New Diagnosis, Dysautonomia With Pots In Severe Stages

[cmruls]

Interesting that:

Ensure 8oz. has 250calories, 41carbs, 18sugar, 9protein

Milk nonfat/1%/whole 8oz. has 83/102/146calories, 12-13carbs, 12-13sugar, 8protein

Gatorade 20oz. bottle has158calories, 39carbs, 32sugar, 0protein

G2 LowCal 32oz. bottle has 80calories, 20carbs, 20sugar, 0protein

Instead we use:

Almond Breeze Unsweetened 8oz. has 40calories, 2carbs(1 is fiber), 0sugar, 1protein

Coconut Milk Unsweetened 8oz. has 50calories, 1carb, 0sugar, 1protein

Hood Calorie Countdown 8oz. has 45calories, 3carbs, 3sugar, 8protein

My Favorites:

Powerade Zero 32oz. bottle has 0calories, 0carbs, 0sugar, 0protein

Atkins Vanilla Shake 11oz. has 160calories, 2carbs(1 is fiber), 1sugar, 15protein

EAS Protein Powder 1scoop has 130calories, 3carbs(1 is fiber), 1sugar, 23protein

Better to avoid all the carbs and sugar!

We mix the protein powder in the Almond, Coconut, Hood products.

[issie]

Confused a bit--- is this because I suggested Ensure?

Definitely did not suggest soy. I have a relative that stopped growing early because of the hormonal effects of large amounts of soy from a young age. Sorry if I confused anyone into thinking I was advocating for soy or that Ensure was milk-free. I was using ensure as an example of a nutritional supplement rather than advocating that was the one the OP should try.

No problems - just a side note - from personal experience with Ensure - soy and milk. It messed me and my hubby up.

[RockiesGirl]

I'm so very sorry to hear about your son. Hang in there and like everyone is saying there are A LOT of wonderful people on here & lots of help!!! I was just diagnosed in Jan. after years of searching so let me preface that I am a Newbie. With that said, Milk has always been one of my huge issues and seemed to aggravate my symptoms. I wasn't always this way, but when I was pregnant with my children I existed on DAIRY.... I think I ate so much of it that my system just said forget you...NO MORE. I got so sick from it, that was one of my 1st hospital stays. The only way we figured it out was that I was put on a strict diet, gradually improved and kept a strict record of what I was eating. DAIRY was no Bueno. Anyway, I say all of this because it seems to be a common thread amoungst alot of us.

I have changed from Milk to Almond Milk and Coconut Water....your son might not like the coconut water at first but mix it. The Coconut Water has some Great things in it.

My prayers are with you and please keep us posted!!!!

[swreeder70]

Thanks everyone for all the responses. The information is very helpful.

To answer a few questions, Mason's worst symptoms are dizziness, jittery feeling, vision problems, headache, weakness (he calls it marathon legs), cramps/joint pain and the inability to stand or sit. He has a lot of other come and go symptoms, but the ones listed are here all the time and do not go away.

As to the Milk, he has always (like everyone in our family) consumed only milk. He has about doubled his daily intake per our Dr's recommendations, but has not had issues in the past with Milk. For now we are not going to change his diet, until either the Dr recommends too or his treatment continues to be ineffective. I'd rather be a little conservative here than change a bunch of things at once and not know which one of them really effected him.

We hope to get some more information from his Dr by the end of the week on what his recommendation is for next steps.

[Christy_D]

My son calls it 'licorice legs', how funny the adjectives they use for this problem. He has not had this problem for over a year, when he started doxepin. The doxepin took away many of his symptoms-ie licorice legs, hot spells, abdominal cramping and the fludrocortisone helped with the dizziness. Hopefully, you can find a medication to help at least with some of the symptoms.

My son is different, in that he has gained a lot of weight from inactivity. He is nauseated everyday all day in varying degrees of severity. Even with the nausea, he eats and eats. I don't know how he does it, but he does.

Christy

[swreeder70]

Just an update but Mason's Dr. has now prescribed Florinef as the next step in his treatment. Most likely start tomorrow, blood work in three days and then re-evaluation in 7-10 to determine how he is responding.

Thanks again to all those that are following and responding to this thread. It has been a great help!

[Victoria]

Just an update but Mason's Dr. has now prescribed Florinef as the next step in his treatment.

Florinef is a good choice and I truly hope it gives Mason some much needed relief. I'm taking Florinef, but I had to work my way up to the prescribed dose because it caused incredible anxiety for me. I built up by literally taking a tiny nibble a day. I'm hoping Mason doesn't experience this, but if he does, don't give up. The nibble approach works as long as his physician is okay with it.

Keep us posted.

[Kyler]

Kyler tried it when he was 12.

(repeat from previous flroinef post) It helped him with his BP dropping drastically when he stood. The problem was that it wired him to the point that he only slept for 2 hours /night for the 2 weeks when he was on it even at a very low dose like 0.025. It certainly decreased the fatigue but now he only takes it when he wants to have a sleepover so he can be like normal kids and stay awake. He started going crazy from lack of sleep. I think that we may try it again because he is much worse than he was the last time we tried it. I am going to take victoria's advice and try nibbles first. We started at 0.1 and worked our way down the last time. Kyler has to take 10mg of midodrine every 2 hours to get a benifit from it so the doc figured that we would start high with Florinef - lesson learned.

Mason's dad,

I caution you to be very observant when trying new meds. There are so many options and it really is a trial and error but we have had some not so good times with meds. The first beta blocker we tried debilitated him to the point that i thought that he was going to bed ridden - we found that it simply lowered his HR to a normal person's and that was too low for him to compensate for the orthostatic issue - his BP was oddly as high as 168/122 when he was on it - it took 2 weeks for me to realize that it was the BB. When we tried mestinon it sent us on our first trip to the ER for POTS related issue. It did crazy things to him but not until it built up in his system over 4 days. That was really scary. The flroinef reaction was very benign but not tolerable for Kyler all the same. We also had to cut his current BB perscribed dose in half because it lowered his sitting BP below 100 the fist time we gave him the full dose so back down we went. You need to talk to his doctor about you being able to monitor him and either use your own common sense and step down or off when there is an issue or call them when you notice a problem. Do you have an auto cuff at home? Kyler prefers the wrist one because it doesn't hurt him. The one we have tells BP and HR - I love it.

Good luck. I hope that he starts feeling better. This is so hard to understand and cope with. It took us about a year to get into a groove and not feel like we were in crisis mode. That feeling comes back when he gets sicker each year at this time. This support group is AWESOME - I just came back here after a year and I felt better after the first day on here.

Serena