10 mo old with low fever crying and involutary movements

[kiddybugs]

Hi..I am very frustrated and confused. My son is 10 months old. He is my third child.  He has been sick or something wrong with him ever since he was born..Started out with him projectile vomiting and crying while I was breastfeeding. I stopped at 3 weeks because he seemed to be not tolerating my milk. Started on enfamil, started getting allergic so pediatrician decided to switch to isomil advance (soy formula)...that seemed to help. He didnt throw up or spit up much at all...perodically up until now he will have a SEVERE reflux attack (crying, drooling,swallowing constantly, choking)..its pretty scary whe he does that..The worst was actually a week ago.  He had upper GI (normal) and on zantac again..But dont know why it is so severe...Thats just part of his problem. The other has been that he has been sick with RSV twice, constant ear infections which were so bad that at nine months he had to get tubes put in. They said the fluid behind his eardrums was like gelitin.  Two days after tubes put in he got sick and had another ear infection. But without exaggeration he has been sick with some type of infection or virus every month since he was born.  So these past few days he has developed some type of sickness again. This time completly refusing to eat or drink, crying almost constantly, very weak, and sleeping a lot. He also developed a fever of 101.1...my concern mostly is that he is doing these involuntary jerking and twitching..sometimes looks like he is flenching, sometimes he will throw his arm up..then cry afterward. I just got back from the ER and was neg for flu and strep..docs didnt really care about his history...or think anything about the involuntary movements...His pediatrician unfortunately cant get in contact with until work week only. ER docs didnt call her either. I mean we r in her office almost every week. Im so scared that something with his immune system or neurologically is wrong that they r missin.  I forgot to mention that during his ear tubes procedure they drew blood for allergies and they did a delayed testing and results came back that he is alleric to cows milk, peanuts, dust, dustmites, mold, and SOY!! His formula has been soy from when he was a month old..it ranked as a class four too which is the worst..so if anybody has any answers, espeacially about the twitching and just being sick all the time..I would greatly appreciate it.  And yes his oldest sister is in kindergarden and im sure she brings home a lot of germs but I have a 2 amlost 3 year old too and she hardly ever gets sick and the girls share the same room...ok..sorry this is so long but its as short as i could make it..and its probably only half of what i wanted to write..Thank You to who ever takes the time to read this.

[kiddybugs]

He is 10 mo. He is doing a lot better now. I took him to his ped today and they did bloodwork whuch just come back as a viral infection so still no answer. She pretty much told me that she does not have an answer for what is going on with him. She wants to recheck blood count in a week.

Im a nurse also. So this makes it even more frustrating cause i know there is more things or tests that can be done.  Thats great that u have a diagnosis. Thats what I want just to have a pease of mind and to help him feel better.  I think the only way to do that is to travel to a specialist or childrens hospital.  

Thanks again for your info. I really appreciate it.  I will keep u updated. They did blood cultures as well so i will know about that in about 2 days. Thanks!

[rendean]

Hi,
How is your son? I just read your response. If your son is just laying around and is not playful he needs to see a doc!!

I would personally speak to your pediatrician about the inability to contact her after hours. It's possible her answering service is the problem and she isn't aware of it. But, there should always be a way to contact your pediatrician short of an ER trip.

As for my son's diagnosis, we never really got one despite many thorough work-ups by some of the best pediatricians in the field. He did have a depressed immune system but nothing to hang your hat on per say.  They treated each infection as it occurred. He did have some serious sinus infections and required surgery to amend them. His anatomy is just different.

For instance, on his last and final sinus procedure to remove a mucocele from his frontal sinus, I was told  most kids do not form frontal sinuses to any great degree until they are 10 years old or more. My son was 6 at the time of this surgery.

Some of his symptoms such as a continual low grade fever, etc  were investigated during hospitalizations and nothing significant was ever discovered. He also had stomach issues and hip pain. This was treated but all blood work involving these things never pointed to any specific diagnosis.

Since I used to work as a nurse, I finally took things into my own hands last year and made an appointment for my child at Chicago Shriners Hospital. He had a GREAT exam and work-up by a team of orthopedics and rheumatologists. My guess was right and he did get the diagnosis of spondyloarthropathy. So , now we have a name for part of his ailments but it's good to a name to describe what has been wrong for so long.

I wish you well and keep me updated. I'm usually on another forum but say your question listed under "Questions For You to Answer" on my home page as selected my medhelp , I suppose.  BTW, treatment at Shriners is completely free. You just need to fill out an application and go through their acceptance procedure. We were turned down by one of the other Shriners Hospitals because they felt they didn't have the expertise to handle his case but the next one did and they did a fantastic job.

Good luck,
Ren

[kiddybugs]

Thank you so much for your information and advice.  I do not like the hospitals around here just for the fact that they are not pediactric docs in the ER...I keep saying I will do the 2 hour drive everytime I leave the hospital but end up going right back to the same one. His pediatrician is great..just cant get a hold of her on weekends and after hours.  I am def considering taking to a childrens hospital if his condition continues to worsen today.  I just want some answers. I hate putting him through all this but he seems miserable 90% of the time.  Did they ever get a diagnosis for your son?? What were the febrile seizures like with your 2nd child..cause he is also twitching in his face...he is just so sluggish and laying down all the time. He also acts like he is in pain a lot...i dont know, but I will def be trying to get some answers this week.

[rendean]

This nightmare sounds like my last child's medical history. I am truly sorry you are living through this nightmare. My last (3rd ) child had very similar issues to that of your son.

My first question is did you take your son to a pediatric ER or to a pediatric ER such as one connected to a solely pediatric hospital? the difference in our story and the strides we gained, came from our  contact with an academic teaching hospital that  was pediatric in nature. Children are NOT baby adults.

My son was tested for allergies as well as a host of other diseases, celiac disease, food allergies, GERD (which is an issue) and severe sinus disease ultimately tied to the GERD and a low immune reaction after being on antibiotics almost 24/7 for months in addition to inhaled steroids for the sinus issues.

The stiffening of his arms could POSSIBLY be due to fever induced seizures but DO NOT take my word on this as I am not in a place to make a diagnosis. I'm just sharing my life experiences. My 2nd child had febrile seizures but luckily not my 3rd.

My advice is to connect with an expert pediatric diagnostician. You can find one by going or calling an pediatric ER and asking the nurse their opinion. It is usually a solid opinion  based on what they have seen and heard.

I wish you  luck and am terribly sorry you are in this spot. If it helps, my sick 3rd child just turned 18 years old last month. It was a milestone I never let myself think about as I thought if I lost him to infection before then I would have less to grieve. Yes, it's a morbid thought but I think you understand it.

I would ask for a referral to a pediatric neurologist for possible seizures and a pediatric infectious disease doctor as starters and locate the nearest strictly pediatric ER.  Trust me it's worth the 1 1/2 half drive I made dozens of times...my baby just turned 18!!!

Wishing you and your family the best.
ren