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Please help -depressed teen with Charcot-Marie-Tooth

Hello,

I am seeking help for my teenage daughter. She was diagnosed with charcot-Marie-Tooth disease last year (a hereditary peripheral neuropathy). Our immediate problem is that she is suffering from atypical depression and has frequent thoughts of suicide. She was hospitalized for 12 days but had horrible reactions to Elavil and Cymbalta which they prescribed to treat both her nerve pain and depression. I do not feel comfortable using these types of medicines on my daughter.

Physical Symptoms:

daily Headache upon waking only in left temple lasting about 15 -25 minutes. Headaches began about 5 months ago. Pain is sharp and pulsating.

Also she gets headaches 1-2 times a week preceeded by visual aura a few minutes before the headache...pain is also only in left temple and sharp and pulsating

Occassional pressure behind left eye.

Nasal Congestion upon waking

frequent sore throat -swollen tonsils but no infection

Sensitivity to sounds-sounds seem much louder-happens 4-5 times a week without warning.
When she is sensitive to sounds, she become highly irritated and angry if they don't stop.

insomnia - Can easily fall asleep but cannot stay asleep. Melatonin, valarian root or sleep aids do not help.

Recurring dreams that she is being kidnapped out of a window. She has had these dreams for years now.

irregular menstrual cycles...cycle will start for 2-3 days, then stop for 2 days then start again for a few more days.

very sensitive to preservatives, artifical coloring, sweeteners. Gives her a headache within 15 minutes. She avoids foods with those ingredients.

Emotional Symptoms:

Her description of how she feels emotionally:
i feel alone and unloved like im bothing everyone like no one cares i feel irritated and upset

My impression:
very eager to find a mate whether boy or girl- she 'loves' anyone that shows interest in her
has low image of herself
short fuse-easily angered
injures herself (cutting) but mainly superficial cuts
has suicidal ideations-has made plans on how to do it
not constantly depressed - happy things do distract her and her mood lightens.
moods are very inconsistant and she can go from very happy to very upset in a matter of minutes

She has had very bad reactions to Elavil and Cymbalta...both prescribed to help with her nerve pain and depression. She had increased suicidal thoughts, panic attacks and generally felt worse.


Symptoms from her CMT:

Electric shock nerve pain in arms, hands, feet, legs and chest
muscle weakness in hands and feet
tremors in hands

Please let me know if you need any other information and thank you so much in advance. As a mother, I feel so helpless...I want to keep her safe and help her heal.
 
  Barb77 on 2011-04-08
This is just a forum. Assume posts are not from medical professionals.
Hello there. I've read your post and felt compelled to reply. Im 27 and also living with CMT. My diagnosis came late in my life, I was 22 when i became fed up with not knowing what was happening to me, physically. It was always known in my family that my maternal grandfather & uncle had some disorder affecting their feet, legs, and hands, but no one knew the name. I began asking my uncle about his symptoms and he then gave me the disorder name Charcot-Marie-Tooth. I went to the internet and found many articles on CMT. Pinpointing all the symptoms I had displayed since early adolscence. I was angry at my pediatricians and doctors for having overlooked my symptoms during the years I complained about tripping, ankle breaks and sprains, lack of balance, sharp pains, lack of sleep, and depression. Because I was very athletic, they wrote my tripping and sprains as 'growing pains'. Anyway, once I got all the info on CMT I needed, I went to my physician and demanded that he examine me for CMT. He did a series of tests and ultimately, after sending me to orthopedists, neurologists, and geneticists I received an accurate dagnosis of CMT Type 1A. For pain management and to calm the nerves I have been on Gabapentin. Which is a medication they use on seizure patients. It seems to work for me. It does have a groggy side affect that makes me sleepy, but I take one during the day and two at night before bed, which helps with the insomnia. So I get the rest I need and relief from the sharp nerve pains. It is also important that one suffering from CMT ramains active. Because there is muscle wasting associated with CMT, its important to preserve the muscles that remain. Swimming is a low-impact activity that REALLY helps me relax and get in some much needed exercise. Bike riding is another thing I do to help with my balance, and range of motion in my feet and legs. I had a knee surgery in June 2010, and both swimming and biking have helped my recover tremendously. Not sure if your daughter has any increased pain in her legs during her menstrual cycle, but its something that I experience. Its like your leg(s) is in a vice grip, and sitting or lying on them is very painful for me. So Im on birth control to cease my menstrual cycle. If she is experiencing that pain, you might want to consider a birth conetrol as well as the Gabapentin. I hope this very long reply is helpful. Please feel free to ask me any questions. Take Care
 
LivinWithCMT22 last decade
Hello Barb.
I've looked through your description of your daughter's illness.
Can not be 100% sure, but a remedy that comes up is Mercurius Vivus.

Does your daughter have night sweats? Or she may drool when she sleeps?

Parakletos;Practitioner of classical homeopathy
 
Parakletos last decade
To LivinWithCMT22,

We tried gabapentin a few months ago and her one eye started swelling...not 100% sure if it was the gabapentin or not but too coincidental. We may try it again but right now we have her somewhat stable emotionally on Lexapro. We are trying to address one issue at a time. She doesn't have any issues with her menstrual cycle except for it not being regular but we found that progesterone progresses CMT symptoms so I'm not sure that birth control would work. I just found out yesterday that her TSH is somewhat high so that may explain some of the depression and irregular cycles.
Thank you so much for your help!
 
Barb77 last decade
Hello,

I am seeking help for my teenage daughter. She was diagnosed with charcot-Marie-Tooth disease last year (a hereditary peripheral neuropathy). Our immediate problem is that she is suffering from atypical depression and has frequent thoughts of suicide. She was hospitalized for 12 days but had horrible reactions to Elavil and Cymbalta which they prescribed to treat both her nerve pain and depression. I do not feel comfortable using these types of medicines on my daughter. On her Physical Symptoms:

Here’s My Reply to you:
Answer
Hi, There Concerned Mother:
I hope my information will help your daughter and yourself I know its hard being a parent and having a child with problems, but there’s hope Dear mother, follow my remedies & you will see improvements it will take some time to adjust. Be patient and do not miss a dosage of directions for her regiment. If you skip a day of the regiment it will not work , but if you follow through this regiment you will see your daughter get better and you will have peace at home. I have helped many children & adults with natural remedies in the past 25 years .

daily Headache upon waking only in left temple lasting about 15 -25 minutes. Headaches began about 5 months ago. Pain is sharp and pulsating.

Answer: Use 1 Vitamin B12 caplet this relaxes the neurological system & helps with insomnia, irritability, nervousness. and it is not harsh to use. you can use as 2 caplets a day every day as needed. Children & adult safe. it helps you sleep at night too sometimes it may takes 4 days until it works depending on the immune system. When taking this do not allow processed sugars only organic Blue Agave Sweetener it’s a healthy choice.
Do not have her get B12 injections this is only for energy, the caplets are reversed it relaxes you and the neurological system and it doesn’t hurt you.

Also she gets headaches 1-2 times a week preceded by visual aura a few minutes before the headache...pain is also only in left temple and sharp and pulsating

Answer: Take 1 magnesium caplet along with 1 B12 vitamin caplet this will alleviate headache pain. also assist with eye pressure. Also use eye drops for dry eyes this helps a lot. The twitching will stop.

Occasional pressure behind left eye.

Nasal Congestion upon waking
Answer- Take 2 capsules of Echinacea 3 times a day no more along with Vitamin C 3 times a day, . As needed in a day for 10 days if she feels better before then you can stop taking this regiment.





frequent sore throat -swollen tonsils but no infection

Answer - This means her immune system is poor it needs to boost up with Echinacea for a regular boost take 1 capsule up to 2 capsules three times a day AND 1 capsule or caplet of Vitamin C take 3 times a day until needed she should be feeling good in 3 to 4 days. Note: if fever comes up she must take 1 gel capsule of Oregano Oil Extract, this will cut the fever 1 a day as fever is present, along with drinking 2 whole bottles of infants Pedialyte of any flavor she would like. This will assist her keeping her electrolytes in tact, and do not give her solid foods yet until the fever is broken and if she has appetite the Pedialyte has sufficient Properties to help her heal quicker and safer and it assists with dehydration and diarrhea. This is for all ages: infants, teenagers and adults and senior citizens its all natural for the body.

Sensitivity to sounds-sounds seem much louder-happens 4-5 times a week without warning.
Answer- Take vitamin B complex once a day along with the Vitamin B12

When she is sensitive to sounds, she become highly irritated and angry if they don't stop.
Answer- B12 vitamin is ok to use 3 times a day if she’s irritated with a glass of water

insomnia - Can easily fall asleep but cannot stay asleep. Melatonin, valerian root or sleep aids do not help.

Answer- You are right, NEVER use those these components are harsh for the nervous system in a child & adults Use Vitamin B12 as I stated in your past answers and drink 1 cup of Chamomile tea before bedtime it relaxes the nervous system

Recurring dreams that she is being kidnapped out of a window. She has had these dreams for years now.
Answer- Keep giving her B12 caplets, this helps relax, do not give her B12 injections that is to give her energy you do not want that use need Vitamin B12 to relax her body & mind.











Her irregular menstrual cycles...cycle will start for 2-3 days, then stop for 2 days then start again for a few more days.

Answer--Take 1 teaspoon of Ground Fenugreek 1 to 2 times a day, this will regulate menstrual cycle and allow adult ovulation in the future to be normal. Fenugreek has 4 sides to assist in our health, one-regulate menstrual cycle , two-regulate ovulation as an adult women, three- assists with growth and fullness of the breasts within 4 months taking it 3 times a day. And Fourth-helps balance out the blood sugars for diabetics taking 1 tablespoon of Ground Fenugreek two times a day preferably in the morning and before bedtime it can be taken before eating a meal and you can usually find ground fenugreek through the internet or Indian markets.

She is very sensitive to preservatives, artificial coloring, sweeteners. Gives her a headache within 15 minutes. She avoids foods with those ingredients.

Answer- She can Use Organic vegetable food coloring, available on the internet. And for sweeteners try Organic Blue Agave or fresh Sugar cane juice, available in the Spring & Summer Time, I but it at the Mexican Super Markets all the time its called caña de azúcar fresca you just peel it and use a juice maker machine to liquefy it its fresh & natural I use it all the time for my ice teas hot teas, Aguas frescas & when I bake my cakes etc…


Emotional Symptoms: Her description of how she feels emotionally: I feel alone & unloved like I’m bothering every1, Like no 1 cares I feel irritated/upset.

Answer -Your daughter has depression she needs to speak openly to you about everything and you must be a good listener do not judge her for her past be loving as you are her mother and best friend. If this is not successful allow her to see a professional Physiatrist for canceling but do not take any prescribed medications they do not work it harms you! Just allow her to open up to someone where she feels comfortable with who she can confide her fears. & be patient I know its not easy but we have to have faith in her and in God, give your problems to God and Things will change but grow in faith, Believe In God, Jesus Christ and the Holy spirit. If you do not believe in this that’s OK just believe in your God who is really only One true God that comes in many names and religions, He is the same to all of us
Answer-- As for her finding a mate right now, it is Not Wise boys will take advantage of her because she will be too pleasing upon a mate, do not encourage her with this instead have her go along with you to visit a church where she can make friend s. you will be able to receive more assistance with your daughter find a church of your choice and speak out for help they will be more than happy to help you. If you do not find a church you are comfortable with. You can pray at home and meditate with your daughter its very spiritual. This will bring you two together in peace don’t give up God our creator is listening.

My impression: very eager to find a mate whether boy or girl- she 'loves' anyone that shows interest in her , she has low image of herself , short fuse-easily angered
injures herself (cutting) but mainly superficial cuts

Answer---The cutting is an insecurity of herself she needs reassurance that she is loved & safe with you and that you will always be here for her no matter what. I’ve seen this in my foster children & I helped them with a organic diet, love compassion, about Gods love & forgiveness. & I set up rules for them that are firm and it worked they are seeking attention & they didn’t know how to express themselves, but with guidance I was able to help them heal inside & outside. For the past 20 years they still visit me on holidays & love them dearly. And I am happy to have had them in my life.

has suicidal ideations-has made plans on how to do it
not constantly depressed - happy things do distract her and her mood lightens.
moods are very inconsistent and she can go from very happy to very upset in a matter of minutes

Answer---Sometimes added anger can be a victim of rape or molestation if so, you must seek help for her and assure her it wasn’t her fault & that you love her. Let her give her anger to God tell her to ask God to remove the hate, fear and anger, and regret from her heart and soul she needs to pray this every day till she gets it from our God. And if this is not the case it could also be a few more things like bad medications, poor diet, and constipation the remedy is for constipation is pure Pulp Prune Juice (not concentrate) this will give her relief and help with her health living a better diet. Add lots of fiber, veggies & fruits, herbs, spices that are good for her try to keep it organic or garden grown from your own back yard . Look for the high fiber veggies and fruits to add to her diet. Keep track of any food allergies as well this is an important factor to having the headaches and migraines write a list keep it as a journal write everything she eats & drinks and record of all the vitamins and remedies she is taking everyday for the next 12 months this will help you manage her diet and allergies on control. Once you find out the food allergies, eliminate it from her diet!! No exceptions. Good Luck to you and your daughter. Today’s Date: Thursday, April 21, 2011. I hope I was able to help you and answer your questions as open as possible.












She has had very bad reactions to Elavil and Cymbalta...both prescribed to help with her nerve pain and depression. She had increased suicidal thoughts, panic attacks and generally felt worse.

Answer-- Keep away from those medications Elavil and Cymbata since she had this in her system have her to a detox cleanse of the body I suggest a tea that is natural called *Yogi -DeTox Tea: Drink it three times a day for 90 days this will eliminate all the toxic residues from past hard prescriptions taken in past year. Let her be in sun light during the day. and have her join activates and get her a deep tissue relaxing message is good for her once a month she needs an adjustment from a message therapist. To relax her body muscles and state of mind. She needs to take a multi vitamin a day. Her tremors and nerve pain on the arms, feet hands legs and chest will stop if the chest pains persist have her take 1 grill oil capsule a day this will release the chest pain over night. Tremors could also be a part of Diabetes if so, take the Fenugreek regiment mentioned earlier 2 times a day you will see the results within one week. Lets take this one day at a time. Ask her questions about what is bothering her so much such as , school friends family, of possible molestations or Rapes-Abuse and her love life and maybe if she’s in a abusive relationship with her boyfriend. . Once you ask you will find solutions for her, sometimes kids cant cope with being gay in secret. I’m not saying your child is gay I am just putting it out there” last but not least or she could be doing this for attention, and if you find out that it is for attention. Spend more time with your child and do activities with her and just listen closely to assist her and assure your love for her. Just remember don’t get angry with her be patient and accept her and try to help her in every way you can.


Symptoms from her CMT:

Electric shock nerve pain in arms, hands, feet, legs, chest, Muscle weakness tremors in hands.
Answer--All this is due to the medications she had taken, it was harsh for her body she must DeTox herself you will see results in 90 days use the DeTox Tea by Yogi it’s a good cleanse. the tremors will be less noticeable. I, know CMT is serious and there is no cure but this regiment will make her more comfortable & healthier with this disease


Please let me know if you need any other information and thank you so much in advance. As a mother, I feel so helpless...I want to keep her safe and help her heal.
 
behrochoa last decade
Hello Barb.
Maybe you did not see my previous post, so I take it once more.

'I've looked through your description of your daughter's illness.
Can not be 100% sure, but a remedy that comes up is Mercurius Vivus.

Does your daughter have night sweats? Or she may drool when she sleeps?'

Parakletos;Practitioner of classical homeopathy
 
Parakletos last decade
To Parakletos,

Sorry I did not see your post. No, sehdoes not get night sweats or drool. I did notice that she breathes very, very quietly as she sleeps..almost like she is not breathing at all.
 
Barb77 last decade
To behrochoa,

Thank you so much for your help. My daughter does take 1 B12 tablet daily but I will have her use 2. I try to avoid B6 as it can be toxic to those with CMT in larger doses.

I did speak to her about her anger and if she was ever raped or molested. She said that if she was, she does not remember. A few years ago, I did notice a marked change in her behavior as she started to get very upset at Dr checkups if the Dr needed to check under her clothes. She says that she has a very strong fear of being raped. I'm wondering if something could have happened that she is mentally blocking out.

We are going to start your regimen and hopefully she will find relief and peace.

Thank you again!
 
Barb77 last decade

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