Hello. Thank you for keeping us updated. I will try to answer. Basically we just want to know the cause of the bronchiectasis is your child. So we should ask the doctor every possible test that we can do to know the cause of the bronchiectasis. CT-Scan (to exclude Kartagener Syndrome), Immunologic Testing (to exclude primary immuno deficiency, alpha-1 antitrypsin deficiency).

Then, after trying to know the cause, we also can ask what are the things that we can do to improve your child condition. Whar are the things that we can do manage this condition.

There was a discussion in my bronchiectasis forum about "Is it best to be diagnosed when young?" Here is the link.

http://www.bronchiectasis.info/forum/forum_posts.a...

In the forum there is a woman who have Kartagener Syndrome, PCD and bronchiectasis. She didn't get early diagnosis (no CT-Scan was available at that time). She was diagnosed on her twenties.

Hello! First of all, Happy Mother's Day!

Yes, I agree with Made- the most important thing is find the root of the problem, whether or not it is an immunoglobulin deficiency, PCD or other diagnosis. I would then ask details about the doctor's plan one month, three months, six months from now. If unable to answer these questions , request a referral to an expert who may be able to answer these questions.

Ask your doctor for warning signs of change in condition, assistance with mucous secretions and other preventive measures to lessen the possibility of recurrent infections.

I don't know whether or not they give probiotics to babies or not when they are on antibiotics. Hopefully, he can guide you or refer you to a pediatric nutritionist.

I wish you the best tomorrow at the appointment. Please keep us posted.

Hello! Below is an article on what to ask your doctor . Although it is geared to COPD only, the information is transferrable to most disorders. I hope it helps.

http://www.copdconnect.com/copd-articles/270-prepp...

I always wonder how long I had bronchiectasis before being seen by my new pulmo. I was receiving gamma gobulin ivs for months years ago as one of my IGG they have 4 subclass one was low so allowed me to get the ivs to build up my immunity and wipe out my high IGE. I tested last year all was ok with all the IGG IGA IGM but IGE is always high due to allergies. I get xolair shots every two weeks for allergy asthma. I was off a month a half due to insurance coverage and seeing my allergist to renew scripts. I started them again on Friday right in the middle of high pollen season.

Kandy,

Yes, the mixture of pollen and humidity can really take a toll on us.

Glad that you got your scripts renewed; it is an ongoing task of seeing Md, getting renewals..etc.

Feeling well is our goal!:)

We saw the pulmonologist yesterday and I am a little let down as far as getting my questions answered! As far as to what portion of her lungs are affected, she said every lobe of her lungs have been affected. As to the severity, she said she really couldn't say. I asked what type of ie: cylindrical, varicose or cystic.....she said it was definitely cystic. Still no answer to the cause as of yet. But, the tracheal brushing came back with normal cilia. We are still waiting on PCD genetic test to come back. As well as CFTR genetic sequencing and full pulmonary genetic sequencing to come back.

I asked how she planned on monitoring the progression and she said at Sailor's age, we basically could only monitor by CT scans. So she will be having CT scans every six months until she is able to do PFT's and sputum cultures. She is also be seen in the MPAC clinic (ENT, pulm, GI, immunologist, nutritionist, and RT) every three months.

As for her treatment and prevention she will continue Pulmicort( at higher dose)1mg neb twice a day, Albuterol 0.083% nebs 3 times a day and every 4 hours as needed, Dornase neb every day, shake vest twice a day and every 4 hours as needed, CPT percussion 3 times a day, Bethanechol 4 times a day, Nexium twice a day, miralax twice a day, zrytec everyday, she also added Hypertonic 3.5% solution everyday after her first albuterol of the day. At first sign of illness they will treat with antibiotics for 14 days. We have to keep her away from crowded areas and anyone who has any sign of illness. So basically "bubble baby". She is having another swallow study on Monday and then they are scheduling her 2nd surgical repair of her laryngeal cleft( we just found out it opened back up) and cut her lip tie and do another DLB with lavage at the same time. Then in August tonsils out and September will be her next CT-scan. She will also continue with Vital Stim therapy twice a week as well as feeding and speech therapy twice a week.

We are just worried about her and hate that we can't fix this for her. Thank you for all your support and allowing me to went!

Vent away. I am sure this is the most difficult thing, having a sick child and not being able to fix it. The best you can do for Sailor is be her advocate and educate yourself to the best of your abilities, to be able to ask the right questions. I am sure you are doing everything you can. I hope all goes well with her swallow study, tonsillectomy, and her further tests. Stay strong and remember to take care of you too! Keep us posted. I continue to search for more resources that may help you along this difficult journey.

Hello! Yes, you need to vent, get your frustrations off your chest. It is so frustrating not to be able to control your child's illness, the loss of power, control is so difficult to accept.

However, you did get many answers to your questions, you have better insight into the plan for the next 3,6,12 months.

You now have a plan in place to keep her as healthy as possible . Being outdoors will be good for the both of you; not in tight places where infections spread easily. Although, it feels/ sounds like you must live in a bubble- you do not , esp at this time of year .

Yes, it is frustrating when people do not understand an invisible disease for many reasons. Just accept their compliments for now. Only close friends and family will truly have insight; over time, you may just let go of what others think

As Gretchen mentioned - attempt to get a break from a family member or friend to get some self care so you have the strength to do everything you need to accomplish.

I wish we know of another Mom who would truly understand your challenges or a pediatric pulmonary blog. Until we find that other mom or online support for you- We are here for you to vent to and or assist you with questions which we may be able to ask.

Hello! I am so glad that you were able to get more information.