Breathing issues

[Guest guest]

Hi All,

My son is 15 years old with CMT 1A. He has been having trouble breathing for

over a year. He can not take a deep breathe. We have been to the pulmonolgist,

cardiologist as well as his neurologist. He has been on asthma medicine which

did nothing. His tidal volume is 80%. It was finally decided that his chest

muscles are very tight/short therefore he can not take a full breathe. When we

went to the neurologist last week he said he wasn't sure this was a CMT 1A

issue. He did refer us to a physical therapist to see if she could help. I was

wondering if anyone had any ideas. This greatly affects his life and I don't

know where else to go.

Thanks,

[Guest guest]

Hello ,

My heart goes out to you and your son.

The same thing happened to my sister and myself... I would give anything if the

CMT sites would put more information out about CMT and breathing

difficulties.... Doctors, and people with CMT need to be " aware " of the

problems some people have with breathing difficulties, but yet they don't want

to " alarm " anyone. How crazy is that?

I would have your son have his Phrenic nerve checked. Drinking chlorophyll

helps, and have him stay away from household chemicals, fast food restaurants,

any carbonated drinks are awful. You might raise his bed or pillow so his upper

body is higher. Doing breathing exercise seems to help me too. I also find

massage is helpful.

I hope you find all the answers you need.

Kay

[Guest guest]

Hi ,

I have breathing difficulties too and I have CMT 1A. Here are some additional

suggestions. I don't recall all the details of your emails exchanges with

Kay, so I apologize if I duplicate anything.

1. CoQ10. I take 300 mg. Others have had good results with 200 mg.

Currently, there are studies going on with 600 mg for CMT, in general. Official

results not in yet, just anecdotal. Definitely get doctors' approval before

trying.

2. Incentive Spirometer. Kay mentioned breathing exercises. Some use

Yoga. My neurologist recommended an incentive spirometer. It helps, just be

sure to have him using it while sitting straight up. I've injured my ribs while

using it sitting on the couch watching TV. Should check with doctor before

using. It's inexpensive, about $6. Example...

http://www.allegromedical.com/respiratory-therapy-c534/airlife-volumetric-incent\

ive-spirometer-without-valve-4000ml-capacity-p190080.html

3. Lidoderm patches on the chest. This is something that helps me, but may not

be helpful for everyone. I get pain and inflammation in my rib cage from the

ancillary muscles working so hard. Subconsciously, it causes me to not take

full breaths. The patches ease the pain and the muscles become more relaxed,

breathing isn't as shallow.

4. Sleep study and possible C-pap/Bipap machine at night. You want to make

sure he's getting enough oxygen at night. A sleep study can give the doctor the

info needed to determine if a breathing machine at night would be helpful.

5. Avoid getting overtired. I personally find that when I'm overtired, my

breathing is much more difficult. I've even been to the ER after exercising too

much. Thought I was going to suffocate, overfatigued muscles couldn't bring in

the air.

6. Get enough sleep and have a regular sleep pattern. Studies show that lack

of a good sleep pattern increases pain and muscle fatigue. (As I write this, I

realize I'm having difficulty breathing and I'm up late again! This is the

hardest one for me to follow.)

7. Avoid large meals. Smaller, more frequent meals are considered better from

a nutritional standpoint. For me, it also impacts breathing. A large meal

makes my breathing more difficult. With lying on my side and not moving a

muscle, it gets better. Easier solution, eat less. Not sure exactly what the

problem is, but I believe it puts pressure on the diaphragm area, making the

muscles work harder.

8. Nutritional supplements may have some value, though perhaps not as much for

breathing as the CoQ10, IMO. I take the combo of Vit C (Ascorbic Acid, 500 mg),

Vit E (natural d-Alpha not dl-Alpha, 400 mg), and Alpha Lipoic Acid (100 x 3).

The Vit C should actually be higher, but higher doses give me headaches. The

ALA makes the Vit C & E more efficient. Definitely check with a doctor before

adding any supplements. Also, might want to make changes gradually. I usually

wait at least a month in between changes, so I can identify side effects.

http://integratedneurology.net/cmt.htm

9. Keep weight down. Excess weight will make breathing more difficult.

10. Reduce stress. Stress exhances breathing issues. I'm not sure exactly

why, but I believe it causes muscle tightness, making it harder to take a full

breathe. Just the stress of thinking you aren't getting enough air can

significantly enhance the problem. Emotions are powerful. Relaxation

techniques can help. Being concerned about this problem, is no doubt stressful

for him. The more he can learn about it, the better. Understanding it and

feeling in control will reduce stress and allow him to more easily move forward

with life.

He is very young to be having this problem. I'm sorry you and your son are

having to cope with this challenge. If I can help in any way, please let me

know.

[Guest guest]

Hi Kay!

Can you provide more information on the chlorophyll? What/where do you get it?

I found this information on the

http://www.whfoods.com/genpage.php?tname=george & dbid=52 site:

Foods that contain chlorophyll

While all green plants contains chlorophyll a, and most vegetables that we eat

contain both chlorophyll a and chlorophyll b, some vegetables contain

particularly high amounts of total chlorophyll. Best studied of all the

vegetables is spinach (Spinacia oleracea in the Latin scientific name), with

this vegetable containing about 300-600 milligrams per ounce.

To understand how high in chlorophyll this amount turns out to be, compare the

chlorophyll content of spinach to another of the World's Healthiest Foods -

olives. Chlorophyll is one of the primary pigments in olives, but olives contain

only 30-300 micrograms per ounce (about 1/1000th as much as spinach). Some olive

oil producers deliberately allow leaves to be placed in the olive presses to

increase the chlorophyll and " grassiness " of the olive oil.

All of the green vegetables in the World's Healthiest Foods - asparagus, bell

peppers, broccoli, Brussels sprouts, green cabbage, celery, collard greens,

green beans, green peas, kale, leeks, green olives, parsley, romaine lettuce,

sea vegetables, spinach, Swiss chard, and turnip greens are concentrated sources

of chlorophyll.

Thanks!

[Guest guest]

I had no idea such a condition existed. I'm 60, have HNPP and my problems are

all mobility-related...severly-weakened hands, can no longer walk, I'm in motor

wheelchair, etc...but I had no idea this was possible. Knowledge is power,

thank you for sharing.

>

>

> Hello Everyone,

>  

> Because of the deterioration of the peripheral nerves around my sister's

phrenic nerve, which were causing deteriorating of her diaphragm... my sister

ended up in ICU from CMT-1A, in 1995.  She was put on a trach for 9 years.  In

2004 my sister died from CMT, at the age of 56 without any secondary conditions.

>

> In 1995 I was diagnosed with the deterioration of the peripheral nerves around

my phrenic nerve, which was deteriorating my diaphragm. Once they found out I

also had the same problems, as my sister, they put me on a bi-pap to hopefully

slow down the progression of my phrenic nerves, and diaphragm nerves from

deteriorating. 

>

> In 1996 and 2004 I went to a sleep lab to change my bi-pap settings.  Between

1996 and 2010 I did not get the help I needed from my Pulmonary Dr.  Each time I

asked for help he told me to raise the head of my bed.

>

> My symptoms were: I couldn't lie down without feeling like I was suffocating,

I would awaken in the night with a panting type breathe, heart palpitations,

tremors, my body was deteriorating at a much quicker pace, This had been

progressively getting worse for about 4 years.

>  

> I saw a new doctor a few weeks ago. She had me do a sleep lab ASAP.  The night

my new settings were changed to my V-pap most of my breathing problems

disappeared.  Thank God for my new doctor!

>

> During the past year and a half I have gone through breast cancer, extreme

atrophy, and a blood clot all which could have been triggered from low oxygen

levels and CO2 poisoning.

>  

> I know of 4 other people passing away from CMT because of the deterioration of

the peripheral nerves around their phrenic nerve, which deteriorated their

diaphragm and dying without any secondary conditions.

>

> More than ever I know the importance of getting a good doctor.I've seen in

our family how easy it is to believe a doctor who says there is nothing they can

do.  I believe and seen that sometimes the family becomes desensitized to the

problems with CMT and they don't really realize what is going on.

>

> If anyone has any suggestions please feel free to email me at

ilovewater333@... Prayers are great too! -)

>  

> Kay on The Beautiful Oregon Coast ;-)

>

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