11 year old daughter

[Ginnysgirl]

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.

[Michelle Sawicki]

Hi,

I'm sorry to hear about your daughter's condition. Is she seeing a doctor that specializes in dysautonomia?

Michelle

[yogini]

Welcome and sorry your daughter is going through such a bad spell lately.

You may want to check out the "What Helps" section of potsplace.com, as well as the physician's list to get an idea of treatments you can pursue and doctors in your area that might be able to help. High salt and compression hose may also help if she hasn't tried them already.

I think a lot of POTS patients feel better sitting down in the shower. The hot water lowers my BP and makes me dizzy, so I generally sit during my bad periods. Others on the forum have experience with stomach pain and can hopefully offer advice.

Hope your daughter feels better soon.

[luckygoat3]

Hi,

have you checked www.dynakids.org, if your daughter would like support or just to know she's not alone. it's a wonderful site!

[Jersey Girl]

Welcome and I'm so sorry that your daughter is feeling so bad presently. I tried many remedies for the stomach issues. For me the best help when I was more acutely ill and even now is a fews cups of 100% ginger root tea which I order from tripleleaf-tea.com. Many groceries and health food store carry it also.

The one I prefer is in the orange box. I also need to watch my diet even more closely than I ever did to avoid simple carbohydrates. I do better eating small amounts at any given time and sticking with high protein and complex carbohydrates for meals. Sometimes just getting up and walking at an easy pace even when I don't feel well will help me.

Let us know how your daughter feels. Martha

[Ginnysgirl]

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.

[beala]

Ginnysgirl,

I feel for you and your daughter. My 17 year old son has pots also and has severe brain fog and can't remember much either. He is a senior this year and has been homebound. We tried wellbutrin for the brain fog but it didn't help but it has helped others. Dynakids has a parent forum which might be helpful for you to talk to other parents of teens. Good luck and feel free to e-mail me if you like.

Laura

[MightyMouse]

Ginny, unfortunately, for many of us, that brain fog is also associated with flare ups of symptoms--and for others it's present all the time. I have my moments of better and clearer thinking but as of yet, haven't figured out what brings them my way...or what makes them leave me.

I hope your daughter gets much better very soon--and hope both your kids stay stable for a long time to come.

Welcome to our board too Nina

[hawaiigirl789]

Hi, my name is Ashli and I have had POTS/NCS for 4 years now. One of my worst symptoms used to be excruciating stomach aches. I don't know about your daughter's stomach aches, but mine always happened after I ate. Even anything like plain bread or crackers would give me stomach aches. However, now I no longer experience ANY!! It is amazing. There are the occasional few, but ever since my doctor (Dr.Grubb, Ohio) prescribed levsin the pains have almost completely gone away. I take the medicine before every meal. I know it works because if I happen to forget to take it I pay for it. Concerning the sleep problems I also understand. One thing that might help is taking a warm shower or bath (which ever is best for your daughter) right before she goes to bed. The warm water makes me sleepy since it relaxes everything, and in turn it helps me sleep. I hope this will hope, and I hope i am posting this correctly! I am new so I am not quite sure how to work all of this! Good luck!

Ashli, OR

[MightyMouse]

I also have abdominal pains--and take levsin too. It really helps me tremendously. It's worth a shot and is easy to take sublingually (under the tongue) in a small dose. Ask your daughter's doctor if it might help. BTW, levsin is typically used to treat spasms... in my case, GI spasms.

Nina

[Merrill]

Nice job, Ashli--you did just fine. And welcome here!

I'm 42 now and I VERY clearly remember the bad stomach aches I got as a preteen. I also very clearly remember going for tests at the hospital, drinking barium, being told nothing was wrong. I took various remedies (donatol and one other) until I threw up from the medecine and then I refused to take it again. Just as well. Later in my life, looking back, I referred to them as "psychological stomach aches" because my parents were separating and divorcing. But now that I've been diagnosed with POTS and I've reevaluated a whole host of lifelong symptoms, I know that the psychological piece is only part of a very complex physiological puzzle! I too was rail thin--for decades!--and only in the last 6 years or so have put on a healthy amount of weight. I still take all my stress out my gut, and I continually battle stomach aches and stomach distress.

I remember also going through a phase in my late 20s where I couldn't tolerate dairy, and lactaid didn't help. I got agonizing stomach cramping and terrible pains that lasted for hours and hours if I had a little pizza or ice cream--foods I'd been eating since I was a kid and that I can typically eat now with no problem. I stopped eating dairy for about 4 years... and then, oddly, I started again. I never did figure that stretch of my life out; nothing else was particularly stressful.

Ginny, I think it would be good to keep track of what kinds of foods are better tolerated--and to try removing types of foods and then reintroducing them one at a time. It's quite possible that food sensitiities/allergies could be a source of the trouble. You might seek the advice of a nutritionist--I'm sure, actually, that your physicians can point you in the right direction there; you're clearly in the best of hands when it comes to your kids' medical care.

Best of luck to you and your kids--tell your daughter she has new friends who are thinking about her!

[Nicole's Mom]

Ginnysgirl,

My daughter first became dramatically symptomatic in 1996 at the age of 20 (although we are now looking back to when she was a child and see signs going way back). She is presently in flare up which is keeping her quite disabled. At first Nicole could not eat because she had nausea and anxiety and felt adrenaline-y. She was losing weight. She hardly ate anything but did force down a banana in the am and drink some chicken broth. She is eating better now as she improves very slowly yet is pretty thin but hopefully she will regain her appropriate weight over time. What seems to be starting to help her is adding salt to her diet in addition to all the water. She drinks salt water and adds salt to her food. Also she drinks the salt water with the food. She takes between 12-15 mgs celtic sea salt per day = @ 5800 mgs of sodium. She has terrible brain fog and cannot focus on anything. But this will improve to a degree as her flare up lifts.

About two weeks ago she added licorice to her regimen and that seems to be helping a bit too. Gradually if she remains on this course she should keep improving albeit slowly. She has to rest a lot and we help her by bringing her her meals. The florinef isn't working thus she is using the licorice. With salt and licorice one really must watch one's potassium as it can be drained by such treatments. Nicole takes tons of potassium. Ginger tea is a great idea. Another thing that has helped my daughter when her stomach was upset is licorice chews but the kind that is deglyzzerized (as opposed to the capsules that raise blood pressure and help the body to retain salt and water which she also takes.)

As a mother watching my daughter's life be interrupted like it is I can relate to how you must be feeling. It is difficult to watch our children suffer- no matter what the age.

This forum is a great place. I have learned so much in only 5-6 weeks. There is much intelligence, wisdom, experience, support and compassion here. You are never alone when you come to this forum.

By the way is your daughter taking salt pills? Although beneficial to some it can cause stomach pains and nausea. If she agrees to take the salt water she should have it with food if she will take the food. Otherwise you could try lots chicken broth- which is loaded with salt. We use the Pacific brand which is organic chicken broth and has 580 mgs sodium per cup.

Keep us posted and best wishes and prayers to you and your daughter.

Beverly

[Nicole's Mom]

Just to qualify something. When I said licorice chews I didn't mean candy but the kind one would get in a nutrition store- like Whole Foods, etc. They are like chewable tablets. My daughter had some stomach pain/discomfort and heartburn and nausea and these things seemed to help her. It is a benign thing to take and there are no guarantees - as everyone is different-but all I can say is that it did give Nicole some relief.

Beverly

[funnyfrog]

Hi Ginnysgirl, Welcome!!!! I hope your daughter feels better soon. Although I am older than your daughter, I have had lots of GI problems due to my POTS and I find that when the cramping gets bad, I lay on my right side for a few minutes, curled up a little bit and that seems to help. Also, has she been tested by her doctor to see if her food is digesting completely-it isa gastric motilitytest where you eat a radioactive egg and they watch it going through your digestibve system for a few hours to see if your stomach is digesting the food properly. They did this for me, my stomach was only digesting 20% off food and I had botox injected into my pyloris during an endoscopy to loosen my stomach muscles which helped my cramping,tightness in my stomach and let me start eating again. Not sure if they would do this in a childs situation if necessary, but I thought you might want to know about it. Also, in terms of taking a shower, does she have a shower chair? It helps me alot. I cannot stand in the shower anymore as I get too dizzy and my Dr. insists on this,since my BP lowers in the shower from the heat from the water and in case I pass out, I am already sitting down so I can't hurt myself. I hope your daughter starts feeling better, one day at a time and that her brain fog also starts to lift soon. Signed, a friend in NJ

[blackwolf]

Welcome to the site.

I also have some stomach trouble, but nothing like you are descibing. I am currently undergoing a dietary evaluation. Meaning I am going on a very bland diet and slowly adding foods to see if I have any allergies/intolerances. I know I am lactose intolerant and will there for avoid most dairy anyway. I hope that this will resolve some of my bowel trouble. It might be something to try.

And I use a shower stool too. I get way to dizzy stanking in the shower and baths are very hard to get out of, it causes a huge drop in my blood pressure, especially if it to warm.

Good luck and I hope your daughter feels better soon

Blackwolf

[Ginnysgirl]

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.

[MightyMouse]

Levsin sometimes make me feel a little sleepy, but I usually don't mind the grogginess once the pain stops. For me, it's a reasonable trade off, and usually only lasts an hour or so.

I think most ginger tea tastes kind of yucky... instead I use an instant hot drink that is popular in the Philipines--it's called "Salabat" and is made by a company called "Ludy's". I have a local speciality grocer who carries it, but before I found it there, I bought it online. It's kind of like instant coffee, but it's already sweeted. http://www.goldencountry.com/catalog_d/D0005.html (there are two Ludy's products, in the 11th row...4th row from bottom). Or, make your own salabat... It's very easy to do. Just boil ginger slices with sugar to taste. If you want, you can use brown sugar so the tea will have some color.

I also eat candied ginger root. I get it in the fruit/vegetable section of our local grocery store (Acme--yes, it's really called Acme).

Nina