Our daughter’s medical puzzle maybe figured out?

                                    February 7,2020 Chloe saw a new dentist  that identified an issue we were trying to find answers to for years from her doctors and dentists she had since birth New dentist said it was unacceptable that she could not open her mouth. He called it Temporo Mandibular joint dysfunction.

This is the Mayo Clinic description of this problem;

Overview

The temporomandibular (tem-puh-roe-man-DIB-u-lur) joint (TMJ) acts like a sliding hinge, connecting your jawbone to your skull. You have one joint on each side of your jaw. TMJ disorders — a type of temporomandibular disorder or TMD — can cause pain in your jaw joint and in the muscles that control jaw movement.

The exact cause of a person's TMJ disorder is often difficult to determine. Your pain may be due to a combination of factors, such as genetics, arthritis or jaw injury. Some people who have jaw pain also tend to clench or grind their teeth (bruxism), although many people habitually clench orgrind their teeth and never develop TMJ disorders.

In most cases, the pain and discomfort associated with TMJ disorders is temporary and can be relieved with self-managed care or nonsurgical treatments. Surgery is typically a last resort after conservative measures have failed, but some people with TMJ disorders may benefit from surgical treatments.

Symptoms

Signs and symptoms of TMPain or tenderness of your jaw

• Pain in one or both of the temporomandibular joints
• Aching pain in and around your ear
• Difficulty chewing or pain while chewing
• Aching facial pain
• Locking of the joint, making it difficult to open or close your mouth
• When to see a doctorSeek medical attention if you have persistent pain or tenderness in your jaw, or if you can't open or close your jaw completely. Your doctor, your dentist or a TMJ specialist can discuss possible causes and treatments for your problem.                                                                                                           

There are many potential muscle relaxants that can be used for TMJ.. Chloe at birth was diagnosed “Floppy Infant” with a weakness on the left side of her neck, Her left side of her body developed asymmetrical to her right side. The jaw issue could of developed in her upper back that caused her to have tightness in her jaw and neck down to her shoulder..
We discuss these issues with her neurologist, Along with her medication two anticonvulsants that deal with nerve pain and a muscle relaxant to loosen up her TMJ issues.

Chloe still has bouts with headaches then remission periods much less intense headaches and then when we started.  These headaches are like cluster headaches.These headaches are all on the left side if her body, neck and head. Her left eye droops and she covers her eye with her hand becaus she does not want to see all the the lights in that eye. The new muscle relaxer has lessen the severity and helps shorten the duration of the headache.

We knew we had the right treatment every increase in medication or change of one to another. She started speaking in sentences and she started helping give more information to her doctors to aid in her treatment. We found she remembered a lot from her childhood but could not expresswhat she knew till she started this treatment.

2019 Busy Successful year moving in right direction!

We had a a busy year with the death of an elderly family member and settling the estate! Combining that with health issues of other family member this year flew by!

                         2019 Medical events
May 2019 Chloe’s bloodwork showed the liver levels that were high went down significantly. Her medication maybe adjusted to the right levels. Next appointment in December 2019.

August 2019, Saw the neurologist to review her progress. He was impressed she was talking in complete sentences and very present through the whole appointment. She asked him if she had to see the other doctor next. He talked to us about not changing the medication due to the higher the dose the more side effects is possible with this medication. We agreed and he said he would like to see her in a year to see how far she processed. He was happy to see her blood work because it is a big help to monitor this medication.

October 2019, Chloe went for her annual eye exam. This time she understood or could see the difference on her deep perception test and give correct answers to the person administrating the test .

December 2019, The Blood worked showed continue decrease of her liver levels continues not yet in normal ranges but getting there. Liver specialist was pleased with her progress.

Chloe does not get tired quickly as before. We do eye/hand coordination computer games besides other educational  videos and working on the computer skill building. We are much farther along  educational then we ever thought possible. She still have headaches but much less and less frequent but we have medication from the Doctors to work with these headaches. Chloe health has improved but hopefully will continue to improve the more she stays on this migraine/seizure medication..

The cranial nerves all 12 of them need to be treated by neurologist trained in that area, so they are familiar what medications work the best.
Any questions my email is : jskubal.anderson1953@gmail.com

Chloe update on her progress

Sorry it took so long to update! We have been busy with other personal obstacles that kept us busy!

The increase in migraine medication help us decrease the muscle relaxers. Her blood work showed a decrease of liver levels to normal ranges. We went up to our cottage for vacation she enjoyed it but tired easily. Weather events still is a problem for her headaches and her asthma. This is the first month she has not woke up with her couple times a month 5am headache!

She continues to work on her communication skills and range of motion at the YMCA that also in the past has triggered headaches! She continues plans out her outing and gets what she needs on these outing. She watches videos of half lectures at a time of different subjects like England, drawing, gardening and New Testament.

Two areas we still have issues with is when plans have to change and she has to adjust to the change and her ability to express her needs and wants calmly., Chloe is now able to be reason with so we can work on listening verses reacting which is the beginning stage of problem solving,

Even with the amount of medication she needs to stabilize her condition, she is still showing it helping her cognitively development! So her recovery continues!

Tools to help medication work better!

Chloe treatment for her condition mention on the previous page,Is the use of medication that blocks migraines and another that treats serve migraines. She also uses a muscle relaxant  to relax certain muscles in her body which is to relieve the spasms and increase muscle tone. 

Tools she is using to help lessen the intensity of her headaches is “slouchy Beanie hats” which lessen the intensity if her temporal facial pain. Chloe also uses “max strength Lidocaine” a roll on used mostly on the temporal areas and forehead. She uses glare resistant glasses without prescription either glasses  or sunglasses and gloves with finger tips exposed that have magnets running threw the gloves.

These extra tools help on car rides and community outings. Where before she talked a lot and seemed uncomfortable now sits quietly and enjoys the ride.

Blog:jacqueline -discoverytrail.blogspots.com

Symptoms and treatments to help Chloe recover?

    Chloe treatment is working with one medication to prevent migraines and one to treat severe migraines . She now sees the neurologist  every 6 months to talk about what is working and the Doctor make adjustments needed. She is working on  at the YMCA range of motion exercises to see if these migraines are still triggered by motion like they were before.

Chloe was born a Floppy Infant which means she has low muscle tone. She felt limp in our arms,like a rag doll. Chloe was a fast growing child, who has a T-shape body were  two other issues that did not help her with this condition. At school she would cry a lot was the main issue teachers dealt with her.
Chloe, we now know was in chronic pain and could not fit in the small area and desk due to her size.

So it was time to homeschool and start looking for ways to get the proper treatment for what ever this condition is. The neurologist introduce her a medication that treats peripheral neuropathy. Chloe shoulders are asymmetrical so this showed improvement in her behavior, and her improved
interaction with the world.
The next we tried to figure out was why she had so much chronic pain in the forehead and Temples which caused a serious issue with grinding her teeth. The neurologist she was seeing did not have any answers to what was causing this facial pain. Her dentist used Botox which helped people with this grinding issue. Chloe got 8 Botox injection to different areas of her face. Chloe was laughing and giggling all the way home. I began to question doctors “Why would anyone be so happy to get 8 shots to the face”! Problems return in 6 weeks , so we did the Botox injections again and got the same response from it but the problems came back in 6 weeks. Because of the cost of Botox and short term reduction of pain we need to see what other options we have.
We found a neurologist that is familiar with Cranial nerve issues and he introduce us to this medication that works on the facial issue we mention. We continue to work on adjusting this medication.
So Chloe is being treated for a malformed nerve bundle on the left side of herupper back and Cranial nerve issues that causes her face pain.

What Causes Strokes in Younger Adults

This is a case study of me! What to look for if you are more likely to have stroke issues?  Factor V Leiden is a mutation of one of the clotting factors in the blood.  It increases my chances of developing abnormal blood clots most commonly in legs and lungs. I received two faulty genes (one from each parent) which gave me an increased risk of these abnormal clots. I also have B type blood which is more common to get clots.

Women have an increase tendency to develope clots during pregnancy and taking hormones. I had a much older then me cousin who died early and they blamed it on the Birth control pill she was taking! I experience a stillbirth probably due to a blood clot also!

I have been on anticoagulant medication for 16 years now.I am on a blood thinner ,cholesterol reducer ,and a blood pressure medication. Within the last 5 years,I had inserted a filter into  my lower vena cava a filter to block clots from getting to my lungs. I also have a problem with aspirin when taking medication with aspirin components that I had uncontrollable bleeding episodes.

I was told once I start to develop clots  the easier it is for Clots to develop. I decided to go with medication and preventative treatment and so far it is working. I check with my Doctor for all Medical and dental procedures!

Deep vein clots in leg symptoms:                      
Pain.                                                                    
Swelling.                                                              
Redness.                                                              
Warmth.    

Clot travels to the lungs:
Sudden shortness of breath
Chest pain when breathing in
A cough that produces bloody or blood-streaked sputum                                                            

I will attempt to do a case study of my daughter’s symptoms so you can see how the symptoms got us to this point!

Migraine headache update in our unpredictable winter season!

Saw the neurologist in the beginning  of  February. I let him know what we found out so far.
1. Headaches are still present but the intensity of the pain has greatly decreased.
2. Since the previous visit it seems like her issue steadily calm down.
3.Cold weather makes her headaches more intense (single digit temperature , wind chill).
4. Other atmospheric events also  trigger the headaches (Full moons, hurricanes etc...)
5. She still have problems with crowds possibly the crowd will trigger her headache and it has in the past.
6.On this medication she can actually track with her eyes better(look at her feet while she puts on her sockets and shoes.

Chloe now wear glare resistant glass and is beginning to strength her eye control. Her vision specialist who worked with Chloe before this medication and now encourage her to see what she can do with the improved eye control. Chloe is listening to 30 min lecture on different subjects that she is interested in. We are slowly increasing her time doing this. She needs to strengthen her eyes endurance.

The neurologist increase the low dose she is on to slightly higher dose. We will report back to him what we see different with the slight increase in 6 months. I am researching  “12 Cranial Nerves”too!