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.

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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!

New treatment approach!

We switched Chloe to a neurologist who treats adults.  After talking with Chloe and her pointing to the areas that hurt, he decided to prescribe a medication that treats epilepsy but also used for migraine prevention Along with the medication she already uses to treat severe migraines another epilepsy medication.

After 2 months  of this new medication regime, I think I can say 75% of the headaches and headaches pain are gone! Also the intensity of the headaches she still have, the head pain has lessen also.

There was a question that the medication could have a negative effect on her vision the one for migraine prevention. The vision doctor she has seen for many years thought in a routine examine it may of made her vision a lot better.

We sent a note to the previous neurologist she had seen thanking her for pointing us in the right track!

All of us never would never guessed Migraines would be the problem!

New neurologist different treatment approach

Chloe saw a different neurologist, his area of expertise is in adult neurology,neuromuscular and neurophysiology.Chloe discussed with him the burning scalp on the left side of her head, One
eye unable to open the eye lid  for a period of time while having a migraine and the throbbing of her forehead on the left side and uneven eyes or face distortion when these headaches are occurring. Also waking up between 5am and 7am with throbbing pain in her head and goes back to bed after getting a muscle relaxer and topical pain relief placed on her forehead.

He gave her a preventive therapy to reduce migraine frequency. Chloe headaches were not responding to acute treatment so sometimes preventive medication works better. He gave her a low dose to be taken at bed time.
We have seen steady improvement she is in less pain sleeping through the night. If she has a headache it seems much less intense so far.
She saw an eye doctor this week. He actually felt her eyes have improved and no side effects noted from the use of this medication.