Help For My 10 Year Old Daughter

[seaboardbc]

Hi

I was diagnosed with POTS 8 yrs ago, so I am all too familiar with the symptoms. During the fall of 2009 our daughter had what the doctor believed to be H1N1 (but it wasn't confirmed with a diagnostic test). She was REALLY ill. She never fully recovered from the "flu" and ended up having her tonsils and adenoids removed in January 2010. She continued to have numerous throat and sinus infections throughout 2010. 2 1/2 months ago she was diagnosed with strep. She was put on antibiotics but even after taking the antibiotics exactly when she should and finishing them, she continued to have strep positive throat cultures (we know she's not a carrier because she's had negative cultures in the past) In a matter of 8 weeks she was put on 4 different antibiotics. During that time she had a low grade fever every day for over 1 month. She has been off antibiotics for 1 week, yet she still has a sore throat. One week after her first positive strep test, I got a call from the school nurse saying that my daughter was in her office for tachycardia (around 150 bpm). I know that this isn't a dangerously high rate for a child, but I took her into the pediatrician anyway. After examining her he called a pediatric cardiologist and she was put on a King of Hearts event monitor for a month. During the month she made several recordings (the highest her heart rate was recorded was 175 bpm at rest). Her symptoms were shortness of breath, chest pain sometimes, and feeling dizzy or faint and nausea. Even though her heart rate was fast, we were told that it was always normal (no arrhythmia). The cardiologist gave her an echo to rule out rheumatic fever. The echo was normal so as far as the cardiologist was concerned there was nothing wrong with her. Meanwhile she continues with all of these symptoms (last week I got a call from the school nurse that her HR was 180 (according to my daughter she was just sitting at the time and not thinking about anything because she was out in "Lala land", which I think she means she wasn't paying attention in class ) and I called the cardiologist and he once again told me there was nothing wrong with her and advised me to look at "social" issues that she might be causing her anxiety. I am ready to scream! She has tons of friends, she is a straight A student, she is a competitive figure skater and was always a happy go lucky kid. Her pediatrician called the cardiologist to discuss the possibility of our daughter having POTS (she explained that I have it). He told her that there was no way our daughter has POTS, because she has never fainted (the first time I fainted from POTs was 2 years ago and I was diagnosed because of the results of my tilt table test and Dr. Grubb confirmed the diagnosis). Sorry this is so long, but the bottom line is do you guys think that it sounds like POTS? If not, any other ideas? She has had extensive work-up by an ENT and she has also seen an immunologist a couple of times. The immunologist seems to think it could be an allergic response and did a lot of allergy blood testing (he said her skin was way too sensitive to do skin tests, she has eczema and dermatographia) which we will find the results for next week. It just kills me to watch my child suffer like this (especially not knowing what is wrong with her and whether or not it's serious) and I feel like the doctors treat me like I am a crazy mother. I posted on this website before I was officially diagnosed with POTS and I received a ton of helpful info. I pray that someone on the forum has some ideas or info that will help my daughter.

Thank you so much!!!

Bren

[PotsMom]

Bren,

With your own POTS diagnosis and now your daughter having these symptoms after a series of viral type illnesses, I would say that POTS/dysautonomia is a very strong possibility. I think pursuit of a dysautonomia workup (by someone with some expertise in dysautonomia as it will be a waste of time and money otherwise). The cardiologist you mentioned clearly does not have a clear knowledge of POTS.

I have two teens with POTS - my daughter's was sudden onset at age 12 after back to back viral illnesses and my son a much more gradual onset over a number of years. The scenario that you have described is a very typical onset. Also, there are various forms of dysautonomia, but true POTS does not typically involve fainting or fainting often. My kids have been lightheaded often but have never passed out except that my son passed out on the tilt.

Something that could help more definitively meanwhile is to do the poor man's tilt. I cannot momentarily locate the description of this online but basically it is to have your daughter lie down for a few minutes, use a BP monitor to take her BP and pulse, then have her stand quietly upright for two minutes and repeat at two-minute intervals for 10 minutes or so. I will try to find the complete description of this and forward the link to you. We found this test to be extremely helpful when we first began to suspect that dysautonomia was the root of my son's increasing difficulties. My daughter had been diagnosed a year earlier but her onset was quite different than his and it took us a while to recognize that the many increasing difficulties he was having were related to the same thing. When our suspicions became very strong and did the poor man's tilt, it was highly enlightening and we immediately contacted our daughter's doctor. His formal tilt soon thereafter was very strongly positive. You will likely find the poor man's tilt very helpful as well.

Above all - don't give up in search for a diagnosis, regardless of whether it is a form of dysautonomia or something else. As a parent, you know your kid better than anyone else and you have to trust your gut and be persistent.

[anna]

Hello Bren,

So sorry your daughter is having to deal with all this stuff, not easy to deal with as adults it is horrid for our children.

Can I ask if you also have a diagnosis of any connective tissue disorders?!

I was just about to post about Swine Flu and complications!! I do wander in your daughters case whether this virus could have triggered POTS, I guess that would be more likely if you have POTS due to some underline hereditary condition, that your daughter might also have. From your description of ongoing events it would really look like something medical was going on with your poor daughter as aposed to just emotional stuff.

My daughter was diagnosed with POTS about 5 years ago at 13ish, the thing I am concerned about at the moment is that she has been unwell with Flu symptoms for over 6 weeks now on her 3rd lot of antibiotics for throat and chest infection! I am wondering how many folks with POTS find they do not fight off infections so well. If this is the case then could it be possible that your daughter might have had POTS mildly prior to the flu which made things escalate, does that make sense!!?

I hope someone else can offer some advice, take care.

[Sarah4444]

Hi Bren-

I have a lot of things in common with your daughter. I had my tonsils and adenoids out as a child, had recurrent strep throat, I have dermatographism, I have POTS...(I also have memory problems so that's all I can remember from your post right now).

I also have a cardiologist who knows nothing about POTS - dealing with doctors who are confident and often critical in their ignorance is one of the huge challenges with this condition.

While I don't have any magic solutions, I'd be happy to try to help answer any questions you have.

Sarah

[crowebirds]

It sounds like she does have it. She fits the model being an A student, a competitive athlete, in addition to having a mother with the condition. She has signs of Tachycardia, MCAD and susceptibility to infections. Yes, being susceptible to infections is a big part of it. Being that you are already a patient of Dr. Grubbs, I would consult with him next. Too few doctors have an understanding of POTS. My daughter has POTS as part of her DYS and has a lot of infections (only of a different variety).

I agree with Anna that she may have had a dormant condition that woke up after the flu. Hope you find the answers that you need quickly.

Robin

[crowebirds]

Oh, yes, almost forgot, ask that your daughter's allergies be tested through blood work, not the skin. My daughter's skin test showed her as being allergic to nearly everything. When they did the blood test, it showed that she was not allergic to any of the same allergens. We knew that she was not allergic to any of the items listed, especially the foods, because it was the ones that she consumed all the time. Also, removing them from her diet did not change her reactions.

[Sarah4444]

Robin, you mention that susceptibility to infections can be part of this. Have any doctors explained to you why this might be, or is it your own observation with your daughter? I just ask because I am curious about my own history and how this all might fit together - when I was young I used to get a lot of infections, and I would always get very sick. As an adult I don't seem to get infections at all. I had just assumed I built up immunity over the years.

[Christy_D]

Bren,

Your daughter sounds like my son...He was very athletic, played select soccer year round and baseball, was in the gifted program at school, a ton of friends, etc... My son's POTS was a gradual increase in symptoms and went out of control with a 7 inch growth spurt in 15 months.

We, too, were told to check social issues, anxiety, depression, told he just didn't want to go to school. After seeing a gastro, neuro, diagnostician, pain mgmt, we finally got a diagnosis from a cardiologist. But the cardiologist didn't know much about it and still wanted to blame some of the symptoms on anxiety. I would recommmend finding a specialist who is well versed in dysautonomia. We traveled to Cleveland 5 times last year seeing the doctors there(9 hour drive for us). We have since located a neurologist in our area who specializes in autonomic dysfunction and was willing to treat our son even though he usually only treats adults. Keep looking for that doctor who is willing to help her and has knowledge or is willing to learn.

They believe my sons POTS is also a hereditary type. After his diagnosis, it explained a lot of what I experienced as a teenager. I fainted quite easily, lightheaded,etc. But nothing that was to the extent of his. I think I had very mild POTS, as does my daughter. She fainted 3 times last year when she stood up, but she is very functional. We all also suffer from migraines. In Cleveland, they had everyone in our family answer questions on a survey for a study they were doing for hereditary POTS. Fortunately I grew out of it and am hoping my son will eventually as well.

Christy

[crowebirds]

Sarah

It is from research I have done on the medical research sites. My daughter was born with her condition; however, a lot of research reports and personal reports from sites such as this give report of people who get this condition from infections. I have seen in research that this aspect improves into adulthood where you don't get so many infections.

Blessings along your journey,

Robin

[MamaTrain]

Bren,

I am so sorry your poor baby girl is having to go through this! It's terrible feeling and I know how much it scares me as a grown woman so I can imagine how children feel! Just keep searching for the answers and DO NOT GIVE UP OR GIVE IN! It took me 2 years for my diagnosis and I was told everything was stemming from some sort of anxiety. That's a bunch of BS that doctors say when they don't know what's wrong! Do the poor mans tilt table test and see what her numbers are. I would strongly suggest doing it right in the morning before she even gets out of bed if possible. That's when mine would be really bad and then late in afternoon it would ease up and almost appear normal. I still struggle a lot in the mornings with rapid heartrate and dizziness. I would also suggest giving your daughter something called Elderberry extract. It is an all natural very powerful anti-viral. They sell it in something called Sambucas Syrup (which tastes so good but it's expensive for how much you will use it) or you can just buy the liquid form of it in a small tincture bottle that comes with an eyedropper. I swear by this stuff as it kept me free from H1N1 when it was swarming around everywhere and if I do feel something coming on I just take it 3 times a day and within two days it's done and over with. It really is amazing stuff!

Tell your daughter that she is not alone and there a ton of people who know just how she feels. Keep your head up....it's easier to see God that way!

KC