Discussions By Condition: I cannot get a diagnosis.

Need Some Advice Please Re:18 month old son

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: NickNMattsMom
  • January 18, 2009
  • 01:20 AM

I am very concerned about my 18 month old son's health. Let's start at the beginning, I had a repeat Cesarsean with no problems, and my son seemed like a happy healthy baby. Then, at a week old, he started having bloody stools. I was breast feeding and his peditrician suggested we switch him to HypoAllergenic formula, which we did and the bloody stools cleared up after a few days. Around 3 weeks old, he seemed to be having trouble breathing, almost sounded like he was gasping for air. Took him to the ER and they said he was fine. About a week later, the breathing thing happend again, but this time he turned blue aroundthe lips and fingertips. By the time the doctors actually saw him in ER the blueness had faded and he was "fine". Let me also say that I am not a first time mom worried about every little thing, I have a 4 year old also. Anyway.....we took him to a pulmonologist who diagnosed him with Laryngealmalaysia, just by looking at him and listening to him.

When he was 6 weeks old, he had RSV.......then at 6 months old he had RSV again, this time admitted to the hospital for low O2 sats and difficulty breathing. Between 6 months and 15 months, he had recurrent ear infections (10 in total) and at 9 months had pneumonia. Then, at 13 Months, the unthinkable happend. He had a seizure, which lasted approximately 40-45 mins, aspirated, went into respiratory failure and was cyanotic. They HeliVac'd him to the nearest childrens hospital where he was intubated, had a 2nd seizure and in the PICU for 9 days. They said that due to his aspirating during the first seizure, he had pneumonia. While in the PICU, he had fevers anywhere from 100 degrees to104 degrees for 6 or 7 days. He also presented with Petechiae due to very low hemoglobin levels, which they gave him platelets for. He had an abnormal EEG and was later diagnosed with epilepsy by a Neurologist. He was in the hospital for 14 days, 9 of which he spent on the ventilator.

He was later diagnosed with asthma, due to chronic cough and recurrent wheezing although these are always associated with a fever, runny nose and so on. He had tubes put in both his ears at 15 months. He was in the hospital again in December for a lung infection (not RSV or Pneumonia), O2 Sats between 85 and 92 and fever again varying from 100-103. He was discharged once his sats reached 97 and stayed there. I took him back to the doctor last week because of a very severe cough and congestion, but they said his lungs sounded fine and it was just a cold, then on Monday, he came down with Pink Eye, so they put him on Antibiotics, and yesterday at about 3:30am he woke up with a fever of 103.8. His fever had stayed pretty constant all day, between 101 and 103, and his peditrician says it's viral and will clear up on it's own. Needless to say, I am a bit tired and my poor baby has been through so much.....when I asked his pediatrician if she felt there could be something else going on she said "Maybe, I don't know, ask the pulmonologist next time you see him."

So all I'm asking for is a little advice.....I feel like there may be something going on that the doctors haven't caught yet......or maybe I'm just worried about my boy......either way, please help, any suggestions or advice would be greatly appreciated. Thank You

Kristi

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19 Replies:

  • Hello Kristi.I'd firstly like to say, ear infections and pneumonia in babies usually occur because the baby is not receiving breast milk. As you may know, breast milk has the nutrients that keep the baby healthy and strengthens his or her immune system. Hence the reason your child has those two symptoms. It would help many of us out if you could tell us a few things, that you can recall, you took. Be it drugs, foods, or liquids. The reason I ask is because there are some medications that affect the pregnancy, in many bad ways. Something else that may help us is if you or your husband has history of the medical conditions that your child is presenting. If not, then I believe the problem was derived from medications, a drink, or some food that you had ingested many times during your pregnancy.I don't know much about a child's health and vitamins that he or she requires. I do believe that giving your child some Vitamin C, found in Orange Juice, will help strengthen his immune system. I do NOT recommend giving him the pills, and it is something you should ask your pediatrician about.This is the only advice that I can give, and I recommend asking your baby's doctor and pediatrician what he or she recommends when it comes to strengthening the immune system in a baby.As a note, I believe that another visit to a secular doctor may help you out. It does not hurt to have a second opinion, and it may give you a bit of peace of mind.Sorry I could not help you to a better extent. I hope for your child's health, and wish you the best.-Tiedye
    Tiedye 31 Replies
    • January 18, 2009
    • 05:50 AM
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  • Hi TieDye, Firstly I have to say that I believe in breastfeeding 100%....the only reason that we switched our son from breastmilk to the hypoallergenic formula was the bloody stools he was experiencing on the advice of his peditrician. Also, I did not take any drugs or medications while pregnant or even before the pregnancy aside from the normal antibiotics when sick, and occasional IBU for back pain (not while pregnant though). I have a history of a tethered spinal cord, which was surgically repaired when I was 16. My husband is in good health, aside from having shoulder surgery due to a car accident. Our older son is also in good health, having a cold only once or twice a year. Our pediatrician has our son on a multivitamin w/iron, and he has been taking this since he was about 6 months old. He is also on seizure medication and a nebulizer for his asthma. Thanks for responding, I appreciate any insight that anyone may have, and we are seeing a new doctor in February (earliest appointment they had available). If there are any other questions, let me know. Thanks again. Kristi
    NickNMattsMom 3 Replies
    • January 18, 2009
    • 07:57 PM
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  • Hi Kristi,If you are open into looking into a different direction, I can help you. Since the doctors can't find anything I might have what you are looking for. You see, doctors are trained in medicine and know not one thing about nutrition. I would love to introduce you to a nutritional supplement that can possibly be the answer to your prayers. It has helped children with autism, ADHD, diabetes, dialysis etc. It doesn't matter what you suffer from. If you feed your body the proper nutrition it requires daily your body will react in ways you never thought possible. I am not saying you do not feed your child the proper nutrition we can not get everything we need in our daily diets. Think outside the box I think you will be surprised. If you are interested, it could be the best information sharing you have ever had.Nancyaonove@optonline.net
    lovemykids2 28 Replies
    • January 18, 2009
    • 10:11 PM
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  • Hi Kristi,I wrote a post but I do not know what happened to it. If you are interested in helping your son with an all natural approach contact me.
    lovemykids2 28 Replies
    • January 18, 2009
    • 10:39 PM
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  • Were you ever advised to see a pediatric cardiologist? I am assuming they checked him out from a cards standpoint, but I wanted to check. Especially since he had problems with cyanotic events early on. Makes me wonder about a congenital heart problem.
    frustratednp 17 Replies
    • January 19, 2009
    • 02:53 AM
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  • Any unusual sweating in your little one? Has he had any other problems with his stools since the original bloody stool episode? How frequent are his bm's and does he suffer from diarrhea? DOM
    acuann 3080 Replies
    • January 19, 2009
    • 04:50 AM
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  • Well he did see a cardiologist when he was about 15 months old, they thought he possibly had Kawasaki's disease, but the cardio said that his heart looked fine. He does sweat an awful lot, especially at night, his sheets are usually pretty damp when he wakes up in the morning or from a nap and his hair and jammies are usually pretty wet. He hasn't has any other bloody stools since the first episodes. He has about 3 or 4 bms a day....sometimes more, sometimes less.....but normally 3 or 4. He has had loose stools lately, and last week he had some pretty severe diarreah, but the doc said that was from an antibiotic he is on. But normally his stools are pretty loose....not solid like my other sons were at this age. He hasn't gained any weight since his 15 month checkup, he actually lost a pound, but the doc says that his weight is still ok for his age. He is also not eating like he used to. He drinks plenty, but he doesn't really want any "real" food lately. When I brought it up to the doctor they weren't concerned, said just give him whatever he'll eat. I'm not really sure what else to do....I try to ask the right questions when we see the doc, but they kind of blow it off, like this is normal. If it is, then great, but my little man has been through so much and I want to be sure they aren't missing something. Thanks so much, I appreciate any help at all, if there are any other questions, please let me know. Kristi
    NickNMattsMom 3 Replies
    • January 19, 2009
    • 08:51 PM
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  • Kristi,You really need to think outside the box. I believe if you gave him Reliv which is a nutritional supplement you will be helping your child. Reliv has helped so many children whether it is autism, adhd, depression, etc. If you are not satisfied all you have to do is return the product in 30 days for a full refund. If nothing else, your child will get complete nutrition which he is not getting now. I know this will help him past just nutrition.
    lovemykids2 28 Replies
    • January 19, 2009
    • 09:04 PM
    • 0
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  • Kristi, I am curious about where you live. Have you taken him to a university hospital or a specialty children's hospital? They usually have specialists that are more familiar with strange symptoms. Has he seen a GI MD yet? Best of luck, this must be terrifying for you and your family.
    frustratednp 17 Replies
    • January 19, 2009
    • 09:11 PM
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  • We live in New Jersey. I was thinking about taking him to CHOP (Childrens Hospital of Philadelphia) being that it's only about an hour drive from us. I'm not sure what kind of doctor to see, or who to talk to about it. Now that I think about it, I'm going to call tomorrow and see if I can get some info from them. Thank you so much for your help. I'll update as I get any new info. Thanks again. Kristi
    NickNMattsMom 3 Replies
    • January 20, 2009
    • 02:31 AM
    • 0
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  • Try to contact Dr. Eric Rydland. He is a pediatrician and a homeopathic md who had diagnosed some rare conditions in children. He helped my daughter when she was having reactions to vaccinations and no other pediatrician was able to help. Good luck.
    mtvergara 1 Replies
    • January 20, 2009
    • 02:43 AM
    • 0
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  • A lot of hospitals like CHOP (which would be an excellent place for you to go) have referral lines or people to help you make appointments. If you go online, you can probably find the number and usually they have people that can help to coordinate appts for you. Best of luck.
    frustratednp 17 Replies
    • January 20, 2009
    • 03:34 AM
    • 0
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  • Yes, please pursue the Children's hospital if you can. Keep pushing for tests and answers. Does his sweat seem exceedingly salty? Does he taste salty when you kiss him? Due to your son's antibiotic use he should be on a children's chewable probiotic. Find one that is nondairy based. Actually, for his age a liquid would be best. You can find this at any good healthfood store or online at www.vitacost.com. A probiotic will help rebuild his intestinal flora, which will in turn help boost his immune system. This will help with his loose stools. Best wishesDOM
    acuann 3080 Replies
    • January 20, 2009
    • 03:41 AM
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  • Hi Kristi. Have you considered Genetic Counseling? There are many syndromes out there that so many doctors just aren't aware of. For example, my son has Smith Magenis Syndrome. One of the symptoms that you mentioned he has a huge problem with. He is currently on his 3rd set of tubes for Chronic Otitis Media (inner ear infections).Brenda
    colbysms 5 Replies
    • January 26, 2009
    • 10:14 PM
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  • I've read your initial posting. It's important to understand that pneumonia subsequent to RSV is not uncommon at all and it can be difficult for toddlers because chronic inflammation can result in a rather persistent syndrome and expose the child to a host of opportunistic infectious agents over a relatively short period of time. The fact that your son demonstrated refractory epilepsy at such an early age would cause concern that it needs to be repeated after one year of treatment. It would be my guess that it is transitory and will likely resolve without the need for antiepileptic treatment at some point. Overall, I see nothing here to suggest the presence of an underlying pathology which would support the constellation of symptoms described in the posting. Some infants and toddlers can experience some trouble just out the starting gate but once the immune system is patent they move ahead with normal resiliency. I'm certain that plenty of labs were performed and the usual systemic markers for diseases that might otherwise represent a causal factor were negative. Still, if you feel comfortable presenting him for evaluation at CHOP, then pediatric immunology might be a good starting point. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 27, 2009
    • 00:49 AM
    • 0
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  • It's very possible your son has a genetic disorder of some kind. Do you have a history of auto-immune related diseases in your or your husband's family? If you don't know try to find out. Also, did this come on after a vaccine? My daughter's immune system is comprimised. She had an adverse reaction to the MMR and it triggered many things with her. However, an adverse reaction can come on with any vaccine not just the live vaccines. Please consider getting a referral from your Dr. and taking him up to Mayo Clinic in Rochester, MN. They should be able to give you a diagnosis. My best advice is to keep a log of what happens with him each day and keep a note book of medical records for each specialist. Also, have you seen a gasrto for the bloody bowel movements? Stay stong and don't let the Dr's tell you there is nothing wrong or that there is nothing else they can do. Keep going as there is an answer as to why these symptoms are occuring. Great luck to you as I truly understand what you are going through with your son. These are very unsettling feelings. Take Care.
    Anonymous 42789 Replies
    • January 27, 2009
    • 01:12 AM
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  • Too late now but getting off the breast milk was of no help... Your child does need to eat right... Best gift you can give a child is eating right.http://www.fns.usda.gov/TN/kids-pyramid.htmlIf you suspect food allergies, get off for a few weeks then add to test. If no reaction , the food's OK.Asthma goes with skin sensitivities: does your kid have any skin problems? You can find ways to help eliminate problems in these guidelines:http://www.nhlbi.nih.gov/guidelines/asthma/asthgdln.htm
    Anonymous 42789 Replies
    • January 27, 2009
    • 04:17 AM
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  • Kristi, I recommend attempting a referral to Mayo Clinic in Rochester, MN.Also, it is very possbile your son has a genetic condition / comprimised immune system. Do you have a family history of auto-immune related diseases? This could also be an adverse reaction to a vaccine. Your son could have been born with a certain condition and the vaccine triggered something in your son. This is what happened to my daughter after the live vaccine MMR. This is something to consider. I feel it is something he was born with then something made it worse. I just got a referral to Mayo for my daughter. The doctors can't tell me what's going on with my daughter after 5 yrs and several specialists so I truly understand your pain. Please keep going and be persistent with the Dr.'s. Don't let them make you think there's nothing wrong. Find the answer....there is a reason your son is having these problems. If you have any questions about Mayo pls let me know and I can give you my email. Take care.
    Anonymous 42789 Replies
    • January 27, 2009
    • 07:16 AM
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  • My son was a very healthy boy until about 2 months of age. We had the same problems, always diagnosed with pneumonia, upper respiratory infections, broncotitis, strep throat, sinusitis, everything, to me it was always a guessing game. My son did not have seizures though, but was also diagnosed with asthma, After 8 years we finally found out what he had, It was bronchiectasis. Now since this has been misdiagnosed for so long, my son has to have surgery to remove that part of his lung, I think he has had this since he was 2 months, becuase he also had severe acid reflux and respiratory failure at 2 months of age. Which acid reflux a severe caase can cause bronchiectasis, Alos if left untreated can cause heart problems as well as other major problems, Hope this helps.
    Anonymous 42789 Replies
    • February 23, 2009
    • 08:13 PM
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