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update on my 15 yr old daughter, Marie

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Posted 1/6/2009 4:38 PM (GMT 0)
Hello all.  My daughter lost some more weight over Christmas break and looked horrible and couldn't get up the stairs very well, so we admitted her to the hospital.  They gave her IV steroids, TPM (hyperal??? sp), Nexium, and something else for nausea.  It took 5 days there for her to improve and now she is at school today.  She is getting the great energy Prednisone can help with and has gained 7# already!!!!!  yeah

We follow up with her doc next week and will discuss her future treatment plan after prednisone. 

I pray she continues to improve and respond to the oral steroids.

God Bless You all.  I pray for all of you- and your families. smilewinkgrin

Jennifer

Oh, while at the hospital with her I began reading a great book, Patient Heal Thy Self.

Looking into the diets discussed, though eating dirt doesn't sound that appealing!!!  :)  It has been very informative thus far.

Posted 1/6/2009 4:41 PM (GMT 0)
I hope the medicines continue working for her!
Posted 1/6/2009 4:56 PM (GMT 0)

Thats great news Jennifer. Hopefully, they will maintain her on a mild 5ASA drug. I'm sure you'll will continue to see her progress nicely now. I think I mentioned it before, but if not, I would recommend a Calcium supplement, (Citrate, w. D.).

Tom.

Posted 1/6/2009 5:06 PM (GMT 0)
That's great to hear she is up and about again! But please, please no matter how energetic she might feel don't forget to remind her that her body isn't as strong as the prednisone makes it seem yet!! I made that mistake and ended up going into a relapse of symptoms worse than they came about the first time...just don't let her overdo it..it's so tempting to, but I really wish the best for her getting better. Especially at her age when she needs nutrients and rest to grow and build the strength necessary for the rest of her life.
I agree with the calcium supplement comment too.
Posted 1/6/2009 5:13 PM (GMT 0)
Hi Jennifer! I pray your daughter continues to have great improvement! I'm so glad she's gained weight and energy!

I saw your end note about reading "Patient, Heal Thyself". Rubin wrote it in 2002 and followed it with "The Maker's Diet" in 2005. The MD is the first diet my son began after his diagnosis (after he finished his prednisone). After several months on the MD, I began reading "Breaking the Vicious Cycle" by Elaine Gottschall. The diet she puts forth she named the Specific Carbohydrate Diet (SCD), and it is very similar to the MD. Many people here have had great success on this type of carb-restricted diet!

I learned numerous things from both books, but I tend to use more SCD recipes because there are more resources available--both online and in recipe books--for the SCD. The diet has been a God send for us! We all follow it (family of 4) and have all had positive health benefits from doing so.

Oh, and about the dirt...smhair...we don't use Rubin's supplements. They may be fine, but imo there are other brands that are just as good without his price tag. Also, the HSOs have received some negative reviews along with the positive, so I'm really not convinced they're the key. jmho!!!
Posted 1/6/2009 7:31 PM (GMT 0)
I am also learning how to use the SCD diet. If changing our nutrition on a daily basis will do it and keep me feeling better and I can avoid prednisone, I'll go for it. My doctor told me that using prednisone too often and for long periods will harm the body to that extend that some people who have done so, - may need surgery in the intestines to repair them due to pred damage. I don't know if he told me this because I wanted to use more prednisone if I needed. It's a terrific medicine in helping us feeling good very fast, but I don't know in the long run.....
Luckily I found quite an unknown medicine like LDN, Low Dose Naltrexone. I take a tiny pill on 4.5 mg each night and with good nutrition like fresh vegetables, fresh fruits, fish and poultry I am managing to avoid pain, diarrhea and bleedings. LDN has now brought me in remission, I took around 3 months before I was much better, but the changes came gradually. First the pain and diarrhea got away!!

By the way, I happen to know that a lot of children also are using LDN. Their parents also give them the SCD diet. The diet allows you to use meat, fruits, vegetables, fish, poultry. But it's strict. And you need to go for it wholeheartetly.

LDN on the other hand is a medicine you need to search the net to know more about. People with MS, Crohns, Fibromyalgia, Parkinsons, Psoriasis, Reumathoid Artritis and a lot of other Auto immune diseases are now using this medicine. It's balancing the immune system so that the immune system is able to take care of pathogenes (bad bacterias and so)...LDN regulates the immune system to do the job it was ment to do. Attacking OTHERS instead of attacking SELF. (attacking the enemies instead of the intestine linings).

Look for LDN at: www.ldninfo.org and
http://www.ldners.org/mission.htm (here you can read about Sammy Jo and her MS treated with LDN)
Posted 1/7/2009 2:19 AM (GMT 0)

Goodness, so much awesome information on these posts.  I will look into the med suggested and the scd diet.  I will add Calcium to her regimen of pills and keep her from overdoing.

God Bless you all and thanks so very much from teh bottom of my heart!
Jennifer

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