Ginnysgirl

Questions again! My 11 year old daughter has begun to get blood spots. The other night we made a recipe where we broke up pretzels. She helped. Two hours later there were blood spots all over her palms where the rough edges of the pretzels pushed into her skin. She is also getting them on the inside of her lower lip. Any ideas? Or has anyone experienced something similar? Thanks so much. PS: We are heading to Cleveland to see a new pedi gastro doc this coming Wednesday.....pray for us:)

Thanks so much for all of the encouragement. We have tried different foods but not stopped one particular type for any length of time. That might be something to try. Thanks for the advice. I also hadn't thought of the nutritional drinks but will try them. Might be easier for her. Everything triggers her tummy. Loud noises, the "bass" in music, heat, showers or baths all make her tummy cramp. But of course, most of all is food. We have tried the ginger root tea. She thinks it is too spicy and doesn't like the taste so that was a wash. But I make her decaf chai tea and she likes the flavor of that. Thanks again. I will update after the 22nd.

Well, thought I would update everyone on our daughter (11). She has a new doc GI appt. in Cleveland on Dec. 22. I'm very nervous about this. She is having terrible stomach pain and isn't able to eat even a handful of goldfish crackers without the pain. She knows that she will have some uncomfortable testing done but still wants to go and see if this lady can fix her tummy troubles at least a bit. The pain is so much worse than it has ever been. Everything is labeled in numbers and her numbers are on the rise. Scares me. She looks like "casper" most every day now. Eating sends her into a scrunched up ball because of the pain. I am worried at what they will find but am very upbeat in front of her. She is also still getting the bumps on her skin. The biopsy came back that "they couldn't determine a cause for them". It wasn't an allergy, a bug bite, a virus or a bacteria.....................well what the heck is it then!!! They are still occuring and leaving some scarring. Yuck! Thanks for listening!!!

Michele: My daughter,11, is going through the same type of "hive" problem. She is in her worst episode ever right now and started with these "bumps" about a month or so ago. Started with one on her leg.....then it went away. Then came one on her neck and then another and another. Some come and go away. Then some come and get almost a bug bite looking crust on the top of them. She says some of them itch badly and some only itch a little. I took her to the immunologist that she sees and they told me that it was a virus, so we took her home. Two weeks later, she was 7 lbs lighter, (very, very skinny already) and still really sick and was getting more bumps and the ones on her neck had gone away but more replaced them. They did a biopsy. It showed basically nothing. It showed that it was not a virus, a bacteria, a bug bite, or an allergy. They couldn't diagnose what it was caused by. This past weekend, our friends from S.C. came to see us. Their kids both have dysautonomia just like our kids. Her son also has these same hives. His look just like my daughters except when his goes away, they leave no mark. When my daughters goes away, it leaves a brown looking scar-type mark. I don't know if this is the same as what you are describing but I am very frustrated with these things........and if they could help us find out something new, it would be great. Good luck Linda

My daughter's cardio told us that ( I can't remember for sure which med...sorry) Proamitine or Florinef caused your potassium to lower. We make sure she drinks gatorade and loads up on banana's just in case. Didn't know if you were on either one but thought maybe this would help. Good luck.

My daughter, 11, has this same problem. She will go to bed and lie there for two to three hours before coming to get me to say that she can't sleep. She is so tired and during this time, because of her body being so tired, her stomach is cramping. We will sometimes sit up all night with maybe her falling asleep at 6 am or so. Usually this preceeds a bad spell. Does this happen like this for anyone else? We've tried Benedryl and it helped only a small amount. The bad thing is that because of the dysautonomia she has bladder control issues and sets an alarm to wake up at 2am to potty. After that.......she can't always get back to sleep. Cant seem to find a way around this though. Good luck!

Leah: Don't let anyone make you feel inferior. You can do or be anything you want to be. This person sounds heartless and obviously has never had a serious illness or a child with one. I don't have any advice for you other than to tell you to use this circumstance to make yourself stronger........don't let her opinion get you down. I wanted you to know that I would be praying for you.. Linda

Thanks so much for the responses. She does have hyperflexibility but has not been diagnosed with EDS as of yet. I will look into the websites though. Thanks for the info!!! Greatly appreciated as are the prayers.

Just a question. My daughter is now coming up with small blister type bumps that start out as a red dot under the skin. This lasts for a couple of days then grows and becomes bigger. It looks like a tiny little water blister. Just wondering if anyone has had anything like this. We had to have a biopsy taken of them today because this is the third time she has had them just recently. Immunologist isn't sure what it is. Two weeks for results. Would appreciate any info. Thanks so much

My nephew's wife has also been diagnosed with this and is so bad that she is currently being scheduled to have the gastric pace maker implanted around Thanksgiving. She is one of the first ones to have it from what I understand. I can keep you updated after that time as to how it works. Good luck!!

Thanks for all of the wonderful ideas for the tummy troubles! I called our pedi. cardio today and he did order the levsin for her. I have to say that I am a little leary as she is on a Oxytrol patch because her dysautonomia also affects her bladder control . The oxytrol and the levsin kind of do the same type "anti-spasmatic" type thing. But it is worth a try. Did anyone have any type of problems with the medicine? I hope not because I am praying that it is our answer for the "terrible tummy troubles" as we call them Someone also said something about gingerroot tea. They mentioned a "triple-leaf" brand. I can't find that in our area and was wondering if any gingerroot tea that was 100% gingerroot would work. Any ideas? Again, thanks so much for all of the great ideas. I can't say how much it means to be able to think that there is something new to try.

Thank you all for responding. She is currently seeing the chief ped. cardiologist at a local childrens hospital who works quite a lot with kids with dysautonomia plus he is friends with Grubb and quizzes him often about my kids. The stomach pain is the worst symptom for her and I appreciate the idea of the gingeroot tea. I will be sure to get some. Thanks too for the carb idea. She is such a tiny thing that at this point, we gave her whatever she was willing to eat. But I will try to watch the carbs more and see if that will help. And yes, she is a member of dyna but is too young to really be of interest in the computer or forums as of yet. Maybe in a couple of years I suppose. The other thing that has amazed me is the brain fog that has come with this episode. She usually has a bit of it but this time it is way worse. Very frustrating for her. Can not remember most things that she read or learned last week. Kind of scary. Is this normal for some people? We haven't dealt with this much. Thanks so much for sharing with me.

Hi, I am new to this forum. I have an 11 year old daughter with POTS/NCS and a 13 year old son with NCS. Currently, my daughter is in one of the worst spells since she has been diagnosed. She has been in this spell for over a month. It started with strept and blisters a month ago and although this has subsided, she is still feeling terrible. She is having severe tummy cramping. We rate everything on a scale of 1-10 and currently, her stomach cramping never goes below a 5. She has taken to laying on her back on the floor with her knees drawn up to her tummy. Her bp is jumping up and down often which makes matters worse. The cardio that we see has upped her Florinef and Proamitine but so far nothing is helping. She is drinking loads of liquids but still not helping much. Is having some trouble sleeping off and on during this period. But the most frustrating thing for her now is the fact that she is an A student but is too ill to attend school. When the tutor does come, she can't think to complete her homework. She took two tests last week and received a C and a D on them. She's never done that before and is devastated by that. We have contacted our cardio and our immunologist and both have ordered tests (her tonsils are a bit swollen and her throat red) but everything comes back neg. Both feel that she is in the midst of a virus and we need to just "wait it out". That is frustrating!!!! She has taken to wanting to take baths instead of showers because standing makes her stomach hurt worse in the shower. She isn't eating much because of the tummy pain either and is already very thin. I would be thrilled with any help that anyone could provide.