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severe itching

Posted: December 25th 2008

angelosgrandma

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Hello, I am a new to this. I am seeking help from others who have started on this journey before us. My grandson has been diagnosed with mito following a liver biopsy. He is doing so much better now with help form so many. Angelo is doing well but his quality of life is severely hampered by SEVERE ITCHING. He is tormented and scratches until his skin is shredded. We do our best to distract him during the day and he wears tights so he cant get at his feet and legs, wears mitts at night to prevent his scratching but he is now 2 1/2 and has learned how to undress himself at night. He is taking actigal with little effect. Are there any others who have suffered this SEVER ITCH? Any suggestions for relief will be so appreciated. Thank you all. Praying for a cure. Angelos Grandma

 
MotherWhimsey's picture

wow, this is the first other

Submitted by MotherWhimsey on Thu, 12/25/2008 - 10:07pm.

wow, this is the first other person I've ever had mention this. My son is the one diagnosed with Mito, but my daughter we have suspected of having much milder Mito. She itches a lot of the time. There is nothing we've found that has helped so far, but she itches terribly. With her it isn't all the time, just on and off, but it's often.

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Courey mom to Aniyah, 4.5 and Linden, 20 mos. Linden has Mito complex III deficiency with slight deficiencies in complexes I and II. He is o2 and tube dependant.

www.lindenberriesandrosebuds.blogspot.com

Hi, Im new to this site. My

Submitted by msc1 on Wed, 06/24/2009 - 8:28pm.

Hi, Im new to this site. My daughter has Mito. She also icthes and I have found that after she takes a shower I make sure she does not dry all the way and I cover her with aveno lotion and that seems to do the trick. It does not work all the time. She is going to undergo allergy tests next week. She aslo has dry sclap and I treat that with something simple as head and shoulder two or three times a week.

Thanks Jackie

cellolover's picture

Hi Jackie! Welcome to this

Submitted by cellolover on Wed, 06/24/2009 - 10:24pm.

Hi Jackie! Welcome to this site!
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Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.

Thank You for welcoming me.

Submitted by msc1 on Thu, 06/25/2009 - 10:43pm.

Thank You for welcoming me. My daughter is 20 and has mito.
cellolover's picture

I'm sorry your daughter has

Submitted by cellolover on Fri, 06/26/2009 - 9:53am.

I'm sorry your daughter has to deal with mito. Has she always shown symptoms, or is it a newer thing? Looking back I can see that I have had symptoms since I was 12, but they didn't slow me down too much until I was 17. I am 21 now. Best wishes for you and your daughter!
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Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.

beck7422's picture

I deal with regular itching

Submitted by beck7422 on Mon, 07/13/2009 - 8:47pm.

I deal with regular itching until bloody problems. The cause is Sensory Integration Dysfunction which is a common problem for people with Neuromuscular Disorders. The TREATMENT for it is a brush using the Wilbarger DPPT. http://www.pbbkids.com/the_wilbarger_brushing_protocol.htm For me personally, this protocol works wonders in lowering how much I scratch myself bloody. I still scratch a lot, but I now have fewer open cuts due to this protocol. I probably would scratch less if I used this technique as often as I am supposed to rather than just when it feels like worms are crawling under my skin.