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Kathy MacDonald
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I joined this forum because my 13 yr. old daughter has just been diagnosed with Dysautonomia. For the past 4 years we have aasked how one child can have so many medical problems and have them not all be related. We just took her to see a new neurologist and now we know, in fact, most of her medical issues are related. She has these and more...

Migraines

GERD

Constipation

IBS

Dizziness and fainting

Generalized anxiety disorder

OCD

Hypersensitivity to pain

Lack of sensitivity to cold

Icy cold but sweaty hands and feet

"Loose joints"

Currently her migraines and anxiety are the biggest problems. I didn't realize until after the neuro appt. that there is more than one type of Dysautonomia so I didn't ask which type she has. Can anyone here make a guess? We live in Boston and Billie is followed by multiple docs at Children's Hospital. We want to learn as much as we can so that we can help Billie. I look forward to learning from all of you.

Kathy

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Kathy, welcome to the forum.

I share nearly all of your daughters symtpoms with the exceptions of ocd, anxiety and hypersensitivity to pain. I'm undersensitive to pain. I have had autonomic problems since birth.

Hard to say what type of dysautonomia your daughter has, but you may want to read up in the following locations:

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

and

http://www.ndrf.org/autonomic_disorders.htm

and you might want to download a free book from NDRF that describes the disorders. It's a pdf file that opens using Adobe Acrobat.

http://www.ndrf.org/NDRFHandbook.htm

Nina

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Hi Kathy,

Welcome and sorry to hear about your daughter having to deal with this problem. I read your daughter has loose joints. You might want to look into seeing (if you haven't already done so) a genetics doctor to be evaluated for Ehlers Danlos Syndrome. There are quite a few hypermobile people that also have a form of dysautonomia that seems to be a secondary or dual diagnosis that stems from having the EDS. If a person has this and has loose joints etc they also tend to have laxed tissues and vessels causing blood pooling and orthostatic intolerance. EDS can cause a whole host of various problems as you mentioned in your message along with chronic joint muscle pain etc, also digestive problems as well.

Both our girls have this and we can recommend a very good facility for appts if you are in our region and if you are interested. A good source to read about this problem is EDNF.org. Good luck and let me know if I can help you with information.

We've been through quite alot with this and went through a very trying time before diagnosis was made and learned alot of helpful tips after diagnosis to function better. We've learned a ton about EDS probably more than a person ever cares to know but we feel that knowledge is power especially having a not so common problem to live with.

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Welcome. I just wanted to say that you have one of the best academic research centers for anxiety right there in Boston at Boston University. You should definitely see if they have any studies going on right now. I think if you do a Google search on "anxiety and Boston University" you'll find some info.

As for POTS, it sure seems that many here also have anxiety. I do. I suspect an overactive nervous system makes it easier for both disorders to pop up.

Amy

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Kathy, welcome to the forum.

I share nearly all of your daughters symtpoms with the exceptions of ocd, anxiety and hypersensitivity to pain. I'm undersensitive to pain. I have had autonomic problems since birth.

Hard to say what type of dysautonomia your daughter has, but you may want to read up in the following locations:

Hi Nina,

Nice to meet you. The neurologist told us that, while Billie has hypersensitivity to pain and decreased sensitivity to cold, that others with Dysautonomia can be at the opposite end of the spectrum. I've looked at the sites you mentioned but still can't figure out which type Billie has. Guess I'll have to wait til the next neuro appt. and ask the doc.

I was reading some common symptoms on an other site last night and found more info that fits my daughter including the need for 12 hrs. of sleep at night, never drinking enough fluids, insomnia, and being more susceptible to viruses than most other folks. This diagnosis has helped us to fit togehter all of the pieces of the puzzle that we have wondered about for so long.

Kathy

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Welcome. I just wanted to say that you have one of the best academic research centers for anxiety right there in Boston at Boston University. You should definitely see if they have any studies going on right now. I think if you do a Google search on "anxiety and Boston University" you'll find some info.

As for POTS, it sure seems that many here also have anxiety. I do. I suspect an overactive nervous system makes it easier for both disorders to pop up.

Amy

Thanks Amy. I went to grad school at BU so I'm familiar with that program. We are fortunate that Billie has a wonderful therapist at Children's Hosp. who specializes in both chronic pain and anxiety disorders. I don't know what we wold do without her!

Kathy

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The migraines, anxiety and constipation might all be helped immensely with magnesium. There are different forms, but the only one I had true and quick improvement from was the Standard Process brand of Magnesium Lactate. Other forms created terrible intestinal trouble and/or never made a difference in how I felt. Some chiropractor offices carry Standard Process products, so you might call around to see if someone in your area has the Mag Lac available. (You cannot get this brand at a store.)

I would suggest starting with 1 capsule a day, then after 2 or 3 days bump it to 1 morning and 1 evening, then a few days later go to 1 capsule 3 times a day (1 with meals makes it easy to remember).

My dosage started at 6/day for a couple of weeks, then 3/day. Within 4 days I already had a much improved mental outlook/less anxiety, and the fatigue had noticeable decreased. (Migraines have never been a problem for me, but I know magnesium is commonly used for such trouble.)

Should the dosage be too high, there will be a softening of the stool or a touch of diarrhea, but that can easily be solved by cutting back on the dose.

Best wishes!

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Kathy, I want to welcome you to the forum. I can't imagine what it is like for your daughter going through all the strange and long list of symptoms at her age. It is wonderful that you have excellent facilities and capable doctors to work with you in setting up a treatment plan for your daughter.

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Hi Kathy Welcome to the forum. You have found a wonderful group of people. Has your daughter had an TTT (tilt table test). This would help narrow down what kind of autonomic problem she has. What kind of autonomic test has she had done?

I have POTS, small fiber neuropathy, and myopathy. Both of my daughters seem to be affected by autonomic symptoms. My 13 yr old was just diagnosed with Autonomic neuropathy and POTS. My nine year has symptoms similiar to your daughter. I think it is time for her to be tested. She has been diagnosed with OCD, anxiety disorder and Crohns disease. Your post reminded me to look furthur into her symptoms and request autonomic testing.

I hope that with some medical treatment your daughter can start feeling better and have some of her anxiety symptoms subside. It is heartbreaking to watch your child suffer from disabling anxiety.

Best Wishes,

Dawn

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