Recovering brings more symptoms

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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!

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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!

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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.

Getting closer to the cause of the problem!

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This was found  on:    www. medicalook.com

CT SCAN DEFINITION

A CT scan (also known as computerized tomography scan) is a series of x-ray views taken from multiple angles that are processed digitally to create cross-sectional images of your soft tissues and bones inside your body. The images are like single slices from a loaf of bread that will give your doctor a better idea of your organ and bodily health.

Chloe had her CT scan on Wednesday and we were impressed how well she did. Thursday her medical records came in the mail and I ran it into the TMJ doctor's office and set an appointment for 2 weeks. Hoping the results of the test would answer the following questions.

!. How do we get Chloe's mouth open to extract the 4 wisdom teeth?

2, What is causing these headaches and can it be fixed?

3., What other tests may she need to do to get answers to these questions

We may have answers to share in the next month!  We are close to an answer let's hope this test gives it to us!

Temporomandibular disorders

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

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Thanks to my husband  for his determination to get Chloe an Ipad. It has really helped get Doctors attention  on this left jaw issue which comes and goes depending how her body is positions.

Here is what we know so far>

Saw the TMJ secialist who looked at all the pictures I showed him and he then measured Chloe's ablity to open her mouth and how her right jaw joint seemed fine but the left jaw joint popped a lot. He said x-rays are the next step to answer if it would be surgery or physical  therapy would be the next step.

He said her forehead issue is possible another issue which is viral. 

Chloe also has a acute vision and hearing which could be a symptom of a loose or unattached jaw. He asked me to get her medical records including a statement from her eye doctor.

 The medication that made a difference in her responses may of cleared up the headache related to this problem which gave us a look at what was underlying problem .

Thanks to the YMCA for the exercises sessions  which  Chloe works with a person twice a week. Her  family doctor says it helps her asthma and now may of helped her handle theTMJ Doctor   detailed evaluation around her face region.

Her comments after the 60 minute appoint was, "I am not seeing this guy next week!" So we will wait a couple of weeks  and I will get her medical records together.

So we will keep you updated on our progress, Thanks to all who made this happen!

Where do we start?

Chloe The Kinesthic Learner. How Her Health Issues Interfered with Her Learning Style
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                       What are  the medical treatment goals and how do we reach these goals?

!. First shared the symptoms we noted in the previous log  on the phone with the Neurologist's nurse. l told  her about the pictures I had of what I thought was the problem. The nurse asked me to send the pictures like the one above to Chloe's neurologist

2. Received a call back the next day referring Chloe to a Jaw specialiist dealing with TMJ pain issues. To evaluate why Chloe jaw moves to the left like that and why can't she open her mouth very wide. After the evaluation and treatment to either stabilize or fix the problem with the possiblity of surgery to fix the jaw

3. Hopefully at this level she can open her mouth and get the 5 teeth removed by an oral surgeon with the possiblity of surgery here too,.

4. This all starts July 1, 2015 when our insurance change.

5. The pain is some what controlled by the muscle relaxer and  antinflamatory medication and topical pain relief. Trying to get people to understand  Chloe acts out because of pain or fear of the situation might make her feel pain. People give me a blank stare like they can not see how the two are related.

6. Symptoms of PTSD from Mayo Clinic website.

PTSD symptoms are generally grouped into four types: intrusive memories, avoidance, negative changes in thinking and mood, or changes in emotional reactions.

Intrusive memories

Symptoms of intrusive memories may include:

• Recurrent, unwanted distressing memories of the traumatic event
• Reliving the traumatic event as if it were happening again (flashbacks)
• Upsetting dreams about the traumatic event
• Severe emotional distress or physical reactions to something that reminds you of the event

Avoidance

Symptoms of avoidance may include:

• Trying to avoid thinking or talking about the traumatic event
• Avoiding places, activities or people that remind you of the traumatic event

Symptoms that may help identify the problem

Chloe The Kinesthic Learner. How Her Health Issues Interfered with Her Learning Style
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Chloe needs 5 teeth out but cannot open her mouth wide enough only 50% of normal, The medication cut the pain issue but only got her to open her mouth to about fifty percent, Here are symptoms that hopes to show where the problem is. We will continue to update our symptoms as they emerge

Symptoms so far.

1. Cannot open mouth to normal width

2 .But  pain did decrease  with anti- inflammatory med and muscle relaxer 

3. Quarter size red and inflamed area over left eye treated with lidocaine ointment daily.

4. left side of jaw unusual movement (Have profile pictures of examples)

5. Left shoulder asymmetrical to right shoulder.

6. When she has a  lopsided headache  she can not grasp with left hand.

 7. Sensitivity to noise and vision has decreased with the pain medication.

More symptoms 

 8. Darker discoloration of the area on the leftside of forehead  Chloe has more intense the pain.          

9.Excessive Grinding teeth noted during lopsided headache. Not usually present otherwise.

10. Excessive biting down on seat belt shoes etc… when headache issues arise  

Neurologist hopes the oral surgeon can identify what is causing the mouth not to open normally and why the pain medication is helping. 

Another piece to the puzzle!

Chloe saw a Dentist last Friday who tried to get her to open her mouth wide. He was very nice and Chloe was eager to try. She was not able to open her mouth any wider then about 50% of how wide it should get. He questioned why she could not open her mouth any wider and referred her to an oral surgeon and to stay on the medication that was getting it to this width. He said the 5 teeth could be causing this but he doubted it.

He said this could be a great out of pocket expense so the other option is to stay on the medication that is working to this point. My husband dental HMO is new July 1st and so is medical insurance. We decided to waited till July1 when Chloe will have 2 HMO Dental insurances and 2 medical insurance to cover the costs. We hope that the 5 teeth extractions  will be the problem but the Dentist warned us not to count on it.

The smile in the picture above raises more question about the  left-side  of her face the source of her pain issues that was helped by these pain medications

May 12, 2015 update

We are checking out a Dentist that works with Chloe's two insurances to get him to send in a prior authorization to both insurances so we can go a head with the extractions.

Chloe is on one medication for pain and inflammation and a muscle relaxant used to treat muscle spasms associated with multiple sclerosis or spinal cord injuries. These medication also could be controlling the teeth pain too. Her doctors are eager to see how these extraction may lessen the intensity of the pain she is experiencing.

So wish us luck that we have gotten through the insurance maze and now on the right track to get this dental surgery done;

I will post next week about our appointment at the end of this week.

Here is where we are at!

Chloe The Kinesthic Learner. How Her Health Issues Interfered with Her Learning Style
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Middle of May is the first appointment with the Maxillofacial surgeon who has to get a give our insurance what he recommends as to how many teeth and how extensive the work he estmates will be done. We know from the Dentist they recommend 4 wisdom teeth and one molar.So we will find out at the first appointment if that is what the surgeon thinks too. The Neurologist has given her medication that helps Chloe have a normal activity level till the surgery. Topical and oral pain relievers with muscle relaxers have helped her manage so far.


Chloe is being treated for a sleep disorder and now her sister is being evaluated by a doctor who deals with sleep issues. I found this information from the Mayo clinic very helpful.

By Mayo Clinic Staff

Sleep disorders are changes in sleeping patterns or habits. Signs and symptoms of sleep disorders include excessive daytime sleepiness, irregular breathing or increased movement during sleep, difficulty sleeping, and abnormal sleep behaviors.

A sleep disorder can affect your overall health, safety and quality of life. With accurate diagnosis, doctors can treat most sleep disorders effectively.

Another twist in the road!

Chloe The Kinesthic Learner. How Her Health Issues Interfered with Her Learning Style
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March 26, 2015 at a routine teeth cleaning we were updating the hygienist of a problem with a nerve in the head and one in the shoulder and how that was causing Fibromylgia symptoms since birth. After the appointment the hygienist called me in. He said, "We may of found your nerve problem in Chloe's head."  Then told Chloe and me the Dentist recommends extraction of 4 wisdom teeth and a molar. We were referred to a Specialist in surgery -Oral  & Maxillofacial.  We got the earliest appointment which was middle of May.

I call the neurologist to thank her for the MS muscle relaxer and pain ointment. Chloe finally showed the Dentist the back of her mouth which she was unable to do before.

This could be important surgery in Chloe's recovery.   We will keep you posted!

Looking Back!

Chloe The Kinesthic Learner. How Her Health Issues Interfered with Her Learning Style
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Let's review where we came from. Chloe was born a floppy infant and needed rehabilitation help reaching her ability to walk , talk and all growth stages and has low tone issues. Chloe always comprehended the written word better then the spoken word.  Now the spoken and written word comprehension are almost equal. 

Working with a neurologist who is very helpful. We started to try different medications and talked about what worked and what did not work. Then I started typing up a daily log to show the Neurologist  how complicated it was.  After doing the log for a year, we now see it gave the neurologist a picture of how the medications are working also.

Chloe has  Fibromylgia like symptoms since birth which greatly interfered with her physical developed. We have found nerve issues in her forehead and left side  of her neck.We check in with the Neurologist and she reviews our progress every 3 months. Chloe has a secondary issue and we are not sure if it was caused by the nerve issues or it is a second problem completely different. She is on Neurologist prescribed doses of Iron, D3 and B12 that she may have to take daily for the rest of her life.

I am really glad I did a log because it shows us the recovery she is making.

A person less anxious and smiling more, due to a fabric bandage over a pain patch?

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We know that Chloe has a nerve problem on the left side of neck that effected the development of her left shoulder. For a few years with her neurologist, I have been discussing the left side of Chloe's forehead and the pain she has from there. We were wondering if it was deferred pain  from somewhere else or actual from the forehead.

We have had a very cold February and I took cell phone pictures of the  swollen red area that emerged on her forehead and sent them to her neurologist. She thought it might be a reaction to the prescription pain ointment that she prescribed for Chloe. I  told her that the medicine rub on the spot calms it down and actual had cell phone pictures of it doing that. She admittedly wanted more details of what helps and what triggers the redness to appear and what works to calm it down or prevent it. So we are trying to get the information together for our next appointment. The pain patch moved over to where the redness surfaced and the fabric bandage keeps the area warm and away from air.  

So far we know what works keeping the area with a pain patch and a bandage over protects it from the air and cold. Molly, who works with her at the YMCA, said at the last session Chloe was all smiles threw out the session and even laughed a couple of times. Chloe seems more in control of her emotions and actually able to talk through disagreements better then without the patch.

So we are working with the Neurologist to identifying the problem or problems and if there is something we can besides what we are already doing.


   

What is this unique disorder.

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So far we have identified 2 areas where the nerves may have been having issues since birth. Symptoms are widespread pain, fatigue but having sleep problems too. Also we working through  cognitive difficulties which includes the ability to focus, pay attention and concentrate on mental tasks and headaches with  Chloe's Neurologist. We seem to have the proper treatment that can greatly improved her quality of life.

We have made progress and learn quite a lot. We will continue to work with the neurologist to hopefully improve the treatment after this cold snap.  Her forehead nerve is trigger by this cold weather so we may need to wait to resume all the Doctor appointments the Neurologist wants us to do till it warms up a bite,

Outdoor above 30 degrees outfit

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This is her above 30 degree outfit. The goal is to protect the fore head so not to trigger a headache and be able to get outside and enjoy the winter, Outdoor Theraspecs are iimportant too.

Outfit for real cold weather

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This shows the TheraSpecs for outdoors, lined cap and coat usual zipped up when temperatures are below 30 degrees. She can move around quite freely as long as nerves that have problems are well covered.

Unique Disorder

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

We have learned a lot about Floppy Infant condition Chloe was born with in these past 20 plus years.
Chloe has been seeing a Neurologist that has helped us figure out this condition and how to treat it.
This is somethings we now know the condition she was born with.

1.) First nerve issue is on the left side of neck which affected her left shoulder that developed not
      symmetrical (evenly shaped) as the right shoulder. She has difficulty grasping with the left hand and complains her hand and arm tingles and buzzes at times. The Neurologist, gave her medication to help to relax muscles cramping trigger by this nerve issue and a medication that works on reducing inflammation and another used in treatment of fibromyalgia.
2) Second nerve issue is located on the left side of her forehead. It is a sensitive area she consistantly points to when asked "What hurts?"The second area is helped by the medication used above but also the theraspecs she wears, a lined cap to go in the cold and a prescription topical pain ointment she uses up to 4 times a day. That sensitive area is effected by cold and sunlight are two triggers we know of so far.
3) We are still not sure if this is a separate issue or caused by the problem above. Chloe has a unique  placement of the veins and arteries in her arms. We were able to get blood work and found her deficient in iron, Vitamin D and B12. We are not sure she may have to take daily supplements from now on to maintain her levels.

We need to get blood work done and see a rehabilitation doctor before we see the Neurologist in 3 months, We will continue to work with Molly at the YMCA which helps us to see problems and successes we can share with the Doctors.

Hope we have uncovered all the issues we need to deal with but only time will tell if we did.

From where we started

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Looking back at where we started in this picture of our two girls and my Mom and Dad back at Chloe's first Christmas who would of thought we would find a treatment and what the treatment would be.

We saw Chloe's neurologist today, she asked to recheck Chloe's Vit D, Iron, and B12, deficiencies to see after 3 months of taking supplements to see if we got these into therapeutic levels. She also referred Chloe to be assets for other treatment options for the nerve and muscle issues on the left side of her neck and left shoulder by another Doctor

 Her diagnoses is chronic headaches, ADHD. Migraine headache and musculosketal pain