Alli40

Hi everyone, I haven't been around much the last two months as we enjoyed a slow down of all symptoms over the last six months of the summer. We kept my daughter very quiet and she spent most of her time watching movies and reading and taking it easy. She was so bored by the end of the summer she couldn't wait to get to school! She has always loved school but this year was even more exciting after missing nearly half of last year. She started grade 7. The last week of August (after a 3 month wait) we got in to see a cardiologist. She had an ECG done and they noted a higher QT. As a result they sent us home with a holter monitor for 24 hours and we are going back on Friday for another test and to see the cardiologist again. She was not symptomatic when she went in August but things are changing. Since she has started back to school and the regular expectations and exercise, and stress and business of her everyday life, she has again started to have difficulties. These appear as major headaches, nausea, dizziness, lightheadedness and incredible irritability (she describes as feeling furious about nothing). She has missed a day or two each week. The other days she is exhausted and sometimes can't eat dinner. Does anyone know much about QT rates? Thanks, Christine

Hi Everyone We have just returned home from an appointment with our family doctor. We are still waiting to see cardiology and now a new referral is going in to a new neurologist. Our family doctor read the info I provided on POTS and said that we could look at this as a possibility easily. He had my daughter lie down for a few minutes and then he took her pulse. Then he sat her up and repeated. Then he stood her up and repeated. He didn't notice muchy of a change in her pulse and said he thinks we can rule out pots as a concern. If that is true I will be very happy! The thing that is nagging at me is that when she was in the hospital for 3 days in May they regularly took her vitals and noticed a big change between lying down and standing and that is why cardiology has been contacted. Could this have resolved itself? She has been very quiet for the last 3 weeks with minimal exercise and only occasional accidental over exertion. As the three weeks has gone by, her health has improved with all symptoms becoming less frequent and less severe. Her symptoms increase when she exercises ( last weekend in the pool resulted in two days of headache, stomach pain, etc.) Could be we are dealing with something else? I have a mio watch (I have just had the battery replaced) so I thought we could check her heart rate from time to time ourselves and see if things have improved. I am just not sure how accurate it is and I suck at taking her pulse. Looks like we are waiting for cardiology and the new neurologist to help with this puzzle. Thanks Christine

Hi again! Thanks for the input about exercise and sleep. It is helpful to have an idea of what others have done. I don't want to push her and I just would like to find a way for her to get some sleep. As far as the shunt is concerned, that was the first thing we investigated when she got sick. She has had CT, MRI and a Shunt-o-gram. She was monitored in hospital for three days. All the tests indicated that she is doing better than she has in the last couple of years. We are quite satisfied that the shunt is working as it should be. Her ventricles are not enlarged at all. We had another MRI today just to be sure but she has just had two shunt revisions so she knows what it feels like when her shunt is failing. And no need to worry about being too technical with hydro and shunts, that is a language I am well versed in! Oh, she does not have a programmable shunt so we do not worry about setting changes. We don't have a diagnosis but everyone that we meet has an idea. What no one takes into consideration is the increased heart rate that was documented at the hospital (during our 3 day stay) and in the doctors office 2 weeks later. We are waiting for a cardiatric consult that was requested in May. Everyday I hope they will call. They told me it would be one to three months. They do want to see her though because of the heart rate issue. I would just like someone to help her, no matter what the problem is. POTS has been the only thing that I have come up with that encompasses all of her symptoms, but I don't know what she has. Thank you so much for your help. It is nice to be listened to, to receive support and not have to prove anything. I feel like I am fighting for her every step of the way. The doubt I see in other peoples eyes is heart breaking. They see her on a good day and don't understand what we are dealing with. I know from her face that she is not okay. Christine

Thank you everyone for your warm welcome and suggestions. I printed out the journal article that was noted in another thread on this board and I dropped it off at my family doctor's office. Hopefully he will read it and consider the path we should follow from here. We are going to work on the salt and fluids and all of your ideas are very helpful. Last night was particularly difficult. She couldn't eat dinner, and then she couldn't sleep. She had a warm pad on her stomach, a cool cloth on her forehead, tylenol and advil on board and she couldn't sleep because she felt so unwell. She is a little better today and we got through the MRI with no difficulties. Does any one have any ideas to help her sleep? She is tired but awake from pain? She was a dancer until a year ago (studied ballet), now she gets winded walking up the stairs. How did you figure out how much exercise was good to get you going but didn't knock you back for days after? Thanks again, Christine

Hi Everyone! I wanted to introduce myself. I am the mom of a 12 year old girl who has been suffering from an unknown illness. In February we found that my daughter needed neurosurgery. She has a shunt for hydrocephalus and it was blocked. They think she was suffering silently for over a year. She slowly recovered and had just started back to school when she had another surgery (only 3 weeks in between). She recovered quickly innitialy from this surgery; she seemed to bounce back. She spent two weeks at home, two weeks half days at school and then we started back to full days. Just as she seemed to be getting better, she started again to complain of headaches, nausea, dizziness, sound and light sensitivity. These are similar to shunt failure symptoms. We went to the hospital over and over again. The did many tests and found that her shunt was working correctly, however, they admitted her and watched her vitals. This showed that her HR goes up every time she gets up. It was significant enough to refer her to cardiology. The have triaged her as semi urgent and advised me of a month to 3 months wait for an appointment. She has had blood tests, xrays, MRI, and ultrasound to try to figure out why she is so unwell. She has been unable to attend school for more than half a day per week (since all of this started). It takes her days to recover after she has been active (going to school, shopping, etc.). She is suffering from: Headache Stomach ache Dizzy Lightheaded Nauseated Fatigue and sleeping a lot Trouble going to sleep at night Exercise intolerance ? winded going up the stairs Weakness ? difficulty opening doors, general weakness and notable weakness in arms and legs Difficulty focusing ? in a fog, can?t concentrate visual problems - she sees shapes and colours like if she pushed in on her eyes I am having trouble getting anyone to take charge of this medical situation and investigate. I need a Dr. House. All the specialists so far just rule out their specialty or diagnose based on only a small piece of the picture (for example, the neurologist says she is just suffering from migraines). My family doctor is waiting to receive tests from the hospital before he considers any other tests or next steps. His receptionist thinks my daughter just doesn't want to go to school so she won't give us priority when booking appointments. Every day is now just about documenting and waiting for the phone to ring. We are also hoping that each day won't be too bad a day. I think she is suffering from POTS. I have contacted one of the doctors on the list. He wants to hear from my doctor. I just wish I could make my little girl feel better. Tylenol and Advil hardly even touch her pain. She takes them together in the hopes of some relief. Thank you for reading. Thank you for being here.