her until finally she could be weaned off when she no longer was having chronic migraines. As far as the pain she is having, what type of pain is it? I'm not sure if you read my reply to your last message about loose joints but if she is hypermobile that can cause chronic joint pain as well.

Hi Sally,

Thank you for both or your replies. We saw Billie's neurologist in the ER today. She was so dizzy this morning that she literally couldn't walk. She got some Visteril and is better now. Anyway, the neuro says that Billie's Dysautonomia is relatively mild and doesn't fit neatly into any of the specific sub-types. She says the best way to describe it is mild EDS with multiple dysautonomic symptoms. Does this make sense?

Kathy

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Hi Kathy,

Has your daughters? physician told you what type of EDS she has? Not to second guess what he is referring to but he could mean that she has a mild form of EDS compared to the more severe types and has dysautonomia as well. From what I have been told by numerous physicians one of which is from Johns Hopkins is that people who have been diagnosed with EDS usually receive a dual diagnosis of NMH. Due to the laxed vessels etc.

If she is having difficulties standing for periods of time due to low blood pressure and having problems with dizziness that maybe the doc might want to revisit the diagnosis of mild form status and see about a more aggressive treatment so she can function at a more normal level, or at least as normal as one can get dealing with these things. I don't think we're ever fully at a normal capacity unfortunately. Plus her pain level could be due to the EDS as well and there are steps that he can direct you toward to help ease the pain level abit.

Have you seen a geneticist or cardiologist for evaluation for EDS? Has your daughter had a tilt table test done? I'm not sure if they do this at your daughters age but it also helped determine just how bad the situation was to our cardiologist in our case. Someone else on the forum might know if there is age limit for tilt table testing.

There is a super doctor that is in the genetics dept at CHOP in Phila and a great one at Johns Hopkins rheumatology that is just super for information about EDS and the affects it can have on a person and was a great help to us. If you need any information on what steps we took that might be helpful for you as well just let me know. If you are new to this, it can feel quite overwhelming...I felt as though I was on knowledge overload most times during the more difficult part of the illness.

http://www.ncbi.nlm.nih.gov/entrez/query.f...4&dopt=Abstract

http://www.hopkinschildrens.org/pages/rese...?spotlightid=44

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Guest Mary from OH

Kathy-

Also, regarding the school issues. You really should look into getting an IEP written for Billie under OHI (other health impaired). That way her educational writes will be protected. She should not be penalized because of a medical reason. She should be provided education at home by the school system if she is too sick to come to school. You need to put in writing that you want her evaluated for an IEP for OHI. Another set of school books will also be able to be sent home for her so she doesn't have to carry them back and forth. You can put many necessary things in her IEP.

Let me know if you need help in doing this!!

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Mary, I think you are very right that Billie shouldn't be penalized for being sick. I missed over 3 months of 8th grade and it was really difficult to teach myself everything and keep up. It would have been so much easier with tutors at home! However, at least in my school, IEP's are very complicated because they're done through special ed. People have to keep being reevaluated and things tend to be much slower. Most children (at least here!) with chronic illness tend to have a 504 plan. This is done through the disibilaties act, and in our experience is much easier. I'm in 10th grade now and unfortunately, right now I have to be homebound because the fatigue was overwhelming and I couldn't make it through the the day without fainting/having a seizure. I hope to go partially back soon, but because of the 504, getting tutors at home has been very easy. Also, IEP's here tend to not be very flexible (it's either all or nothing, and you can't change from day to day), so that's another advantage of the 504. Whichever route you go, this is definitely something I think you should pursue. Our good friend is the head of admissions at Yale, and he has told us that there are no ramification from getting a 504, at least not in terms of college.

Good luck!

Sarina :lol:

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Mary, I think you are very right that Billie shouldn't be penalized for being sick. I missed over 3 months of 8th grade and it was really difficult to teach myself everything and keep up.Sarina :lol:

Hi Mary and Sarina,

We are in the process of dealing with the IEP/504 issue now. At the initial eval we were told that Billie isn't eligible for an IEP because she is making "adequate academic progress". She is a very bright 8th grader whose reading, spelling, and oral skills test at a college level. Math tests at an 8th grade level. However, she has major problems with written expression, organization, and some issues with social skills. The moral of the story is, "If you are a very smart kid, they'll say you don't have a learning disability." We have appealed thier findings and are in the process of getting an independant eval. We are trying to get her 504 updated. The problem is, she attends a private school. They are under no obligation to write or abide by a 504 because they receive no federal funds. However, they are perfectly willing to abide by a 504 if one is provided by the public school system. We are having trouble getting the public school to write it even thought they are supposed to do so. I've called the Special ed. dept. of the state board of education and they are going to intervene. Never a dull moment. :-)

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Guest Mary from OH
Mary, I think you are very right that Billie shouldn't be penalized for being sick.  I missed over 3 months of 8th grade and it was really difficult to teach myself everything and keep up.  It would have been so much easier with tutors at home!  However, at least in my school, IEP's are very complicated because they're done through special ed.  People have to keep being reevaluated and things tend to be much slower.  Most children (at least here!) with chronic illness tend to have a 504 plan.  This is done through the disibilaties act, and in our experience is much easier.  I'm in 10th grade now and unfortunately, right now I have to be homebound because the fatigue was overwhelming and I couldn't make it through the the day without fainting/having a seizure.  I hope to go partially back soon, but because of the 504, getting tutors at home has been very easy.  Also, IEP's here tend to not be very flexible (it's either all or nothing, and you can't change from day to day), so that's another advantage of the 504. Whichever route you go, this is definitely something I think you should pursue.  Our good friend is the head of admissions at Yale, and he has told us that there are no ramification from getting a 504, at least not in terms of college.

Good luck!

Sarina  :lol:

Sarina-

Yes,  IEP's are in Special ED and 505 plans are not.  A school district is legally accountable for anything that is written in an IEP.  That is why it is vital that children who have chronic illnesses have current IEP's.  Part of the IEP can even be that it must be revisited often.  An IEP is written every year.  The child is reevaluated every 3 years for eligibility.  IEP's are very flexible too.  I was a school psychologist and helped write these every day.  It is your right to have one.  Every child with a chronic ellness should have one so that certain needed accomodations can be made.

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