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Help! Question About Florinef For My Kid....


cmtaylor5
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Hi,

My almost 14 year old son who was diagnosed with orthostatic intolerance in March by our family doctor, saw a new pediatric cardiologist today.

My son has been feeling pretty crummy and exhausted lately. Although I'm a POTSie myself, I don't have the terrible problems with blood pooling and presyncope that he has. I am well controlled with a low dose beta blocker.

At the appointment today, my son's resting pulse was 98, and his sitting to standing pulse was 196. He also had pronounced blood pooling in his feet, calves, and hands. Naturally, he is exhuasted and feels lousy.

The doctor feels that it is time for Florinef. Although I see it mentioned all the time on the forum, and I think it has to do with increasing blood volume, I don't know much about it. Our family doctor had told us that our son was definitely too young for Florinef, and that if it was his kid, he'd never use it.

Is there anybody out there who can tell me more about it? Is there anybody on the forum who has a child/adolescent that takes it? The doc today said he'd "never seen anyone have a problem with it". Such differing opinons.....so I thought I'd ask all of you who are the real experts!

Carolyn

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Hi Carolyn

I might not be the most indicated to answer your question. Furthermore, I am not a specialist but as my Cardiologist prescribed Florinef and I have not been able to access it (it is not sold in Spain), we both decided trying with Licorice Root and - up to now - it has been a success.

Licorice Root is not a medicine, it is natural but it has worked with me.

Maybe you can mention the possibility to try it first and if it does not work you can start with Florinef later.

Not all the specialists agree to use something natural, but as you mention that your son is young... Could be worth trying.

Of course, do not forget that if your son tries with Licorice Root, he will have to check the electrolytes the same way as if he were taking Florinef.

It is just a suggestion, another option.

Take care,

Love

Tessa

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Hi Carolyn,

My 14 y/o son also has orthostatic intolerance (OI) and has been taking florinef for about 2 years. You don't mention which type of OI your son has, but it sounds like POTS given the information you have shared. My son has Neurally Mediated Hypotension (NMH.) His BP used to drop to almost nothing several times a day. Both POTS and NMH are treated similiarly and florinef has been a miracle for Mack.

Mack's doctor (Dr. Peter Rowe from Johns Hopkins) had him try increasing fluid and adding salt to his diet, first. Both helped, but not enough. He started with a half a florinef, .05mg, and worked his way up to .2mg. Dr. Rowe increased his dosage by 1/2 tablet a week until he reached a therapeutic dosage. .2mg is the maximum Dr. Rowe recommends for children. We were told to look out for a horrible headache as that may be a sign that the dosage is too high. Mack never got a headache from the florinef.

All the while we were upping the florinef, we were also increasing the salt in his diet. You are right that florinef increases blood volume, but ONLY if you also increase the salt and fluid while taking the florinef. Mack took 2 Thermotabs (salt tablets) that are sold OTC after each meal. His ped regularly checked his electrolytes while we were determining a therapeutic florinef dosage for Mack. Florinef can cause some to lose potassium. Mack's bloodwork never showed a deficiency, but his ped had him take a daily supplement to keep his electrolytes balanced. Mack also drank MANY 20 oz bottles of water a day.

Florinef can cause a bit of an increase in appetite. We saw that as a plus as my son has always been a bit underweight due in large part of GI motility problems caused by the OI. I know that florinef has steroidal properties, but none of the negative side effects associated with more traditional steroids. Florinef helped Mack to effectively increase his blood volume and stopped his daily episodes of presyncope.

I did take Mack's BP weekly. After a year and a half of this treatment, his BP began to creep up to 140/90. With Dr. Rowe's help, we slowly titrated him down to .05mg (a half tablet) daily with only one Thermotab. Mack still drinks tons of fluid. His BP is great again 110/75. Occasionally, he experiences lightheadedness- during stress and schedule changes (i.e. traveling.) We've found that raising his florinef temproarily during these times is really helpful. Of course, I have to keep an eye on BP during these periods.

Mack is learning what his body needs. He is learning to check his own BP and knows when to increase salt and fluid based on his symptoms. I'm sorry that your son has to deal with this, but I wouldn't be afraid to cautiously begin adding florinef as part of his protocol. The help of an experienced and educated doctor (especially while finfing a therapeutic dose) is invaluable. Please feel free to PM me if you have any questions.

All the best-

Julie

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hi carolyn -

for the post part i would have passed on much of what julie/ mack's mom already detailed for you. while i didn't take it at 14, i did start taking it at 17 & took it for several years with the only problem being hypokalemia (low potassium) which was remedied with potassium supplements. it was prescribed to me by a top autonomic doctor as well & never a concern to any other doctors i saw over the years (autonomic specialists or otherwise).

while florinef doesn't agree with and/or help everyone, there aren't really any meds that do since we're all individuals with unique bodies that react differently to different things. and while some do have a tough time with florinef i haven't heard of anyone have a problem that didn't then subside upon stopping it. obviously you & your son have to make the decision, but while there are some risks with florinef (or with any medication) i would argue that they are small in comparison to the possible improvement in your son's quality of life. trying th florinef now doesn't mean it has to be forever so you can always re-evaluate at a later date.

it sounds that the new cardio you saw is fairly educated in regard to OI & treatments so - with all respect to your family doctor (as a good family doc is priceless!) - the idea that florinef is a definite "NO" for a 14 year old just doesn't line up with what is a fairly common treatment in young people with various types of dysautonomia. unless you son has another health issue that would be contraindicate florinef usage (i.e. periodic paralysis, wherein there are problems with potassium regulation in the body), it sounds very reasonable to give it a try.

i would encourage potassium monitoring though as this wasn't done for me initially & ended up being problematic. if caught early though it's generally able to be taken care of quite easily.

hope this helps,

:) melissa

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I do agree with the others that florinef is an effective treatment for POTS and should not be ruled out. But I have a slightly different perspective. My cardiologist, who is not a POTS expert, put me on 0.1 florinef and then increased it to 0.2 when my symptoms persisted. I think he gave me florinef because he didn't know what other options were out there. Looking back I feel that even 0.1 was way too much for me, and I had a really hard time getting off of the florinef - it is a steroid, has some potentially strong side effects and takes a long time to leave your system. A couple of months later I got put on a beta blocker, which I think helped me more than the florinef. And I have been recently given midodrine, another drug to increase BP, which I greatly prefer to flornief because it is much easier to tolerate, can be taken as needed, etc. I really wish I had been given midodrine in the first place rather than florinef. It would have saved me several months of grief.

I would recommend seeing a POTS doctor and talking through the various medication options before starting anything. The Dinet page has a long list of things you can try. If your son has such a high HR upon standing, a beta blocker might also be a good place to start.

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i definitely agree with some of rita's points. and it is definitely true that there are various meds that can be a bit "easier" to try in some ways such that they have short half lives so don't need time to build up or work their way out of one's system. i think i had - for no good reason & perhaps incorrectly - assumed that your son had already tried some of these other options.

while florinef may be a good possibility there may be other options as well. if it were me i'd want to know (from the doc) "why florinef" aka why the doc thinks florinef is the best next step. there may be a very logical reason why the doc feels florinef would be best. but if it's only b/c he or she simply isn't aware of other options you may want to look further, i.e. see if this doc is willing to learn (via some readily available literature) or seek out another doc.

whether via florinef or something else, i hope your son finds some relief soon!

:) melissa

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I am 15, and my doctor didnt put me on florinef...yet, im going back tomorrow and if he does i will let you know. However i am on BB which has helped my HR to go down very much so!! I do still get the same amount of tachy, and am still just as tired however, i used to get migraines everyday...all day, and now i do still get them most every day, but they go away about an hour later. So though it sounds like im not much better off, i think its alot more tollerable. I would consider going on florinef if my doc thinks its the next best step since the BB isnt controlling my symptoms as much as i would like.

When i get back from my appt. tomorrow i will let you know what he had to say about florinef, as i am only a year older than your son, and would probably have the same meds that are good/bad for someone our age.

Good luck with your decision!

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Hi Carolyn,

I don't have an opinion on whether or not your son should take the medicine. I just wanted to say that florinef seems to be a minorly controversial treatment in the medical field. One of my in-laws, a very skilled pharmacist, doesn't like me taking it. And neither did my GP for the longest time, although the latest research has changed her mind a bit I think, as she actually upped my dosage recently. However, no specialist I've seen has had the tiniest concern about me being on it.

I'm not sure what causes the opinion gap between GPs and specialists, but it's definitely there.

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Hi,

A HUGE thank you to everybody who responded! All of your suggestions and input are so greatly appreciated! My husband and I feel much better equipped to make this decision now!

Having POTS is such a drag, but having a kid with it, for me, is just so much worse! It means so much that all of you are here to share information and understanding!

Thanks again!

Carolyn

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Hello again,

My doctor didnt say anything about putting me on florinef, but he didnt say anything against it either. He is just having me on beta-blockers, which are helping some, and are less risky i guess, so if your son hasnt tried those first i would sugest it.

good luck!

Mary

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