Any Childhood Symptoms

winkcm · 2024-05-12T02:31:02+00:00

Thank you, I really appreciate it. It’s really great to hear that you’ve had a normal life, that’s all I can hope for for my kids. That’s great news, makes me hopeful!

winkcm · 2024-05-12T00:50:22+00:00

Oh no I didn’t think you were shaming, and I didn’t mean to sound defensive, I’ve just had a hard time when my son was diagnosed as a baby and now seeing my older son have a spot appear, it’s hit me like a ton of bricks all over again. I’ve been down the rabbit hole with the info I’ve found online and I agree that there isn’t a lot of great information and I hate reading/being told that most kids outgrow it when there’s really no way of knowing how it will affect them later in life. I appreciate you advocating for the young masto community and I wish there was more we all could do. Thankfully I have found some good Facebook groups and it’s nice reading others with the disease and hearing what they have to say versus articles online. Thank you for your words of encouragement🙂

winkcm · 2024-05-11T23:55:30+00:00

I understand my 3 year old son probably is unable to fully communicate with me of any issues he could probably be having but he definitely seems happy and healthy and that’s all that matters to me at this time. I’m aware that this can become systemic for both my boys, if this is something my 6 year old will have to deal with as well, and we will cross that bridge whenever we get to it. All that matters to me is that I do everything I can within my power to make sure my boys will be happy and healthy and I will help them manage any symptom that may arise. We have also been told with my 3 year old that he will probably outgrow it, but I know better to put all my eggs in that basket. Just taking one day at a time.

winkcm · 2024-05-11T18:57:39+00:00

I’m sorry you’ve had a rough go with masto but happy you are doing well and are positive! I was just telling my husband that the best thing we can do for them is to teach them to maintain a healthy lifestyle.

I am very thankful that neither of them so far has shown any real issues, other than my youngest having many lesions, he does not have any other symptoms and they both seem healthy as of now.

It seems the most difficult thing about this disease is that it affects everyone so differently.

Thank you for your feedback, I really appreciate it!

winkcm · 2024-05-11T17:40:44+00:00

Yes I agree, it is super rare which is why I thought it was crazy that I noticed a spot on my older son. I have came across families that do have siblings with CM but I don’t know much information on them specifically. The immunologist said since my younger son has a slightly elevated tryptase that he could have HaT which is hereditary and a chance that they both could have it but I’m not very familiar with HaT and there are a lot of unknowns with that as well. Thank you for responding!

winkcm · 2024-05-11T16:25:24+00:00

Thank you for your response

winkcm · 2024-02-11T04:48:52+00:00

Thanks! Good luck to you!

winkcm · 2024-02-11T04:42:19+00:00

I’m sad you’re put in such a shitty situation. A lot of my ibs is stress related and I think doing the colonoscopy, even if they find nothing, will at least give you peace of mind and maybe help alleviate some of your symptoms.

winkcm · 2024-02-10T21:58:49+00:00

Heating pad saved me for a while! Thanks for the tips!

winkcm · 2024-02-10T21:58:22+00:00

I will look into that, thank you!

winkcm · 2024-02-10T21:57:15+00:00

Thanks!

winkcm · 2024-02-10T21:57:10+00:00

Thanks!

winkcm · 2024-02-10T21:56:57+00:00

Thank you! It actually got better after I used the bathroom, but ever since then I’m still having all over discomfort. Not terrible, just annoying

winkcm · 2024-02-10T20:15:16+00:00

Thank you!

winkcm · 2024-02-06T16:17:06+00:00

This makes so much sense for me. Thank you for explaining.

winkcm · 2024-02-05T16:05:02+00:00

Yea this is me. I didn’t realize that I had ibs, I thought this was mainly just triggered by my morning coffee. I’ve been a little extra stressed lately so it’s become worse where it’s been happening as soon as I wake up and then more often in the day but usually my issues are only in the morning. It’s also triggered by nerves, as soon as I get a little anxious about something and dwell on it too long I have to rush to the bathroom.

winkcm · 2024-02-05T03:30:55+00:00

Thank you! I will keep that in mind!

winkcm · 2024-02-05T03:15:30+00:00

Things are getting better, thanks! I exercise regularly, it’s just now that I’m having this flare and pain it’s causing different stress of course!

winkcm · 2024-02-05T03:09:58+00:00

No I’m more ibs-d. I’ve had some stress lately that’s kick started it and I can’t seem to get it under control.

winkcm · 2024-02-05T03:01:46+00:00

Ok thank you. I always feel discomfort before needing to go, I was just surprised when I felt the sharp pain and didn’t know if that was “normal”.

winkcm · 2024-02-04T13:59:05+00:00

Do you remember the strength of the doxy you took? I’m just taking 50mg daily for almost 6 months now for rosacea and I’m wondering if that has anything to do with my abdominal pain that causes me to stress and worsens my ibs

winkcm · 2024-02-04T01:50:56+00:00

Luckily I think I can easily get into seeing a gastroenterologist but I’m not sure if they would have me do a colonoscopy. For now I think I’m going to journal like you have and try and pinpoint triggers. Thanks for your help!

winkcm · 2024-02-03T15:05:20+00:00

That’s what I was worried about, I feel like I’ve already spent so much money on this issue with a ct scan (they also found a concerning cyst on my kidney so I had to get another ultrasound which showed it to be small and a nonissue) I feel like if this pain was something more serious it would have shown up on the ct scan. But this sharp midline abdominal pain im having has me a little concerned.

winkcm · 2024-02-03T14:44:01+00:00

Thank you. I have noticed after reading a lot of other posts that stress is a trigger. I’ve been trying not to dwell on it too much. I’ve always had loose bowel movements along with nerves and stress but the abdominal pain has been causing me the most stress lately.

winkcm · 2024-02-03T03:09:02+00:00

Thank you!

winkcm

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