Second Update on Please help my Baby

[evalon]

First..THANK YOU ALL AGAIN for your replies and concern.  You're all terrific!!!!  I was even able to have a phone conversation with Maz…(had to wait afew days as I would burst into tears whenevr I picked up the phone)  So..things are better, and worse.. DESPERATELY NEED ADVICE!!!!  Our holistic pediatrician found that she has is allergic to wheat, peanuts and eggs.  We removed them all last week….her right hand..which was the last joint affected) is the first one that seems to be getting better…We adore this doctor…. I know that he will work with us and see it thru…I think he is friendly with dr M in chicago (the famous website doc – from which I learned about dr Brown and all of you!)….and as per a friends suggestion (thank you maz!) I will ask him to have a phobe conslt with dr S in cedar grove….We just started the holistic, natural approach a few weeks ago…usually, I would follow this course alone..HOWEVER…Shelby had been unable to walk since mid July- when she was misdiagnosed andf put into a cast…BOTH of her knees are in contracture!!!  We recally need/want the heavy hitters to get her walking..the longer she isn't..the more we worry…We went to two separate ped rheums….neither would even CONSIDER abx therapy….One wants to put her on methotrexate..one wants to put her on enbrel…!! gasp!  (she is not 23 months old next week- 5 – 6 joint s affected both large and small)….To further complicate things..she is NOT vaccinated at all! (didn't want to screw up her immune system while she was under two….sigh…)  So…the enbrel doc said he coudl give her steroids.while I vax ..then..go to stronger drug….Lots of the literature on methotrexate ( I want Enbrel OFF the table now!) says that chicken pox is a particular threat..wanted to see if I coudl just do that one vaccine….Three weeks ago I used the word 'devastated” to describe how we felt that she can't walk…NOE these docs have put cards on the table that have life-threatening complications……SO…..what does anyone suggest..???  Steroids??  We would do it for a few months only…..is that the lesser of these evils….I feel like I'm making a deal with the devil….sigh…thanks for listening…yvette

[Rosey UK]

Oh Evalon

how awful  all this is you're going through it's unbelievable. I don't know how you will cope with it all, you would'nt think they would offer the same drugs as for adults.

Do you feel confident enough to keep with removing the allergy foods and looking for natural anti inflammatories, like omega 3 and a little turmeric mixed in her food, before going the whole hogg with the drugs?

I don't know but your holistic therapist should know more to help.

I hope your baby's soon better. If my feelings and thoughts for you both were doing something your baby would be cured.

love

Rosemary xx

[Parisa]

Evalon,

I would move mountains and hills to get her started on antibiotics (not to say you aren't already doing that).  Steroids and methotrexate don't always work and can take months (especially the metho) to take effect so neither of these are quick options.  Considering the threat of suppressing the immune system …. I know you want results yesterday and I want them for you also.  You are on the right approach with the food allergies.  Add in probiotics to help heal the gut.  Add in antibiotics as soon as you can find someone to prescribe them.  Can you get some type of physical therapy for your little one? 

Steroids can bring some immediate improvement at times to inflammation but you are definitely making a deal with the devil.  They can be very, very difficult to wean from.  My husband was on them for three years and it took us a long time to get him off.  Once your body gets used to them, any sort of stress or flare and you have to up your dosage which makes weaning incredibly difficult.

[carries]

I am sorry about your baby and will keep her in my prayers. I would do the steriods b4 those other meds. The steriods will help with the inflammation quickly and hopefully knock her into temporary remission. Like you said maybe just for a couple months. Then you could try the AP once you get the inflammation under control. I know my cousin was unable to walk due to mytosis and they put her on steroids and she was only on them for a few mths and is able to walk again…..she also started a maintanance drug as well…..but until that kicked in the steroids temp. helped her. She is now off them. I think they started her at 60mg and weened her down every two weeks. She also is doing IVIG therapy. Not sure if your little one could do that or not but its a thought.

[Eva Holloway]

Evalon,

I feel so bad for your little one, the Prednison is a devil in disguise, it will help on the beginning but can destroy the bones, so be very careful. talk to all the doctors that do AP exspecially Dr. S in Cedar Grove, I heard he is absolutly excellent. I know I would move a mountain for my baby that has JRA and food allergies.

I will keep you and your little one in my prayers.

Eva:(

Eva Holloway

[A Friend]

Yvette,

I've sent you a PM about a lady AP physician who is very knowledgeable of not only AP, but allergies (including celiac, celiac syndrome, milk allergies, etc.) in the presence of our diagnoses.  She also has a young woman assistant who devotes time to pediatric patients, and who has a holistic background.  There just may be some very good help from both of these. 

When you open the link I sent, on the list of selections to choose is one that tells about her assistant and her background.  This AP physician is a family practice physician who treats children as well as adults, so at the very least, you should be able to “brainstorm” with her for some options for you, considering the age of your baby. 

Many prayers are being sent your way,

AF

[jims]

Evalon, have you looked at Low Dose Naltrexone? Your holistic pediatrician might know about it. It works by boosting endorphine levels. I listened to Dr. M on blog talk radio who has used it in many very young children and advocates it strongly. Google it and start from there. I am not saying it is the answer, but it is worth looking into. I am in the process of getting it myself from a doctor in Savannah Ga, who is a pediatrician with a holistic interest. If you want his name/ number send me a PM. I know you are trying to make the best decisions for your baby and my heart truly goes out to you. jims

[linda]

Yvette,

I hate prednisone but it may be necessary to get the inflammation down to a level where the abx can work. If she were an adult, I would say go with the mtx, it's easier to stop, but I don't know anything about the risks for young children so I have no advice to give there. But I wanted to let you know that if your daughter is allergic to eggs, she can't get any vaccine, they use chicken egg yolks to grow the microorganisms to use in the vaccine. I was also allergic to eggs, wheat and many other things as a child, and had to skip most of the vaccinations. They may have some solutions now that they didn't have then, like special vaccines that don't use eggs for children who are allergic; your pediatrician will know. I would think that this is a common enough problem that they have come up with a solution by now.

Also, no vaccines that contain a live virus, eggs or not, like the nasal form of the flu vaccine, and tetanus (I think), if she's on mtx or Enbrel. The injected form of the flu shot is OK. I'm not sure about the risks with prednisone.

I was chronically ill as a child and I feel so badly for you and your little girl. I'll bet she's some kind of special. I missed a lot of school, and couldn't go outside when I was sick (it was asthma for me), so I became an avid reader. But as I got a little older, about age 10, I started participating in sports like basketball and track, even some gymnastics. My mother was always scared for me, but my doctor told her to let me do it if I felt like it, and the asthma actually got better with the exercise. Exercise is key for arthritis, it definitely helps the joints but also the depression as it increases serotonin. I have no advice as to meds, I just don't know enough for little ones and the risks as I said, but I can tell you to let her do what she feels like doing. I understand your concerns for her legs and walking, so you'll have to make sure she doesn't overdo it. Once you get this under control, and you will, I think you'll probably be amazed at how quickly she catches up; kids are so much more resilient than adults.

One final thought, for what it's worth. My childhold allergist refused to put me on prednisone, and I was about as sick with asthma as you can get with out dying. I know it prevented me from many other complications as a child that I'm now experiencing as an adult-I've been on prednisone for a long time as an adult and always tell adults to avoid it unless they're looking at life threatening consequences or permanent joint damage. The problem is that she's going to feel great while she's on it, but rebound inflammation is common when trying to wean off of it. IF the risks are the same between mtx and prednisone, I'd go with the mtx.

Btw, what's out little trooper's name? My thoughts are with you this holiday season.

linda

[Suzanne]

Did either ped rheum recommend injecting her knees?  They don't like to do injections when there are several joints involved because a systemic med like Enbrel would go everywhere, not to just the joints they inject.   But injections in her knees might get her walking again and buy you some more time to see how the diet changes will help her.

At her age, she would be sedated, which brings another set of risks, but from what you are describing, I think that is the route we would take.  Injections work right away – mtx is going to take awhile, and Enbrel can, too.  Ped rheums do injections even on patients who want to start mtx and/or Enbrel.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Author]

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