Caregiver Asking Questions

[Connie]

My son is 14 and has POTS. We first noticed problems when he was around 9 years old. He was first diagnosed with cyclic vomiting syndrome and then also IBS. It took several more years to obtain the diagnosis of POTS with hypermobility. My son has progressively gotten worse. 5th and 6th grade went to school until February. 7th grade went to school the first nine weeks and then was registered for the homebound school program. 8th grade went to school about one week before he was put on the homebound school program. Even being on the homebound program he was unable to complete any schoolwork after December due to memory loss and energy level. With his memory loss he has trouble accessing the information he has learned - brain fog. This year after several discussions we decided to home school. Hopefully less stress for everyone. Even though he always loved school and is very bright, he keeps saying he is so tired and cannot think. When he tries to complete schoolwork or even sometimes read, the task seem to deplete even more energy. I am hopeful some of you have experience with these symptoms. He has trouble sleeping and even when he sleeps ok he says he only has about an hour of a little energy. I have trouble getting him to take a shower because it makes his symptoms worse and his skin itches so bad. He very seldom goes out. He always says he doesn't feel like it. When we are able to go out he is even worse for a few days sometimes even a week even if we just go to movies.

A lot of POTS doctors say stay active do not stay in bed but how do you accomplish this if they constantly do not feel like moving around and if I push he starts falling or passing out. Does anyone have any experience with how to best handles these issues?

My son also has horrible headaches almost daily, stomach issues sometimes in the bathroom for 4-6 hours off and on during the day, extreme fatigue, problems with low pulse at times low being 40ish and a host of other symptoms. I am trying to stay optimistic but it is getting harder and we definitely do not want to deal with social services and school issues.

Sorry to write so much but I am hoping someone has experience with these issues and can offer suggestions.

Hope for all.

[Noreen]

You have a very tough road. I hope you have some support and are able to see a therapist. Being a 24/7 caregiver while being your child's educator is extremely hard. Aside from support I don't have a lot to offer.

Has your son had a sleep study? A certified pediatric sleep specialist might be able to offer some insights. One thing I noted is that the symptoms are worse in the winter months - adding 1000 iu of vitamin D is probably an idea worth considering along with full spectrum light bulbs in the house in case SAD is contributing to the problems.

With the hypermobility as well as the headache and dysautonomic issues, I am wondering whether it might be a good idea to have him evaluated for Chiari Malformation.

I hope you have a good pediatric doc for your son. It is so painful when our children hurt and we can't make it all better.

{{hugs}}

noreen

[Christy_D]

I'm sorry your son is going through this. My son is 15 and also has POTS. His was a gradual increase in symptoms, starting in the 5th grade until it became a daily event also. He, in the last month, has taken a turn for the better. He is finally going to school after missing a lot of 6th and 7th grade, missing .5 of the 8th grade and all of his 9th grade year.

Winters are worse for him, but after starting vitamin D last March, that was a big help. In February, he was in bed 20 hours a day. He was on Homebound, but we frequently had to cancel because he was to sick. He also took on line classes that our school district paid for. Now, he is attending school for 4 classes and taking 2 on line classes.

We had a follow up appt with his POTS specialists in August, they changed the dosages of his medications(upping 2 and decreasingj 1) and added more supplements. This seemed to be what we were waiting for. His medications were somewhat helping before, he was sick everyday until 12 or 2, but the new doses pushed him over the threshhold to being able to get out of bed by 9 and to school by 10am (still a little nauseas but it subsides).

As for exercise, he does water jogging. At first, he would be extra sick the day after exercising. But we kept him at it, and he finally built up his endurance and no longer crashes anymore from exercise. We are keeping our fingers crossed, since it has only been a month of him feeling better. I'm hoping he doesn't revert back in the winter.

My son also had the bad itching and the only thing that made him stop scratching was a cool shower.

I hope you can find that right mix of medications. It took us quite a while to find a medicine that did anything for him, and then it took a 10 months to figure out what dose was the most effective for him. Don't give up hope, I know there were times I thought there was no light at the end of the tunnel, but we just kept looking for answers. I credit his doctors, they are very compassionate and quite knowledgeable.

Christy

[juliegee]

Your post breaks my heart. I've been there too- with my son. Even the cyclic vomiting, bardycardia etc. Your son was DXed very early, which makes me think you must have a great doctor or team- somebody "got it" pretty quickly.

My son, also very bright, was forced to drop out of school in the 7th grade because his symptoms were so severe. He missed most of that year, but after being DXed at Hopkins and getting him on a good treatment plan (lots of trial & error!), he was able to attend 8th grade (full-time) and has ever since. Many medications, life style modifications, school accomodations, and pure grit have made this possible. He's now a senior in High School.

That year he was out of school, (in retrospect) I made a mistake by overly pushing school work. I used his school's texts, lesson plans, quizzes, tests, etc. I kept on thinking he'd be better & I could plunk him back in with his class. It was so hard- on both of us. We almost always got a late start because mornings were so bad for my son....so we often worked until dinner time and beyond. He lied down to do much of his work. He was even upside down sometime to get blood to his brain because the brain fog was so bad . I learned to bring in tutors from a local university for Pre-Algebra & Bio- not my strong subjects. That was a great break for me & fun for my son to hang out with college guys. Definitely consider bringing in outside help with schooling.

Some things that were a big help were using alternative therapies along with Western medicine. He saw a specialized PT, who performed Manual Therapy (recommended by Hopkins), twice a week. That was really helpful. I also tried to walk with Mack every evening as his symptoms allowed. We started with a block and worked up to several miles. De-conditioning doesn't cause POTS, but it certainly exacerbates it. Each week I tried to get him out of the house a few times- very hard. He got so sick even riding in a car- he just wanted to stay home. The grocery store, the pharmacy, or his school (to pick up work) would be our big outings. i did all I could to make them fun & special. I tried to bring friends over, but (for the most part) they didn't get it- a few did. Showering at night was better than in the AM- he was way too symptomatic then.

Please let us know what you've tried so far so we can try to help. Also, do you have a good doc guiding your son's treatment now? Please know that you're not alone. You are a wonderful Mama. Be sure to take extra special care of yourself during this difficult time.

Hugs-

Julie

[Sarah4444]

Your post fills me with terror. I am currently struggling to get proper diagnosis/treatment for POTS and am at the house-bound stage. However, over the past year my six year old son has had strange medical problems (GERD, joint pain, extreme fatigue and feeling unwell in the mornings, "mommy my heart is beating funny", insomnia...). I am terrified that he might be developing POTS; I have struggled with this for 25 years and my only consolation was that at least it is me suffering with this, and my children were healthy. I can't stand the thought that he might have to go through this, with such inadequate medical care, and I don't know how I'd look after him when I can't even look after myself at this point.

Can other moms with affected kids tell me how POTS first presented and if there is anything they wished they had done differently, that might have made things go more smoothly?

[juliegee]

Your post fills me with terror. I am currently struggling to get proper diagnosis/treatment for POTS and am at the house-bound stage. However, over the past year my six year old son has had strange medical problems (GERD, joint pain, extreme fatigue and feeling unwell in the mornings, "mommy my heart is beating funny", insomnia...). I am terrified that he might be developing POTS; I have struggled with this for 25 years and my only consolation was that at least it is me suffering with this, and my children were healthy. I can't stand the thought that he might have to go through this, with such inadequate medical care, and I don't know how I'd look after him when I can't even look after myself at this point.

Can other moms with affected kids tell me how POTS first presented and if there is anything they wished they had done differently, that might have made things go more smoothly?

Gosh, your post breaks my heart, too. These kids suffer so much and so long before they get help. You & the above poster are far ahead of the game. Early signs for my son were:

-SEVERE colic as an infant

-Great difficulty falling asleep as an infant

-cyclic vomiting

-fussy eater/limited repetoire

-headaches (especially after a long day or lots of activity)

-SEVERE constipation (repeatedly checked for Hirschprung's, Celiac, etc.)

-Bleeding from rectal tears

-fatigue after activity

-Severe aches and pains after activity

-SEVERE growing pains

-Nausea & vomiting prior to a stressful event

-Car/motion sickness

-Learning problems (cognitive fog/slow speed processing) that were impossible to ignore around 4th grade, despite obvious intelligence.

As far as how to handle it differently...I don't see how I could have given what I knew. YOU know better & have early suspicions. I would recommend doing a poor man's tilt table test at home & confirm any autonomic issues. Have your child lie still for 10 mins and take pulse and BP (best with an automatic cuff.) Then have him stand perfectly still- no fidgeting at all (no TV!) for ten minutes. Every 2 mins. take vitals and record. If his HR rose over 30 BPM, he's got POTS. NMH is harder to confirm at home- that's where your child's BP plummets suddenly. Both have similar symptoms and treatments.

If you document an irregularity, along with any other classic dysautonomia symptoms, I would recommend getting your child to an electropysiologist, who is familiar with dysautonomia for evaluation...that might mean a large teaching hospital. Many/most of us have had to travel for DX and ongoing treatment.

If your child has an autonomic dysfunction, I can almost guarantee that it will worsen at puberty or during a big growth spurt . If you have a plan in place, you will be ready to deal with that so much more effectively than I did.

You are a wonderful Mother to be open and receptive to this possibility while your child is so young. By being proactive, you hopefully won't have to delay DX and treatment like so many of us whose children's severe symptoms presented as young teens.

Once again, take care of yourself first. There is a reason they tell YOU to put the oxygen on first, in the unlikely event of cabin depressurization , when you fly. You can't be a good Mama if you are unDXed and untreated yourself.

Hugs-

Julie

[Sarah4444]

Thank you so much, Julie. This probably sounds silly but I have been afraid to do the at-home TTT on him, but you are right that it really makes sense to try to figure out what's going on and have a plan if possible. I am trying very hard to get proper treatment for my own POTS, and hope to have some energy to look after the kids soon. Your description of your son's infancy, suggestions and advice are deeply appreciated. Man, this is exhausting isn't it.

Sarah

[Connie]

Your post breaks my heart. I've been there too- with my son. Even the cyclic vomiting, bardycardia etc. Your son was DXed very early, which makes me think you must have a great doctor or team- somebody "got it" pretty quickly.

My son, also very bright, was forced to drop out of school in the 7th grade because his symptoms were so severe. He missed most of that year, but after being DXed at Hopkins and getting him on a good treatment plan (lots of trial & error!), he was able to attend 8th grade (full-time) and has ever since. Many medications, life style modifications, school accomodations, and pure grit have made this possible. He's now a senior in High School.

That year he was out of school, (in retrospect) I made a mistake by overly pushing school work. I used his school's texts, lesson plans, quizzes, tests, etc. I kept on thinking he'd be better & I could plunk him back in with his class. It was so hard- on both of us. We almost always got a late start because mornings were so bad for my son....so we often worked until dinner time and beyond. He lied down to do much of his work. He was even upside down sometime to get blood to his brain because the brain fog was so bad . I learned to bring in tutors from a local university for Pre-Algebra & Bio- not my strong subjects. That was a great break for me & fun for my son to hang out with college guys. Definitely consider bringing in outside help with schooling.

Some things that were a big help were using alternative therapies along with Western medicine. He saw a specialized PT, who performed Manual Therapy (recommended by Hopkins), twice a week. That was really helpful. I also tried to walk with Mack every evening as his symptoms allowed. We started with a block and worked up to several miles. De-conditioning doesn't cause POTS, but it certainly exacerbates it. Each week I tried to get him out of the house a few times- very hard. He got so sick even riding in a car- he just wanted to stay home. The grocery store, the pharmacy, or his school (to pick up work) would be our big outings. i did all I could to make them fun & special. I tried to bring friends over, but (for the most part) they didn't get it- a few did. Showering at night was better than in the AM- he was way too symptomatic then.

Please let us know what you've tried so far so we can try to help. Also, do you have a good doc guiding your son's treatment now? Please know that you're not alone. You are a wonderful Mama. Be sure to take extra special care of yourself during this difficult time.

Hugs-

Julie

Sorry to take so long to reply. My son is on Topamax, Sertraline, Fexofenadine, Fludrocortisone, Prevacid, Melatonin, vitamin D, and calcium.

We have tried Rozerem for his sleep. Makes him too groggy and sluggish. We have tried Adderall, Dextroamphetamine, Strattera and Ritalin for the brain fog and to give him energy but they made him feel worse except for the Strattera which did not help. The other three made him jittery and feel as if his heart was racing. After the medication wore off he would be exhausted - more so than normal. We tried Clondine and Midodrine. The Midodrine made him feel as if he was freezing, he stayed under two blankets and shook all day. His hands and feet felt ice cold. We also have tried several things for stomach cramps and upset stomach. He goes through periods if he tries to push himself of hours of upset stomach for several days. At one point it went on for months.

His main problem are headaches and fatigue like most other people. In addition is the brain fog and not being able to access information. If we try to do school work, his head starts hurting and he feels wiped out. He becomes extremely frustrated when he knows he should remember something but can not access the information.

When I asked the cardiologist about having a sleep study done - he commented that it is unheard of for children to have sleep apnea.

Any suggestions would be appreciated.

[Noreen]

When I asked the cardiologist about having a sleep study done - he commented that it is unheard of for children to have sleep apnea.

Any suggestions would be appreciated.

Your cardiologist is misinformed. Children can have sleep apnea as well as other sleep disorders. My son sees a pediatric sleep specialist. Hopefully there is one associated with a sleep clinic in your area.

[Noreen]

When I asked the cardiologist about having a sleep study done - he commented that it is unheard of for children to have sleep apnea.

Any suggestions would be appreciated.

While checking on links for another post, I ran across this on the American Sleep Apnea Association website -"Having your child evaluated for Sleep Apnea".

I hope you find the information useful.

[Christy_D]

My son also had a sleep study done when he was 14. While he did not have sleep apnea, he does have restless leg syndrome. His POTS doctors have him on Doxepin, it takes care of a lot of his POTS symptoms, plus it has a sedative it in that helps him sleep. He takes the Doxepin with Melatonin. Since we upped his dose of doxepin last month, he has been sleeping great.

Christy

[juliegee]

Sorry to take so long to reply. My son is on Topamax, Sertraline, Fexofenadine, Fludrocortisone, Prevacid, Melatonin, vitamin D, and calcium.

We have tried Rozerem for his sleep. Makes him too groggy and sluggish. We have tried Adderall, Dextroamphetamine, Strattera and Ritalin for the brain fog and to give him energy but they made him feel worse except for the Strattera which did not help. The other three made him jittery and feel as if his heart was racing. After the medication wore off he would be exhausted - more so than normal. We tried Clondine and Midodrine. The Midodrine made him feel as if he was freezing, he stayed under two blankets and shook all day. His hands and feet felt ice cold. We also have tried several things for stomach cramps and upset stomach. He goes through periods if he tries to push himself of hours of upset stomach for several days. At one point it went on for months.

His main problem are headaches and fatigue like most other people. In addition is the brain fog and not being able to access information. If we try to do school work, his head starts hurting and he feels wiped out. He becomes extremely frustrated when he knows he should remember something but can not access the information.

When I asked the cardiologist about having a sleep study done - he commented that it is unheard of for children to have sleep apnea.

Any suggestions would be appreciated.

Hey Hope-

I have a few thoughts. I re-read your initial post. One thing sticks out that isn't being addressed with his current med regimen: the itchy skin following a shower. That is a classic sign of excessive histamine release which causes autonomic (and a whole host of other) symptoms. Does he have any other skin issues? Weird rashes, hives, flushing, dermatographism (marks left after lightly scratching the skin)? I would encourage you to check out The Mastocytosis Society Website www.tmsforacure.org Click on:" What is Mastocytosis or Mast Cell-Related Disorder" Check out the host of symptoms, etc & see if you think that may help explain some of your son's issues. There is a subset of us (myself included) who experience autonomic dysfunction, a mast cell disorder & a connective tissue disorder.... If you think symptoms fit, adding an H-1 (antihistamine like zyrtec, claratin, allegra) and an H-2 (like zantac or ranitidine) may bring signifiant relief to all symptoms.

Strangely, the doxepin (old-fashioned antidepressant) that Christy describes is another option in folks with suspected mast cell disorders to calm down histamine release. Taken at night, it also helps with sleep and increases the appetite. Atarax is another PM option to consider. Cyproheptadine (an antihistamine) does similar stuff as the other two. This was recommended by my son's ped at Johns Hopkins in a liquid form taken just before bed. It was too sedating for Mack, but so is zyrtec

As far as a sleep study- GREAT IDEA. I agree with Reen- look for another doc that specializes in child sleep studies. I'm sure it will reveal a wealth of info. Getting the sleep issue resolved will help so much with daytime energy, etc. That being said hypersomnia & insomnia seem to be hallmarks for many of us

One other thought: his stomach issues aren't really being directly addressed. Many with autonomic issues suffer with slowed motility and subsequent excessive acid. The acid issue (GERD) and "D" are also classic with mast cell disorders. My son finds great relief with Nexium, ranitidine, and a GI prokinetic taken twice a day- prevents the nausea & vomiting and helps him to eat.

Last thought- turmeric. It's natural- Yay!- and brings many tremendous relief from the cognitive fog issues. I took it for several weeks and had MUCH better energy and cognition. It was as if a fog had lifted. Alas, I developed an allergy to it, Grrrrrr, and had to stop. It is being used with CFS patients for increased energy- the cognitive clarity is just a side bonus

Really LAST thought , my son also has bradycardia, very slowed cognitive speed processing, and no energy. CONCERTA has been a wonder drug for him in a low dose, 27mg (he weighs 165.) I see that you've experimented with lots of stimulant meds. Maybe consider giving this one a try. Mack also tried a host of others before settling on this one. He swears by it & actually supplements with a thermos of coffee that he brings to school. He says it helps him think.

You are not alone. So many here have children with similar issues. Keep posting and sharing. I've learned so much from other parents in the trenches.

Hugs-

Julei

[Christy_D]

"I have a few thoughts. I re-read your initial post. One thing sticks out that isn't being addressed with his current med regimen: the itchy skin following a shower. That is a classic sign of excessive histamine release which causes autonomic (and a whole host of other) symptoms. Does he have any other skin issues? Weird rashes, hives, flushing, dermatographism (marks left after lightly scratching the skin)? I would encourage you to check out The Mastocytosis Society Website www.tmsforacure.org Click on:" What is Mastocytosis or Mast Cell-Related Disorder" Check out the host of symptoms, etc & see if you think that may help explain some of your son's issues. There is a subset of us (myself included) who experience autonomic dysfunction, a mast cell disorder & a connective tissue disorder.... If you think symptoms fit, adding an H-1 (antihistamine like zyrtec, claratin, allegra) and an H-2 (like zantac or ranitidine) may bring signifiant relief to all symptoms.

Strangely, the doxepin (old-fashioned antidepressant) that Christy describes is another option in folks with suspected mast cell disorders to calm down histamine release. Taken at night, it also helps with sleep and increases the appetite. Atarax is another PM option to consider. Cyproheptadine (an antihistamine) does similar stuff as the other two. This was recommended by my son's ped at Johns Hopkins in a liquid form taken just before bed. It was too sedating for Mack, but so is zyrtec "

Julie,

You are just a wealth of information. My son used to have the itchy skin frequently and the only thing to make it stop was a cool shower. Once he started the doxepin, it was one of the symptoms that went away. I think I will look into the websites you listed to see what else might apply. Everytime I would mention the itchy skin to his doctors, pediatrician, etc. I didn't get much feedback from them. And now that it has stopped, I just figured it went away, but maybe it is the doxepin.

Thanks,

Christy

[PotsMom]

This is a great thread - thanks to all who are contributing.

Hope for All and Sarah4, I too can relate all too well to your son's stories. I have two teens with POTS - a daughter, 18, who has come a very long way from where she started at 12 and a son, 16, who has not had the significant progress she has had. The past several years have been a tough road - we all here can certainly attest to how tough it can be. My kids had very different onsets, and it took my daughter's very sudden and severe onset and the disabling start of her journey to bring to light my son's diagnosis. There is no doubt for me now that he has suffered with dysautonomia from a very young age. So many things make sense now when I look back with a dysautonomia perspective. He has always tired easily and from the beginning of school has struggled with anything that required memorization or anything that required significant mental effort. Intelligence testing showed that that was not the problem, and no one could figure it out. His symptoms grew in number and severity as he neared puberty, and when we did the poor man's tilt on him at home a year into my daughter's diagnosis, there was no doubt. His formal tilt shortly thereafter was very strongly positive.

For both of my kids fatigue and fatigue with mental exertion have been the most problematic and most difficult to deal with issues, with sleep issues being large as well. For my son formal traditional schooling is impossible as he fatigues severely within five to 10 minutes of reading, listening to lectures, or anything that requires significant mental exertion, We have tried multiple medications including stimulants and antidepressants with no relief. Because sleep has become a major and worsening issue, our physician has recommended a sleep study, and we are currently working on setting that up. I believe one comment was made here that a doctor had said that sleep studies are not done on children/adolescents. They most definitely are, but you do have to look a little harder to find a sleep clinic that works with children and adolescents. You also have to look closely at pricing as this study is expensive to begin with, and we found that the only sleep clinic in our area that accommodates adolescents is a pediatric clinic and we learned that their charges are far and above the going rate for sleep studies. Thus we are currently looking at other possible locations.

Julie and Christy, I have followed here and on other similar threads some of the things you have shared that have been helpful with your sons. I have made notes of some of these to ask our doctor about experimenting with after we have had the sleep study. The doctor understandably did not want to try any new medications until the sleep study is done. I do appreciate you taking the time to share things that have been helpful.

Thanks to all for sharing. This place is a valuable resource and support.

[Lenna]

Hello all,

It's so heartbreaking being the parent of a child who is struggling. You've said it all; there isn't much I can add. I do have a question for PotsMom. You said that your son can't participate in formal schooling because he tires so easily. So what are you doing about your son's education? My son did not graduate from high school last June. Now he's in his 5th year of high school and I doubt that he will graduate this year either. It has nothing to do with intelligence. In fact, he's incredibly smart. It has to do with mental and physical fatigue. A home bound program wouldn't help because when he's too sick to go to school, he's too sick to study at home. So how do these kids get an education?

[Connie]

Sorry to take so long to reply. My son is on Topamax, Sertraline, Fexofenadine, Fludrocortisone, Prevacid, Melatonin, vitamin D, and calcium.

We have tried Rozerem for his sleep. Makes him too groggy and sluggish. We have tried Adderall, Dextroamphetamine, Strattera and Ritalin for the brain fog and to give him energy but they made him feel worse except for the Strattera which did not help. The other three made him jittery and feel as if his heart was racing. After the medication wore off he would be exhausted - more so than normal. We tried Clondine and Midodrine. The Midodrine made him feel as if he was freezing, he stayed under two blankets and shook all day. His hands and feet felt ice cold. We also have tried several things for stomach cramps and upset stomach. He goes through periods if he tries to push himself of hours of upset stomach for several days. At one point it went on for months.

His main problem are headaches and fatigue like most other people. In addition is the brain fog and not being able to access information. If we try to do school work, his head starts hurting and he feels wiped out. He becomes extremely frustrated when he knows he should remember something but can not access the information.

When I asked the cardiologist about having a sleep study done - he commented that it is unheard of for children to have sleep apnea.

Any suggestions would be appreciated.

Hey Hope-

I have a few thoughts. I re-read your initial post. One thing sticks out that isn't being addressed with his current med regimen: the itchy skin following a shower. That is a classic sign of excessive histamine release which causes autonomic (and a whole host of other) symptoms. Does he have any other skin issues? Weird rashes, hives, flushing, dermatographism (marks left after lightly scratching the skin)? I would encourage you to check out The Mastocytosis Society Website www.tmsforacure.org Click on:" What is Mastocytosis or Mast Cell-Related Disorder" Check out the host of symptoms, etc & see if you think that may help explain some of your son's issues. There is a subset of us (myself included) who experience autonomic dysfunction, a mast cell disorder & a connective tissue disorder.... If you think symptoms fit, adding an H-1 (antihistamine like zyrtec, claratin, allegra) and an H-2 (like zantac or ranitidine) may bring signifiant relief to all symptoms.

Strangely, the doxepin (old-fashioned antidepressant) that Christy describes is another option in folks with suspected mast cell disorders to calm down histamine release. Taken at night, it also helps with sleep and increases the appetite. Atarax is another PM option to consider. Cyproheptadine (an antihistamine) does similar stuff as the other two. This was recommended by my son's ped at Johns Hopkins in a liquid form taken just before bed. It was too sedating for Mack, but so is zyrtec

As far as a sleep study- GREAT IDEA. I agree with Reen- look for another doc that specializes in child sleep studies. I'm sure it will reveal a wealth of info. Getting the sleep issue resolved will help so much with daytime energy, etc. That being said hypersomnia & insomnia seem to be hallmarks for many of us

One other thought: his stomach issues aren't really being directly addressed. Many with autonomic issues suffer with slowed motility and subsequent excessive acid. The acid issue (GERD) and "D" are also classic with mast cell disorders. My son finds great relief with Nexium, ranitidine, and a GI prokinetic taken twice a day- prevents the nausea & vomiting and helps him to eat.

Last thought- turmeric. It's natural- Yay!- and brings many tremendous relief from the cognitive fog issues. I took it for several weeks and had MUCH better energy and cognition. It was as if a fog had lifted. Alas, I developed an allergy to it, Grrrrrr, and had to stop. It is being used with CFS patients for increased energy- the cognitive clarity is just a side bonus

Really LAST thought , my son also has bradycardia, very slowed cognitive speed processing, and no energy. CONCERTA has been a wonder drug for him in a low dose, 27mg (he weighs 165.) I see that you've experimented with lots of stimulant meds. Maybe consider giving this one a try. Mack also tried a host of others before settling on this one. He swears by it & actually supplements with a thermos of coffee that he brings to school. He says it helps him think.

You are not alone. So many here have children with similar issues. Keep posting and sharing. I've learned so much from other parents in the trenches.

Hugs-

Julei

[Connie]

Sorry to take so long to reply. My son is on Topamax, Sertraline, Fexofenadine, Fludrocortisone, Prevacid, Melatonin, vitamin D, and calcium.

We have tried Rozerem for his sleep. Makes him too groggy and sluggish. We have tried Adderall, Dextroamphetamine, Strattera and Ritalin for the brain fog and to give him energy but they made him feel worse except for the Strattera which did not help. The other three made him jittery and feel as if his heart was racing. After the medication wore off he would be exhausted - more so than normal. We tried Clondine and Midodrine. The Midodrine made him feel as if he was freezing, he stayed under two blankets and shook all day. His hands and feet felt ice cold. We also have tried several things for stomach cramps and upset stomach. He goes through periods if he tries to push himself of hours of upset stomach for several days. At one point it went on for months.

His main problem are headaches and fatigue like most other people. In addition is the brain fog and not being able to access information. If we try to do school work, his head starts hurting and he feels wiped out. He becomes extremely frustrated when he knows he should remember something but can not access the information.

When I asked the cardiologist about having a sleep study done - he commented that it is unheard of for children to have sleep apnea.

Any suggestions would be appreciated.

Hey Hope-

I have a few thoughts. I re-read your initial post. One thing sticks out that isn't being addressed with his current med regimen: the itchy skin following a shower. That is a classic sign of excessive histamine release which causes autonomic (and a whole host of other) symptoms. Does he have any other skin issues? Weird rashes, hives, flushing, dermatographism (marks left after lightly scratching the skin)? I would encourage you to check out The Mastocytosis Society Website www.tmsforacure.org Click on:" What is Mastocytosis or Mast Cell-Related Disorder" Check out the host of symptoms, etc & see if you think that may help explain some of your son's issues. There is a subset of us (myself included) who experience autonomic dysfunction, a mast cell disorder & a connective tissue disorder.... If you think symptoms fit, adding an H-1 (antihistamine like zyrtec, claratin, allegra) and an H-2 (like zantac or ranitidine) may bring signifiant relief to all symptoms.

Strangely, the doxepin (old-fashioned antidepressant) that Christy describes is another option in folks with suspected mast cell disorders to calm down histamine release. Taken at night, it also helps with sleep and increases the appetite. Atarax is another PM option to consider. Cyproheptadine (an antihistamine) does similar stuff as the other two. This was recommended by my son's ped at Johns Hopkins in a liquid form taken just before bed. It was too sedating for Mack, but so is zyrtec

As far as a sleep study- GREAT IDEA. I agree with Reen- look for another doc that specializes in child sleep studies. I'm sure it will reveal a wealth of info. Getting the sleep issue resolved will help so much with daytime energy, etc. That being said hypersomnia & insomnia seem to be hallmarks for many of us

One other thought: his stomach issues aren't really being directly addressed. Many with autonomic issues suffer with slowed motility and subsequent excessive acid. The acid issue (GERD) and "D" are also classic with mast cell disorders. My son finds great relief with Nexium, ranitidine, and a GI prokinetic taken twice a day- prevents the nausea & vomiting and helps him to eat.

Last thought- turmeric. It's natural- Yay!- and brings many tremendous relief from the cognitive fog issues. I took it for several weeks and had MUCH better energy and cognition. It was as if a fog had lifted. Alas, I developed an allergy to it, Grrrrrr, and had to stop. It is being used with CFS patients for increased energy- the cognitive clarity is just a side bonus

Really LAST thought , my son also has bradycardia, very slowed cognitive speed processing, and no energy. CONCERTA has been a wonder drug for him in a low dose, 27mg (he weighs 165.) I see that you've experimented with lots of stimulant meds. Maybe consider giving this one a try. Mack also tried a host of others before settling on this one. He swears by it & actually supplements with a thermos of coffee that he brings to school. He says it helps him think.

You are not alone. So many here have children with similar issues. Keep posting and sharing. I've learned so much from other parents in the trenches.

Hugs-

Julei

Julie,

Thanks for all the great information. I will go to The Mastocytosis Society Website and check it out. Yes his cardiologist did mention a possible histamine problem but never addressed it or even recommended it be addressed. for time to time he had what we thought were allergic reactions to something - twice so bad we went to Dr and he had shots to alleviate his symptoms. One time we were out of town and it became so bad we had to call 911 and they meet us on the side of the road. His skin looked like he had been dipped in boiling oil, his lips were swollen and his ears were so swollen they were sticking way out. He had severe stomach cramps and nausea. They gave him two shots of epinephrine before we reached the hospital and the hospital kept him over night. I remember they kept asking me if we were sure he was having a allergic reaction to something and I kept telling I did not know for sure what the problem was. We could not figure it out. Since that time we have Epipins and he has not another reaction that bad since. If he feels like a reaction is starting he takes two benadryl tablets and that usually helps. He does take allergra/fexofenodine twice a day for allergies.

As for his stomach - I did forget he takes Prevacid and that helps him but sometimes he mentions excessive acid. There are days when he feels so bad I can not get him to eat very much. Either nothing sounds good or he is too tired. I will try to go out tomorrow and find some turmeric. That sounds very promising. Brain fog is a huge problem. We tried school work again today with science after 25 - 30 minutes he was shaking all over and getting very frustrated saying he had enough. That is very frustrating for both of us because he is very intelligent and I keep trying to help find a way he can learn without putting too much pressure on him. But hardly anyone understand why he can not go to school or at least do home school. But by the time we start he becomes so washed out. Hopefully the turmeric will help. He weighs 145 pounds - how much turmeric do you take?

I am going to talk to our primary care physician and see if we can schedule a sleep study. We found out about the bradycardia when we had the tilt table test done. His pulse dropped to 37 and then 40 -42. After having the halter test, the cardiologist said this was an additional problem and would account for him being so fatigued but could not recommend anything else except a stimulant for energy. He did mention a pace maker but did not think it would help.

Thanks for the suggestions. I am so glad I found the Forum. It is so great to be able to chat with people that have the same problems because so many people health care providers included do not understand.

Hope

[Connie]

Hello all,

It's so heartbreaking being the parent of a child who is struggling. You've said it all; there isn't much I can add. I do have a question for PotsMom. You said that your son can't participate in formal schooling because he tires so easily. So what are you doing about your son's education? My son did not graduate from high school last June. Now he's in his 5th year of high school and I doubt that he will graduate this year either. It has nothing to do with intelligence. In fact, he's incredibly smart. It has to do with mental and physical fatigue. A home bound program wouldn't help because when he's too sick to go to school, he's too sick to study at home. So how do these kids get an education?

I do not know about PotsMom but I do know my son has a terrible time trying to learn. I was hoping doing Homeschool would take some pressure off of him but after 25 - 30 minutes he will start shaking all over and getting very frustrated saying he had enough. That is very frustrating for both of us because he is very intelligent and I keep trying to help find a way he can learn without putting too much pressure on him. But hardly anyone understand why he can not go to school or at least do home school. My primary care physician has advised me to try not to worry too much about him learning now because when he gets better "he will catch up." I guess we all are very fortunate most POTS patients are very intelligent.

[Christy_D]

Lenna,

My son took on line classes and did 2 homebound classes. The school sent 2 teachers, 1 every other day, for Math and English. For math, the teacher taught it to him and he only had to take the tests, not the busy work. Same for English, a lot of assignments were dismissed. For the on line classes, the state paid for them, but it has since been cut out of the state budget. So now the school pays for the on line classes.

My son is back to school for 4 hours a day, after being out for 1.5 years. He is taking the other two classes on line. With his 504 plan, his assignments can be modified or completely excused. Do you have a 504 plan?

Christy

[PotsMom]

Lenna,

That'a a great question - how these kids get an education - it's a huge dilemma.

There are so many different scenarios with the various kids/patients. My own kids are certainly examples of that. My daughter was out of school entirely for over a year. She had such a good record as a student that they simply wrote off part of that time and passed her to the next grade. She then homeschooled for a while which gave us a lot of flexibility, without which she would not have made it, and then her junior and senior years she attended classes part days and had a 504. Even so there were many tears and many days I didn't think it was possible. However, she graduated last spring and it brought proud tears to my eyes to see her walk across that stage. She would never have gotten through it without the homeschooling and the 504. Now college is a whole new dilemma. She is going to a community college this year and taking just a couple of classes. She is struggling with the reading because of the fatigue. She also did not qualify for college level math because it has been a while since she had algebra and with the memory issues she was not able to pass the qualifying math test so she is taking a high school level preparatory math class. She said the other day she just doesn't know if she can do it, but I told her we'll take it one step, one day at a time.

My son, however, fatigues so quickly and severely with studying, reading, etc. that formal schooling is just not possible. We have tried everything and many various scenarios, including the benefit of an IEP and attending for one or two classes a day, homeschooling, etc. and he just simply can't maintain the energy to do it. He has had some major crashes in the process of trying. With the last one he told me, "Mom, nothing is worth that - you have no idea what that feels like, it is not worth the price." His last crash over such an effort was well over a week. Thus I can understand why he feels that way. It is amazing to watch the fatiguing process - how quick and very severe the onset - it is quite obvious. I frankly don't know what the answer is, but I have finally accepted that he will likely not be able to get a high school diploma. My hope is that possibly over time he can prepare for the GED in tiny bits and pieces. Even that, though, may very well not be possible. It is frustrating because in spite of all of this he is a smart kid who is well-spoken and writes well. I am sure he is much better educated than many kids graduating from high school these days. He watches a lot of educational TV, video documentaries, etc. and it is amazing all that he has absorbed this way. It is frustrating though because without the "paper" to formally document his education, it is still going to be difficult as far as future. However, he can only do what he can do, and we will continue to take it one day, one step at a time.

Hats off to all these kids and the daily struggles of dealing with dysautonomia while also missing so much of the fun of being a kid and/or a teen.

[Lenna]

Hi, Thanks for the info about how your kids are getting through school. My son does have a 504 plan, has a couple of tutors and takes a couple of classes online. His school personnel are wonderful, beyond my wildest hopes. They are bending over backwards for him. But sometimes it's still impossible. English classes are IMPOSSIBLE. I try to understand why. He still does very well in math, still does well in spanish when working with a tutor, did well on his first biology test, but cannot write anymore. He can't write his English papers, he can't write his biology lab reports, etc. I suggested to him that we try to arrange oral presentations instead of written ones, and the thought of that sent him into a panic. He just can't seem to organize his thoughts anymore. His school has really given him bare-bone English assignments in order to pass the classes (he owes 2 English classes now) but he hasn't made a dent in them.

Then, of course, the other problem is that when he has a crash, he can go for a couple of weeks without doing school work at all. And then he's hopelessly behind.

It breaks my heart. This is a kid who was MIT bound. His friends are all freshmen in college this year while Dan still struggles to get through Junior Enlish.

But you all know this for yourselves...

[kjd111]

Oh my gosh, my heart goes out to all the parents here. And..........this scares me to death. My 15 year old daughter has OH, but not really POTS. She got this after a level II concussion. She got a formal diagnosis after 2 years of trying to find the right doctor who could tell me what was wrong - her bp drops severely standing up and her catecholamines are normal lying down but move not at all standing. Nor does she seem to produce much aldosterone standing (less than a 1 on the test). Does anyone know why the schoolwork is so exhausting? She is still in school, and i think (from reading here) perhaps quite fortunate to be able to do limited activity and carry a decent courseload. Of course, that's being on midodrine, dexedrine, florinef, indomethacin and propranolol. But, she definitely has lots of problems if she's studied a lot, or, strangely, if she is stressed out. The negative emotions seem to just crater her - its almost like she's not on any meds at all.

I had also wanted to ask those of you with kids who have the mast cell issues, how you got a diagnosis. Interestingly, she started having lots of "allergy" type issues and illnesses 2 years before blacking out and hitting her head. She has always had celiacs (diagnosed at 18 months) but at age 13, became allergic to everything, and i mean every type of grain, dairy, environmental thing. Before she got on the meds this past spring, she had 3 anaphylactic episodes in 4 months - never happened before and even in the ER, they didn't respond super well to the epinephrin, steriods and other things they gave her. They even sent us home once after 8 hours in the ER, with her face still swollen (but breathing was better). She has had an allergist look at everything - and they found lots of allergies through the skin tests, but he's done tryptase and c-reactive protein, looked at all the Ig's, complements, etc. and other than low IgM and a really poor result on the pneumococcal titre test, found nothing. He told me that if she had mast cell issues, her tryptase would be off, and it was normal so he just never pursued it further. The funny thing is, she hasn't had any anaphylactic episodes since starting with all the meds above......... but her biggest problem is that she "swells". When she is tired, hot, stressed or anxious, her capillaries seem to open up and tons of fluid just escapes into her tissues - from her mid-thighs up to her shoulders and including her face. She used to get flushed, but again that has stopped since the meds. I am starting to wonder if somehow the triggers above are bringing on some sort of "histamine" reaction. Has anyone ever seen this before? Thanks so much.

Kate

[juliegee]

"Julie,

Thanks for all the great information. I will go to The Mastocytosis Society Website and check it out. Yes his cardiologist did mention a possible histamine problem but never addressed it or even recommended it be addressed. for time to time he had what we thought were allergic reactions to something - twice so bad we went to Dr and he had shots to alleviate his symptoms. One time we were out of town and it became so bad we had to call 911 and they meet us on the side of the road. His skin looked like he had been dipped in boiling oil, his lips were swollen and his ears were so swollen they were sticking way out. He had severe stomach cramps and nausea. They gave him two shots of epinephrine before we reached the hospital and the hospital kept him over night. I remember they kept asking me if we were sure he was having a allergic reaction to something and I kept telling I did not know for sure what the problem was. We could not figure it out. Since that time we have Epipins and he has not another reaction that bad since. If he feels like a reaction is starting he takes two benadryl tablets and that usually helps. He does take allergra/fexofenodine twice a day for allergies.

As for his stomach - I did forget he takes Prevacid and that helps him but sometimes he mentions excessive acid. There are days when he feels so bad I can not get him to eat very much. Either nothing sounds good or he is too tired. I will try to go out tomorrow and find some turmeric. That sounds very promising. Brain fog is a huge problem. We tried school work again today with science after 25 - 30 minutes he was shaking all over and getting very frustrated saying he had enough. That is very frustrating for both of us because he is very intelligent and I keep trying to help find a way he can learn without putting too much pressure on him. But hardly anyone understand why he can not go to school or at least do home school. But by the time we start he becomes so washed out. Hopefully the turmeric will help. He weighs 145 pounds - how much turmeric do you take?

I am going to talk to our primary care physician and see if we can schedule a sleep study. We found out about the bradycardia when we had the tilt table test done. His pulse dropped to 37 and then 40 -42. After having the halter test, the cardiologist said this was an additional problem and would account for him being so fatigued but could not recommend anything else except a stimulant for energy. He did mention a pace maker but did not think it would help.

Thanks for the suggestions. I am so glad I found the Forum. It is so great to be able to chat with people that have the same problems because so many people health care providers included do not understand.

Hope"

______________________________________________________________________________________________________________________________________

Hi Hope-

Wow, sounds like a lot of his symptoms may be mast cell related. I, too, have had episodes of anaphylaxis and I'm allergic to nothing. I carry an epi-pen and have had to use it. When my mast cells are acting up, my autonomic stuff is so much worse. There have been studies linking POTS and Mast Cell Activation Disorder/MCAD. I first learned about it on the "Causes" section of this DINET website.

The daily allegra (and benadryl as needed) are good; but may not be enough. In mast cell disorders, patients must take daily H-1's ( you have that covered with the Allegra) and H-2's (Zantac or ranitidine.) The combo is what calms the mast cells down. Since your son is having excessive stomach acid issues, adding a daily ranitidine would address both issues. My son takes a Nexium in the AM, (and because MCAD is suspected,) he takes a ranitidine in the afternoon- that's about the time he may have break through acid from the Nexium anyways. Many patients, myself included, also add an anti-leuketreine/Singulair. I have pain upon breathing in if I don't take it- despite the fact that I don't have asthma.

I would also recommend that your son keeps up the Allegra in the AM, but takes something stronger at night like Doxepin, Atarax, or Cyproheptadine. All are potent H-1's, will help with sleep, and appetite. Atarax in the PM was life-changing for me. As long as I tae my meds, I am almost symptom free.

Keep a tiny pediatric dose of Ery-Ped (liquid erythromycin) in mind as a GI prokinetic. My son takes a half teaspoon AM & PM and it irritates his stomach just enough to make him REALLY hungry. He can't eat w/o it. Some here use domperidone the same way.

Finding a doctor who understands the mast cell issues & how they relate to dyautonomia is difficult. Tell me what part of the country you live in & I may be able to recommend a physician. There is a new website called Mastopedia, that has a forum. Folks there could also help you find a doc.

I know how hard it is to see your son suffer. He's lucky to have a wonderful Mama fighting for him. I suspect he can get to a much higher level of functioning once he gets onto a more effective med regimen.

Hugs-

Julie

[juliegee]

You are just a wealth of information. My son used to have the itchy skin frequently and the only thing to make it stop was a cool shower. Once he started the doxepin, it was one of the symptoms that went away. I think I will look into the websites you listed to see what else might apply. Everytime I would mention the itchy skin to his doctors, pediatrician, etc. I didn't get much feedback from them. And now that it has stopped, I just figured it went away, but maybe it is the doxepin.

Thanks,

Christy

Hey Christy-

Hardy a wealth of info; more like a suitcase full of troubles I think I PMed you a while back when I heard of your son's doxepin use. It's an unusual drug and rarely used except by allergists in patients with uncontrolled symptoms- it really calms mast cells down. I was on it for almost a year following a period of multiple anaphylactic attacks. It helped me tremendously, but in retrospect the side effects made it intolerable for me. I gained weight on it, maybe 10lbs- not fun in middle age . This may be a bonus for your son if his appetite is affected. I also felt cognitively and emotionally dulled. This can't make school work any easier for your son. I would suspect that he would get the same benefit from atarx in the PM, without the cognitive impairment. Just a thought.

Yes, very telling that the itching following a shower stopped once he started the doxepin. Those are the clues that help a doctor DX a mast cell disorder.

All the best-

Julie

[juliegee]

Oh my gosh, my heart goes out to all the parents here. And..........this scares me to death. My 15 year old daughter has OH, but not really POTS. She got this after a level II concussion. She got a formal diagnosis after 2 years of trying to find the right doctor who could tell me what was wrong - her bp drops severely standing up and her catecholamines are normal lying down but move not at all standing. Nor does she seem to produce much aldosterone standing (less than a 1 on the test). Does anyone know why the schoolwork is so exhausting? She is still in school, and i think (from reading here) perhaps quite fortunate to be able to do limited activity and carry a decent courseload. Of course, that's being on midodrine, dexedrine, florinef, indomethacin and propranolol. But, she definitely has lots of problems if she's studied a lot, or, strangely, if she is stressed out. The negative emotions seem to just crater her - its almost like she's not on any meds at all.

I had also wanted to ask those of you with kids who have the mast cell issues, how you got a diagnosis. Interestingly, she started having lots of "allergy" type issues and illnesses 2 years before blacking out and hitting her head. She has always had celiacs (diagnosed at 18 months) but at age 13, became allergic to everything, and i mean every type of grain, dairy, environmental thing. Before she got on the meds this past spring, she had 3 anaphylactic episodes in 4 months - never happened before and even in the ER, they didn't respond super well to the epinephrin, steriods and other things they gave her. They even sent us home once after 8 hours in the ER, with her face still swollen (but breathing was better). She has had an allergist look at everything - and they found lots of allergies through the skin tests, but he's done tryptase and c-reactive protein, looked at all the Ig's, complements, etc. and other than low IgM and a really poor result on the pneumococcal titre test, found nothing. He told me that if she had mast cell issues, her tryptase would be off, and it was normal so he just never pursued it further. The funny thing is, she hasn't had any anaphylactic episodes since starting with all the meds above......... but her biggest problem is that she "swells". When she is tired, hot, stressed or anxious, her capillaries seem to open up and tons of fluid just escapes into her tissues - from her mid-thighs up to her shoulders and including her face. She used to get flushed, but again that has stopped since the meds. I am starting to wonder if somehow the triggers above are bringing on some sort of "histamine" reaction. Has anyone ever seen this before? Thanks so much.

Kate

Hi Kate-

Sorry your poor daughter is dealing with this as well Nothing is worse than seeing your child suffer. Your daughter may have true allergies and not mast cell issues since she did turn up to have many real allergies. Uncontrolled allergy symptoms (whether they are mast-cell related or real allergies) will worsen autonomic symptoms. It is important to get her on a med regimen that effectively addresses that & autonomic issue will improve as well. However, folks with mast cell disorders can also have real allergies making it harder to untangle a DX .

I have a few questions and comments re. her allergy testing. Was her IgE high? It should have been given her allergies. If not, this points to a mast cell problem. In celiac disease, IgA is often low, was hers? With the low IgM and poor pneumococcal titre test indicate that her immune system is impaired. I hope she's being closely followed. Out of curiosity, was she on a beta blocker when the epi wasn't as effective as expected? That happened to me too. My doc had me on a beta blocker to help lower my HR, but didn't realize that it was in response to my crashing BP due to chronic anaphylaxis. The epi worked when I needed it, but not as well as it should have- I needed more at the ER.

Read my response to Hope above re. mast cell disorders and treatment. Tell me where you are in the country & I may be able to recommend a masto doctor that can connect things & properly DX her.

Hang in there. Your daughter is lucky to have you seeking answers. I have learned so much from the folks here.

Hugs-

Julie