my almost 3 year old has symptoms that i think are suspicious for mastocytosis or MCAS, but his immune doctors don't think so.

over the last week he has been waking at night and early mornings (much earlier than normal) crying (not normal) about head pain (not normal). he's been off as well, but the headache iteslf has been manageable with morning tylenol, and only appears at point of waking and shortly after.

he has immune deficiency so there is some concern that there could be a spine/brain infection so we'll follow up - but his immune doctors said he didn't need to go into emerg today when i checked in with them.

we'll follow up with doctors this week if he has another day of this, but i was wondering if anyone else has kids with this symptom? he has been off food a bit for the last few days, more impulsive and hard to manage (not so irritable as challenging or oppositional), and i think coming down with another URI as he's been sneezing and snotty.

Hi, thanks for your answers!

Our GP saw us on Monday, said his ears looked like an infection was possibly starting, prescribed antibiotics (Amoxicillin) as we know he has low IgG immunoglobulin levels, and he's not making protective responses to some vaccines. The ear infection could explain the headaches except that he was waking with the headaches before we saw the Immunologist and she looked at his ears and said they were clear, as was his throat etc.

Monday he started antibiotics, and for two days we used his emergency puffer (ventolin), as well as doubling his regular steroid puffers. We were on breathing watch for two days as his asthma seems hypersensitive to URI, and his snotty nose developed into a cough and increase work of breathing, along with intercostal retractions and inpulling at his neck. Fortunately ventolin controlled it this time so we got through without another trip to Emerg. He's happy to be back at preschool today so I'm pretty happy about this recovery! Still has the nasty cough, but we seem to have figured out how to manage it better this run around.

I remembered that he has had a several day long flushing reaction to Atropine eye drops that the opthamologist used to dilate his eyes for an eye check. I mentioned this to the Immunologist who saw him at Sick Kids. She said they are very confident he doesn't fit the presentation for Mast Cell Disease and they didn't want to test tryptase.

We have follow up bloodwork to do in January, so I am going to ask our local Allergist (who already told me he doesn't know anything about Mast Cell Diseases, and suggested talking to Sick Kids about it), or our GP to add in a req for Tryptase and I will pay the $80 for it! Note that Sick Kids suggested I talk to our Allergist about the Mast Cell concerns.

The kid is clearly atopic which we know, with diagnosed IgE allergic anaphylactic reactions to various foods, but he also has had anaphylactic-type responses to foods he is not allergic to and it doesn't make sense that there would have been cross-contamination in those circumstances. He also has been diagnosed with Chronic Urticaria, had GI issues from time to time, muscle/leg pain from time to time, etc.

I just did my tryptase test yesterday, so should get results next week. Hubby will see Dr. Sibbald as he has what seems like TMEP with systemic involvement, but not until March.

I just want to make sure we rule this out before they start doing IVIG on my son, as we know that IVIG can have nasty impacts on folks with mast cell concerns.

Lisa, I don't think we will see Neurology or another Pediatrician at this point. We were "fired" by one ped becuase we did't think she was assessing properly, and we were on track becuase many of the things we now know she argued we were wrong about and wouldn't follow up on. Our 2nd ped told me recently that he was only a consulting ped, and will not be helping with anything other than the initial reason we were referred (developmental). I am done with Pediatricians. The only way I've ever had useful help with my son is by going to specialists after doing the research and finding out what issues should be investigated. We've seen 2 Neurologists already. The last one told us our son has a smaller than normal brain with mild signal abnormalities that he thought were probably due to being a preemie, and that he would not be following him. The only reason he would see him again through another referral is if we start to see degenerative issues.

The only reason we have any of the medical supports in place are because I push them for it. As with all of his health issues, the Immunology findings only came about becuase I insisted on a 2nd opinion from the Allergy Clinic at Sick Kids, when I didn't think our local Allergist was explaining all of our concerns well enough. Becuase of that they tested him for immune issues, which McMaster had said were resolved when we saw their specialists. And now we are learning that he probably has a Primary Immune Deficiency.

If I sound bitter I am. It's been only with extreme persistance and willingness to be viewed as a totally neurotic wingnut mom that I have been able to get the supports in place that we have.

I'm very sure there's more at work here and mast cell to me seems like such a fit. But always willing to learn more and accept that I'm totally off base as well. I just need adequate explanations!

Sorry for the vent.

Thanks for the feedback!