Finally, a working dx for M's immune problems. — The Bump
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Finally, a working dx for M's immune problems.

We had her 9 month well visit today and I hated the questionnaire they gave me.  She scored fairly low in gross motor, ok in fine motor and semi low in social, etc.  

He said we may want to get a swallow study done (has anyone done this? are they awake?  she's had an upper GI and has an endoscopy scheduled) since she is still clueless on how to eat solids, 3 months after we've started.  Her weight was back up a little bit, but still down from where she was a few weeks ago.  She was 17.3  

He also said he had talked to her immunologist (I have shingles, so he had to call to see what to do about P & M) and that the immunologist told him her 'working diagnosis.'  

I assume this is based on her most recent set of labs and we are set to go back in 6 weeks from today for recheck since she got more shots today.  

Anyways, he didn't know that she hadn't mentioned it to met yet and I think he kind of regretted telling me but he said transient hypogammaglobulinemia of infancy.  

I'm pretty sure that's what it was anyway lol I didn't write it down.  So I guess that's not horrible and could explain why Peytons IGG is low and she's always sick too.  

Her endo is Dec 6th to rule out eosinophillic esophagitis

At this point I'd just be happy to get an immune dx, we go every 2 months or so and they usually just send us to another doctor (hematology/oncology, GI, etc) and have yet to really tell me exactly what they THINK is wrong with her.  They've told me what they didn't think it was.  

 

DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


Re: Finally, a working dx for M's immune problems.

  • DS2 had a swallow study done. They called it an oralpharyngeal mobility study (OPM for short and sorry if I spelled it wrong). It was a mostly easy test. He was around 20mos old when it was done so I'm not sure how they will do it with M.

    We brought a sippy of whatever we thought he would be most willing to drink, a couple of his favorite foods, and a couple more difficult foods for him to eat. We had to go to the radiology area and we met the SLP there.The SLP put the different foods and a little of the drink into different individual cups and put barium on it (it was this thick looking white paste type stuff).

    Because he cannot sit on his own, he sat on DH's lap while I fed him the food. This of course is not how he sits at home so his head position wasn't the greatest. Anyway, they would do a video X-ray of him swallowing each item. I will tell you that the liquid ended up being open cup vs sippy. They were checking to see if he aspirated on anything. The SLP had us watch the video afterward with her while she explained what she saw.

    Ideally he would have sat on his own or they would have held him or fed him but DS2 was not having any of that which I forewarned them would probably happen.  Since we had some food left, we went to an outdoor patio area since it was June and had him finish the non-barium "laced" food while we ate a snack from the vending machine. Outside of pitching a fit when the doctors/workers wanted to touch him, it was a fairly easy and non-traumatic test.

  • C had a swallow study also.  They had a funky foam chair (think nap nanny or carseat, but more upright).  They fed him solids and had him drink while they did a video x-ray.  One of the more low-key tests ever.
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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

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