Discussions By Condition: I cannot get a diagnosis.

sick baby please help

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: ddmayx
  • December 16, 2006
  • 10:28 PM

My son will be 1 at Christmas. We have spent the last year living in ***l. His ex PCP continued to tell us for the 1st six months of his life that he had a virus at each visit to his office. We had started breast feeding at birth which he weighed 6#9oz by the time we had left the hospital he was at 6# with jaundice. His 5th day of life we were at the PCP his tear duct was infected. At 2 weeks he looked pitiful, looked like he had anexoria. He was still at 6# so I had to start supplementing. When we started with the bottle he would get choked, gag, and then throw up. With all the hassle of bottles, breast, and returning to work we finally went to bottles only at 2 months. At 3 months of age we were at the ER with breathing problems. His lungs were inflamed we then went to 4-6 breathing TX a day. I requested a swallow study to be done. At 3 ½ months the swallow study revealed he had chronic aspiration and severe reflux. The PCP then put us on prevacid and thickened his formula (alimentum). Everything seemed to get a little better until we got to 5 months with the exception of a couple visits to the ER with really high temps. Each visit his wbc would be elevated but no signs of infection. So we would get a couple of shots of rocefin. At 6 months I requested to see a pediatric GI since he seemed to cough more, get choked more and throw up more. After seeing the GI and changing everything for 1 week he had gotten drastically worse and lost close to a pound. The GI put us in the hospital for a scope at which time he put a NJ tube in place. His esophageal sphincter was not closing thus making the reflux worse. Also he had a hital hernia. The GI also requested additional test which showed he has a milk/ soy protein allergy, along with a latex allergy. Which I had suspected and had previously informed the PCP of the latex and they had agreed. We were immediately put on Neonate. 3 days later we had a fundoplication, hernia repair, and a G tube inserted. For about 2 months we were somewhat better then we started having problems with the balloon slipping us then under went another surgery to change to a JG button. We had another swallow study that shows his aspiration hadn’t improved. The next month we started with ear infections. We were on antibiotics for 10 days then 3 days later the ear infections were back we underwent another round of antibiotics and within 3-5 days after finishing them we were back at the dr office with still double ear infections we then did 3 days of rocefin and he still had fluid in his ears so we were scheduled to have tubes put in. We had to stay on antibiotics until the surgery was actually scheduled 2 weeks later at that time one ear still had a lot of puss.2 weeks after the tubes being put in he had a bought with clostridium and yet still another round of antibiotics. After this we were at the PCP to get his granulation cauterized and he was better , and I asked for some labs to be done. His wbc was 16000 3 days later with a 103.8 rectal temp it had risen to 19000 with no visible signs of infection. His IGA was 2.1 but the lab lost the other immuglobins. We had another shot of rocefin when he continued to have that high of a temp for 3 days straight. We can not use Motrin due to his funoplication and feeding tube. Last week at the GI he still is not gaining any weight we have already increased his formula by 50 ml daily last month. We are stuck at 4 oz bolus 5x day then we go on the feeding pump for 8 hours since he can not have anything by mouth. Now here we are today 4 breathing TX a day with him coughing, congested, and not feeling good with bronchitious. We have so many allergies milk /soy protein, latex, bananas, and betadine that we know of. I so desperately need to know for sure what is wrong with my son. WHY IS HE ALWAYS SICK!! I don’t know what else to do. I am willing to do anything at this point to make him better. Please if you possibly might know what is wrong with him or what else I can do to get him well please share with me.

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7 Replies:

  • I am so sorry.Please read about eosinophilic enteropathy at www.apfed.org or at www.cincinnatichildrens.orgAlso, you may need to really REALLY increase his reflux meds. Some babies need very strong doses to keep symptoms under control. A friend of mine has a 6 yr old baby that is on a higher dose of Prevacid than her husband is!How does your baby tolerate the Neocate? Maybe you should switch to Elecare. They are "technically" the same, but some babies do better on one than on the other.Google "Primary Immunodeficiency Disease" and ask to repeat the IG tests.Has your baby been tested for mitochondrial disease? Maybe you should Google that, as well, and see if it fits your situation.What area are you in? Maybe I can recommend a better GI for you. My son's doctor literally saved his life-a good doc is essential when you're going through something like this.Are you looking into seeing a speech therapist or an occupational therapist for help with the gag reflex? There are lots of exercises you can do at home, as well. It's important to get those muscles working right as early as possible.Have you introduced solids through the G tube, yet? How's he doing with that?Hang in there, mom. Wish I could give you a hug-it's so hard when your baby is sick.
    Anonymous 42789 Replies
    • December 16, 2006
    • 11:19 PM
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  • He seems to tolerate the Neocate we have not had any blood in the stool on it. His little face has continued to stay broke out on his cheeks since he was born. I was hoping the formula would of helped with that but at this point some acne is my last concern. I was astonished at the Primary Immunodeficiency Disease information I found. That sounds like it fits us. We are in Chattanooga TN our current GI is David Devoid whom I absoultly adore. He has done so much for us and actually took action when the PCP kept brushing me aside telling me he had a virus. The week that we were put in for the scope the day before we were at the PCP and he stated all of his symptoms were a virus that had peeked.Dr Devoid had us to start speech therpy but due to all of his allergies the speech therpist said the feeding of baby food we can do at home. Oh yeah something else he isn't able to move his tounge side to side either. At the moment we have stopped speech therpy. We are try to raise his bolus amounts but have been unsuccessful each time we have tried 4 1/2 oz he retches and gags so we had to go back to 4 oz. I have started going up 5 ml a time. So for a few days we did 125 ml and was successful. At the moment we are at 130 ml per each bolus feeding. Thank you so much for your help. I feel like I know which direction to possibly go in now.
    ddmayx 2 Replies
    • December 17, 2006
    • 00:10 AM
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  • He seems to tolerate the Neocate we have not had any blood in the stool on it. His little face has continued to stay broke out on his cheeks since he was born. I was hoping the formula would of helped with that but at this point some acne is my last concern. Well, if he's still broken out, it might be worth a try to just do a trial of Elecare. You never know, and if that makes him feel better, you'll be so glad you did it! I'm sure you've gone over all of the possible non-food allergens in his life. Hope you're able to pinpoint it soon. My niece was so sensitive that she couldn't even read magazines because the ink is soy-based in most of them! Acne isn't usually just "acne". It's usually a symptom of an allergic reaction in a baby. (so are ear infections!)And, just for your info...you cannot always see the blood in the stool. It still might be there.Have you re-scoped to see if the fundo has helped his esophagus to heal? My little guy didn't need the fundo, but everytime we try to take him off his Prevacid, he stops gaining and growing. I hope you're able to get the reflux under control.Also, are you using Prevacid Solutabs? They have lactose in them, which is not the milk protein, but the milk sugar. If your son has a milk-protein allergy, it is possible he is also lactose-intolerant. This might be contributing to some of his distress.Hope you can get the Ig labs redone and get some answers about Primary Immunodeficiency Disease. I'm so happy to hear you have a good GI. Did he check for eosinophils when you did the scope? You should request a copy of the lab report and do some research on what it says.
    Anonymous 42789 Replies
    • December 17, 2006
    • 03:06 AM
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  • I forgot to add one more thing...I think there is a website like www.g-tube.com and there is a forum for people dealing with tube issues. Maybe they have some tricks on how to raise the feed amounts.
    Anonymous 42789 Replies
    • December 17, 2006
    • 03:10 AM
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  • Now I really am about to lose it. He has pneomonia. The PCP wants to send us to a pulmonologist when I specfically asked for and allergist / Immunologist. What do I do now!
    ddmayx 2 Replies
    • December 19, 2006
    • 01:10 PM
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  • Hey-pneumonia is taking its toll on many healthy strong people this winter. You probably DO need to see the pulmonologist. But, keep pushing for the allergist referral, as well.There is a website called www.kidswithfoodallergies.com and it pretty much saved my sanity when my son was your son's age. Take a moment between breathing treatments to check it out.
    Anonymous 42789 Replies
    • December 19, 2006
    • 05:53 PM
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  • My son is 10months old and suffering with many of the same symtoms. So many recurrent infections, followed by antibiotics, followed by hospital stays for iv vancamysin. We currently see an allergist (he has severe food/inhalant allergies), dermatologist (his face is always broken out as well), the PCP at least 3x a month, and in 2 weeks our first appt with immunoloist. I am searching for advice, avenues, miracles.... When I read your story I had to email... I wish the best of luck and a lot of extra patience. Happy Holidays.
    Anonymous 42789 Replies
    • December 20, 2006
    • 04:58 AM
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