Hellobee Boards

Thanks for reviving this!

Ellie, 11, has autism and is doing amazingly. She's back in public school (without a para!!) and has been having a great year. We still are working on anxiety and strong feelings, but she has done such a wonderful job of being aware of what she needs and what works for her that it's gotten to be mostly easy.

Lorelei, 6, just got diagnosed with PANDAS. It's rocked our world quite a bit. The separation anxiety and sleep disruption have been pretty extreme, and of course she will forever want mom only, which can be a bit hard for all of us. I'm nervous about the expense. We can't seem to get through a year without maxing our deductible.

@Mrs. Tiger: we miss you guys!!
@jhd: so good you will have so much support when he gets here. I hope it goes as smoothly as possible.

Hi! Just wanted to chime in about the asthma. My guy was diagnosed with reactive airway disease (precursor to asthma - they won’t diagnose it officially as asthma until he’s older) at 6 months old and has had nebulizer treatments every day since then. He’s almost 29 months. Sometimes he has to have up to 6/day! He’s doing a lot better now but watching your kid struggle to breathe is tough. But he doesn’t mind his “nebbys” so that makes it easier. I hope D is doing ok with it!

I don't usually join these (and feel free to show me the door), but both my kids suffer from asthma and have since they were little (two hospitalizations so far for both of them), so I do have a lot of experience with it if anyone has any questions. Both kids also have food allergies, but that's not really a health concern - just something we have to manage.

Specifically for the asthma, my oldest (5) is on Advair. My youngest (3) is on Qvar (soon to be Flovent) and Singulair. They both have albuterol inhalers, which they usually have to use when sick, and they both have a prescription of Prednisolone on hand when the albuterol isn't enough. We have asthma action plans for the kids at home and school so everyone knows how to manage their asthma.

@Mrs. Tiger: Thanks!

My kids use inhalers because when Xander first needed albuterol (around 15 months maybe?), he would fight against the mask for the nebulizer kicking and screaming! When we did it in the pediatrician's office, it would take two of us to hold him and give him the neb treatment. I knew there was no way I'd be able to do that on my own at home, especially since neb treatments are anywhere from 5-10 minutes! It was just pure torture for him. So we asked to be given an inhaler (with spacer) instead. 2-4 puffs of the inhaler deliver the same amount of medicine as the nebulizer. It's not AS good because the steam from the neb is really good at helping open up the airways, but it was much more doable for us (and a lot less time consuming)! Plus inhalers are much easier to transport places than the nebulizer. And by the time Logan needed medication for his asthma, we were all used to using the inhalers, so we opted to do the same for him.

Xander currently gets 2 puffs of Advair (control inhaler) twice a day. Once he turned 4, he was eligible for Advair, which has really been effective for him! He hasn't needed Prednisolone since he's been on Advair.

Logan gets 2 puffs of Qvar (control inhaler) twice a day as well as a Singulair tablet once a day. Qvar on its own wasn't enough to control his asthma and he's too young for Advair, so we added Singulair to his management. Since he's been on both, we haven't needed Prednisolone. I'm really hoping we've finally found the right combinations for both kids to keep them out of the hospital and off steroids!

@Ms. RV: Just wanted to say hello. My little guy was born with a congenital heart defect - a large VSD hole by his aortic valve. We didn't find out until after he was born, and he had his repair done at 3 months. Let me know if you have questions or concerns about what's coming up for your guys. The waiting is hard!

My little guy is doing well now. He's been working through some development issues, mostly speech and sensory therapies. We're in a sort of wait and see mode on some other developmental issues that may or may not be related to his heart issues.

Hi everyone! It is so nice to hear from everybody and how their little ones are doing! The blog and board posts about kids (and their parents and families) dealing with medical issues have been so helpful for me to read about others going through similar challenges. And I love seeing the updates from people from way back!

My son (4 years old) deals with chronic leg pain and limited mobility due to an orthopedic condition. It started causing him pain at about 1 years old, when he was trying to learn how to walk, and it took three years to diagnose. The three years of trying out different specialists and appointments and extensive testing was exhausting for all of us. Now we have a couple of regular specialists we’ll see once or twice a year, aqua therapy and physical therapy. He also takes a few different medicines and supplements every day. We are hopeful that knowing more about what is causing the pain will help to reduce it. It is still hard for him to walk any distance so we rely on the stroller a lot, but he’s learning how to ride a scooter to get around at other times.

@Mrs. Tiger: Yeah, I do think nebs are more effective, which is why that's all our pediatrician uses in office! If D doesn't mind the neb treatments, definitely stick with them for now! And I'm sorry for the diagnosis. Asthma can be pretty scary.

@Mrs. Tiger: The plan now is for me to basically live at the hospital until I am well enough to drive (they have beds in the ICU units for parents) and OH to hold down the fort with DD. Once I am well enough to drive I will come home and commute to the hospital every day. It is about an hour drive to the hospital from home.

@Adira: have you started Flovent yet? We just switched from qvar this week and one of my kids seems to HATE it and previously had no problem with qvar. I’m not sure if it smells or tastes different or what but what was a normal easy task has now become a battle. I have 3yo twins who were very premature with chronic lung disease so we are very familiar with the nebulizer as well

@luckygirl: wow 3 years is a long time to wait for a diagnosis. I hope as you said that knowing more about what’s going on can help you find the best treatment options. And that’s exciting about the scooter to increase his independence. They are all about the independence at 4! Ours is constantly telling us he is going to do things all by himself!!

@My Only Sunshine: Will he have a Cochlear BAHA on a softband? My LO has Cochlear brand cochlear implants so I have some familiarity with the Cochlear accessories and the company itself. We’ve been very pleased. I don’t know much about BAHAs but I’ve been down the path with traditional hearing aids and the struggle to keep them on small kids!

@jhd: thinking about you today!

DD is 3. She has orthopedic issues and is being cared for at Shriners. She broke her leg last summer so that was awful but did not impact her existing problems. She will need 2 surgeries around age 11. We go in 1x a year now. She has an orthopedic insert and her disabilities have not slowed her down much.

Her excema has been horrible so we just had the finger prick done for food sensitivities and will do the blood draw for food allergies soon. DH is sensitive to gluten.

Hi! I normally don't join in these things, but here I am.

I don't have conclusive results yet, but all 3 of my kids are being tested for Stickler Syndrome. I have it (and had an idea that I had it), so it wasn't a huge shock as it's a dominant gene (50% chance with each pregnancy). So, there's a pretty good chance at least one of my kids has it. My daughter has had some weird complications, so we've had a rough road for the first year of her life. I have a brand new mutation of it, so that's also been interesting.

@jhd: Feel free to reach out! I was shocked to see someone else mention Stickler syndrome. ETA - just saw that you had your baby - congrats!!!!!!

@jhd: good luck with surgery and recovery today baby g!

Hey all! I thought I'd chime in. DS2 has quadriplegic cerebral palsy, as well as a vision impairment. Thankfully, though the CP was much more severe when he was diagnosed, he has made miraculous progress and can walk independently (though he falls a lot and we will be following up with an orthopedist since his tibias have become turned as a result of the CP). He is now able to eat and drink fairly normally, though he is just barely able to speak a few words. He will be 3 in May.

My DS had a stroke last year at 18 months as a result of a complication from endocarditis. He had open heart surgery to repair his mitral valve and has healed so well he has been discharged from cardio for the next 2 years (yay). He came home on an NG tube but we were able to wean him off after a few months and he is back to eating table food.

He has left side hemiplegia (weakness) and is walking/running with the help of an AFO. There is awareness and movement of his left arm but not much in his hand. He is in PT, OT and aquatic therapy and we will do a second round of constraint therapy (CIMT) in June to try and increase functional use of his left arm/hand.

Unfortunately the piece of skull they removed and replaced due to swelling has not healed well and is deteriorating so he is scheduled for a cranioplasty on April 11th to replace the bone flap with a 3D printed piece. Should only be in the hospital for 2 days and this is expected to be hist last surgery but will be a tough recovery for an active 2.5 year old.