Recovering brings more symptoms

Chloe The kinesthic Learner                                                www.uniquedisorder.com

The bottom picture is  before the wisdom teeth and molar extractions and the top picture is after the day surgery,Chloe's mouth is uneven in the bottom one but in the top one she was able shut her mouth evenly.
. For the Holiday we drove over an hour to my sister's house there I took pictures of her with her sister and her cousin. Afterwards I reviewed them and found her left cheek swollen like we saw for 6 . days after the teeth were extracted, I gave her medication at my sisters house because she was becoming  irritable and thought it might be pain.. The anti-inflammatory med and muscle relaxer must of helped decrease the swelling too.

The Neurologist reviewed the pictures and said, "You finally showed me what you were talking about!" My response was, "Took long enough! This nerve issue is hard to catch in a picture!"
 
          She prescribed a medication that controls partial seizures a form of epilepsy and also used to treat certain types of nerve pain.
           Focal(partial) seizures result from abnormal activity in just one area of the brain. while nerve pain there are many types. Neuropathy is a disturbance in the function of a nerve or particulsr group of nerves.

So we will slowly bring this medication to therapeutic levels and monitor symptoms. We will see the Doctor in 3 months but update her on the symptoms that seem to be attached to this problem. So far Chloe is responding well to this new medication,I have shown the neurologist many other pictures of symptoms  so we have been having this discussion for years,

Testing for nerve pain is hard to do and pain full. The neurologist ask me to try and capture some symptoms in pictures so she could see what I saw. So Chloe was diagnosed a floppy infant at birth
which now we understand the symptoms we may of finally gotten the right treatment started

Technology is beginning to let Doctor's  see symptoms  they may never see at patients office visits
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Two different areas of the face with very different symptoms

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Two weeks after Chloe got 5 teeth removed this is the report I gave to Chloe's Neurologist nurse!

       First let us look at the left side of the Jaw. This is where 2 wisdom teeth and a molar was removed. Chloe experience intense swelling in the cheek area and discoloration located on the left side of her forehead. She had a hard time chewing her food and I made sure it was cut un small pieces. She even place the pieces of food on the right side of her mouth to Chew her food. The swelling was noticeable but her usual medications worked great and pain issues were under control. This swelling lasted 6 days and everyday I question if I need to call a doctor. I decided to observe the symptoms and call a doctor if the symptoms got worse but symptoms steadily improved.

    Now on the right side of the jaw had 2 wisdom teeth removed. There was no swelling and no discoloration of her fore head. She was using the right side of her mouth to eat  since day one after the teeth were removal.

    Chloe seems to be in less pain during her recovery then before. She has not had one of her intense headaches since before the teeth were removed. The medication she is already on for Pain Management seems to be working better. The ability to chew is working better as she continues to heal. She still has an upper back nerve issue  which we will continue to work on with her neurologist to figure out how to work with it.

     Chloe and her trainer at the YMCA will continue to work on improved use of her arms with this mystery nerve problem in her upper back. Before the use of her arms overhead  could trigger severe headaches, we are hoping to find this problem is lessen or gone. We will report to the Neurologist our finding. 

One more step in the treatment of a unique disorder

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Chloe has completed the next treatment goal. She has completed getting 4 wisdom teeth  and a molar removed. The oral surgeon said the molar was on the inside of one of the wisdom teeth so he charged us for four teeth but actually took out five teeth.

This journey started in March 2015 with her hygienist and dentist finally get into her mouth because of new medication she was on she could open her mouth wider. They felt that the wisdom teeth and molar were a major part of the problem. This is early in recovery but they maybe right.

The journey took us to  four different Oral surgeon and each one directed us to the next. The goal I think of each visit was to see what would work with Chloe's back issues to be able to remove these teeth safely. Also at the beginning of  September our road had 6 weeks of road construction to be completed while we walked in 2 blocks from our car to our house . Surgery date was set a week after when the road was expected finish and it was.

Chloe and I typed out a timeline of what she needed to complete to get her teeth out. But unexpected situations came up like 3 different people tried three different tries to get an IV in. The staff came in and told Chloe what to expect next.

 She was very ready for each step and did everything asked of her.
Her actions  showed us she agreed with what she was doing. Chloe answered all questions asked of her too,

Right now Chloe'left side of her face is swollen and her nerve issue she is being treated for is on the left side of her back too. So the goal is now to let her body heal . In December we will see her neurologist and see how Chloe's recovery is going and see if we can start reducing some of the medication she is on especial pain medication.

I will update in a more timely man ner how recovery is going, Thanks to all medical staff we encountered. Everyone was great!

Obstacles that delay's treatment

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This is a picture of Chloe by our new road in front of our  house. We are hoping to be able to drive into our driveway by end of October when Chloe day surgery is finished. Expecting her to walk 2 blocks from where we have to park the car to our house.is asking a lot. She has medication for pain that makes waiting a possibility.We need to get the teeth removed to see if they maybe  causing this back/neck issue. After we resolve this issue, the neurologist has other possible treatments to consider,

At the end of August we checked in with the first oral surgeon who just did teeth removal in his office . The chair had extra cushion support which was add comfort for most people but actually seemed to make Chloe stiffer then usual. This oral surgeon referred her to an oral surgeon who  tries to remove the teeth needed in his office suites also but he has the option to do the work in a day surgery setting, Chloe did better in his chair but to remove 4 wisdom teeth and 1 molar, he felt it would be more successful in a day hospital setting. So we have a date and Chloe needs to get a physical too. Then we can see how much these teeth maybe feeding into her upper back issues. Wisdom teeth are big issue for Dentists. They waited only a couple of years ago to remove my last wisdom tooth and they showed me on the ex-ray how the nerve was wrapped  around the root. So we do not know if this is the big issue we are looking for  till we get them out.

Chloe also saw the eye doctor for her annual check up. He always comments on the improvements he sees from the previous visit, She is able to see incredible distances  and wears the glasses to help cut down on headaches, Chloe continues  to make progress.

How to share the actual Symptoms with Her Doctor!

                                                                                     

                                                                     

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                                                                                                          How to share  actual symptoms  that a doctor usually doesnot see at an office visit. 
 1. The first way we tried was a daily log which showed the following . How the new medication might be working. If Chloe had a consistent time of day she had problems with. We log Chloe's sleep patterns , eating patterns amd activities she did each day. This gave Chloe's doctor a view how the medications she gave Chloe were working. Also if Chloe had a headache or pain attack I tried to write down symptoms,duration and what meds worked the best and which did not.
2. My husband surprised Chloe for her 21st birthday with an Ipad. Little did we know it would greatly  help in showing the Neurologist  symptoms that  would not be seen on an office visit. I had to get comfortable with this technology and starting sending the neurologist pictures of problems and symptoms we discussed in the office. It was very helpful for the Doctor to see what I was describing to her. The picture of our book above and the book website below were both taken by the Ipad camera. I capture the pictures of the book on the Ipad and website with another camera.Be patient technology is a bit intimidating but it does turn into a lot of fun if you can use it enough to get comfortable with it.
3.  Medical gadgets and medications are used for many different disorders. The sleep belt got Chloe off her back and lessen the intensity of her pain/headaches. Why we let you know if we figure it out. Chloe is going into to get her wisdom teeth removed which may help this situation. After the teeth removal we will see the neurologist and access the use of another medication for this back issue.

I can not say enough how capturing the symptoms Doctor's don't see in their office helps with a better and faster treatment plan. 

Who would of thought we are figuring out upper back issues again!

Chloe The Kinesthic Learner. How Her Health Issues Interfered with Her Learning Style

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Chloe has been wearing the Bumper belt which is a positional solution for sleep issues. Since Chloe has been wearing it to bed and also sleeping on a pillow wedge for about a month.

1. She is able to open her mouth wider then ever before and seems to be utilizing her facial muscles better each day.
2. She is taking less pain medication but seems free of the headache issues or it has been greatly decreased.
3. Sensory issues seem to be getting better but the biggest surprise is the facial muscles seem to finally be responding.
4. I suggested we work with this belt and see what we can accomplish to the Neurologist for at least a year. Chloe will get the 4 wisdom teeth out because that should also help.
5. Her doctor will try and figure out why this belt is getting Chloe better access to facial muscles which helps her open her Mouth.
6. Let you know if the Neurologist has any idea why this works after we see her in September.
7. Chloe was referred to find out why she could not open her mouth very wide. The TMJ Doctor accomplished this with a sleep belt. He is impressed with what worked!

Cat Scan found an asthma issue!

Chloe The Kinesthic Learner. How Her Health Issues Interfered with Her Learning Style

www.uniquedisorders.com

Since the age of 5 years old Chloe has been diagnosed with asthma. Her peak Flow at that time was lucky to hit 50, but now she pretty consistently hits 300 which is the low end of normal.

 We never knew why but the Cat Scan found her air hole diameter was 31.9mm and normal range is 52-110mm. This is the tube that goes from the back of her mouth into her lungs.So the diameter of tube is the distance across the tube's center point. The bigger the diameter the more air a person can take into the lungs, Cat scan picked this up where no other test did before

So the TMJ doctor has shown where the problem is. The surgery he recommends to fix the problem needs to be considered but I am not sure how it may play into her nerve damage on the left side. He said this could really improve Chloe's quality of life. I will need to discuss this with her neurologist who was worked with her for over 5 years and see how the surgery could impact the left side issue she is being treated for, I will then check with her regular doctor for her opinion too. Right now Chloe's is scheduled at the end of the month to get her wisdom teeth removed which could be a big help too

. We are working with the YMCA to check her stamina and so far we think she could handle a 10-20 a week work schedule.