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Discussion Starter · #1 ·
Yesterday was the Pediatric Ortho appt, the one that I was dreading because I was sure that it was a giant waste of time and we would walk away with the same feeling of disgust mixed with annoyance because of another 4 hours of our lives wasted and no answers. Here we are after the appointment and I am certainly not annoyed other than that we don't have a definitive answer but the appointment was not a waste of time. To start with the doctor was actually very nice and he was patient and wanted to hear all about Finn and what we had been through already. At the beginning of the appt the Ortho was pretty sure that the lump on the heel of Finn's foot was not related to anything bony and that an xray would prove that. He went on to say that if the lump on his heel was the only symptom, he would rule out other things with this xray and then stop looking for a dx, that it was possible that a child would just be a different sort of kids from the general population and that we could stop worrying but since Finn has the lumps on his arm and his finger/hand that he would like to find an answer to make sure that they were not anything serious. So he mentions that sometimes people can have growths that are considered neurofibromas and that they can be signifiers of some different diseases and syndromes, which is when I mention that I have some Cafe au lait spots and that all of our kids have at least a few of them. He says that it is a definite possibility that we are looking at NF and that we should continue looking in that direction. I was SO HAPPY that he had brought up the very thing that I have been researching for almost a year and that it wasn't that I was pointing in that direction and he grudgingly said yes to shut me up, he mentioned it first and was sure that we should keep searching out answers.<br>
We go get the xray, which is a feat all in itself, the xray had to be taken weight bearing and Finn ended up standing uphill on a foam block balancing while i held him up with his lead hula skirt. He did stand still and we only needed 3 xrays, which he said cheese for! We go back into the office and after waiting a few minutes the doctor comes in and looks at the xrays, he says that the lump on his heel didn't show up, so that means that indeed there is no bone involvement there but there were two very tine spots on the bone of his foot (the back bottom, heel) that looked suspicious, they were a bit different than the rest of the bone and he didn't know what they were. He said that usually he would order an mri for someone who could stay still for the test but since Finn is 3 and he would have to be sedated with general anesthesia he thought that we should wait until after we saw the Rheumatologist because there is a good chance that they would order an mri to look at the lumps on his arm and hand and it would be better that he only be sedated once in a month rather than twice. I do agree with that, though I do wish that we didn't have to wait for another month to get into the RHeumatologist. He said that the spots could be many things from a cyst in the bone to a tumor to absolutely nothing of concern so we would have to check back in four months to see how they had changed.<br>
I was very surprised that the doctor was supportive of my thoughts about what we might be looking at, he did mention all of the different things that I have researched and thought might be what we are looking at with Finn. I am not sure whether we should try to get into a Neurofibromatosis clinic in Boston before we see the Rheumatologist, or should we wait to see if all of this is related to a rheumatological issue. I know that getting appointments that are within a few months is not usual around here and I would like to see if we can get one now for after the Rheum appointment so that we wouldn't then have to wait if they referred us out.<br>
I am still confused and worried about what is going on with Finn, he is really whiny lately and will cry after he wakes and want to nurse for almost an hour before he wants to get up. He is different than he was a few weeks ago, but I can't really put my finger on just what is different other than the crying and clinging. The ortho was concerned by this and wanted to make sure that we brought him to the rheum. The ortho also mentioned that we could go to a geneticist to see what they would say, that we would most likely be asked to bring all of our kids and that they would look at all of their different peculiarities and see if there was a disease or syndrome that would make sense. I am so happy that he said that he would refer us if we wanted as that is what we have had the most problems with in the past, our ped is not big on referrals. So as we stand right now we are waiting ( not very patiently) for the RHeum appointment at the end of July that will hopefully be able to help us rule out or in the different rheum issues. If then we are still without a dx i guess we look into NF. In the meantime we are to come back in 4 months to see what is up with the spots on his bone, unless the rheum orders an mri.<br>
I guess we are no closer to an answer but now I have a doctor who is not saying I am either imagining things or a nut case....<br>
I just called and we have a NF clinic appt....... September 30th so here we are waiting!!!<img alt="" class="inlineimg" src="" style="border:0px solid;" title="wink1">
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