BB, continuing to pray for your granddaughter. Praying the cause is found soon. 🙏🏻

Prayers ongoing that you get a good answer soon bbstx. Lots of wisdom being shared here.

Most of the time a dietitian is part of the treatment team but families are not often aware. Has your family been able to consult with the dietitician?

What part of the country or state is she in?

MDLN, she is in the southeast.

happy2b, the dietician came in the other day while I was with her. He seemed to be a very nice guy, but was very much not part of the team. He left me a chart to record her intake. He was clueless when I asked about anything except recording food and amounts consumed. He was an RD, not a tech.

roarah, she has gotten some steroids, but I don’t know the dosage strength or the length of the course. The only reason I know she was getting them was because I’ve learned how to get her to swallow a pill - nothing magical. Bury it in applesauce and tell her to swallow, don’t chew.

A friend who is a kindergarten teacher had a student with PANDAS, so I mentioned it to DD. Apparently, she has been checked for PANDAS.

No one has answered me on HSP yet.

It is frustrating all around. As a grandparent, I can only suggest things to DD and DSIL. They are stressed enough, so I have to be somewhat circumspect about even making suggestions.

Again, I appreciate all of the support and kind thoughts y’all are sending our way.

I taught my daughter at 4 to swallow pills, the liquid made her gag too much, by starting with tictacs and moving to M&Ms. The applesauce trick is brilliant. I am sorry they need to use a feeding tube, how traumatic this must be for the whole family.

DD and DSIL are not happy about the feeding tube. I am not happy about her being overfed to the point of vomiting. That totally defeats the purpose for the tube!

I understand perfectly about being the supportive grandma. Hang in there.

Happy2b, I’m the queen of laundry. The only dirty clothes in this house right now are being worn by someone. When you can’t find any other way to help, throw in a load of laundry!

I’m so sorry you and your family are going through this. My trouble-shooting thoughts re the tube feedings- having an NG tube is really unpleasant, poor thing. Since your DGD is in a pediatric hospital, I imagine they are paying close attention to the vomiting with feedings. Perhaps she is being fed too fast, rather than too much, and bolus feeding isn’t being tolerated; instead feedings can be given via a pump, set to deliver her feedings slowly over a longer period of time, similar to an IV pump. Her formula should be room temperature, and it’s best that she not be lying flat in bed-the head of her bed should be raised about 45 degrees. Perhaps her gastric emptying is slow..? Lying on her left side with her head of bed raised might help- gravity! She might have an intolerance to the formula itself- there are always other choices. Also, gagging can displace the tube, and tube displacement can cause vomiting, too, and risk of aspiration. I hope she soon won’t need the tube at all.
I’m sorry the dietitian wasn’t more helpful; that seems odd, particularly in a pediatric facility.

I hope she can get more dietary support -- both nutritional and practical for her and the family. I know how hard it is to watch a loved one not eat. Last summer I sent Blue Bell Ice Cream gift cards to my cousin because her radiation had burned her tongue and she wasn't eating. She lost 60 lbs last I heard - and at some point you just want to get as many calories in small bites as you can.

Strep can be a weird thing. There are more varieties than the typical throat one, and even with that one, it is so readily treated with antibiotics now that we don't usually hear of the potential impacts beyond fever and sore throat. My son had a strep variety that caused a rash that was like hives, sometimes intensely itchy and burning and sometimes not. It tended to come out worst when he got hot but it would come and go. We couldn't get him an appointment before it would fade. This went on for weeks and into months. Once, in frustration, we took him to a stand alone ER so he could be seen by a doctor while it as active -- in a weekend. His rash was red and angry, DS was very itchy and miserable and begging me to do finds something we could do. The doctor gave him a steroid injection, told us to give him benadryl and follow up with his dr. HIs pediatrician said the steroid shot meant we had to wait 2 weeks to do anything further, but suggested we make an appointment with an allergist for testing after the 2 weeks.

We met with the allergist and before testing, he did a full battery of bloodwork to rule out things that could present like allergies. He called us back and asked if our son had been exposed to or had strep. Our son hadn't been sick but had strep antibodies. The allergist sent us back to the pediatrician for another strep test. Throat swabs were negative. His excellent pediatrician was mortified that she has missed something and did a consult with the head of infectious diseases at Texas Children's downtown. He was the one who identified the strain that causes the skin rash but no sore throat and not the complications of the untreated sore throat strain. A blood test confirmed it and a round of antibiotics easily ended months of intermittent agony and frustration. We think we know strep, but it's really just one strain we are most familiar with. I hope it's something mystifying but that simple in the end. And that the answers come soon.

I have no advice or words of wisdom, I just wanted to add that my heart aches for your sweet grandbaby and you and your family. Here's hoping for a quick solution. I'm sending virtual patience and peace in the meantime.

((bbstx)) I understand the laundry distraction - I'm sure we all do similar mindless tasks that feel somewhat productive when we have no other way to change the circumstances. I hope there is a nugget of useful information from all the wonderful people here who are chiming in. Wishing for answers soon and effective treatment.

Just sending my continued thoughts for quick healing, patience, strength and wisdom to all who are treating her that they may find an answer soon.

The last time DGD vomited up the NG tube, they did not reinsert it hoping that she could/would eat enough to maintain her weight and gain some. I think she maintained but did not gain. The NG tube is being re-inserted this morning.

@chinacatpeekin thanks for all of the things that might help. I’ll pass them along to DD. The NG tube is being used for supplemental feeding. Her physicians want to see how many calories she can consume on her own in a day before they use the tube. Therefore, her formula feedings (Pediasure) are done in the evening. DD tries to insure that DGD’s head is raised.

One of her teacher’s was visiting several days ago when she vomited. The teacher suggested that perhaps it was the formula that she was not tolerating. I don’t know if DD and DSIL ever addressed that issue since the decision was made to leave the NG tube out to see how it would go. I’ll remind them to address it.

I asked DD if there were a more calorie dense formula than Pediasure so that they could cut back on volume. She said she had been told there was not.

DSIL thinks she needs a GI work-up. He is convinced that part of the eating problem is GI related. They get a new GI doc on rotation today (it’s a teaching hospital).

For you nurses on here, please help me advise DD. The night nurse (hereafter NN) is a horror show. She is loud and unaware, it seems. In the last 2 months, DGD has been in the hospital for a total of 4 weeks. DD has seens lots of nurses in that time and this one is her least favorite. NN comes in at 4 a.m. to take vitals. Most of the nurses are able to come into the room while DGD is sleeping, do what they have to do, and leave without waking DGD. DD says NN flings the door open and always has something to say in a loud voice.

This morning was the last straw. DGD did not know the NG tube was going to be re-inserted this morning. At 4 a.m. DGD was awakened because the NN had stomped in so loudly. NN asked if she wanted something to eat. DD tried to subtly indicate that DGD could not eat. NN was so dense and kept on about giving DGD something to eat, that DD finally had to just tell her why. Did this woman not have a chart or orders or whatever is used to communicate indicating that DGD could have nothing NPO after midnight? How do you handle this? I know how I would handle it…ask to see her supervisor. But there may be a better way. We certainly don’t want a PO’d nurse caring for DGD.

I've been reading this thread, but didn't have anything to offer other than hopeful thoughts, so haven't added anything, until now.

The NN issue... I'm so sorry this predicament is on top of the immense stress you and your family are already feeling. Is the 4 a.m. check-in absolutely necessary? I'm not in the medical field, but I'm wondering if perhaps it could be postponed or skipped unless your DD determines it's needed. Of course, I may be advising totally against protocols here.

At the very least, perhaps taking NN aside, acknowledging understanding that she must have so many patients and stress to deal with on her night shifts, but gently asking her if she could perhaps enter the room more quietly. This may make her more self-aware of her actions.

I believe the 4 a.m. check is necessary. It is done every morning. Good idea to take her aside. I just this instant remembered something. My cousin (albeit 1st cousin once removed - we aren’t close) is the nursing director for the ICU. Perhaps she could give me some tips. I need to get her contact info from her dad.

I don’t blame your DD for being upset about this. Sleep and rest (for mom as well as patient) are important. If your DGD has had stable vital signs, and it sounds like she does from your reports, I’d suggest mom speak to her attending physician to see if it’s possible to write an order to skip the 4AM vital signs at this point. A night nurse can check on her and count her respirations without touching or awakening her. (I was a pediatric night nurse, long ago!). There may be hospital protocols that make this impossible, but I think it’s reasonable to request it. I don’t think I’d discuss it with the NN in question, but might ask to speak to the charge nurse today. And yes, NN should know when a patient is NPO! DD should express concern that NN tried to feed her daughter, despite NPO orders. I’m glad DGD is getting a GI consult. And getting in touch with your cousin is an excellent idea! Is she at the same hospital?

I’ll add that a brand of formula other than Pedisure might be better tolerated by your DGD-it seems reasonable and easy to try. I expect the GI doc will make recommendations to solve this issue.

You & your family's heads must be spinning!! Not knowing, not having answers, the eating issues...everything! So many thoughts & prayers for wisdom for you all & those who care for her. I so understand you doing lots of laundry....I do the same & vacuum!!

Regarding NN, I'm thinking it might be NCNA and not a nurse. I have spent more hours in a hospital with my mother this past year than I did when I was working! We rarely saw an RN unless we specifically sought one out.

I agree about talking with the Charge RN and pointing out the issue. It may just be an awareness thing for this person. I worked with some nurses that were so task oriented they couldn't see that it was unnecessary to wake the patient at 0530 to do their once per shift assessment. This person may know vitals need to be done at 0400, so here i am, feet stomping, loud voice and all.

I also agree with asking the doctors if vitals can only be done while awake. Tell them DD will call out when DGD wakes in the middle of the night.....and then do that. Many times patients will agree to that but never call out.'

My heart so goes out to you all.

I would simply not tolerate the situation with NN (I hear that in my head as nurse Nancy). If I were the mom, I would try a talk with her outside the room (and she could have asked NN to step outside at 4 am). I would let her know that when dealing with my child's life and well-being, I will only ask once, so she better get what I am saying and ask any questions if I am not being clear. I would define my expectations and the hours for those expectations. If that did not produce quiet overnight checks and respect for the daughter's needs, I would talk to the nurse in charge, her doctor and hospital administrators and insist NN not be assigned to my child overnight without fail and at all if possible. There are things that have to happen at inconvenient hours, but waking a child to talk about eating breakfast at 4 am is not one of them. Sleep is difficult to get in the hospital but very important to healing. I was there for 10 days once, so my tiger mom/momma bear might come out a bit more than average on this issue.

It would be worth looking at the Pediasure she is getting to see if there are ingredients outside her normal diet (soy? tuna oil?). And if necessary, I'd talk to her doctor or the nutritionist about giving her a multivitamin and maybe try ice cream or frozen yogurt or even junk food just to give her the calories she needs while this get works out. I'm sure there is some of that happening, but if she doesn't tolerate the Pediasure, they need to stop prescribing it and try something else. Even if it's just ice cream for a while.

DD and DSIL are beside themselves. The GI consult was a non-event. The new GI doc wants to do nothing except give her a probiotic until all of the test results are back…which may be 2 weeks more.

Unbeknownst to me, apparently more than one brand of supplement has been tried.

DD and DSIL are working with their regular pede to set up a virtual consultation with a nationally known teaching hospital. Regretfully, it isn’t CHoP which was my first choice.

happy2b, I love ”forum aunties.” That pretty much captures this group.

Have they (care providers) considered placing a feeding tube percutaneously? We used to call them PEGs...but it's been a while for me. This is a very narrow tube that goes through the skin directly into the stomach. While it is slightly more invasive, it certainly makes eating a lot easier. (No tube to swallow around - or to cause a nasty sore throat). Often patients can eat as they please, and supplements can be administered as needed.

Praying for all of you that answers are found, and that DGD finds comfort and thrives!

Is it out of the question for your DGD to be discharged and wait for the test results at home?

Can I ask a dumb question? Does your granddaughter talk about food? Is she simply not hungry or do you get the feeling that she might be consciously restricting her intake. It seems implausible that a six year old would consciously deny herself food, but you never know.(Sorry if this question comes across as insensitive – – I don’t know how else to ask it, since there is or seems to be a credible link between strep throat and eating disorders.)

((bbstx))

My heart aches for your sweet GD as well as your kids. You all must be exhausted.

Prayers for those who are tending to her that answers are found soon.

Jojo, I’m not offended. We’ve wondered the same. But neither DD, nor DSIL, nor the medical team thinks that is happening.

happy2b, that is being discussed. Going home with a feeding tube is the issue. It can be done and it might be done, but they are still running tests. Or maybe I should say, they’ve re-started running tests.

daisy, I can’t get anyone interested in checking her for HSP. The attending won’t do it because she didn’t have a rash. DD looked at the symptoms and said it doesn’t fit. I told her about your daughter. If the test is non-invasive, why not do it???

No virtual consult. The next step up wants to see her in person. They are going in 10 days.

Ugh….I’m so sorry. Sending more love your way!

In person is probably best for a complex case. I'm sure they have reviewed the records -- that aren't providing satisfactory answers, and want to take a fresh evaluation to see what might have been missed and not be in the record. Could be something missing or an initial bias in the evaluation that is skewing things. It sounds like the right approach at this point even if the delay adds to the frustration. Hang in there!

Dr. Lisa Sanders is the dr behind the New York Time magazine column 'Diagnosis" Evidently, she also has a tv series. She teaches at Yale School of Medicine. She encourages phone calls about medical mysteries.

Meet Netflix's “Diagnosis” Dr. Lisa Sanders (Medical Mysteries)

1. U.S. collect call: 1.305.269.2521.
2. U.S. toll free: 1.866.902.7775.
3. Fax: 1.800.476.1160.

Interesting, jojoco. We aren’t there yet, but I’ll hang on to the numbers!

I have been offline for several weeks and missed this post. I am so sorry your family and DGD are going through this medical nightmare. My thoughts are with you.

I'm so very sorry you and your family are still struggling with this. I've not been able to read through all the updates but just read that strep can sometimes cause weird tastes in the mouth which could explain why things she likes and used to eat she's not because they don't taste the same. Maybe i missed it but has anyone suggested this?

Bb, thinking of you all! I hope for good news. ❤️

Thanks. More testing today. Still no definitive diagnosis. Monday made 3 weeks in the hospital, this go-around. In the past 32 days, she’s been out of the hospital only 2 days. I don’t know what it does to a child mentally or to her siblings.

Aww. It's tough now, but kids are so resilient. Hope you get answers and a plan soon.

bb, I’m so sorry there’s still no diagnosis. I won’t cuss out loud, but am cussing inside. :(

(But still sending positive thoughts and energy, too.) ❤️

Aww, bbstx I am sorry to hear that she is still having trouble. Does the hospital have child life specialists?

Child life specialists are health care professionals who help children and families navigate the process of illness, injury, disability, trauma, or hospitalization.

So sorry to read that she is still in the hospital. I assume that there is a Child Life department at the hospital? I hope the specialists there are able to provide supports to your granddaughter and family. I do think it's wise to keep the siblings in mind. Kids at that age are so egocentric and can have difficulty making sense of big changes. This could be a good thing for the parents to bring up with the Child Life and/or social work staff at the hospital. Thinking of you all.

I agree that kids are resilient, amazingly so. DGS generally seems oblivious but when we were having our afternoon snack on Monday, he said, ”I think we ought to pray for [my sister].”

Jinx, hold my beer…..

Just saw the additional comments. Yes there is a Child LIfe department. They stop by daily or almost daily. I don’t know exactly what they are doing. I know that at DD & DSIL‘s request, they were going to see if they could determine if the eating issue is real or self-induced. I forgot to ask how that turned out.

Ohh bbstx, how dear

Oh my gosh, your dgs. What a love.

Bbstx, your dgs is a real gem. So sweet!

I’m so sorry you still don’t have the answers you need. I’ll be over in the corner with your dgs.

Hi bbstx. I've attached a link to the Connecticut Children's Child Life department. It provides a pretty good outline of what Child Life specialist work covers. I used to collaborate with them (as well other pediatric hospitals) when supporting a hospitalized student, their families, and very often the siblings. Sometimes I needed to pull in the hospital social worker as well. The Child Life staff were also great at working with the child's school and did lots to create experiences and routines that recreated a typical child's life while in the hospital. They are not medical professionals nor licensed mental health professionals typically. Their expertise lies primarily in understanding child development in the context of challenging situations. P.S. Your grandchildren sound so sweetChild Life

https://pediatrics.duke.edu/divisions/gastroenterology-hepatology-and-nutrition

bbstx, my sister spent a month in Texas Children's when we were young and I have friends whose children have been hospitalized for a month or more and/or repeatedly. I think it changes most to be appreciative of care, medicine in general and compassionate for what others may have to deal with. It only has negative impacts if the family and medical staff treat it as a weakness, problem or reason to be entitled. As for siblings, if they are involved in .knowing what is happening and spend time with the sibling, I think it is much the same.

I was in high school when my sister was in the hospital. I cooked meals for myself, my brother and my father, I visited my sister and I stayed overnight with her when I was out of school for the holiday break. It gave my mom and dad a break, gave my sister and I bonding time and me a way to be helpful (trips to get ice or juice, etc -- simple things that empower even a younger child). When my aunt sent a box of oranges from Florida and we took fresh squeezed orange juice to my sister, then told my aunt how wonderful it was -- she sent another box and taught me about things you can do to help or go an extra mile and how much it can bring joy to others.

I watched children with leukemia on her floor battle their disease, their families, and a couple didn't go home. I gained so much respect for the doctors, nurses and other families. In the years since, I've seen them treat and save other lives. When my parents passed, we honored them with a donation to the new TCH campus -- and DH and I matched it, we've become lifetime ambassadors and supporters of the hospital. Many children who spend time in hospitals go on to be nurses, doctors, therapists or medical researchers so they can help others and save lives. That's the kind of impact it can have. It doesn't have to be negative.

Wow - I just read through everything. My heart just breaks for all you and your family are going through. I wish House was a real diagnostician. I'd recommend him. 😥

bbstx, sending you and your family continued prayers, I hope you are getting closer to a diagnosis and plan, and that your cousin proved to be a good resource. Perhaps she can help point you in the right direction in terms of a research facility.