Newbie with Questions

[saralambiecat]

Hi everyone! I cannot tell you all how happy I am to have found your site!!!!! Let me introduce myself and give some back story first. I am am the mom of a 10 yr old daughter who has JRA and is ANA positive.  

My daughter has had JRA since she was 4. When she was 5, her arthritis was getting worse and spreading to more joints and her Rheumy wanted to put her on Methotexate. It was then that we found Dr. G M in Maryland who began treating her with Zithromax twice a week. She did go on a Probiotics in addition to the antibiotics treatment, this is what Dr. M had suggested. She was on the Zithromax for less than 6 months and then went into a 2 yr remission. When her arthritis did come back it was very aggressive and affected many more joints ( after reading the posts on this site for the last 3 days I realize this is probably because she should have stayed on a maintenance dose). We moved to Texas the next month and could not see Dr. M (who had just retired ) before we left.

Once in Texas we asked her new rheumy about the use of Antibiotics, hoping
there would be more kids on it in the two years we were out of the loop, and he would prescribe for us, but he wouldn't. Now that our daughter's condition continues to worsen and she has had such adverse reactions to the NSAIDS and Methotrexate I have become a Mom on a mission. Luckily there are a lot more people out there that are using Antibiotic therapy now. I have posted on other sites looking for help an got the name of Dr. R K, MD in Lufkin Texas(who I will be calling tomorrow). It will be a 4 1/2 drive but we are willing to drive further to get her out of control Arthritis back into remission.

Anyway that's a bit of back story, my main question is are there any other moms/dads who children are using the AP Protocol and what their experience has been like. Again I am so so so happy to find this site and support for the fight against Arthritis!!
Blessings to you all! 🙂
Lisa

Hi Lisa, have edited your post to remove AP Dr names and just left initials, as per RBF BB policy. Thanks for your understanding. 😀  

[Texas T.]

Lisa, I too see Dr. R K in Lufkin.  As it will be a long drive for you and your daughter, (it is for me too), there is a facility where you can spend the night for $15.00 – that's what the brochure I have says – but I don't know if that is a current price or not.  Dr. R K's office staff will give you this information if you ask for it, but here is the web site in case you find it easier to make the trip with an overnight stay.  http://www.hospiceinthepines.com/house.php  Phone #936-631-3400.  220 Gene Sanford Dr., Lufkin, TX  75904.

Best of health to your beautiful daughter.

Hi Texas T – have removed AP Dr's name as per RBF policy. Thanks for your understanding. 😀

[Cheryl F]

Lisa:

There are a few other “mothers on a mission” here on the RBF BB.  Welcome!  I am glad that Dr. R K is within range for you.  I have heard many wonderful things about her.  Her story of how she began using AP therapy is interesting to read, you can find it on the Road Back Foundation website at this link: https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/482.html

Also, your daughter is beautiful!  Alot of personality comes through in that photo!

Cheryl Ferguson

 

 

[saralambiecat]

Texas T. and Cheryl, thank you both for your kind words and help. There have been others who emiled me offline with very helpful info as well, and I am so grateful!

I was able to get an appt. for my Daughter with Dr. K on Thursday!! They had a cancellation, I am just so happy:roll-laugh:!! Luckily, my sister is going with me as it will be a 4 1/2 hour drive up there. My mom is also coming up to watch our other two children, yea!

Thank you all again and I will keep you posted on our progress!!

[Cheryl F]

WOW!  Thursday!  That is my kind of timeframe.  Good Luck with your trip! 

Cheryl

[saralambiecat]

Hi all! well we got back late last night and all I have to say is how impressed I am with Dr. K. So basically she thinks our daughter might have Celiac's Disease. Crazy I know! But we started going over her entire life's medical issues and she really believes that's what it might be. She put her on Zithromax 3X a week and gave us a stool test kit to send off. She also said that because we have been using the steroids it probably set us back two years, that was hard to hear. She also said the Celiac's disease could explain the ADD and once she started the diet we could see that go away within a matter of days. I am really hopeful but also cautiously optimistic. I wouldn't say it's hard to believe that this could be traced back to her diet (especially after all the research I've been doing here lately), it's just hard to believe it could happen to us! I will be posting an article I found(as I've been researching since I got home), on another thread, it's an interesting read! Thank you all for your care and concern it means so much! I will continue to keep you posted as I get more information!

Some of her medical issues that stood out were:

her chronic ear infections(starting from 6mos of age) and frequent illnesses(she gets everything!).

her Basophils were high on blood work she has had done. (although I don't remember what it meant).

Dr K also said that the ADD she has is an indicator, but can also manifest in forgetfulness, spaciness, spacial issues(her daughter who has it was always running into things), fatigue, general tiredness

she has always had stomach problems( I attributed this to the NSAIDS but that could have only exacerbated them) also when she little when she would drink too much milk would get awful stomach pains

she also used to get mild patchy skin rashes when she was little

she bruises easily

O and Dr K said that the two week food allergy tests I did were not long enough to be effective and that I had to remove absolutely all the 'wrong' foods completely(which is hard to do)

O and if you have any other questions about her symptoms and such please reply.

Blessings!
Lisa
_________________

[Cheryl F]

    Lisa,

Thanks for the update.  It is helpful to all of us to learn these things.  The potential Celiac diagnosis will come as no surprise at all to many of us here.  Dr. F, my daughter's doctor tests his patients for it.  Jess was overwhelming happy to hear that that test came back negative.  She has a friend who has Celiac and has seen how restrictive her diet has to be. 

Regarding the ADD, John Mc Donald might be able to share some insight on that related to infection and AP therapy.  Hopefully he will come by and weigh in on this subject.

Cheryl Ferguson

[saralambiecat]

Hi Cheryl,

Thanks for the info, I really do believe that her Arthritis and ADD are related some how, when her Arthritis is flaring so does her ADD. I know it has something to so with the blood brain barrier and the inflammation, but that is all.

I definitely hear you on the celiac diet, my best friends hubby has it and it is tough to follow, but the results are amazing!

Blessings!!
Lisa

[Maz]

Lisa, many thanks for posting your sweet little daughter's symptoms…I was amazed as I read through them, how much they mirrored my 16 year old's past history. I'd always wondered about her inability to concentrate from a young age. She's been having occasional bouts with severe abdominal pain lately. I had her to the doc for ultrasounds and x-rays, as he was concerned about gall bladder or kidney stones…or pcos. Nothing showed up. She's had another bout with this same pain again in the last week…doubled over, but it passes within a few hours. She also had infantile eczema until about age 3, occasional ear infections and slight asthma, which she grew out of and which her training for competitive swimming seemed to help. However, she does struggle with fatigue and doesn't have the get-up-and-go that she should have for her age, especially as she should be so fit with all her training. Everyone calls her a “ditsy” blonde, because she looks like she's listening, but then goes, “Wait…what?”….all the time. Watching her closely, I think she misses half of what is going on around her much of the time and she's always had trouble focusing in school. Unfortunate part about this is that she's very smart, but just doesn't pull the grades she ought to for her ability.

I really do appreciate you detailing everything, as I'm wondering now if it would be worth getting her checked for celiac. I haven't made any connections to her spaciness before now. So, many thanks and very grateful for the heads up on this.

Peace, Maz

[saralambiecat]

Wow Maz,

I think you should definitely get her checked out too. So glad our experience could help!!!

Blessings!
Lisa

[Serenity]

To this interesting discussion, I recently read that Jenny McCarthy said after putting her son on a gluten-free, dairy free diet, his autism more or less disappeared.  Gluten definitely plays a major role in my RA pain — when I haven't had any for a few days, I feel better.  It's worth exploring for sure!

[lynnie_sydney]

And I would add, once again, the link to a site that is so worth visiting, generated  by the woman who runs the allergy clinic at one of our major teaching hospitals. It has a wealth of brochures and fact sheets on all sorts of allergies/sensitivities all over the site and discusses the results of sensitivity/allergy – including celiac, autism, asthma, ADHD, arthritis and so many other topics. It is a goldmine of information and worth spending time at. More than a quick read, so worth bookmarking. Lynnie

http://www.fedupwithfoodadditives.info

Also some interesting info on celiac disease and celiac syndrome at an AP doc's site http://www.drrima.com

 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[saralambiecat]

Lynnie,

That is a great website, I came across it yesterday and have been going through it. The drrima website is good too, that's actually the Dr we are seeing!! I'm going to put one more website that I found yesterday, that I thought was pretty good as well as a list of symptoms that Dr K gave me.

Lisa

http://www.csaceliacs.org/index.php

Here's the list

Abdominal cramping/bloating
Chronic Diarrhea or chronic constipation
Pale, Foul smelling or fatty Stools
Weight loss (this si a classic symptom, sometimes to the point of death from malnutrition)
Weight gain (10-20% of the very obese need to stop gluten to lose weight)
Persistent nausea and vomiting
Unexplained anemia(due to iron deficiency from bleeding or due to other vitamin deficiency's such as B12,B6 or folic acid
Fatigue or Weakness
Swelling and fluid retention
bone or joint pain
arthritis
thinning of bones to the point of osteoperosis
irritability or depression
poor school performance
tingling or numbness in the legs(peripheral neuropathy)
muscle cramps
unexplained seizures
night blindness
missed menstrual periods(often because of excessive weight loss)
infertility, both male and female
recurrent miscarriage or recurrent preterm labor
delayed growth or short stature
failure to thrive in infants
sores inside mouth, called aphthous ulcers or canker sores
tooth discoloration or loss of enamel (teethe crumble)
itchy rash called dermatitis hereptiformis
follicular keratosis(rough skin with the hardening of the hair follicles
cracked lips at the corner of the mouth
shiny tongue
easy bruising
low or high thyroid function
diabetes
low or high parathyroid function
pancreatic insufficiency

Some have no symptoms at all

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