Recovery continues!

November  30,2017

Chloe is making recovery work with this medication that treats epilepsy and neuropathic pain. She still has headaches but less frequent and less intense. She is giving us more information  as to issues  we need to work on. We go and do community errands every day. Chloe works on finding the items we need paying for them and getting a receipt. This works on her language skills and knowing what is needed to purchase items. We may park at a short distance from where we are going and practice how to cross the street with street lights and without lights. She is a concrete person that had to be convinced she did not have to listen to Christmas music all the time but could take breaks and listen to regular music too.

She sees her fitness instructor for her adaptive fitness sessions. They work on exercise that Chloe has to follow directions, like touch the wall with your right hand or reach to the ceiling with your left. She is improving in following directions and improve her body awareness. We are also working on getting her to understand to ask questions and first demonstrating what kind of questions she may want to ask.

Chloe has headaches but much less intense . Her eye site is acute what I see as a line on the eye chart she sees letters and can tell the eye doctor what the letters are. I have to ask if she got them right and the eye doctor says "Yes"! Her teeth seem to be the major health issue. We really do not understand  why but after the removal of 4 wisdom teeth and 2 molars it still is an issue. Dentist suggests to stay away from baking soda or whitener that seems to be part of the problem and is helpful. Straightening her conversational speech and ability to follow directions  continues

Is the treatment working?

Medication is working with  minor adjustments.The medication that treats epilepsy and Neuropathic pain has been the major stabilizer of this disorder. When these headaches do occur an NSAID that is non-steroidal and anti-inflammatory is very helpful. She is on a muscle relkaxer daily that prevents the spasms, cramping and tightness of muscles from escalating . When she goes on long drives or other activities that trigger motion sickness she wears a patch behind her ear to prevent these headaches from starting.

Her teeth have been an interesting factor to these headaches. Chloe has had 4 wisdom teeth and 2 molars removed which has seem to lessen the intensity of when headaches occur. Chloe use to grind her teeth contiuous but now grinds her teeth pre and during headaches is still noted but with less intensity and topical pain relieve seems to work the best.Headaches seem to be trigger by her menstual cycle, eclipse, and other weather event. Her left arm and shoulder when she uses them tended to trigger these headaches. Her work on stretching her left arm and shoulder muscles with her trainer at the YMCA . It has helped to decrease the intensity and improve use of left arm and shoulder alone and in unison with her right shoulder and arm!

Chloe is challenging these headaches by Community integration activities. She does "errands"in the community and works on making purchases and making a list of tasks each day and be ready to use plan B if something is preventing the completion. We are always looking for other activities that will challenge her endurance.

This maybe a malformed nerve bundle in her back that is possibly a genetic abnormality.

Vestibular migraine

One of the more common neurological conditions is a migraine headache but some people don't even consider it a disease. My research has shown me that migraines often involves more than just a headache. Visual aura can be the person sees flickering light spots sometimes with dark holes inside or zigzagged light flashes like lightning. The visual aura tends to appear about 15 minutes before a headache. Many people don't realize there is also an association between migraine and the inner ear and the brain mechanism that influence hearing and balance.

Classic Symptoms of migraine are severe throbbing headache on one side of the head. Chloe's headaches were only on the left side of her head the phase "lopsided headache" was used to describe her headaches and other symptoms she complained about were only on the left side of her body and head.First diagnoses suggested was Menderes Diease later ruled out. Other symptoms she experienced were: Nausea and vomiting, extremely  sensitivity to light and noise, and the need to go to a dark and quiet room to sleep.


Vestibular Symptoms are: Vertigo, Imbalance Dizziness,Unsteadiness, Extreme sensitivity to motion and Hearing Symptoms. As a child Chloe saw a neurologist for possible seizures. The neurologist ruled out seizures but Chloe seem to fall on the floor and thrash back and forth for no reason. The medication she is on to treat headache and partial seizures with the other medication to prevent nausea and vomiting due to motion sickness seems to be greatly helping in this area.


Otis Migraine comes from the word meaning ear, and often occurs without headache. We questioned
If Chloe had hearing loss because her speech developed uniquely like  she was talking like under water. We got her reading,to help her enunciate her words better. We also found out later that she had tinnitus in her left ear that lessen with medication and her enunciate of words and sentences improve too. She saw an OtoLaryngologist (ENT)till about school age trying to figure out her hearing and speech issues causes. Hearing comprehension of the spoken word and her enunciation has improves with the medication she is now on.

So Chloe migraine treatment has seem to help her understand the spoken word, improve her communication skills and strength her endurance . One side of our family has migraines and the other side has vestibular issues so this treatment actual makes sense.

Neuropathic Pain

For 25 years we have been in pursuit of why our daughter was diagnosed floppy infant and had a general weakness  on her left side that caused her to have a left shoulder to be asymmetrical in shape to her right shoulder since she was born. Then she was put on a seizure medication used for epilepsy and neuropathic pain that has greatly improved her quality of life. This chronic pain state usually is accompanied by tissue injury. These nerve fibers themselves may be damaged, dysfunctional or injured. The damaged nerve fibers send incorrect signals to other pain centers.  Because of the tissue damage she was put on  a muscle relaxer with this medication which seems to be a winning combination.

Looking through several disorders symptoms lists I found the closest symptoms to match up with her disorder was Fibromylgia. So besides the symptoms mention above that she was born with here are some other symptoms.

Morning stiffness: Chloe needs time to get started in the morning and time for her medication
to works!
 Headaches:   Chloe's most intense headaches seem to happen the period of 5am to 9am. Medication has helped to lessen the intensity. She has less intense headaches during the rest of the day which shows her medication for pain management helping her do more things. She is able to describe her headaches and beginning to ask for what she needs before resuming her activities.
Fibro Fog:Her memory problems and cognitive problems have signification improved with this
 medication combination.
Sensitivity to Loud noises or bright lites:This has also improved with the mediation combination also!

This is what we see so far! Jacqueline

Alternative treatments

We are on a journey of exploring what works on Chloe upper back nerve issue condition. The problem causes headaches, weakness on the left side arm, shoulder neck and face since birth!

Here are some treatments we are working on!

             Dentist/Oral Surgeon: Chloe had 4 wisdom teeth and a molar removed in 2015 in a hospital setting. After that one of her left front teeth cracked off due to excessive grinding. I took a while to find another dentist. Then I got lucky and found a dentist who also worked 2 days a week as an oral surgeon. He found the tooth that cracked off was infected and gave her antibiotics. Chloe is going to get a root canal in his office after. She is on a seizure med that deals with peripheral nerve damage that now lets  Chloe lay on her upper back in a dentist chair without significant pain like before so she can have the procedure done in the office dentist chair!

            Another Treatment we are checking out is light Therapy for Seasonal Affective Disorder also referred to as winter depression.  

Symptoms are :

Apathy, Fatigue,Sadness,Irritability, Weight Gain, Lack of Energy, Increased sleep, Carbohydrates Craving, Difficulty in Awakening, Decreased social Activity

Both my Kids were tested to be Vitamin D deficient and have at least one or more of the symptoms mention above.

Treatment is they are in front of light box that emits intense bright light.The light enters the eye, hits the retina which sends a nerve impulses to the pineal gland which controls melatonin secretion. 

So far both our young ladies sit in front of this right for 30 minuates and really seem to enjoy it. One likes to read the other is on her computer during the light Therapy.

Tens Unit is still used for pain management issues but now is on an as needed bases.

Chloe also works at our local fitness club with her adaptive personal trainer working on core issues and using her arms without headaches

2016 recap and 2017 update!

Life in 2016 had us take a break from these updates and taking care of life!

Natasha has been working since the end of August with people she is friends with. She finds the work interesting. She is also working on what it means not to have a gall bladder and what that all entails also pondering what is next in her future.

We also dealt with the illness of a relative then the unexpected death! My asthma medication needed to be increased but of course it could not possibly because of  Global warming . At least if you believe the Republican logic! Then I got an upper respitory virus that lasted about 2 months. It was having a major argument with my asthma! With all the coughing and sneezing I fell and sprained my big toe that I am still recovering from. Crazy year of manageable obstacles that had to be worked through!

Chloe has been on this seizure med that deals with the nerve damage in her back for now over a year. She appears to be in less pain because she comprehends the spoken word has improved and follows  directions also improved. She is working with an Adaptive fitness trainer . She works on her social skills, her ability to follow directions and appropriate social interaction.

The tens unit has help her nerve problem in her back. She uses it 10 to 15 minutes 3 times a day. The probes are put around the base of her neck in the middle part of her shoulders. This seems to improve things too.

Our goals are continue to assess if we have the correct medication and the correct use of the tens unit.
This problem could be a genetic defect in a nerve bundle in her back that she was born with. Doctors are still not ruling that out as a possibility.


Jskubal.anderson@yahoo.com