our Rochester experience/Prevacid/bone fracture/vit D

[Guest guest]

Hello Everyone,

As you all know, we returned about a week ago from Rochester with the disappointing news that Noelle is re-casted for the time being. Many things have come out of that experience that I feel would be negligent of me to not share with this group. Please bear with me as this may be a bit longer than my usual posts.

I arrived in Rochester fully prepared to celebrate what I was sure was going to be a successful visit resulting in Noelle being able to start weaning from the brace. I trusted my own eyes because she looks straight as an arrow to me and at this point, I can generally tell by looking at her spine if we're going to get good/worse or the same news. This time the x-ray was taken differently and we are not confident in the way that it was taken. Our doc himself couldn't tell us for sure whether or not it made a difference either. Typically, Noelle stands against the x-ray board facing the camera with hands down at her side. This time the tech had her press her chest against the x-ray board with her back to the camera and her chin propped up on the X-ray machine. She also had her grasp the sides of the x-ray board so that her arms were extended like the letter "t". One was done in brace and the other out

of brace. The in brace x-ray looks just about comparable to her previous one, but the out of brace x-ray now has her back at 18 degrees. We were given the option to re-brace or cast with the recommendation from our doc that if Noelle went over 20 degrees then we would continue casting again. Because she is now so beautifully symmetrical (no rib hump) we were not able to see that the curve had regressed. He gave us the night to think it over as either way, we were going to the OR the following day for either the brace mold or the cast. We came to the painful decision that since we were fast aproaching that "20 degree" number that we would commence with casting again. We opted for the plaster because Noelle experienced some decent skin breakdown in the waterproof cast that she had last year. As some of you also know, Noelle has been seeing a neurologist and geneticist on a regular basis who feel

that she may have Ehlers Danlos type III due to her ligament laxity. Our doc mentioned it at our office visit as the possible reason that she may have regressed and told us that he has never had any cases of children with EDS who have not needed surgery at some point. In the room with us was quite an entourage of people from the study, interns, etc. and of course, Noelle. I remained my composure, but was thoroughly crushed. When I began this journey, I thought it would probably be about a year of casting and a year of bracing and then done. Noelle has now spent more than half of her life in cast or brace.

That night, after Noelle and my husband fell asleep, I sobbed like I did when she was first diagnosed. The EDS now scares me more than the scoliosis does. So that night I prayed to God, family members who have passed, Mother Nature and anyone else who would listen to make this right. To send me a sign. I fell asleep and had a dream that there was an orange and red snake wrapped around Noelle's spine ( Red I guess because it was the color she chose for her new cast) and I reached inside her body and tore it out flinging it to the floor. I stomped on it again and again until it was lifeless and in my dream, Noelle just smiled at me and ran off to play. I had killed the beast.

Before the OR, I spoke with our doc about what he had said the day before about surgery. And he said to me that those were all cases of children who had curves that were over 80 degrees. He said that some children bounce back and forth a bit. He also explained that he probably has more patients with EDS who haven't been diagnosed because they haven't been to other specialists yet. Therefore, surgery is not a definite for her future. So I remain hopeful, but beaten up a bit for sure. The EDS is a very plausible reason why it may be taking us longer to get to where we need to go. In addition, Noelle is responding worse and worse to anesthesia as she gets older. This is because she is getting more of the drug as she grows and she didn't tolerate it well to begin with. Just an FYI.

I have also been reading recent studies about PPIs (like Prevacid) being linked to bone fracture/lower bone density. I take these drugs and Noelle has been on Prevacid for reflux since she was less than 4 months old. I discussed this with our casting doc and he drew blood for a calcium screen.

Which leads to to today.... I took Noelle to her pediatrician to talk about the scoli and God Bless Rochester, her labs were already there. Noelle has insufficient levels of Vitamin D. This isn't uncommon in toddlers, but Noelle drinks more than 4 glasses of milk daily in addition to cheeses and yogurts. So we are discontinuing the Prevacid for now to see how she does. If she has intermittent flare-ups, then the pediatrician will recommend something to be used short-term for those episodes only. She will be taking 400 IUs of Vitamin D now in addition to her daily vitamin. I felt this information may be noteworthy as so many of our kiddos seem to share reflux. I also have scripts in hand for PT and will be calling my insurance company in the following week to see how many evaluations we are allowed and will pursue that. Although our casting doc said that PT will not make a difference as

far as the laxity goes, i have read many posts from all of you who have said that it has been beneficial. And since it definitely won't hurt, then why not try everything?

On another note, I have decided that i am tired of saying "no" to my daughter for basic things like water and sand play, so I am trying to think outside the box a bit. That is why I have been inquiring about drysuits. And while, swimming and sandboxes aren't possible this summer there are still water tables and sand tables..... Those seem doable and a fun alternative, so I am toying with raincoats, etc. so that we can at least use those.

On our last night in Rochester, we went to dinner and it rained pretty hard. It stopped just before we left at about 8:30 pm and the evening sun peeped out for just a bit. As we drove we spotted a rainbow..... Not the arched type. This one went straight from heaven to earth and the dominant colors were red and orange, just like the beast. And where the two colors met was the color of my daughter's hair when it sparkles in the sun.

The following day, on our long drive home, we went to Buger King for lunch. Steve settled Noelle into a table as I placed our order. I was looking down at my money waiting for the woman to tell me how much. When she didn't speak, I looked at the LED on the register and it said "$6.66." 666. The woman looked very uneasy and i sort of smiled a bit and said "Well that's a wierd number!" And she said, "And it's not one that I like!" I replied that it sort of went with the week that i was having. She took my money and handed me back my change and said, "I broke it." "I'm sorry?" I just didn't understand what she meant.... She explained,"I broke it. I gave you back an extra penny." And I thanked her with a sincerity that I don't even think she could remotely appreciate!

And so I believe That in the middle of the night as I sobbed out my prayers in that hotel room that God and the angels have sent me signs.... My additional conversation with our casting doc, the straight rainbow and the Burger King lady. All signs that I am holding onto that are getting me through this and giving me hope. And while I am still sad, angry and thoroughly exhausted, my resolve and commitment to this disease and my daughter has only grown stronger.

Thanks for bearing with me!

HUGS!

- Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III