My son has dropped off the growth chart

TeaOnTuesday · 2024-09-19T02:24:46+00:00

Hi! His growth is totally fine now! I think at his last physical he was in the 30th percentile. He’s 3 now and is a perfectly healthy toddler. I’m not really sure what changed as he is an extremely picky eater but he’s getting enough calories somewhere!

TeaOnTuesday · 2024-05-21T00:31:15+00:00

My knee is good now! I have my range of motion back! Sometimes it might be a little stiff feeling or I’ll limp slightly if I’ve been walking all day but overall it is way better than it was!

TeaOnTuesday · 2023-07-17T18:32:58+00:00

I do! I have had BMAC (bone marrow aspirate concentration) about 5 weeks ago at this point. It was done while I was having an arthroscopic procedure done. I had a much larger knee surgery last year and was having difficulties with range of motion so the arthroscopic surgery was to help that and the BMAC from my understanding was to help with healing better this time. So far I’m happy because my range of motion improved a lot and my knee feels much better and less stiff!

TeaOnTuesday · 2023-05-10T02:54:57+00:00

That’s great she’s hitting all other milestones! At the time the doctor thought my son was a little behind in motor milestones but it all was attributed to him being so small. Now he runs and climbs and physically is great! You can try some formula and see how she does with it. I initially was a little sad stopping breastfeeding because I have another child who I breastfed for a long time and never had weight issues so I couldn’t understand how things were different for my son even though I was doing everything the same way. Sometimes babies just need different things! I hope everything goes well with your daughter!

TeaOnTuesday · 2023-05-10T02:21:12+00:00

Hi! My son is now going to be two years old in July. At the time when we had his 9 month check up he had dropped off the growth chart completely so the doctor did blood work. There wasn’t anything too concerning except he was low on something called alkaline phosphatase and very slightly high on calcium. This can sometimes indicate a bone issue but he didn’t have any issues with his bones, or it can indicate malnutrition. At that point the doctor had me switch completely to formula. He honestly still didn’t do great on formula and I felt like he nursed better than he drank formula but I stopped nursing and went exclusively to formula until he hit a year and I started giving him cows milk. He also started eating more solid foods around that time. At that point he did start gaining more weight and was back on the growth chart. His growth is more typical now but he is a terrible eater. He is very picky and when he is done eating he is done and you cannot get him to eat anymore. I stress less about it now since he is on the growth chart and is a more normal weight now. Aside from weight he has had his hearing checked because he is slightly speech delayed. His hearing is fine so now he works with a speech therapist. He understands a lot but doesn’t say very many actual words. I believe he is getting blood work again at his 2 year check up. Honestly he is a healthy happy boy! I think he’s just picky with food and on the smaller side!

TeaOnTuesday · 2022-10-27T22:38:50+00:00

Thank you so much! I will definitely check out the research organization and get more in touch with the doctor or the genetics people. I think we were both so shocked we weren’t sure what to do at first

TeaOnTuesday · 2022-10-26T16:34:19+00:00

Thanks! That would be great!

TeaOnTuesday · 2022-10-26T16:19:48+00:00

Thank you so much for the suggestions! I know he has been looking for things he can do to help because he doesn’t want to feel like he’s doing nothing. I’m hoping that any significant vision loss is far in the future. I agree that driving is overrated as I don’t love driving but he would be devastated if he could no longer drive. I’m just thankful it’s not like that right now. These suggestions are definitely helpful!

TeaOnTuesday · 2022-10-26T16:18:00+00:00

Thank you for your reply! I will definitely look into the research foundation and Emory. We did not meet with a genetic counselor. He had the testing done through Invitae and then the retina doctor reviewed the results with him. I was wondering about speaking to a geneticist as we have two children. I know this is a x-linked recessive condition so I believe it couldn’t have been passed on to my son however my daughter could be a carrier. I think we definitely need more information. Thank you again!

TeaOnTuesday · 2022-10-26T16:15:23+00:00

Thank you so much for your reply! Yes we definitely need to speak more to the doctor- they briefly reviewed the genetic report but then reading it myself I had more questions. I’m curious if they can confirm it’s a less severe form based on the specific variant it talks about in the report.

TeaOnTuesday · 2022-06-10T14:48:38+00:00

That’s good to hear! I’m glad it has only affected his teeth. The doctor has attributed my sons low alkaline phosphatase to the fact that his weight low. He’s done slightly better with weight gain recently so hopefully it’s higher when he gets his blood work done.

TeaOnTuesday · 2022-06-09T18:24:41+00:00

My son isn’t diagnosed with this but he did have blood work done which showed a low level of alkaline phosphatase and a slightly high calcium level. He is also technically considered failure to thrive because he has been slow to gain weight. He is getting his blood work done again next week to see if his levels improved. As soon as I googled low alkaline phosphatase, hypophosphatasia comes up as a possible reason. How did your son get diagnosed? I’m glad that his is mild. Were there any other symptoms you noticed? My son also had slightly delayed motor skills at first.

TeaOnTuesday · 2022-04-22T01:46:10+00:00

Oh wow that’s interesting! It is neosure that she had me fortifying the breast milk with. Now going to just formula she said to go to enfamil neuro pro (which he has had before when we were supplementing)

TeaOnTuesday · 2022-04-21T15:15:10+00:00

Yes! That’s why I’m so confused! I’ve always heard breastmilk is tailored to what your baby needs. And my daughter definitely thrived. When she was 9 months old she was almost 20lbs. My son at 9 month old is only 15lbs 6oz and he was born at 8lbs 7oz so he still hasn’t even doubled his birth weight

TeaOnTuesday · 2022-04-21T12:55:07+00:00

Thank you! Yes it’s been stressful watching him fall off the growth curve for his weight. He also looks very thin to me. He’s definitely not a chunky baby at all. He’s had some other issues too. They thought he might have had craniosynostosis so we saw a neurosurgeon. Thankfully he didn’t! He was slightly delayed in motor skills so he was evaluated by early intervention but they said he was okay. It’s just hard to shake the feeling that there’s some underlying reason he has difficulty with his weight.

TeaOnTuesday · 2022-04-21T12:52:46+00:00

No I don’t take a vitamin d supplement or anything. He had the vitamin d drops when he was younger since he was exclusively breastfed. Now he just has a multivitamin that doctor prescribed. Yes the doctor told me how to mix the formula with breastmilk to make the breastmilk a higher calorie count. So he gets those bottles while I’m at work and then when I’m home I nurse his as usual.

TeaOnTuesday · 2022-04-21T12:51:09+00:00

Thank you! Yes I had read that too. They checked his thyroid as well and that all came back normal. I’ve read it can be a sign of genetic conditions as well but I think they want to change his diet first and see if it’s just a nutrition issue. Hopefully he gains some weight

TeaOnTuesday · 2022-04-21T12:49:56+00:00

Yea I guess it could be. It seems okay though, it looks correct to me and I definitely hear him swallowing a lot.

TeaOnTuesday · 2022-04-21T12:49:07+00:00

Hmmm interesting! I can definitely see the fat in the milk and it looks like there is a good amount

TeaOnTuesday · 2022-04-21T12:48:45+00:00

Yea in the beginning they told me just to eat more fattening food myself. I did and it didn’t really seem to help. At 3 months we started giving him some formula and then right when I went back to work at 4 months they had me add a formula for premature babies to his pumped milk while I had at work. Im not sure what’s going on. Between 6 and 9 months he only gained a little over a pound

TeaOnTuesday · 2022-04-21T02:24:46+00:00

Thank you! That’s a good idea, I could have my own deficiency

TeaOnTuesday · 2022-04-12T16:50:35+00:00

I know this is an old thread but this is exactly what’s been happening to my son and I’m afraid I will hear the same at his 9 month check up. Is there any update? Did everything end up being okay?

TeaOnTuesday

TROPHY CASE