UPDATE.....URGENT...NEED INFO ON 6YR OLD WITH PANCREAS PROBLEM

• By Calaneet
• Posted September 3, 2008 at 9:18 am
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Kathy-
Does your grandson live in NC with you? If your insurance will allow, I would ask that he get transferred to see a specialist maybe at Hopkins or Mayo. They may even be able to have a speacialist there consult with the current physcian to review the records before making a transfer.

I hope this is somewhat helpful. Hang in there, we are thinking of you.

Calaneet

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• By KathyG
• Posted September 3, 2008 at 2:58 pm
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Calaneet, thank you. My grandson does not live with me, I have always been at all the doctors appointments. His gastro. spec. is now going to refer him to Duke University in Durham,N.C. I don't know when he will be going but I'm sure it will be soon. Doctor's told me that they have a great pediatric unit. I pray that we will find out soon what is wrong so he can get treatment. If they can't help then Duke can refer him out of state. I hope that it will not go that far.Thank you for caring. God Bless.

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• By Calaneet
• Posted September 3, 2008 at 4:27 pm
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That is very good news. Good luck and please keep us posted.

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• By foreverinbluejeans
• Posted September 3, 2008 at 6:39 pm
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Your grandson is lucky to have you as a caring grandmother. Remember to take care of yourself so you can keep taking care of him. The process of getting an accurate diagnosis for genetic disorders is very frustrating.

The doctor may have said that he has symptoms of CF because pancreas enzyme insufficiency is a symptom of CF. He may not be getting enuogh enzymes for a number of reasons. He may have needed more enzymes all along but it took him awhile to get very sick. It may be because his diet has made the medication less effective.

Just because you are at 'good' hospitals you may not get a diagnosis or the best care. I was very ill while pregnant 28 years ago and was hospitalized at a hospital that is one of the best in the country. They put me in a double room on the pulmonary floor and people kept dying in my room - 3 or 4 people! Then they figured out there was an outbreak of Legionnaires disease on the floor! They didn't have a clue about what was wrong with me.

The next hospitalizations I went to a smaller hospital with private rooms. I did research and found the best OB and pulmonary doctor at the hospital. The pulmonary doctor figured out I have primary (genetic) immune deficiencies.

My baby and his two older brothers were then diagnosed with immune deficiencies at a major children's hospital, after I told them I have immune deficiencies. My two older sons were 8 and 5 at the time and had been sick since they were about 12 months old. The children's hospital and all the other doctors and hospitals didn't even test for immune deficiencies.

When my youngest developed failure to thrive he was hospitalized at the 'great' children's hospital in a double room with a 6 month old in a crib. The other baby's family lived far away and only came on Sundays. The rest of the time he screamed and I couldn't touch him.

The children's hospital didn't find anything helpful after a two week stay. I stayed with him 24/7 because I was breastfeeding. After we escaped that nightmare I found a pediatrician at the hospital where I was diagnosed with immune deficiencies. He was hospitalized in a great single room. She figured out in a day that he also was very tactile sensitive. He improved with therapy and we were discharged in 3 days. The children's hospital said he needed to be hospitalized for at least 3 weeks and have a feeding tube.

So much for our long story. I am a registered medical lab technologist and have a Master's degree in health science. I can give you info but I am not a health care professional. Your grandson's white blood count could always be high because he is sick when he has it done and it is good the WBC is high. It could be he is always a little dehydrated from digestive problems. If there is less water in the blood the WBC and red blood counts will be elevated.

I wouldn't be too worried about CF. Kids are usually diagnosed as babies or toddlers and have lung problems. He is getting the same meds for CF because people with CF have problems with their pancreas. Just because he takes the same meds doesn't mean he has CF. They may repeate the sweat test because it isn't a very good test. We were doing the same test 30 years ago and had problems getting good samples and accurate results.

When a child is having chronic health problems and the doctors don't have a diagnosis it is common to test for many things. Most of the diseases you mention have to do with the digestive track.

Has he been tested for immune deficiencies? You didn't go into his symptoms but digestive problems including mucus in the stool and high WBC are common in people with IgA deficiency. The bad thing is there is no treatment for IgA deficiency.

Is he following a special diet? If he goes off the diet then he may get sicker. He may be sneaking food he isn't supposed to eat.

Does he go to school? He may be sicker now because school has just started. School may be stressful for him especially if he has many days he misses. My kids missed so many days when they tried to go to school I ended up homeschooling all of them.

What to do now? Maybe the doctors at Duke will be able to figure out what is wrong quickly. They will problably repeat many of the tests he has already had. Try not to worry about a possible bad diagnosis and go day by day. The disease my sons have has a 20 year survival for males of only 64%. It has been 20 years since their diagnosis and all three of them are doing well and living normal lives.

I hope all goes well. If he has to be hospitalized try very hard to get a private room. With all the times that my sons and I have been hospitalized, that is our number one priority. It is less stressful and you are less likely to get an infection.

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• By SeussRN1
• Posted September 3, 2008 at 9:56 pm
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This may be a shot in the dark, but has he been tested for celiac disease aka gluten intolerance? It can cause many gi manifiestation from pain, diarrhea, Nausea vomiting to even neuorlogical problems like headaches - migraine type. I believe it is a simple blood test.

Beth

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• By KathyG
• Posted September 3, 2008 at 11:43 pm
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Foreverinbluejeans, Thank you and God Bless You.
I am so grateful for your respone and information? I'm in awe right now after reading your reply. He has not been tested for immune deficiencies. But I will make sure that his doctor checks him. I'm glad that you and your children are fine. A great testimony. I told the doctor yesterday that I thought it was something simple and maybe something was overlooked and he said that it may be simple but nothing has showed up. He has had endoscopy and colonoscopy several times. Fluid was taken from his pancreas and tested for many things and biopsy was done several times and of the colon. Nothing shows up except the elevated WBC. He has chronic asthma which is under control, lots of sinus infections. Yesterday he was complaing about a headache and dizziness. He was dehydrated and ED gave him IV fluid. His abdomen is swollen and he is low on energy. I don't know if this information will help you but if you think of anything else please let me know.. Thank You and May God Bless you and your family. KathyG

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• By KathyG
• Posted September 3, 2008 at 11:52 pm
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SuessRN1, Thank you also for your reply. He has been tested for Celiac Disease and he does not have it. May God Bless You.....KathyG

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• By foreverinbluejeans
• Posted September 4, 2008 at 2:23 pm
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Two or more sinus infections a year is one of the 10 warning signs of immune deficiency and it's common for people with immune deficiencies to have asthma.

Being dehydrated can cause headaches, dizziness, and low on energy. All of what he is going through has stressed his little body. Encouraging him in having low energy activities that he enjoys may make not having energy easier.

Dr. Mario for the Nintendo is a fun game that isn't violent and one or two can play. My kids liked doing puzzles. He may enjoy arts and crafts projects. You could set up your VCR to tape shows like Reading Rainbow. Netflix has some old TV shows like Fraggle Rock and The Muppet Show. A portable DVD player or a small DVD player can easily hook up to TVs with the front yellow/red/white jacks.

We have hooked up our DVD player to hospital TVs.
Some hospitals have video game systems, DVD players, and laptop computers patients can use. You may have to ask.

I hope he is feeling better. Is he your son or your daughter's child? How are the parents coping? Are the parents taking good care of him? Does he have siblings? Is he on a special diet? How does he feel about that? How is he coping? Is he doing things like hiding or screaming because he doesn't want to have his blood taken or an IV?

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• By KathyG
• Posted September 4, 2008 at 3:57 pm
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Foreverinbluejeans, He has a fit with a needle or if you mention it. That is the first question he will ask the doctor. He is my daughter's son and he has a older half brother. My daughter is like myself she is tired and worn out. She is very good with him. His father does nothing and he is in the home. Everything is on her shoulders. He will not even go to doctor's appointments. I always have gone to the doctor with her since he was a baby. I'm her backup. We both know how to take care of him. When his asthma flares up we are the only ones that know what to do. These men are afraid. It must be a guy thing. Thank you for the suggestions but I had to laugh when you said low energy activities, he is on the go ADHD and we can't keep him still. He is not taking meds for that. This child turns flips and rolls around on the floor, etc. When he was 3 he was playing Superman and instead of using the pillowcase for a cape he put it over his head and jumped off the sofa and hit a solid oak coffee table. He broke his jaw and a tiny piece of jawbone was still attached at the temple and if not for that he would have died. Breaking his jaw did not slow him down he still jumps off of things. We are very close and he spends the night whenever he can. Of course I have him spoiled rotten. He is a very special little guy. By the way his name is William. God Bless....KathyG

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