My little boy

[luvmywonderfulkids]

I am having a really bad time right now — for some reason my son's top of his foot is blue — it is not cold here because I am in Florida — can't stop thinking!

[Susan LymeRA]

luv,

Very quickly this a.m. I googled the symptoms of diarrhea and blue skin and a number of hits for pesticide poisoning came up.  Any chance your son has exposure to pesticides?

Susan

[luvmywonderfulkids]

I don't think so but I will certainly talk with the Dr. about it on Wednesday. Do your feet turn blue with scleroderma?

[Susan LymeRA]

Someone else has to answer that one.  I don't have scleroderma.

Susan

[Rosey UK]

Thank God you've found RB.

No your Son is not too young for AP. Too young for SD in my oponion it breaks my heart, that he has this. but every one on RB are the best! and if you just step back and take  a breather and listen to Maz you will be doing the very best for your Son. 

God be with you! we all are.

Love Rosemary

[Maz]

[user=1274]luvmywonderfulkids[/user] wrote:

Do your feet turn blue with scleroderma?

Raynaud's phenomenon can be a part of rheumatic diseases, Sue. I had a touch of it when my RA started as it can be part and parcel of the whole inflammatory picture when blood vessels become inflammed and blood flow is restricted, but it's gone now with AP. I would get tingling and numbness in some of my fingers and toes and they would turn white, then blue and then red.

People with scleroderma seem to get pretty intense Raynaud's and it can be one of the early signs of the disease.

If you take a look at this Mayo Clinic description of Raynaud's it might help you to figure out if this is the issue. The symptoms section describes the color changes that take place due to restricted blood flow to the extremities:

http://www.mayoclinic.com/health/raynauds-disease/DS00433

Definitely something to ask the rheumy about when visiting on Wed. I think a number of people here use viagara to help with Raynaud's, but the scleroderma folk would be well-equipped to tell you more.

Peace, Maz

[luvmywonderfulkids]

Oh My, a soon to be 14 year old on Viagra! We have a new appointment on Friday as well with a Dr. here in Florida that uses AP — he is in Lakeland

[Maz]

Sue, there are alternative drugs listed on the Mayo site, too, like calcium channel blockers…not sure which ones are the preferred ones by the sclero folk here. All the best with the Lakeland AP doc. Please let us know how you get on…he's treating pediatric cases?

Peace, Maz

[luvmywonderfulkids]

I asked that specific question and was told by the office that yes, he would treat him! I will let everyone know what happens. I am hoping that we can get at least a prescription right away to just get started and then if the IV' s are necessary we can do that. I just want him on the antibiotic now because I think he is getting worse.

Sue

[Maz]

Sue, thanks very much for letting us know about the Lakeland doc. I'm assuming this is Dr R who also does IVs.

Volunteers are trying very hard to build a physician list of AP docs that are known to treat pediatric cases and we seem to be hearing from lots of parents lately with kids suffering some form of rheumatic disease. 🙁

Thanks, again.

Peace, Maz

[Kim]

Sue,

Hope your upcoming doctor's appt will start providing some answers.

I have SD and when my Raynaud's was bad it was the soles of my feet turning colors, not the tops.  The palms of my hands would do the same color changes.  You can have him check the color of the soles of his feet before he steps in the shower and then a few minutes after he's in there to see if there are color changes.  Same test on his hands if he holds a cold glass…….typically it will turn chalk-white.  If he does have Raynaud's it needs to be taken seriously to prevent long term damage.  We can help you with more tips on Raynaud's if that turns out to be part of his diagnosis.

Take care…….kim

[lneal]

Maz, You do not know me but I have a 7year old boy who has been diagnosed with localized scleroderma on his scalp.  We are with a top rheumatologist at Vanderbilt Childrens Hospital, however, I want to get to the bottom of this….I spoke with Cheryl this morning and she was wonderful! I sent an email requesting LLMD's and AP doctors. I haven't had any response yet but I am in Nashville Tn but will go anywhere in the world! Do you know any doctors with children and scleroderma using AP? I demanded that they test my son for Lyme–it came back negative–now I am going to go through Igenix–

Any help at all would be appreciated! I want to help my little boy! There is no reason in the world he would develop an autoimmune disease!

Thank you so much!!! Lauren

[Maz]

[user=1942]lneal[/user] wrote:

Maz, You do not know me but I have a 7year old boy who has been diagnosed with localized scleroderma on his scalp.  We are with a top rheumatologist at Vanderbilt Childrens Hospital, however, I want to get to the bottom of this….I spoke with Cheryl this morning and she was wonderful! I sent an email requesting LLMD's and AP doctors. I haven't had any response yet but I am in Nashville Tn but will go anywhere in the world! Do you know any doctors with children and scleroderma using AP? I demanded that they test my son for Lyme–it came back negative–now I am going to go through Igenix–

Any help at all would be appreciated! I want to help my little boy! There is no reason in the world he would develop an autoimmune disease!

Hi Lauren,

I'll send you a PM (private message) with Dr C's contact info in MO in a moment. He treats pediatric cases and is Kim's LLMD (as well as a number of other folk here on the forum). He has a wait-list, so you're best to get booked straight away and, while waiting, get the IGeneX labs run. They take about 2 to 3 weeks. If the tests show no connection to Lyme, then you can always cancel the appt, but Dr C is one of those docs who considers clinical presentation of more import than an actual Lyme test.

Here is a New Zealand website, which interestingly ties Lyme to coup de sabre scleroderma and other forms of scleroderma:

http://dermnetnz.org/immune/morphoea.html

An alternative physician who will treat pediatric cases with both IV and orals is Dr S in Ida Grove, Iowa, but it would be to your son's benefit to figure out a possible Lyme connection as Lyme docs will pull out the full antibiotic artillery to cover all the possible coinfection corners.

To retrieve your PM, just look to top right of this page and click where it says, “You have 1 new message.”

Peace, Maz

PS Take no notice of the “treatment” section of the above link…it's an irony that the connection to an infectious disease is made on that site and then they say there is no effective treatment! There is – antibiotic therapy works and the sooner you can get your son started, the better. 😉

PPS It's also an unfortunate truth that the “top” scleroderma experts don't have a clue about the effectiveness of minocycline for scleroderma.

[Author]

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