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Update on Leland
- Dec 5, 2007 at 11:56 AM
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- Comments (11) Total Views (249) Everyone can see this journal post.
Yesterday, 12-4-07, I took Leland to his pediatrician. It was time for his 2 month check-up and shots. I had talked to the pdeiatrician a week ago with concerns and she had promised to look into it and research the symptoms.
His symptoms were :
Sweating (esp. when eating / even if it was cold and he was just in a diaper)
Small red bumps all over his body
Sleeping constantly (hard to wake up/ more than eight hrs at time just for a nap)
Irregular eating habits (went from eating 5-6 oz. 8-10x/day to just 3-4oz 3-4x/day)
Dry diapers (esp. after long naps like 6-8 hour naps and at night)
Extremely MILD cradle cap (barely noticeable)
Horrible, foul, rotten, decay smell coming from soft spot (even after baths)
from ears (behind and clear oily substance from around/inside that reeks of decay)
occasionally noticeable in urine and sweat as well
I gathered a urine sample before the appt. and took it with me. They tested him for dehydration to explain the lack of urine after long periods of time. Negative. No explanation. She mentioned that he seemed to be very congested and mentioned that perhaps he was sleeping so much because he didn't feel good. (I've always known babies to NOT sleep well when congested for fear of smothering.) That could explain the lack of appetite yes but not the sleeping for so long and being hard to wake. She checked for ear infections (in response to the oily stuff) Negative. Normal Temp. as well. She kept insisting the smell was a result of the cradle cap which is barely present except for mild places on the sides of his scalp (which doesn't stink). Anyhow, she insisted I get a prescription shampoo NOT covered by insurance $40!
She wanted to do the vaccines but I refused. I told her I wanted to find out what was wrong with him first before she put anything else into his body. She agreed to wait 2 weeks and see if the smell went away after using the shampoo. Then, she said she wouldn't want to wait anymore on the vaccines.
She was POSITIVE he did not have kidney disease although it DOES run in my family in infants and she didn't check him. She was positive it had nothing to do with his heart although he had a heart murmer b/f birth and hasn't been checked since. She showed me that he HAD been tested for cystic fibrosis/thyroid/ and several metabolic disorders at birth. ALL NEGATIVE. Juvenile Diabetes doesn't run in my family so she didn't think it was that. No temp. prolly means no other type of infections anywhere. She said that the hospital had tested something with his amino acids and they were fine. Also, his iron looked good at 5 weeks.
Basically, the only things we DON"T know for sure are Kidneys, Liver, Heart, Blood, Endocrine, Metabolic and bacteria and she wasn't willing to test anything.
Anyhow, I left and tried to get my family Dr. to see him b/c I trust him more than anyone. BUT, his stupid office staff told me that he wasn't taking anymore patients. I asked about just a one time visit and they were like "oh thats too much trouble with insurances, blah blah" and I said, "Look, I'll pay upfront, self-pay, just see him!" and the dumb woman was like "well, if you have insurance we can't put you under self-pay!" OMG, how ignorant are these people!!! So, I left a message for his nurse b/c I know that if my Dr. knew this, he would see him...That's how he is. He's wonderful. The nurse caled back and was like "well, I don't see why you aren't happy with your current pediatriicain...blah, blah." she promised to call back but finally, i couldn't wait any longer and had to leave and go home.... the other ped. called at almost 5 o clock and said that the other dr. and her had talked and decided to send the urine out to a lab for further metabolic testing.
FINALLY, they are doing something, but I am soooo aggrivated now. Anyhow, thats whats going on in a nutshell. LOL Keep praying for him! Thanks all!
Comments:
I would find another pediatrician and again look into a childrens hospital. They are usually on top of everything and quick. They know what to look for and all the symptoms. I wouldn't mess around with that ped. anymore.
I have been thinking about you guys too;) I can't believe that you are getting such a hassle from your pediatrician about this, since it's only her job see what's wrong with your baby given the symptoms that you are describing and if she can't help you, ethically speaking she should refer you to a specialist or someone who can get you an answer (especially if you have a family history of issues/rare conditions). I agree with your decision to delay the vaccines (you can go longer than 2 weeks) until you know if your baby is well enough to handle them at all. As the PP have suggested, I would check out a children's hospital or even a college affiliated teaching hospital since they typically have the best access to cutting edge technology and research. Maybe you could just bring him in to your GP's office rather than going through his receptionist because I honestly think it's that big of a deal to find out what's wrong ASAP.
Hang in there and trust your mommy instincts!
Keep at it girl! Keep searching and ditch your current pediatrician. WHAT A MORON!!!! Who the hell would worry about vaccinating a baby with all of the other ailments you are discribing?? That is just so irritating. Please don't let them vaccinate your baby at least until you are 100% sure that he is 100% healthy. BTW...my baby had cradle cap BAD and he never smelled. I also wouldn't use the medicated shampoo. Get some nice all natural baby shampoo like avalon baby or something. For my son when I used the medicated stuff like I was told to, it made it worse, and Gerber/Johnson's both are VERY drying. (formaldehyde in both of them...grrr....)
Hang in there. Sure sounds metabolic to me...
Man, I would drop that pediatrician like a lead baloon - You yave every right to refuse vaccines and they're not respecting that right.
I don't vax my kids at all and if your interested in the plethora of reasons why, do check out my group, choosing not to vaccinate.
I'll continue praying for your little one - how tough!
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