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TJoanneT

Help For My Daughter!

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Hi everyone,

I've read many of your posts and now that I'm registered and activated, I'm hoping to get some more input into what I think is going on with my daughter (and myself to a lesser extent).

My 6 yr old DD (nearly 7) Robyn has been plagued with medical issues since birth. She was born very quickly (active labour < 1 hr) and at 13 days of age began crying and cried for 6 months straight. She dropped from the 85th to the 10th % in weight by 8 wks old and was diagnosed with GERD (not by testing, but by exclusion). From the age of 6 mos-18 mos things were calm. At 18 mos of age she began a cycle of monthly vomiting episodes which were later diagnosed as cyclic vomiting syndrome (in the migraine family). This has continued until now. At 5 years of age, she began having spells of abdominal pain, which lasted 2-4 hours a day. She was unable to go to school and this lasted for approximately 8 weeks. Now, at nearly 7 years of age, she has just gone through another 8 week spell of abdominal pain, and also had her first full-blown migraine. Another interesting symptom is that she has an extremely low tolerance for the heat. She is unable to play outdoor sports, we cannot vacation in the summer and if the temperature goes much higher than 65 degrees out, she is unable to play outside. Her normal body temperature is well below normal. She suffers from severe motion sickness.

A friend of mine (a pediatrician) finally tipped me off to the idea that there was some sort of autonomic instability that could explain all of Robyn's medical concerns. Nothing up to this point could answer everything.

After doing probably a hundred hours of internet research, I was convinced...this was the answer we've been looking for all these years.

We've seen a total of 4 doctors in the last month...our GP, and ER doctor, our Pediatrician and a Neurologist. No one will listen. No one will even consider this as an option. I've contacted one of the doctors listed on this website who is willing to speak to us, but he's a 12 hour drive away...there's no one closer. I live in Canada, where you can't see any specialists without a GP's consent...the only doctor we're currently waiting to see is her GI specialist.

Any advice??

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Joanne,

Welcome to what perhaps will be your saving grace! I am so sorry to hear what your poor little girl has been through at only 7 years of age! Dyautonomia is something that can be so taxing to deal with that I cant even imagine a child having to deal with it! Your struggle with the doctors is nothing new around here. We have almost all been through the same thing but when it's your baby suffering it seems unbearable! There is a saying that I have heard that goes something like this...a mother is only doing as well as the child that is suffering the most. It is so true! I would say do whatever you have to do to get her to a doc that understands this disorder. Look for naturpathic doctors who might understand it. I recently found a doc who is a regular MD but uses naturpathic care and it has been a good experience so far. She is focusing on my adrenal glands right now and no one ever did that before. Stick to your mother instinct because your daughter needs you to fight for her. I will pray for her and for you to get the right help! Hugs to you and her!

KC :)

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Welcome. As a mom to a 7-yr old, I can understand how painful this must be to you. I hope you can get answers and good medical care soon. From what you have described, I agree that autonomic dysfunction should be considered.

Are you familiar with

http://www.dynakids.org/

I am not, but it occured to me b/c this is a site specifically addressing childhood autonomic disorder so you might find additional resources there.

I hope your sweet little one feels better soon,

Katherine

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My only advice would be to make the trip if possible. Getting a diagnosis is important, and long trips to specialists is unfortunately a norm for this type of rare disorder.

I'm so sorry for what your daughter and you are going through. Hopefully this sorts itself out soon, and she will be able to live fully happy and healthy.

From what you've said, I'm practically certain what your daughter is is dysautonomia in some form. Don't take no for an answer, ever.

Stay strong; you're both in my thoughts.

- Shim

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Joanne-

So sorry! My son is 17 y/o and you could have been giving his medical history. At age 13, he was FINALLY DXed with an autonomic dysfunction, NMH, and a dysmotility of his small bowel. He didn't become critically ill until age 12 (practically unable to eat/nausea/vomiting/lightheadedness, etc)- although the GI issues drove us to ped GI's/ hospital tests several times before that.

The BEST help that we found was through a pediatric GI motility specialist. There are very few worldwide ;) We saw Dr. Anil Darbari at Johns Hopkins who was able to link the GI woes with the autonomic dysfunction.

I'm late for my day, but I will look for research articles, etc that you can show your docs later in the day.

In the meantime, lots of fluid, extra salt, and consider a non-dairy diet- I'll send you info (from Hopkins) that that is very helpful for pediatric patients with autonomic and GI woes.

Hugs-

Julie

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Welcome Joanne!

Has your daughter been tested for a mitochondrial disorder? It can manifest itself in many different ways and autonomic dysfunction can be secondary to mito. I would defiantly suggest www.dynakids.org. Also check out www.umdf.org for info on mitochondrial disorders. Good luck and keep us posted.

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Your description describes my son as well, but not as bad at that early age. He did not get terrible until age 11. He was diagnosed at 14. The doctors before that kept wanting to blame it all on anxiety. When he was little he got sick almost every time he got in the car.

We, too, travel 9 hours to see the specialists. They have been great. We see Dr Gisela Chelimsky in Cleveland. She is a pediatric gastro. We also see her husband who is a neurologist(autonomic specialist). They have done testing to rule out my sons nausea (he no longer vomits) being caused from his GI process. He does have gastroparesis though.

They believe my sons nausea is caused from the migraine process. Right now we are just changing the dosage in his medication to see if that helps. All of his other symptoms are mostly under control with the current meds, just still working on the nausea.

Keep advocating for your daughter, you know her best. I had refused to let them blame anxiety as the cause of my sons ailments- I knew him best.

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So sorry for what you and your child have been through! From what you've described, she could have POTS or another autonomic disorder. You might want to contact dynakids website as well. The woman who started that website has a daughter who was diagnosed at age 9 with (I think) POTS. Children can get POTS young although it is rare. She was very helpful when it came to my daughter and that website has other contacts on it as well.

Do what you have to do to help your daughter. I know right now, your strength and patience is probably wearing thin but it is so worth it to find the right doctor. We drive about 8 hours to go to an autonomic specialist in Toledo, Ohio. If your daughter does have an autonomic disorder, keep trying until you get to the right doctor. It is so worth it to have someone who knows what they're talking about, believe me. We had to see some horrible doctors to get to the right ones and I would love to see someone else not have to go through what we did.

My prayers go out to you and your daughter. I hope you find out what's going on with her.

Brenda

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