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Add Meds, Pots And Our Kids


firewatcher

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My son has ADD. He is on Concerta, but does not eat or sleep well. The doctor that he sees is suggesting Guanfacine (Intuiv or Tenex) which is an alpha-adrenergic agonist: inhibits adenylyl cyclase activity (reduce brainstem vasomotor center-mediated CNS activation; used as antihypertensives, sedatives & treatment of opiate and alcohol withdrawal symptoms). Clonidine is in this drug class.

I have hesitated thus far because these drugs specifically target the brain chemicals that we all have problems with. I don't want to start a POTS problem in him if he is susceptible.

He is approaching puberty quickly and he is one of the smallest, thinnest kids in his class. I am concerned about the future effects of his not eating, but I am also concerned about his possible POTS predisposition.

So far, he has NOT shown any of the signs that I did by his age. He can run and spin like I have never been able to do.

Do any of you have ADD kids who took meds like this and did not get POTS?

What were the signs and symptoms that clued you in to their ANS issues?

How old were they when it happened?

I know that I've been POTSy since I was very young (5 or 6.)

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Firewatcher,

This is a GREAT question! I too have a son who is on meds for attention issues. My son is 12 and a half and I know puberty is coming. I worry about him because he is the one who has issues all along. He has been diagnosed with Developmental Coordination Disorder also known as Dyspraxia in some countries. He was put on the meds because they believe the DCD makes it hard for him to process information and after awhile he just checks out cause he is tired of trying to keep up. I believe his whole system is out of whack. He does well on his Ritalin so I dont know. I have bad feelings about just having him on stimulants period but this whole POTS thing has me worried. Are you more concerned with the new med possibly triggering POTS?

KC

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Firewatcher,

This is a GREAT question! I too have a son who is on meds for attention issues. My son is 12 and a half and I know puberty is coming. I worry about him because he is the one who has issues all along. He has been diagnosed with Developmental Coordination Disorder also known as Dyspraxia in some countries. He was put on the meds because they believe the DCD makes it hard for him to process information and after awhile he just checks out cause he is tired of trying to keep up. I believe his whole system is out of whack. He does well on his Ritalin so I dont know. I have bad feelings about just having him on stimulants period but this whole POTS thing has me worried. Are you more concerned with the new med possibly triggering POTS?

KC

Yes, that is exactly what I am concerned about. This is a fairly new treatment for ADD and there is absolutely nothing about how treatment during puberty effects the brain in later life. Since these drugs directly act on dopamine and norepinephrine, I'd hate to trigger something either by putting him on it or taking him off later. :(

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Oh Jennifer-

You don't want to hear what I have to say. The major way that my dysautonomia presented as a kid, teen is through hyperactivity. I felt better when I moved. Some researchers are already linking ADHD/ADD to dysautonomia. http://www.sounddoctrin.com/add_adhd.htm

That being said, my dysautonomia didn't really rear it's ugly head BIG TIME until after major life stresses: car accidents, surgeries, illnesses, childbirth, general anesthesia, etc.

My son, on the other hand, who is MORE severely affected than I am (I think :rolleyes: ) has shown symptoms from the beginning. He cried non-stop and inconsolably as an infant. He had major issues with vomiting and GI pain, later severe constipation. He often got a migraine with vomiting if he was too active (like a long B-day party.) He was always exercise-intolerant. He had excruciating myalgias & nueralgias his entire life. We didn't begin to understand until puberty hit and he grew 6 inches in a year. Then, he got sick with a virus, began vomiting, was unable to eat. He laid in bed for almost an entire year before we were able to get him DXed.

IF your son is already showing latent dyautonomia signs, I wonder if the stimulant medication that is keeping his weight down and is postponing the big puberty growth spurt that MAY set him off...something to think about. In a sense, you are already treating him for dysautonomia with the stimulant meds. I get that it's for ADHD, BUT Mack takes concerta for dysautonomia. Is this new class of drugs supposed to be taken with concerta OR in place of it? It's treating the same problem a different way which makes me less afraid of it. That being said, I KNOW how scary it is to begin medicating your child. I think Mack took over a dozen medications at age 12 :(

I am sorry for what this MIGHT mean. BUT, the good news is that you are a smart, educated Mommy- who will get him the BEST care ASAP. Your son won't lie in bed for a year like mine did without help... (You KNOW we tried sooner ;)) If needed, your son will get on a good med/lifesytle regimen promptly and hopefully will not experience major devastation.

I will pray he just has ADHD. Thats enough.

Hugs-

Julie

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My son, on the other hand, who is MORE severely affected than I am (I think :rolleyes: ) has shown symptoms from the beginning. He cried non-stop and inconsolably as an infant. He had major issues with vomiting and GI pain, later severe constipation. He often got a migraine with vomiting if he was too active (like a long B-day party.) He was always exercise-intolerant. He had excruciating myalgias & nueralgias his entire life. We didn't begin to understand until puberty hit and he grew 6 inches in a year. Then, he got sick with a virus, began vomiting, was unable to eat. He laid in bed for almost an entire year before we were able to get him DXed.

IF your son is already showing latent dyautonomia signs, I wonder if the stimulant medication that is keeping his weight down and is postponing the big puberty growth spurt that MAY set him off...something to think about. In a sense, you are already treating him for dysautonomia with the stimulant meds. I get that it's for ADHD, BUT Mack takes concerta for dysautonomia. Is this new class of drugs supposed to be taken with concerta OR in place of it? It's treating the same problem a different way which makes me less afraid of it. That being said, I KNOW how scary it is to begin medicating your child. I think Mack took over a dozen medications at age 12 :(

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Julie,

My son is NOT showing any POTS signs so far. He can run easily and doesn't have orthostatic issues with sudden postural changes like I always did. BUT, he does have headaches and the same sleep disorder that I have. He recently had neurofeedback sessions and the doc mentioned "anxiety-like" activity in his brain and sympathetic overactivity. She said he has almost no ability to relax.

This new drug is in conjunction with the Concerta and possibly as a replacement. My fear is that it will trigger a neurotransmitter cascade and cause POTS when the hormones kick in, especially if his appetite improves and he has that dreaded growth spurt.

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Wow you guys this is pretty interesting. I have been chatting with my Mom telling her that research is showing a connection between autonomic dysfunction and fibromyalgia. She has never had the POTS symptoms but she has been diagnosed with Fibro. Where I am a bit confused is my problems seemed to all come to a flaming head when I mistakenly took my sons Ritalin for my thyroid med one morning. I was in the ER that night and still felt like I was having a heart attack. They said it was a panic attack...I said "for 12 hours"? I have never been the same since. I do not believe I fit in the hyper POTS category either which I know can be linked to a problem with ridding excess norepi out of the system or something to that effect. I did read some articles about hyper POTS that linked it to fibro as well. Once I think I know something I feel like I know nothing! :) I do not know if my Dylan will develop POTS but I have been concerned about it since this happened to me. He seems to be growing well and isnt skinny by any means. His other condition keeps him less active as sports are hard for him. What is thought to be "puberty" exactly? I mean my older son who is 16 had underarm hair and all that by the end of 5th grade. Dylan is in middle of 6th and I still dont see any signs of hair growth. What do you guys think?

KC

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Julie,

My son is NOT showing any POTS signs so far. He can run easily and doesn't have orthostatic issues with sudden postural changes like I always did. BUT, he does have headaches and the same sleep disorder that I have. He recently had neurofeedback sessions and the doc mentioned "anxiety-like" activity in his brain and sympathetic overactivity. She said he has almost no ability to relax.

This new drug is in conjunction with the Concerta and possibly as a replacement. My fear is that it will trigger a neurotransmitter cascade and cause POTS when the hormones kick in, especially if his appetite improves and he has that dreaded growth spurt.

I also showed NO signs of dysautonomia- except hyperactivity. I had a great energy level. People regularly asked my Mother if I was hyperactive. I just felt better moving. Mack's presentation is totally different from mine.

I understand your concerns. But what if you are treating his condition before it aggressively manifests? This new med may PREVENT a neurotransmitter cascade.

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Wow you guys this is pretty interesting. I have been chatting with my Mom telling her that research is showing a connection between autonomic dysfunction and fibromyalgia. She has never had the POTS symptoms but she has been diagnosed with Fibro. Where I am a bit confused is my problems seemed to all come to a flaming head when I mistakenly took my sons Ritalin for my thyroid med one morning. I was in the ER that night and still felt like I was having a heart attack. They said it was a panic attack...I said "for 12 hours"? I have never been the same since. I do not believe I fit in the hyper POTS category either which I know can be linked to a problem with ridding excess norepi out of the system or something to that effect. I did read some articles about hyper POTS that linked it to fibro as well. Once I think I know something I feel like I know nothing! :) I do not know if my Dylan will develop POTS but I have been concerned about it since this happened to me. He seems to be growing well and isnt skinny by any means. His other condition keeps him less active as sports are hard for him. What is thought to be "puberty" exactly? I mean my older son who is 16 had underarm hair and all that by the end of 5th grade. Dylan is in middle of 6th and I still dont see any signs of hair growth. What do you guys think?

KC

Hey KC-

Dysautonomia IS correlated to both fibro & chronic fatigue syndrome. Google it. You may have a familial link going on... Mack doesn't have the same disorder as your son, BUT he does have an auditory processing disorder- meaning he doesn't always "Get" what is spoken. Does that sound a little bit like a part of what your son is dealing with?

As far as puberty, I think pubic hair is a good indicator. The 6 inches that Mack grew in a year was another good give away :D I really wonder if stimulant type meds control the kid's appetite enough to a point to delay the onset of puberty... although you say that Dylan is a good weight so maybe he's just a late bloomer.

I PRAY your son doesn't end up with this, BUT with your familial history you are smart to keep an eye on this to treat it early.

Hugs-

Julie

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