Urgent need help

[tracy512]

My 3 /12 started off with Excema as an infant. He is cronically sick with sinusitis. He was on 2 -6 week rounds of antibiotics last year. He is allergic to cats, dogs, dust mites, oak, milk, eggs, peanuts and he has asthma (allergy indused) and a cronic cough. He tested negitive for Cystic Fybrosis. He has had URI's, OM, sinusitis, croup, Allergic rhinitis, pneumonia, RAD, road uri, fifths disease, he has speech and ot delays.  Its like one thing on top of the other. Hes sick atlease 3 weeks out of the month and doctors I have seen just say, "well hes just a boy that gets alot of viruses. He did have an immune test and the results were the following: Immunoglibulin G  in range was 613 he was 522
Streptococcus Pneumoniae IGG AB (6 serotypes)  
   Stereo type 1 in range 3.2 he was .5
   Stereo type 3 in range was 4.3 he was .5
   stereo type 14 in range was 54.9 he was1.2
                    19 in range was 117 he was 1.2
                     23 in range was 50.7 he was 1.0
                     51 in range was 9.1 he did not register
Haemophilus Influenza type B antibody (IGG) in range was 9 he was .27
CBC Absolute Lymphocytes in range is 4000-10500 he was 3276.

*The doctors gave him boosters of pneumovax and hib, he was good for 9 weeks but after that hes had sinus and ear infections, viruses, astma and cronic coughing (mostly at night)  so bad he was sent to  ER. It seems like hes getting worse. ***Now, my husband was just diagnosed with an autoimmune disorder called Hashimoto's Thyroiditis. Could this be linked to an immune issue or a genetic issue? Please point me in a directions, so I can research further.. Any suggestions would be greatly appreciated...  

[momofsinus]

I would strongly agree with Sunny that you have to be very assertive re: your son's care. I have been dealing with a similar situation with my 22 yr old son - horrible chronic sinus problems for 3 years. He has had 3 surgeries and still no relief. I would also encourage you to read as much as you can so you can bring up other possibilities to your Dr. We are just going the route of the sweat chloride test for CF and my son's ENT said we should push for the genetic testing even if the screening test was negative  because there can be false negative results.  Also, I noticed the immune results for the blood serotypes for strep and Hib. My son just had that test as well and came up low. We learned abut this at Rush Hospital in Chicago. They told us to get our son reimmunized as well and THEN get his blood work checked again after 4 weeks to see if his body responded to the shots and made new antibodies. We are in the middle of this process now. The Rush physicians suggested that if the 2nd round of bloodwork showed low antibody results that he may want to consider immunoglobulin therapy to boost his immune system. I know the latter has side effects  but that may be something else you want to ask about.

Good luck to you and your family!

[tracy512]

Hi Sunny!!
Thank you so much for the info.. It will be very helpful for my appointment.. All I want is answers from the doctors and for 3 1/2 years all Ive been hearing is that hes just a boy that catches alot of viruses. That to me is just a cop out and they have every resource to look further into the. I just dont understand why they are reluctant to help my boy. I have a feeling that Childrens Hospital will help... I will keep you updated...

[Sunny602]

I am glad you are pushing for the genetic panel...as far as who can order it, I think an allergist can do so. When they do the panel, try for the Amplified Ambry CF testing, it tests for 1542 mutations...it is expensive, so make sure that your insurance will cover the test. Actually, Ambry will work with you on that...they have a number you can call to make sure that your ins company will cover the test. I am going to give you a link to the site: http://www.ambrygen.com/ts/ts_cf.aspx
Print it out and give it to your son's allergist so that he knows what test you want done on him. Don't settle for any less, sometimes docs will test for the 30 or so most common CF mutations, that is fine if you happen to be one of those, but as you can see, there are so many more mutations out there. Ambry has their own test kit, so your allergist has to order it. It won't cost him anything, they will just ship it to his office, the blood is drawn (just one tube) and then is sent to Ambry for testing.
As far as your husband, is he getting routine thyroid function testing done to monitor his levels? I am glad that he was diagnosed early...his levels are still good now, but that probably will change. I don't think that getting an endocrinologist involved in this stage would be a bad idea...that way he or she could follow your husband closely and treat him when the time comes. Right now, I see my endo maybe twice a year, my regular doctor does most of the blood work. They work as a team though, one always knows what the other is doing. In the beginning, I was followed closely by my endo because my levels fluctuated so much. As they stabilized and more time passed, the visits were less frequent. I guess the call is yours, if you want an endo involved early in your husbands case, then I would get one.
I hope that all of this helps ...Sunny

[tracy512]

I am going push for the genetic testing, is that something that an allergist can do?? Also regarding my husband, he had an ear infection and was given meds, it did not go away they gave him different meds, then he got a ringing in his ear and the doc had him go to an ENT. The ent said the ears were fine, but his thyroid was inflamed. He had the blood and ultrasound done and thats how they found it. The doc said this thyroid is functioning fine and he just has to come in within 3-6 months. Should we see the endocrologist (spelling) the doctor acted like we should wait. What do you think?
Thanks!
Tracy

[Sunny602]

Hello Tracy...I would push for that genetic panel, I mean really push it. Like I said, there are people out there with borderline to normal sweat tests and wind up being diagnosed with CF in later years. I am one such person, my sweats are borderline at around 50. Granted, I am atypical...but present classically with CF and am treated aggressively. I was diagnosed at 33, I am now 36.
As far as the Hashimoto's, now that I am being treated I am not as tired but there are days when I am just so fatigued. My joints also took a beating from the Hashi's...even with Synthroid, I still have joint problems...lots of aching. Other things that I noticed were fluid retention (not sure if that is soley because of the Hashi's), my skin was wierd...a bit thicker from what I remembered. Not the case now. I also had problems with appetite, I didn't have one yet I piled on the pounds. Weight gain was very very easy before I was treated and for a bit after until my hormone levels normalized for a period of time. What made your husband's doctor look at his thyroid functions? Was he diagnosed just incidentally through bloodwork? I am just curious....
If you have anymore questions, fire away! Sunny

[tracy512]

Thanks for the reply. He did have a sweet test and it came back negative. No genetic testing yet. These doctors here have dropped the ball on him and just say "well hes just a boy with alot of viruses". They dismiss it all and then send us on our way. We are meeting with our 3rd allergist who is also an immunologist.
I would like to hear more on how Hashis has affected your life. My husband has no sumptoms right now.

[Sunny602]

One thing I ask is just how thorough was his CF testing? Did they do the sweat test and that is it or did they run the entire genetic panel (Ambry)? I am wondering because I have seen people with borderline or even normal sweat tests ultimately test positive for CF via the ambry genetic panel (which tests for the entire 1542 genetic mutations...soon to be expanded further!). Alot of doctors will also only test for 30 or so mutations when they test for CF, so I would ask your son's doctor what test they ran on him. I am not saying that he has CF, it is just something to throw out there for completeness sake.
As far as Hashimoto's...yes, it is an autoimmune disorder that affects the thyroid. Believe it or not, I too have Hashi's...was diagnosed when I was about 26 I am now 36. I take Synthroid to replete my thyroid hormones. I am not sure about the hereditary issues, I am sure that there are families out there who have higher incidences of Hashi's than the general population. My family has thyroid problems in general, I am the only one with Hashi's though. I don't think that this would be a problem with your son though, but I am no doctor. If you mean autoimmune disorders in general, that is an interesting thought.
I hope that this helped...Sunny