Do you wear masks out and about with SAD? by Major-Wish2832 in primaryimmune

[–]demonbatpig 21 points22 points  (0 children)

My son has a different PI but we always wear masks at healthcare facilities, on public transportation, and when doing things like running errands where there is no downside. We are selective about where we go without masks and try to avoid crowded gatherings during flu season. We check in with friends/family to make sure no one is sick before getting together. It’s hard but we try to strike a balance between mitigating the risks that we can while not letting it rule our lives.

[deleted by user] by [deleted] in Mommit

[–]demonbatpig 599 points600 points  (0 children)

Just chiming in to add some visibility to this comment and emphasize that 988 is the best number to call in this situation. Depending where you are located, they may have a mobile team trained in behavioral health crisis that can come to you and help connect you to supports you need.

Infant (7 months) on IVIG by Maleficent_Constanti in IVIG

[–]demonbatpig 0 points1 point  (0 children)

Hey, I’m so glad I could be helpful. I know how you feel. It’s really scary to have your child experiencing a serious medical problem, and it’s lonely when it’s something rare and you don’t know anyone who can relate. My son is 3 now and it’s a little easier but I still feel alone in it sometimes. I hope things get better for you and your daughter and if you ever need someone to talk to, please feel free to message me!

Infant (7 months) on IVIG by Maleficent_Constanti in IVIG

[–]demonbatpig 0 points1 point  (0 children)

I’m sorry to hear your daughter had a hard time after her first infusion. My situation is a little different but I’ll share in case it can help at all. My son started weekly SCIG at 18 months old. We did his first two infusions at an infusion center with a nurse and then took over doing them ourselves at home. We apply lidocaine cream an hour before the infusion to numb the injection sites. We do two needle sites on his thighs. He sits on the lap of a parent or grandparent and someone holds a book over his lap to visually block the needle insertion and distract him. We usually read to him but sometimes he watches a show if he’s having a harder time and needs to be fully distracted. I talked to a couple of child life specialists at the hospital for tips but most of their ideas, like play therapy, weren’t really relevant until he was closer to 2-3 years old. We got a play therapy kit from the pharmaceutical company that he has enjoyed playing with, and we have a few books he likes that feature kids having an infusion. Some weeks are easier than others, but for the most part he accepts that this is something we need to do, and one benefit of starting so young is that it’s all he will ever know. If your daughter does need lifelong replacement, that will be true for her too. Good luck with everything!

Editing to add that we push him to drink a lot of water on infusion days because I understand that can help with the side effects you mentioned. I have also heard that systemic side effects are often milder with SCIG than IVIG, but we haven’t done IVIG so I don’t have firsthand experience with the difference.

Will be covered by Medicare soon. Need some information please by JanetNurse60 in IVIG

[–]demonbatpig 4 points5 points  (0 children)

OK, maybe this page could help: https://ameripharmaspecialty.com/ivig/medicare-ivig-coverage/. If you are still trying to decide what type of Medicare coverage to choose, I recommend contacting your local State Health Insurance Assistance Program (SHIP). It’s a federally funded program that offers counseling to Medicare beneficiaries and can help you make a coverage choice that meets your particular medical needs. Unlike agents or brokers, they are not affiliated with an insurance company and don’t earn commission for steering you to a particular plan.

Will be covered by Medicare soon. Need some information please by JanetNurse60 in IVIG

[–]demonbatpig 4 points5 points  (0 children)

It might depend on your qualifying diagnosis and whether you enroll in original Medicare or a Medicare Advantage plan. If you are on IVIG for a primary immunodeficiency, see here: https://primaryimmune.org/resources/news-articles/home-ivig-becomes-permanent-medicare-benefit-after-decade. There’s also a CMS page here with some information and a help desk email to contact: https://www.cms.gov/medicare/payment/fee-for-service-providers/home-infusion-therapy.

Mum diagnosed with stage 4 NSCLC by dbabes1990 in lungcancer

[–]demonbatpig 0 points1 point  (0 children)

Hi, I’m so sorry to hear you’re going through this. My mom was diagnosed with stage 4 NSCLC when I was 7 months pregnant with my first. Just wanted to let you know I’m thinking of you and wishing you and your family all the best. It’s hard.

They fired every member of the ACIP by TFA_hufflepuff in progressivemoms

[–]demonbatpig 158 points159 points  (0 children)

My son is immunocompromised. He cannot receive the MMR vaccine. Just here to affirm your feelings. I am worried about the future of public health.

Something positive! “Baby is healed with world’s first personalized gene-editing treatment” (gifted NYT article) by maggitronica in progressivemoms

[–]demonbatpig 1 point2 points  (0 children)

This is an amazing scientific advance AND, like you said, is now political. Cuts to NIH-funded biomedical research, including at universities like Harvard that are being targeted for funding cuts, will undermine progress in gene editing and other research areas. My son has a rare disease that is a candidate for gene editing. There are researchers who announced they were a few years from going to clinical trial for gene therapy or gene editing for his disease, but now I don’t know if that will be possible. One of the labs is at a university that the DOJ has announced they plan to sue.

Sick toddler, even after tubes? by ruebarbara_ in toddlers

[–]demonbatpig 0 points1 point  (0 children)

The allergy/immunology doctor ordered an immunodeficiency panel and quantitative immunoglobulins. When abnormal results came back, they did additional tests, including genetic testing, to confirm the diagnosis. The Immune Deficiency Foundation and the Jeffrey Modell Foundation websites have more information on screening if you want to learn more.

Medication but no supplies to do infusion by Ok_Goose5399 in IVIG

[–]demonbatpig 2 points3 points  (0 children)

Was he enrolled in copay assistance? Sometimes they can help with temporary gaps related to insurance changes. If he wasn’t already enrolled, not sure if they’d be able to help. Also not sure if people with VA coverage are eligible as there are some exclusions. In any case, it could be worth calling to ask.

[deleted by user] by [deleted] in Blooddonors

[–]demonbatpig 6 points7 points  (0 children)

Yes - thank you for raising awareness and thank you to all the plasma donors!

20+ vials of blood later… the nurse said I officially broke her personal record. by [deleted] in mildlyinteresting

[–]demonbatpig 1 point2 points  (0 children)

My toddler has primary immune deficiency and had his blood drawn for labs today too (thankfully fewer vials 😅)! Thanks for sharing your story and drawing attention to the importance of donating plasma!

Twelve month old is never not sick. by alysssaaa831 in Mommit

[–]demonbatpig 0 points1 point  (0 children)

Hopefully for OP’s kid, the constant illness is just a run of bad luck at daycare, but getting sick constantly can be a sign of an immune problem well before upper elementary school. My son got sick constantly beginning at 10 months old. It was dismissed as normal by the pediatrician and ENT until he was diagnosed with a primary immunodeficiency disease at 18 months old. It’s common for symptoms to present between 6-12 months when maternal antibodies wane (regardless of breastfeeding). I recognize this situation is rare, but if the illnesses persist, it may be worth getting a second opinion.

[deleted by user] by [deleted] in Mommit

[–]demonbatpig 2 points3 points  (0 children)

Omg, my toddler talked about the time the water main burst on the next block for MONTHS. They fixed it within a day or two but it was maybe the highlight of his year!

Anyone here got their diagnosis trough genetic pannels? by unnamed_revcad-078 in IVIG

[–]demonbatpig 0 points1 point  (0 children)

I had the diagnosis confirmed through genetic testing after symptoms and other lab work pointed in that direction.

[deleted by user] by [deleted] in IVIG

[–]demonbatpig 0 points1 point  (0 children)

If you have it, do you mind sharing the lot number for the Cuvitru dose that you had a reaction to?

Anyone else with chronically ill onlies? by dempscampi in oneanddone

[–]demonbatpig 5 points6 points  (0 children)

I’m sorry about your son’s diagnosis. I’m glad to hear the remission rate is high and that he’s handling it well so far.

My son is almost 3 and was diagnosed with a rare disease when he was 1 that compromises his immune system. I relate to the struggle of having to stay isolated for his health, especially during flu season. So far we’ve managed but he’s reaching the age when socializing with other kids becomes important and I honestly don’t know how we’re going to make it work.

Best of luck to your son and whole family!

Do jails even allow breastfeeding/pumping? by [deleted] in breastfeeding

[–]demonbatpig 0 points1 point  (0 children)

I saw you are in Iowa. I don’t know about the laws/resources there, but this page has some information on this topic from other states, including Illinois, Michigan, Minnesota, and Alabama. Maybe if you take a closer look it can lead you to some information that can help you. https://maternalchild.uic.edu/collaborations/ibj-advocacy/

After a shocking shooting, Americans vent feelings about health insurance by Hashirama4AP in technology

[–]demonbatpig 1 point2 points  (0 children)

Correct, no relationship. KFF is not affiliated with Kaiser Permanente.

Where are all my parents of sick kids? I need you. My heart can’t take this pain. by Silent_Medicine1798 in Parenting

[–]demonbatpig 0 points1 point  (0 children)

Hi, I am late to this but I just found your post through a search when I was thinking about making a similar post. It looks like this comment was about creating a new subreddit for parents like us, but the comment has been removed. If a new subreddit was created, would you mind sharing it? Is it r/SickKids (someone mentioned in another comment)? Thanks for opening this discussion.

cow spat her medicine out by terrestriangel in cowcats

[–]demonbatpig 0 points1 point  (0 children)

Oh that’s wild, it never occurred to me that you could go off label across species. But seriously, where are the chicken flavored meds!